Well, it has been some time since my last blog. It’s hard to believe how much time has gone by. It seems like there is so much less time in the Fall and Winter months. Days are short and everything feels compressed. Lately I’ve been thinking about the past year and reflecting on all of the changes in Liam and all of the things we have been able to provide him over this past year. This led me to thinking about all of the love and support and generosity we have received this year, which has allowed us to pursue so many interventions and reach so many goals. It’s been such an amazing feeling to know there are so many people out there who know about Liam, care about Liam, and are rooting for him. It makes me feel like we are truly part of a community and has lessened the feelings of isolation I’ve lived with over the years. So thank you for caring and thank you for your support, generosity and love.
Now that it is a new year, I’ve felt a pull to get back to writing and sharing. I wanted to reflect on the accomplishments we’ve made this year. It is so easy to lose sight of the steps forward and goals met. I’d like to begin documenting these milestones – to look back on when feeling low, to remember where we once were, and to update everyone on Liam’s progress.
For starters, thanks to all of the generous donations we have received, we were able to bring a Son-Rise Instructor to our home for two days of training. That was a major goal accomplished and filled me with a lot of motivation and greater conviction. With the support of our amazing team, I was encouraged to recruit volunteers for our Son-Rise program. I couldn’t believe the response we received and, as a result, we were blessed with many volunteers to help keep Liam engaged in a full time program. Having volunteers also brought something really special to our program – something that is hard to put into words. Knowing that these people were here to help Liam, to learn and grow as individuals was inspiring. So, thank you Laura, Devon, Nina and Jessica for helping to recruit and train volunteers and a big thanks to Sarah, MoniQue, Soly, and Jessica for many hours spent in the playroom loving and playing with Liam.
Much of the time I feel like I quickly grow used to Liam’s accomplishments, which then become his new baseline of functioning. When I look back and really think about how he’s grown over the past year, it’s really quite remarkable! One childhood rite of passage that Liam accomplished this year was learning to ride a bike without training wheels. This was something that I so wanted for Liam but feared was out of his reach. He just didn’t have the strength and ability to balance – plus, he really didn’t care about losing the training wheels. I heard about a bike camp for special needs kids that comes to Portland for one week in the summer. http://www.losethetrainingwheels.org/
This camp uses specially designed bikes to help kids with a variety of disabilities learn how to balance on two wheelers and is successful in getting a high percentage of kids riding in one weeks time. I signed Liam up but the camp was already full. Fortunately, Liam was the first kid on the waiting list and, as luck would have it, he made it into the camp! It was actually a pretty rocky week for Liam – he was irritable and melting down a lot and then on day three of the camp had a very short grand mal seizure in the morning. He ended up making it to camp that day despite his seizure and actually had the best day of the whole week – go figure. Liam was supported by a team of 4 led by Richard, a teacher at a local elementary school, and three young boys (middle/high school aged). They were so patient and wonderful with Liam. It was a pretty amazing group of people. Despite Liam’s emotional issues, he made it on to a two-wheeler by the end of the week. He wasn’t riding independently very well, but he was doing it. The camp put a push stick on the back of his bike so that we could give him a little support while riding at home and his training wheels were a thing of the past. I took him to the track every day to practice riding his bike and in a very short time Liam was riding independently! He still needs to work on starting and stopping – but he is riding and loving it!
Thinking about growth over the past year brings me to just how much Liam has grown! He gained 5 pounds this year and grew over 3 inches. This is unprecedented growth for him. He is now 52 pounds and (at last measure) 51”. My guess is that he is actually a little taller than that because he’s grown out of all of his pants. We attribute much of his growth this year to starting him on methyl B12 shots. We were able to get back to seeing a DAN! Doctor this year and found a very autism DAN! Friendly pediatrician. As a result, we have been able to implement more biomedical interventions and B12 has been one of the most helpful things we have done. Not only has Liam grown much more than any other year in his whole life, he is stronger and sturdier than every before. We’ve seen lots of good improvements in his gross motor skills and overall confidence in his body.
In addition to Liam’s motor skills and growth, we have also seen gradual improvements in Liam’s language skills since starting B12. I’m sure that some of these gains can also be attributed to his therapy program, but some of the gains are things that have just come out of the blue and are things that you just can’t teach him to say. For example, Liam will say things like “that was fun” or “I like going fast.” He’ll comment about things that he sees “That’s a big car.” He has started asking “wh” questions. The complexity of his sentences has really grown and he uses more words and all parts of speech. His speech has become clearer and it is much easier for him to imitate speech when asked. I remember when I started training our volunteers about a year ago they struggled to understand about 60% of his speech. Today, it is rare to experience someone who can’t understand most of what he says. He still has lots of articulation errors but, despite that, people usually understand him without any translation from me. Liam has also been using language in new ways, ways that seem so normal for a child but definitely not normal for him. The other day Liam and Claire were in the basement playing together and I called down to them to come up for dinner. I hollered “Liam!” to which he responded “what?” “Come up for dinner.” “Okay!” This may seem small, but this was new for him. He even used the same tone and inflection that Claire would use. He gets our attention to tell us about things that interest him and for some reason he loves to point out babies and boys to us. He’ll say “mommy, that’s a boy.” It cracks me up.
Liam has also been able to take part in a lot of recreational classes in our community. This year he has continued with gymnastics and has also enjoyed two different dance classes, a circus arts/trapeze class, and has just started a class called “fun fit kids” that allows Liam to play interactively with other kids twice per week. I’ve grown much more confident in entering Liam into new classes. He has shown the ability to enter new classes without issue and is participating in his classes with little to no support. It’s just great to see him have the opportunity play with his peers and thrive in these settings.
This past holiday season Liam really seemed to get holidays – especially Christmas. He was so excited for Christmas and all of the rituals we have shared over the years. It was so much fun to see his excitement and joy about decorating the tree, hanging up the stockings, etc. He began talking about Halloween (another favorite holiday of his) when school started and talking about Christmas the day Halloween was over. Everyday Liam would say, “go to the pumpkin patch…cut the pumpkin… ride a tractor… get a costume… go trick-or-treating.” He talked about these things and asked about these things over and over with glee in his voice. Then it was “get the tree…put the lights on…get the stockings (which he called the disgustings - that took us a while to figure out)…Santa’s gonna come…open the presents.” Now we are on to his birthday. Liam has enjoyed these holidays for several years, but it was his anticipation and ability to verbalize about it that was new. It was such a wonderful holiday season to finally get to see Liam anticipate Santa coming on Christmas Eve with all the wonder and joy of childhood.
This past year I was introduced by our Son-Rise Instructor to a book titled “The Brain that Changes Itself.” This book is all about the history and science behind the concept of brain plasticity. It is fascinating in that it explores how neuroscientists have discovered that the brain is plastic at any age and capable of miraculous change with specific input. Naturally, the younger one is and the less brain damage one has the easier it is to bring about change but, contrary to previous beliefs, the brain can recover lost function at any age. This book inspired me to seek out new interventions for Liam and led me to neurodevelopmental therapy. We decided to connect with NACD (National Academy for Child Development) to add this type of therapy to Liam’s home therapy program. Prior to our initial evaluation in September I read several books about the history of neurodevelopmental therapy for children with brain damage and tried to learn all that I could. One of the things I learned was that running is an extremely beneficial activity for brain development. So, Liam and I started running together. We began in July and, to my surprise, he just loves running! We often go to a track at a local park and Liam runs with me for a mile (sometimes longer) and then rides his bike while I get in a few more laps. Being out on the track with Liam has been such a positive experience. Out there he gets lots of kudos from perfect strangers who cheer him on and call him “track star” and “marathon boy.” Out there, his disability seemed invisible. Liam and I are still running and going strong. He asks to run every day and most days we have lots of fun. He particularly likes to run when it is pouring down rain. Of course he jumps in every puddle and comes home soaking wet and cold, but happy and content. Running has improved his gait tremendously as well. I feel like I see his brain becoming more organized right before my eyes.
We’ve been at our neurodevelopmental program for 3 months now and just had his three- month re-evaluation. It’s pretty intense and takes up a lot of his time, but he still has adequate time in the play-room and gets to participate in his classes. Getting started was a little bumpy as Liam had to adjust to change in his daily schedule but he quickly accepted the changes and seems to like his new program, which we call “school.” We have already seen some nice changes in his functioning, especially in his motor skills. We are excited to see where this new venture takes us. I guess it is nice to know that there are always new and exciting things to try in our quest to help Liam realize his potential.
Liam will turn 9 years old on February 3rd, which is so hard to believe. We’ve had our ups and downs and I’m sure we will continue to be on a bumpy ride. We look forward to seeing what gains Liam will make in this 9th year of his life. It will be fun to look back over this entry one year from now and remember where we were one year ago! Happy New Year!
Friday, January 22, 2010
Sunday, September 20, 2009
Who Is It That Needs Saving?
In a recent blog entry I wrote about feeling a need to “save” Liam from autism. Feeling that autism would steal his soul and needing to combat this with every fiber of my being. As I wrote the words “save him” I felt a strong urge to erase them. I kept the words because they were true for the time in which I was writing about. In the early years of discovering that Liam had autism and trying to help him, I did feel that I was trying to save him. Today, I feel quite different. I don’t feel that Liam needs saving from anything. I see him as a complete and whole being who definitely has a beautiful and captivating soul. I have been contemplating why I felt that way back in the beginning and why I no longer see things quite the same. All that I can come up with is that autism was a new concept to me. Neither Gary nor I have relatives with a developmental disability. Both of us have actually lived quite “fortunate” lives in that neither of us has known any real type of hardship. We both come from intact families with healthy parents and siblings. Grandparents have lived to older ages. I grew up with strong relationships with my extended family and always knew there were large numbers of people who cared about me and would be there to help me if needed. Gary and I also grew up in financially stable homes and have never really had to struggle beyond the typical difficulties of the teenage years. Autism coming into my life was a complete unknown – something I had never really thought about and something of which I had very little real knowledge. I felt like autism had happened to Liam and I wanted it to go away – to know it was not welcome in this house. I was afraid of it because I didn’t know what to expect. I had no idea what Liam would be like and I had a lot of fear that Liam would be lost to me. The idea of a child who may never speak was a completely foreign concept to me at the time and it terrified me.
I believed with every fiber of my being that I could save Liam from this fate. I could not visualize Liam at an older age with autism. It was just something I could not picture. It’s funny to think about that because there has really been no time in Liam’s life that I have not felt anything but completely bonded to him. I have always felt a strong connection to Liam and I believe I have always understood him, just as much as I understand Claire. Sure, there are times I wish Liam could tell me if he feels sick or is sad or something, but there are lots of times when I wish I knew how Claire felt about something too. Even though she can speak fluently, I don’t always know how she is feeling either because she chooses not to tell me or she can’t explain it in words.
I used to think that it was easy to bond with Liam and know him fully because he was a baby, less complicated than he would one day be. I also felt that it was easier for me to feel more at ease with his autism because as a very young child it was much easier to protect him, to keep him from getting hurt or experience unhappiness. Most of the times when my grief would get the best of me were thinking about what would Liam experience at age 5, age 8 or older. What would it be like to have a son, a child I love fiercely, potentially not have a “friend” or play sports, or have classmates to invite to a birthday party? Grief and fear was very rarely triggered by something I was experiencing in the moment with Liam. Even today, most of my fear, anxiety, and sadness is about the future, the unknown. What will happen to him if we don’t get his volatility under control? What will it be like when he realizes that he is “different?” How will having a disabled brother affect Claire? Will there be a time when she rejects Liam (at least around her friends)? What if he never accomplishes the things I think he can?
Now that we are at age 8, I realize that Liam is really okay. He is a happy child with a full life and he has lots of people that care about him and love him just as he is. He has lots of interests and I don’t think that he feels much unhappiness about his life at all. No, he doesn’t really have what others would think of as “friends.” Claire is his best and really only true friend. He’s never had a play-date that wasn’t arranged by me and facilitated by a therapist or myself. His best birthday parties have had only adults and his sister as guests. He doesn’t get invited to many birthday parties and when he does get invited to one we usually don’t send him because he gets obsessed about opening the presents and is usually pretty agitated throughout. When we have attempted a party, he usually has to be taken home early. It’s odd to be living through things that used to cause me sleepless nights or hit me over the head with unbelievable grief and realize that the fear was much worse than reality. Reality is really often quite pleasant and enjoyable.
With each passing milestone I feel my acceptance for Liam, all parts of him, growing and deepening. He is my beloved son, a human being with gifts and talents and humor and complicated emotions, and weaknesses. There are times that getting through the day with him is tough, mostly because of his moodiness, but nothing ever changes the way I feel about him or my belief in him. I still worry about him. I can’t help but worry about his future. However, now that I have 8 years of daily experience living with a child with a severe disability my fear is less. I still can’t picture Liam at age 12 or 16 or 20. I can’t picture Claire at those ages either for that matter. I don’t know what they will be like. I don’t know what difficulties and triumphs will come into their lives. I do know that we can handle what comes our way. I do know that giving to both of these children what I feel is right in the moment is all that I can do. This life truly belongs to each of them, I am just here to guide them and support them and protect them as I can. How they persevere through the hardships of life is largely up to them. How they choose to accept themselves is really their choice. Accepting them for who they are, no matter what, is my choice.
I continue to have infinite belief that Liam can accomplish anything he wants. I continue to seek out any avenue of intervention that I believe will not cause him harm or discomfort and that I believe offers something to his growth and development. I view it as something he needs me to do to give him the best chance at a happy and fulfilled life. I don’t know what choices he would make for himself. If he could tell me what he wanted, would his daily life look different? I see it as my job to do what I think is best for him and then look to his response to determine when it is time for a change. I feel that I have helped to bring Liam to a point in his development that he can handle many of the things life requires and has to offer – vacations with his family, playing with his sister and other children, running errands, holidays, etc. I have helped bring him to a point where he enjoys talking and works to expand his own communication skills. Today he is observant of his environment, socially motivated to learn, engaged and open to life. I now see my role as letting go of needing to protect him so much. To trust in him, that he will bring good things into his life. To believe that others will love him and see his beauty and believe in him just as I do. Of course not all people will, but that is human nature. I have to work on letting go of that, not letting it hurt me so much, and not fearing, should Liam be treated unfairly, that he can’t handle it. In letting Liam out into the big, sometimes scary world, I believe that I am allowing other people, people just like my former self, who have no experience with disability and who may fear it, to know this beautiful person – to see that there is nothing to fear, he’s just like you or me. Perhaps if I had had the opportunity to meet a “Liam” in my childhood, I would have never felt the need to save him.
Thinking about all of this has begged the question “Who is it that needs saving?” Having Liam has actually saved me from a life of mediocrity. Yes, there have been tough times, times of extreme anguish, grief, loneliness, fear, poverty, anger. My former life was probably more comfy. Discomfort and stretching the boundaries of my beliefs, attitude, and scope of the world around me has given me a sense of strength that I would not have if it were not for Liam. All of my adult life I have struggled to find my true passion. I have wondered about my purpose. I didn’t choose autism, I feel that it chose me, and because of that I have a greater passion than I have ever known.
Parents want one simple thing for their children, happiness. Expecting parents commonly say, “I just hope for a healthy baby.” Why? The very idea of a baby with an illness or disability evokes fear that your child’s life will be something other than happy. When something comes into your life that you feel threatens your child’s potential happiness it causes you to reevaluate how you live your life and what is important to you. Suddenly, things that seemed so important disappear. For me, this meant not really caring about how my house looked, or if I had a cute haircut or stylish clothing. I don’t mean to belittle the importance and value of caring for yourself and wanting nice things, but when it comes right down to it, I would gladly give up anything to have the ability to do for Liam what I believe is in his best interest. We have had to give up lots of things. Even though I earned a masters degree, it was easy for me to put my career on the back burner because Liam needed me to be home. Gary and I have enjoyed renovating old homes as a hobby and, pre-Liam, we spent a lot of time fantasizing about our future “forever house.” It’s been easy to let go of wanting in this way, Liam’s needs are more important, more invigorating. Now our idea of a good future home is one that is simple, needs little maintenance, far away from a busy street, and cheap. Early on in trying to provide for Liam’s needs Gary and I had to sell almost all of our furniture to afford treatments for him. We held a garage sale and felt like we hit the jackpot when we made over $700. Easy. I didn’t care about parting with objects and living sparsely – less to take care of, to occupy my mind. Almost in an instant, our priorities changed and my joy came from feeling like I was taking control of what felt like an out of control situation. There have also been decisions that have been hard, but necessary. In the past we had to limit our holiday celebrations to small gatherings, usually held at our home, because Liam could not handle long days with no structure and lots of sitting around visiting. He needed his routine and lots of 1:1 time. I like sitting around, eating, drinking, and visiting with family, but with Liam melting down and/or worrying about when he would next melt down, holidays as usual were not fun for us or for Liam. Playing “creative finances” each month to try and make ends meet is a stress, but I also recognize that even though the way we are raising Liam taps our resources greatly, this is our choice and we are happy with it. Having autism come into our lives has forced us to live in the present. To make choices and decisions that work for us in the moment and to let go of worrying about the future or what others might think. It is kind a kind of freedom that I didn’t know before. I think I may have looked upon someone living their life the way we live today with a sense of sadness or pity, wishing that things were easier or that they had more. I now look at it as being really in touch with your values and living your life in accordance.
My concept of a “good life” has broadened. I believe that Liam can have a good life even if he were to stay exactly as he is today. This would depend upon my attitude and definition of a “good life.” If I limit my idea of this to a more conventional definition, I would probably feel pretty pessimistic and fearful. What comes of Liam is not in my control but my attitude about him is. It’s really all I have control over. I struggle with my attitude every day. It’s hard not to want more when your child is faced with a pervasive disorder. It’s hard to conceive of a happy or good life for Liam as a teenager or adult because we have not experienced that phase of life, it is foreign to me. I have experienced growing with this child through lots of phases of life and I know that each phase has been hard but also wonderful. Why should that not hold true into the future? So, today, my attitude is that anything is possible because the value of Liam’s future is in the eye of the beholder. I can choose to live in the moment, making decisions that work for him and for our family even if these decisions are hard and involve sacrifice. I can let go of old dreams to make way for new dreams. I can choose to be happy and strive for a great life even in the face of hardship. I can hold acceptance for Liam exactly as he is forever while also having eternal belief in his capabilities. I don’t have to choose between these two ideas. I can no longer fear autism. It is for all of these things that I can truly say that I am the one who has been saved and I owe this to my son.
I believed with every fiber of my being that I could save Liam from this fate. I could not visualize Liam at an older age with autism. It was just something I could not picture. It’s funny to think about that because there has really been no time in Liam’s life that I have not felt anything but completely bonded to him. I have always felt a strong connection to Liam and I believe I have always understood him, just as much as I understand Claire. Sure, there are times I wish Liam could tell me if he feels sick or is sad or something, but there are lots of times when I wish I knew how Claire felt about something too. Even though she can speak fluently, I don’t always know how she is feeling either because she chooses not to tell me or she can’t explain it in words.
I used to think that it was easy to bond with Liam and know him fully because he was a baby, less complicated than he would one day be. I also felt that it was easier for me to feel more at ease with his autism because as a very young child it was much easier to protect him, to keep him from getting hurt or experience unhappiness. Most of the times when my grief would get the best of me were thinking about what would Liam experience at age 5, age 8 or older. What would it be like to have a son, a child I love fiercely, potentially not have a “friend” or play sports, or have classmates to invite to a birthday party? Grief and fear was very rarely triggered by something I was experiencing in the moment with Liam. Even today, most of my fear, anxiety, and sadness is about the future, the unknown. What will happen to him if we don’t get his volatility under control? What will it be like when he realizes that he is “different?” How will having a disabled brother affect Claire? Will there be a time when she rejects Liam (at least around her friends)? What if he never accomplishes the things I think he can?
Now that we are at age 8, I realize that Liam is really okay. He is a happy child with a full life and he has lots of people that care about him and love him just as he is. He has lots of interests and I don’t think that he feels much unhappiness about his life at all. No, he doesn’t really have what others would think of as “friends.” Claire is his best and really only true friend. He’s never had a play-date that wasn’t arranged by me and facilitated by a therapist or myself. His best birthday parties have had only adults and his sister as guests. He doesn’t get invited to many birthday parties and when he does get invited to one we usually don’t send him because he gets obsessed about opening the presents and is usually pretty agitated throughout. When we have attempted a party, he usually has to be taken home early. It’s odd to be living through things that used to cause me sleepless nights or hit me over the head with unbelievable grief and realize that the fear was much worse than reality. Reality is really often quite pleasant and enjoyable.
With each passing milestone I feel my acceptance for Liam, all parts of him, growing and deepening. He is my beloved son, a human being with gifts and talents and humor and complicated emotions, and weaknesses. There are times that getting through the day with him is tough, mostly because of his moodiness, but nothing ever changes the way I feel about him or my belief in him. I still worry about him. I can’t help but worry about his future. However, now that I have 8 years of daily experience living with a child with a severe disability my fear is less. I still can’t picture Liam at age 12 or 16 or 20. I can’t picture Claire at those ages either for that matter. I don’t know what they will be like. I don’t know what difficulties and triumphs will come into their lives. I do know that we can handle what comes our way. I do know that giving to both of these children what I feel is right in the moment is all that I can do. This life truly belongs to each of them, I am just here to guide them and support them and protect them as I can. How they persevere through the hardships of life is largely up to them. How they choose to accept themselves is really their choice. Accepting them for who they are, no matter what, is my choice.
I continue to have infinite belief that Liam can accomplish anything he wants. I continue to seek out any avenue of intervention that I believe will not cause him harm or discomfort and that I believe offers something to his growth and development. I view it as something he needs me to do to give him the best chance at a happy and fulfilled life. I don’t know what choices he would make for himself. If he could tell me what he wanted, would his daily life look different? I see it as my job to do what I think is best for him and then look to his response to determine when it is time for a change. I feel that I have helped to bring Liam to a point in his development that he can handle many of the things life requires and has to offer – vacations with his family, playing with his sister and other children, running errands, holidays, etc. I have helped bring him to a point where he enjoys talking and works to expand his own communication skills. Today he is observant of his environment, socially motivated to learn, engaged and open to life. I now see my role as letting go of needing to protect him so much. To trust in him, that he will bring good things into his life. To believe that others will love him and see his beauty and believe in him just as I do. Of course not all people will, but that is human nature. I have to work on letting go of that, not letting it hurt me so much, and not fearing, should Liam be treated unfairly, that he can’t handle it. In letting Liam out into the big, sometimes scary world, I believe that I am allowing other people, people just like my former self, who have no experience with disability and who may fear it, to know this beautiful person – to see that there is nothing to fear, he’s just like you or me. Perhaps if I had had the opportunity to meet a “Liam” in my childhood, I would have never felt the need to save him.
Thinking about all of this has begged the question “Who is it that needs saving?” Having Liam has actually saved me from a life of mediocrity. Yes, there have been tough times, times of extreme anguish, grief, loneliness, fear, poverty, anger. My former life was probably more comfy. Discomfort and stretching the boundaries of my beliefs, attitude, and scope of the world around me has given me a sense of strength that I would not have if it were not for Liam. All of my adult life I have struggled to find my true passion. I have wondered about my purpose. I didn’t choose autism, I feel that it chose me, and because of that I have a greater passion than I have ever known.
Parents want one simple thing for their children, happiness. Expecting parents commonly say, “I just hope for a healthy baby.” Why? The very idea of a baby with an illness or disability evokes fear that your child’s life will be something other than happy. When something comes into your life that you feel threatens your child’s potential happiness it causes you to reevaluate how you live your life and what is important to you. Suddenly, things that seemed so important disappear. For me, this meant not really caring about how my house looked, or if I had a cute haircut or stylish clothing. I don’t mean to belittle the importance and value of caring for yourself and wanting nice things, but when it comes right down to it, I would gladly give up anything to have the ability to do for Liam what I believe is in his best interest. We have had to give up lots of things. Even though I earned a masters degree, it was easy for me to put my career on the back burner because Liam needed me to be home. Gary and I have enjoyed renovating old homes as a hobby and, pre-Liam, we spent a lot of time fantasizing about our future “forever house.” It’s been easy to let go of wanting in this way, Liam’s needs are more important, more invigorating. Now our idea of a good future home is one that is simple, needs little maintenance, far away from a busy street, and cheap. Early on in trying to provide for Liam’s needs Gary and I had to sell almost all of our furniture to afford treatments for him. We held a garage sale and felt like we hit the jackpot when we made over $700. Easy. I didn’t care about parting with objects and living sparsely – less to take care of, to occupy my mind. Almost in an instant, our priorities changed and my joy came from feeling like I was taking control of what felt like an out of control situation. There have also been decisions that have been hard, but necessary. In the past we had to limit our holiday celebrations to small gatherings, usually held at our home, because Liam could not handle long days with no structure and lots of sitting around visiting. He needed his routine and lots of 1:1 time. I like sitting around, eating, drinking, and visiting with family, but with Liam melting down and/or worrying about when he would next melt down, holidays as usual were not fun for us or for Liam. Playing “creative finances” each month to try and make ends meet is a stress, but I also recognize that even though the way we are raising Liam taps our resources greatly, this is our choice and we are happy with it. Having autism come into our lives has forced us to live in the present. To make choices and decisions that work for us in the moment and to let go of worrying about the future or what others might think. It is kind a kind of freedom that I didn’t know before. I think I may have looked upon someone living their life the way we live today with a sense of sadness or pity, wishing that things were easier or that they had more. I now look at it as being really in touch with your values and living your life in accordance.
My concept of a “good life” has broadened. I believe that Liam can have a good life even if he were to stay exactly as he is today. This would depend upon my attitude and definition of a “good life.” If I limit my idea of this to a more conventional definition, I would probably feel pretty pessimistic and fearful. What comes of Liam is not in my control but my attitude about him is. It’s really all I have control over. I struggle with my attitude every day. It’s hard not to want more when your child is faced with a pervasive disorder. It’s hard to conceive of a happy or good life for Liam as a teenager or adult because we have not experienced that phase of life, it is foreign to me. I have experienced growing with this child through lots of phases of life and I know that each phase has been hard but also wonderful. Why should that not hold true into the future? So, today, my attitude is that anything is possible because the value of Liam’s future is in the eye of the beholder. I can choose to live in the moment, making decisions that work for him and for our family even if these decisions are hard and involve sacrifice. I can let go of old dreams to make way for new dreams. I can choose to be happy and strive for a great life even in the face of hardship. I can hold acceptance for Liam exactly as he is forever while also having eternal belief in his capabilities. I don’t have to choose between these two ideas. I can no longer fear autism. It is for all of these things that I can truly say that I am the one who has been saved and I owe this to my son.
Wednesday, September 16, 2009
Movie Review
Over Labor Day we took the kids to a movie. This is a rare event because we don’t always know how Liam is going to handle the theatre experience. The results have been mixed in the past depending on what the movie is and what kind of day he is having and what he has eaten, etc. But since we went to this movie I thought I would review it.
The movie we went to see was Up, the latest Pixar film. It was playing at a theatre that is part of a community center in a renovated elementary school that has bars and a restaurant and overnight rooms and a soaking pool and banquet rooms and one gym that is still a gym and another gym that was converted into a theatre, but instead of theatre chairs it had rows of sofas and comfy chairs and the best part is that you can drink beer and eat pizza while watching the movie. So, going into it I knew I was going to like this movie.
We went on Sunday before Labor Day and the movie started at 5:30. I was figuring we would get there at around 4:30 but didn’t account for Angie’s “getting ready” time so we didn’t really get there until 5:00 and it was already crowded. I was starting to not like this movie because the lines were long and it was filling up fast. Sure enough they sold out before we got through the line. Liam was already starting to have some trouble tolerating the wait in line and we were bracing ourselves for a meltdown as we told the kids we weren’t going to see the movie today. To our surprise, Claire was the one to lose it. She couldn’t understand why we couldn’t see the movie and began crying and didn’t want to leave. This of course always starts Liam on the same path but we decided to go to the restaurant and eat dinner. For Liam much of the time all you have to say is “fries” and he’s OK if he’s not too hungry to begin with. If he’s too hungry then waiting for the fries can be painful as he repeatedly smacks the table or knocks over saltshakers while saying, “Fries? Fries?” over and over. So, although I wasn’t enjoying the movie at this point, we successfully distracted both kids with dinner out and a promise to come back earlier the next day to see the movie.
The next day we came earlier and got through the line pretty quickly. We had pizza, popcorn, soda, and beer and we staked out a couch all to ourselves that had a table in front of it. So far so good. Liam sat on the aisle side by Angie. Claire was in the middle and I was on the other end. When we take Liam to movies it’s always good to have an exit strategy. We decided that if he needed to leave it was my turn to take him. He was already restless but so far I was enjoying the movie because Claire was easy to sit by and I had a beer in my hand. We just had to wait for the movie to start to see how Liam would do.
When Liam is restless or bored in a theatre or restaurant the first thing he starts saying is “Potty? Go potty? Wanna go potty?” And of course this time was no different. I had to take him knowing that this was just the first of many trips to the bathroom. In the bathroom Liam will stand at the urinal and flush several times before he’s even done and then walk to any other toilet with his pants around his ankles flushing as many times as he can before I am freed up enough to stop him. It’s hard to get him focused in a public restroom because there is so much to play with. He loves turning the faucet on and off and if there is an electric paper towel dispenser it is hard to get him away from that. All in all Liam is not very eco-friendly with the amount of water and paper that is wasted in public restrooms.
We got back to the couch and I settled back in with my beer. I took one sip and there it was again, “Potty? Wanna go Potty?”
“You just went Liam.” I said.
“What if he has to go poop?” Angie said. I knew she was going to say that.
So back we went and this time I just sat him on the toilet because I knew he wasn’t going to do it himself. At home he is fine by himself but like I said a public restroom is just too distracting. He sat there and started unrolling the toilet paper until I stopped him and he said, “All done?”
Back to the couch and the movie was starting. Oh, and I grabbed another beer on the way back even though I was barely started with my first one. I just knew I was going to need it.
So, Up is about an old man who is alone and is living by himself in an old house surrounded by development and he refuses to leave when developers want his property. The old man is voiced by Lou Grant from The Mary Tyler Moore Show. Lou Grant gets this idea to tie a bunch of balloons to his house and…
“Potty? Go Potty?”
“Come on…”
“Make sure you sit him on the toilet this time.” Said Angie.
“I did last time. He didn’t go. Come on Liam.”
“Yeah go potty.”
We went. Still nothing.
We came back and the movie was really getting interesting. There was a lot of dialogue and those parts were hard for Liam. If he wasn’t into what was happening on the screen he would kick the couch in front of us or smack his hands on the table or flop around or try to slide down to the floor. But there were exciting parts too and that is where Liam would start to get into it. The house floats up and away and there is a little kid that stows away on Lou Grant’s house and they end up in this weird land and get chased by a pack of dogs that are trained by this old explorer that lives in this land and…
“Potty?”
“Yeeees….”
This time we had success so I knew that I could say no to any more potty requests from here on out. I was really enjoying the movie and I didn’t want to be interrupted any more. Claire was also liking it and so was Angie. I was pretty sure Liam wasn’t going to make it through.
We got back to the couch and I was a little lost but still liking the movie. Lou Grant was having to match wits with the old explorer that turns out to be evil…
“Potty?”
“Nope.”
“Potty? Potty?!” Liam was starting to get louder.
“Liam, you don’t need to go.”
Liam started smacking the table again and it was becoming apparent that this was just going to escalate if I didn’t take him out of there. I won’t spoil the end of the movie for you because I don’t know how it ends.
“Come on Liam.”
We left the theatre and walked down the hall past the restroom.
“Potty?”
“No Liam.”
“No Potty.”
We left the building and got in the car. I figured we would drive around a little. I had to go to the bank anyway so we could kill time until the movie was out.
“Movie?” Said Liam
“Are you serious?” He was just not interested in the movie and now he wanted to go back in. I thought about it for about two seconds and said, “No let’s get some fries.”
“Fries.”
We drove to the bank first and that was a mistake because Liam had it in his mind that we were getting fries and did not anticipate any other stops before that. He started screaming and hitting and kicking the back of the seat in front of him.
“We are going to get fries buddy. We just have to stop here first.”
“Fries?!”
“Yes, we will okay?”
“Fries.” He was calming down a little but still unstable.
I finished at the bank and we were on our way to Burgerville for fries.
“Fries? Fries?!”
“Yes Liam We are getting fries.”
“Aw man…” He must have been hungrier than I thought because he was just really agitated.
We got to the drive through and I ordered the fries. There were a few cars ahead of us so it was taking longer than Liam’s liking. He was hitting and kicking the seat again and screaming, “Fries?!…Aw man!”
We got the fries and I knew once he ate them he would start to calm down but I didn’t dare give him the whole bag because I knew in the state he was in he would just throw them or dump them on the floor. I gave him one fry and he ate it. I started driving back toward the theatre. I gave him another fry and he threw it my head. I gave him another one and he ate it. He did pretty well for the most part but about every fifth fry was pinging me in the back of the head. He was a pretty good shot.
By the time we got back, the fries were gone and Liam was over his meltdown. We pulled into the parking lot and Liam said, “Movie?”
“Yep.” I said thinking that it was probably over by now. And even if it wasn’t I knew Liam wouldn’t sit through the rest of it. I was hoping I timed it right. We went back in the building and walked down the hall toward the theatre and there were Angie and Claire coming out. I did time it right.
So overall I give the whole movie experience two out of five stars but I’m thinking that score will go up as soon as I am able to rent it and sit in my basement with a beer watching it by myself. I’m really looking forward to that.
The movie we went to see was Up, the latest Pixar film. It was playing at a theatre that is part of a community center in a renovated elementary school that has bars and a restaurant and overnight rooms and a soaking pool and banquet rooms and one gym that is still a gym and another gym that was converted into a theatre, but instead of theatre chairs it had rows of sofas and comfy chairs and the best part is that you can drink beer and eat pizza while watching the movie. So, going into it I knew I was going to like this movie.
We went on Sunday before Labor Day and the movie started at 5:30. I was figuring we would get there at around 4:30 but didn’t account for Angie’s “getting ready” time so we didn’t really get there until 5:00 and it was already crowded. I was starting to not like this movie because the lines were long and it was filling up fast. Sure enough they sold out before we got through the line. Liam was already starting to have some trouble tolerating the wait in line and we were bracing ourselves for a meltdown as we told the kids we weren’t going to see the movie today. To our surprise, Claire was the one to lose it. She couldn’t understand why we couldn’t see the movie and began crying and didn’t want to leave. This of course always starts Liam on the same path but we decided to go to the restaurant and eat dinner. For Liam much of the time all you have to say is “fries” and he’s OK if he’s not too hungry to begin with. If he’s too hungry then waiting for the fries can be painful as he repeatedly smacks the table or knocks over saltshakers while saying, “Fries? Fries?” over and over. So, although I wasn’t enjoying the movie at this point, we successfully distracted both kids with dinner out and a promise to come back earlier the next day to see the movie.
The next day we came earlier and got through the line pretty quickly. We had pizza, popcorn, soda, and beer and we staked out a couch all to ourselves that had a table in front of it. So far so good. Liam sat on the aisle side by Angie. Claire was in the middle and I was on the other end. When we take Liam to movies it’s always good to have an exit strategy. We decided that if he needed to leave it was my turn to take him. He was already restless but so far I was enjoying the movie because Claire was easy to sit by and I had a beer in my hand. We just had to wait for the movie to start to see how Liam would do.
When Liam is restless or bored in a theatre or restaurant the first thing he starts saying is “Potty? Go potty? Wanna go potty?” And of course this time was no different. I had to take him knowing that this was just the first of many trips to the bathroom. In the bathroom Liam will stand at the urinal and flush several times before he’s even done and then walk to any other toilet with his pants around his ankles flushing as many times as he can before I am freed up enough to stop him. It’s hard to get him focused in a public restroom because there is so much to play with. He loves turning the faucet on and off and if there is an electric paper towel dispenser it is hard to get him away from that. All in all Liam is not very eco-friendly with the amount of water and paper that is wasted in public restrooms.
We got back to the couch and I settled back in with my beer. I took one sip and there it was again, “Potty? Wanna go Potty?”
“You just went Liam.” I said.
“What if he has to go poop?” Angie said. I knew she was going to say that.
So back we went and this time I just sat him on the toilet because I knew he wasn’t going to do it himself. At home he is fine by himself but like I said a public restroom is just too distracting. He sat there and started unrolling the toilet paper until I stopped him and he said, “All done?”
Back to the couch and the movie was starting. Oh, and I grabbed another beer on the way back even though I was barely started with my first one. I just knew I was going to need it.
So, Up is about an old man who is alone and is living by himself in an old house surrounded by development and he refuses to leave when developers want his property. The old man is voiced by Lou Grant from The Mary Tyler Moore Show. Lou Grant gets this idea to tie a bunch of balloons to his house and…
“Potty? Go Potty?”
“Come on…”
“Make sure you sit him on the toilet this time.” Said Angie.
“I did last time. He didn’t go. Come on Liam.”
“Yeah go potty.”
We went. Still nothing.
We came back and the movie was really getting interesting. There was a lot of dialogue and those parts were hard for Liam. If he wasn’t into what was happening on the screen he would kick the couch in front of us or smack his hands on the table or flop around or try to slide down to the floor. But there were exciting parts too and that is where Liam would start to get into it. The house floats up and away and there is a little kid that stows away on Lou Grant’s house and they end up in this weird land and get chased by a pack of dogs that are trained by this old explorer that lives in this land and…
“Potty?”
“Yeeees….”
This time we had success so I knew that I could say no to any more potty requests from here on out. I was really enjoying the movie and I didn’t want to be interrupted any more. Claire was also liking it and so was Angie. I was pretty sure Liam wasn’t going to make it through.
We got back to the couch and I was a little lost but still liking the movie. Lou Grant was having to match wits with the old explorer that turns out to be evil…
“Potty?”
“Nope.”
“Potty? Potty?!” Liam was starting to get louder.
“Liam, you don’t need to go.”
Liam started smacking the table again and it was becoming apparent that this was just going to escalate if I didn’t take him out of there. I won’t spoil the end of the movie for you because I don’t know how it ends.
“Come on Liam.”
We left the theatre and walked down the hall past the restroom.
“Potty?”
“No Liam.”
“No Potty.”
We left the building and got in the car. I figured we would drive around a little. I had to go to the bank anyway so we could kill time until the movie was out.
“Movie?” Said Liam
“Are you serious?” He was just not interested in the movie and now he wanted to go back in. I thought about it for about two seconds and said, “No let’s get some fries.”
“Fries.”
We drove to the bank first and that was a mistake because Liam had it in his mind that we were getting fries and did not anticipate any other stops before that. He started screaming and hitting and kicking the back of the seat in front of him.
“We are going to get fries buddy. We just have to stop here first.”
“Fries?!”
“Yes, we will okay?”
“Fries.” He was calming down a little but still unstable.
I finished at the bank and we were on our way to Burgerville for fries.
“Fries? Fries?!”
“Yes Liam We are getting fries.”
“Aw man…” He must have been hungrier than I thought because he was just really agitated.
We got to the drive through and I ordered the fries. There were a few cars ahead of us so it was taking longer than Liam’s liking. He was hitting and kicking the seat again and screaming, “Fries?!…Aw man!”
We got the fries and I knew once he ate them he would start to calm down but I didn’t dare give him the whole bag because I knew in the state he was in he would just throw them or dump them on the floor. I gave him one fry and he ate it. I started driving back toward the theatre. I gave him another fry and he threw it my head. I gave him another one and he ate it. He did pretty well for the most part but about every fifth fry was pinging me in the back of the head. He was a pretty good shot.
By the time we got back, the fries were gone and Liam was over his meltdown. We pulled into the parking lot and Liam said, “Movie?”
“Yep.” I said thinking that it was probably over by now. And even if it wasn’t I knew Liam wouldn’t sit through the rest of it. I was hoping I timed it right. We went back in the building and walked down the hall toward the theatre and there were Angie and Claire coming out. I did time it right.
So overall I give the whole movie experience two out of five stars but I’m thinking that score will go up as soon as I am able to rent it and sit in my basement with a beer watching it by myself. I’m really looking forward to that.
Friday, September 11, 2009
Glut 1 Deficiency - Could it be? Part 5
We went on working with our naturopath, early intervention services, and developing a home therapy program for Liam, intervening in any way we could. We hired a young woman named Katie, who was one of Liam’s day care providers, to be a “nannypist,” someone who would act as both a nanny and a therapist. Katie proved to be a wonderful addition to our lives. She was so dedicated to Liam. She read all of the books that I suggested and was just as driven to learn about autism and help Liam as I was. She was one of the only people in my life that I could really talk “on par” with about Liam, for she really understood what and why we were doing what we were doing. I trusted her implicitly and Liam adored her. We hired an ABA consultant who helped us develop an ABA home program. I began to work part time and Katie watched Liam and worked with him on the days that I was at work. Katie and I developed an eclectic program that we rotated throughout the day, including various interventions such as ABA, Floortime, and sensory integration. Most of our programming was pretty grass roots with Katie and I reading about how to do these therapies and just diving in, doing the best that we could. We couldn’t afford much in the way of consultation and, at the time, only had twice monthly meetings with our ABA consultant. I know that, should we have been able to afford more guidance and should I have understood Liam’s needs and the difference between all of these various interventions, our program could have been much stronger and more effective. Hindsight is always 20/20 and I know that. Despite this, I felt good about what we were doing and Liam definitely benefited.
Katie had some long days with Liam and we decided to enroll him in a gymnastics class and began taking him to the pool and the park to break up the day and allow them to get out of the house. One day I came home to find Katie feeling a little blue. “It’s just so hard to see Liam with all of these other little kids and to realize all of the things they can do compared to him” Katie said through tears. It was hard to hear these words from her – feelings and thoughts that I lived with, spoken out loud. It was hard for me to comfort her because I was fighting hard to conceal my deepest feelings about Liam. I still felt that in some way if I spoke these feelings out loud I was somehow betraying him. In that moment I also felt closeness to Katie that I don’t think I felt with anyone else in my life at that time; someone who loved Liam like a mother, someone who felt and was willing to speak about the pain I lived with each day. Katie and I also shared some joyous moments that I don’t think anyone but us could have really understood. We both knew Liam intimately. We knew things about him that no one else could possibly know. When Liam was about three years of age I pushed his early intervention team to evaluate him for Apraxia, a motor-based speech disorder. I had done a lot of reading about Apraxia and felt that Liam demonstrated many of the symptoms. In particular, Liam really couldn’t repeat anything we said. He would try, his mouth would move but nothing or the wrong thing would come out. He was really much better at self-generated speech. At times, words and sometimes whole phrases would pop out of his little mouth. I was stunned one day to hear this little child say, “dive da cah” as he pushed a little car around. This from a child who never even said mama or dada had just said a whole phrase that was appropriate to what he was doing. We never heard that phrase again. I tried to get it out of him, but nothing. On another occasion, Liam said, “More bubbles” when Katie was blowing bubbles with him. We stood and looked at one another shocked. We were working on him saying “buh.” Just as before though, we couldn’t get him to do it again. In fact, it would be many years before I would hear Liam actually put two words together. Katie and I shared these little victories together as well as the pain of not being able to get there again with Liam. Other symptoms of Apraxia that Liam showed were not having a consistent word for something. For example, for the word “open” Liam would sometimes say “Oh,” other times it would be “Oh-pah,” and yet at other times it would be “Oh-pah-pah.” It was maddening. He also dropped the endings of words and could not say a lot of vowel sounds. He couldn’t stick his tongue out in imitation or move his mouth, or any part of his body for that matter, on command. So on this day when Liam was three, Katie and I were there for his long awaited Apraxia evaluation. In my inexperience and naiveté I thought that if Liam were deemed Apraxic we would somehow get some type of speech therapy that would change the struggle we were in to help him learn to talk. I had mixed emotions about this evaluation. I hadn’t been too impressed with the speech therapists that had been working with Liam largely because he wasn’t making any progress and they didn’t seem to have an explanation for this or a plan. Some of them could not even get him to cooperate and participate in the session. I was desperate to help him develop verbal communication and I was angry, maybe unfairly at times, that no one seemed to have a strategy or plan for how we were going to get Liam talking. To my elation, the speech therapist that came to do this evaluation was amazing. She got Liam to sit in a chair, imitate her, and move his tongue. He made more speech sounds in that hour than I think I had heard come out of him over the past month. She also got him to lick a dumb-dumb sucker. Now if you can imagine two grown women (Katie and I) clutching one another, holding our breath while watching all of this. We were both thinking “oh there is no way Liam is going to lick that sucker.” Liam wouldn’t touch candy and believe me I had tried to get him to lick a sucker. I was thinking, “This woman doesn’t know what she’s up against with Liam. Most kids will work for a sucker but not this one.” To our great surprise there he was LOVING this sucker and working hard to move his tongue up, down, side to side, in and out. Katie and I were quietly jumping up and down cheering “Oh my gosh! I can’t believe he’s doing it! Way to go Liam.” We didn’t want to distract him and end this magical moment, but we were bursting inside. We were in total awe of this woman and what she had accomplished with Liam on that day. We were celebrating Liam big time and my belief that he could learn to talk was reaffirmed. We just needed the right therapist and the right therapy. I can honestly say that Katie is one of the few people in my life that I have shared this kind of simple, somewhat strange, joy with. It truly takes a special person and unusual circumstances to get that excited about a child eating a sucker.
Liam was tentatively diagnosed with Apraxia from this evaluation, but it really didn’t change anything about his actual speech therapy. I fought the school system and paraded him around to one private speech therapist after another until finally giving up and home schooling him at age 5 under the guidance of Emily, an amazing savior who brought Verbal Behavior into our lives, which was the first intervention that really worked for Liam’s speech development and gave him his voice.
Katie stayed with us until Liam was 3 ½. She left with her husband to travel around South America and then spent the next several years teaching English in China. As the days approached before her departure, I tried hard not to think about life without her. I couldn’t comprehend losing this person, she had at times been my life line, my confidant, my supporter and someone I trusted to carry out my almost fanatical desire to help him when I could not be there myself. When she left I suffered a blow. I felt like I had lost my right arm. I was lonely and felt isolated. I missed her deeply. How could I do this without her? Liam had lost his friend. What was he thinking about where this special friend had gone? After two weeks of crying and feeling sorry for myself, I dusted myself off and got back to work. Liam needed me to be strong and we would survive. We were off to new adventures, new special people that would grace our lives with their presence and bring new gifts in ways that I could not have anticipated.
Throughout these early years I felt that I was running a race against autism with the prize being Liam’s soul. I knew that I could be a fierce opponent if I set my mind to it … but there was one little problem. I was a mere mortal who got weary from time to time and needed to sleep and eat and work. Autism was a savage beast that needed no rest. I found it hard to rest. I stayed up reading until 2 am every night, researched by Google during the day whenever I had a free moment, and spent endless hours trying to play with Liam on the floor. I felt that I had to make up for the hours that I slept or took a shower or ate, otherwise Autism would win I would lose my child forever. There was no way I was going to let that happen, not to my baby. When I was home, no matter what I was doing, I was constantly observing Liam. If he began to engage in self-stimulatory behavior such as spinning a bowl, opening a door or drawer repetitively, or sticking his fingers in a register vent for all of eternity, I would get down on the floor and join him. There we would sit, Mommy and Liam side by side in the kitchen opening and closing drawers together. At some point Liam would notice me or my drawer and would briefly shift his attention to what I was doing. A connection! There it was. He noticed me. I would smile and tickle him “yeah little one, here I am buddy. It’s mommy.” Now that I had his attention, what could I do to keep it going, to make what I bring to the drawer more interesting? I would begin to open and close my drawer faster and faster, making silly sound effects. Sometimes he would ignore me and go back to opening and closing his drawer, but other times he would imitate me or just giggle and watch. The best times of all were when he would look up at me and smile so as to say “hi!” In those moments I felt like I was on top of the world. Liam was playing with ME! This was our version of patty-cake, albeit a little unorthodox, but we were interacting; I was playing with my distant little child. I viewed what I was doing as changing the way his brain was getting wired. I felt that I needed to get in there and make these activities social, interactive and to not let any opportunity go by if I was going to be successful at wiring his brain to be interested in the outside world. I knew that his behavior held some meaning to him (at the time I didn’t quite know what that meaning was) but I felt that if I didn’t intervene, it would never hold a meaning that he could share with others. It was hard for me to relax, socialize, to think about anything else. Time was of the essence and if I slacked off autism would pull ahead and I could lose him forever. That was not going to happen on my watch.
I was feeling optimistic. These interventions seemed to be working. Liam was beginning to comprehend some words and simple directions. He knew his name. He was starting to use some gestures to communicate. He was eating and growing better than he had been during his first year of life. There was still something that bothered me that stayed in the pit of my stomach and yearned for an answer. What had happened to my child? It seemed like all of the medical problems, “anomalies” if you will, could not truly be separate, unrelated conditions. I had never met another child with autism that had trigonocephaly and failure to thrive and strabismus. Many children on the spectrum had intestinal problems, ear infections, and seemingly weak immune systems. Those things seemed to be common, but Liam’s constellations of medical problems seemed unique to him. I had this deep intuition that Liam’s problems were related, that they added up to some known medical condition, and if we could just find out what it was, maybe, just maybe we could help him even more. Maybe we could save him. One day at work I had some free time and punched into Google “trigonocephaly and autism.” To my shock and horror up popped some hits. “Mild Trigonocephaly: Is it an Autistic Head Shape?” and “Trignoncephaly Associated with Symptoms.” There were a handful of articles on pubmed, a reputable site for medical journal articles. I was only able to read the abstracts as I didn’t have access to the full articles, but these abstracts described other children with mild trignocephaly who had language delays, motor problems, hypotonia, strabismus, hyperactivite, behavior problems, cognitive deficits, autistic features, and on and on. While they didn’t reference anything about failure to thrive or diarrhea, they otherwise described what we were experiencing with Liam developmentally. The articles described this head shape as a subset of autism and stated that there were known genetic defects responsible for this head shape. I felt sick. I couldn’t breath. I sat there motionless, in disbelief. I read the absracts over and over. My heart sank. Tears were coming and I couldn’t stop them. How could this be? We saw the geneticist and the neurosurgeon. We got the CAT scan. We were told, “mild forms of trigonocephaly were not known to be associated with developmental delays” that Liam’s development was not a result of this head shape. Here I was reading the exact opposite. There were other children just like Liam who also had mild trigonocephaly. Once again I could not understand how I, a mere first time mother, could find this information and no one else seemed to know about it. Once again I was mad at myself for not plugging both trigonocephaly and autism into Google earlier. How stupid could I be!
A Japanese doctor who began investigating children with autistic features, developmental delay and mild forms of trigonocephaly first published the articles in Japanese. This doctor had done spect scans to look at the blood flow in affected children’s brains and found reduced blood flow to the frontal lobes. He also did skull x-rays that showed raised intracranial pressure due to the narrowing of the forehead which puts pressure on the brain. He had performed surgery to release the closed suture in a handful of kids and these kids were showing some improvements. Liam was already two years of age at this time. Was it too late for him? Should he have this surgery? Would I want to put him through that? How could I not? I was overwhelmed with emotion. I quickly printed off all of the abstracts and drafted a quick letter urging his pediatrician to help us explore this issue. I faxed it that same day to every doctor we had ever seen. Our pediatrician did respond saying that it was “interesting” and “if we wanted he could refer us back to the neurosurgeon.” Hell yes we are going back to the neurosurgeon! I want an appointment ASAP! We got in quickly but the neurosurgeon said that this was new information to him, that “things are different in Japan.” He could repeat the CAT scan and we could see a different neurosurgeon in the craniofacial disorders clinic to follow-up because he was no longer going to be seeing craniofacial patients. He maintained that he would not operate on Liam. I don’t really remember what all he was saying because I was still feeling numb and uncertain of what I was wanting. What I heard was “blah, blah, blah, can’t help you. Blah, blah, blah, not interested.” We were on to a second opinion. I was not too interested in seeing another neurosurgeon in the same practice. What was the likelihood that this person would go against the first neurosurgeons recommendations, or lack there of? We were going to find someone from some other clinic and get his or her opinion.
We traveled to Seattle a few months later to see a reportedly well-known craniofacial specialist at Seattle Children’s Hospital to gain a second opinion. In advance I had sent him Liam’s medical records, the journal abstracts from pub med, and Liam’s CAT scan films. I waited in anticipation for this appointment, partly nervous that it would end like all the others, partly excited that this could be a turning point for Liam and for us. My hopes were once again dashed as he too said, “blah blah blah, can’t help you. Blah, blah, blah, not interested.” Again I don’t really remember what all he said, other than something about it being interesting, not his experience, and that there are no long term studies on the outcome of operating on a child with mild trigonocephaly and developmental problems to determine if the potential benefit outweighed the risk. We went home somewhat deflated, but somewhat relieved because it would be hard to decide to put Liam through such an invasive surgery. I was still mad, mostly at the situation. I knew that Liam’s trigonocephaly was related to his problems. In my mind there was no way it could not be related. It just pissed me off to realize that there was nothing I cold do about it, no clear path, and no previously charted course. I dropped it for the time being and went back to focusing on the things I felt I could do, the things that seemed to be working.
To be continued.
Katie had some long days with Liam and we decided to enroll him in a gymnastics class and began taking him to the pool and the park to break up the day and allow them to get out of the house. One day I came home to find Katie feeling a little blue. “It’s just so hard to see Liam with all of these other little kids and to realize all of the things they can do compared to him” Katie said through tears. It was hard to hear these words from her – feelings and thoughts that I lived with, spoken out loud. It was hard for me to comfort her because I was fighting hard to conceal my deepest feelings about Liam. I still felt that in some way if I spoke these feelings out loud I was somehow betraying him. In that moment I also felt closeness to Katie that I don’t think I felt with anyone else in my life at that time; someone who loved Liam like a mother, someone who felt and was willing to speak about the pain I lived with each day. Katie and I also shared some joyous moments that I don’t think anyone but us could have really understood. We both knew Liam intimately. We knew things about him that no one else could possibly know. When Liam was about three years of age I pushed his early intervention team to evaluate him for Apraxia, a motor-based speech disorder. I had done a lot of reading about Apraxia and felt that Liam demonstrated many of the symptoms. In particular, Liam really couldn’t repeat anything we said. He would try, his mouth would move but nothing or the wrong thing would come out. He was really much better at self-generated speech. At times, words and sometimes whole phrases would pop out of his little mouth. I was stunned one day to hear this little child say, “dive da cah” as he pushed a little car around. This from a child who never even said mama or dada had just said a whole phrase that was appropriate to what he was doing. We never heard that phrase again. I tried to get it out of him, but nothing. On another occasion, Liam said, “More bubbles” when Katie was blowing bubbles with him. We stood and looked at one another shocked. We were working on him saying “buh.” Just as before though, we couldn’t get him to do it again. In fact, it would be many years before I would hear Liam actually put two words together. Katie and I shared these little victories together as well as the pain of not being able to get there again with Liam. Other symptoms of Apraxia that Liam showed were not having a consistent word for something. For example, for the word “open” Liam would sometimes say “Oh,” other times it would be “Oh-pah,” and yet at other times it would be “Oh-pah-pah.” It was maddening. He also dropped the endings of words and could not say a lot of vowel sounds. He couldn’t stick his tongue out in imitation or move his mouth, or any part of his body for that matter, on command. So on this day when Liam was three, Katie and I were there for his long awaited Apraxia evaluation. In my inexperience and naiveté I thought that if Liam were deemed Apraxic we would somehow get some type of speech therapy that would change the struggle we were in to help him learn to talk. I had mixed emotions about this evaluation. I hadn’t been too impressed with the speech therapists that had been working with Liam largely because he wasn’t making any progress and they didn’t seem to have an explanation for this or a plan. Some of them could not even get him to cooperate and participate in the session. I was desperate to help him develop verbal communication and I was angry, maybe unfairly at times, that no one seemed to have a strategy or plan for how we were going to get Liam talking. To my elation, the speech therapist that came to do this evaluation was amazing. She got Liam to sit in a chair, imitate her, and move his tongue. He made more speech sounds in that hour than I think I had heard come out of him over the past month. She also got him to lick a dumb-dumb sucker. Now if you can imagine two grown women (Katie and I) clutching one another, holding our breath while watching all of this. We were both thinking “oh there is no way Liam is going to lick that sucker.” Liam wouldn’t touch candy and believe me I had tried to get him to lick a sucker. I was thinking, “This woman doesn’t know what she’s up against with Liam. Most kids will work for a sucker but not this one.” To our great surprise there he was LOVING this sucker and working hard to move his tongue up, down, side to side, in and out. Katie and I were quietly jumping up and down cheering “Oh my gosh! I can’t believe he’s doing it! Way to go Liam.” We didn’t want to distract him and end this magical moment, but we were bursting inside. We were in total awe of this woman and what she had accomplished with Liam on that day. We were celebrating Liam big time and my belief that he could learn to talk was reaffirmed. We just needed the right therapist and the right therapy. I can honestly say that Katie is one of the few people in my life that I have shared this kind of simple, somewhat strange, joy with. It truly takes a special person and unusual circumstances to get that excited about a child eating a sucker.
Liam was tentatively diagnosed with Apraxia from this evaluation, but it really didn’t change anything about his actual speech therapy. I fought the school system and paraded him around to one private speech therapist after another until finally giving up and home schooling him at age 5 under the guidance of Emily, an amazing savior who brought Verbal Behavior into our lives, which was the first intervention that really worked for Liam’s speech development and gave him his voice.
Katie stayed with us until Liam was 3 ½. She left with her husband to travel around South America and then spent the next several years teaching English in China. As the days approached before her departure, I tried hard not to think about life without her. I couldn’t comprehend losing this person, she had at times been my life line, my confidant, my supporter and someone I trusted to carry out my almost fanatical desire to help him when I could not be there myself. When she left I suffered a blow. I felt like I had lost my right arm. I was lonely and felt isolated. I missed her deeply. How could I do this without her? Liam had lost his friend. What was he thinking about where this special friend had gone? After two weeks of crying and feeling sorry for myself, I dusted myself off and got back to work. Liam needed me to be strong and we would survive. We were off to new adventures, new special people that would grace our lives with their presence and bring new gifts in ways that I could not have anticipated.
Throughout these early years I felt that I was running a race against autism with the prize being Liam’s soul. I knew that I could be a fierce opponent if I set my mind to it … but there was one little problem. I was a mere mortal who got weary from time to time and needed to sleep and eat and work. Autism was a savage beast that needed no rest. I found it hard to rest. I stayed up reading until 2 am every night, researched by Google during the day whenever I had a free moment, and spent endless hours trying to play with Liam on the floor. I felt that I had to make up for the hours that I slept or took a shower or ate, otherwise Autism would win I would lose my child forever. There was no way I was going to let that happen, not to my baby. When I was home, no matter what I was doing, I was constantly observing Liam. If he began to engage in self-stimulatory behavior such as spinning a bowl, opening a door or drawer repetitively, or sticking his fingers in a register vent for all of eternity, I would get down on the floor and join him. There we would sit, Mommy and Liam side by side in the kitchen opening and closing drawers together. At some point Liam would notice me or my drawer and would briefly shift his attention to what I was doing. A connection! There it was. He noticed me. I would smile and tickle him “yeah little one, here I am buddy. It’s mommy.” Now that I had his attention, what could I do to keep it going, to make what I bring to the drawer more interesting? I would begin to open and close my drawer faster and faster, making silly sound effects. Sometimes he would ignore me and go back to opening and closing his drawer, but other times he would imitate me or just giggle and watch. The best times of all were when he would look up at me and smile so as to say “hi!” In those moments I felt like I was on top of the world. Liam was playing with ME! This was our version of patty-cake, albeit a little unorthodox, but we were interacting; I was playing with my distant little child. I viewed what I was doing as changing the way his brain was getting wired. I felt that I needed to get in there and make these activities social, interactive and to not let any opportunity go by if I was going to be successful at wiring his brain to be interested in the outside world. I knew that his behavior held some meaning to him (at the time I didn’t quite know what that meaning was) but I felt that if I didn’t intervene, it would never hold a meaning that he could share with others. It was hard for me to relax, socialize, to think about anything else. Time was of the essence and if I slacked off autism would pull ahead and I could lose him forever. That was not going to happen on my watch.
I was feeling optimistic. These interventions seemed to be working. Liam was beginning to comprehend some words and simple directions. He knew his name. He was starting to use some gestures to communicate. He was eating and growing better than he had been during his first year of life. There was still something that bothered me that stayed in the pit of my stomach and yearned for an answer. What had happened to my child? It seemed like all of the medical problems, “anomalies” if you will, could not truly be separate, unrelated conditions. I had never met another child with autism that had trigonocephaly and failure to thrive and strabismus. Many children on the spectrum had intestinal problems, ear infections, and seemingly weak immune systems. Those things seemed to be common, but Liam’s constellations of medical problems seemed unique to him. I had this deep intuition that Liam’s problems were related, that they added up to some known medical condition, and if we could just find out what it was, maybe, just maybe we could help him even more. Maybe we could save him. One day at work I had some free time and punched into Google “trigonocephaly and autism.” To my shock and horror up popped some hits. “Mild Trigonocephaly: Is it an Autistic Head Shape?” and “Trignoncephaly Associated with Symptoms.” There were a handful of articles on pubmed, a reputable site for medical journal articles. I was only able to read the abstracts as I didn’t have access to the full articles, but these abstracts described other children with mild trignocephaly who had language delays, motor problems, hypotonia, strabismus, hyperactivite, behavior problems, cognitive deficits, autistic features, and on and on. While they didn’t reference anything about failure to thrive or diarrhea, they otherwise described what we were experiencing with Liam developmentally. The articles described this head shape as a subset of autism and stated that there were known genetic defects responsible for this head shape. I felt sick. I couldn’t breath. I sat there motionless, in disbelief. I read the absracts over and over. My heart sank. Tears were coming and I couldn’t stop them. How could this be? We saw the geneticist and the neurosurgeon. We got the CAT scan. We were told, “mild forms of trigonocephaly were not known to be associated with developmental delays” that Liam’s development was not a result of this head shape. Here I was reading the exact opposite. There were other children just like Liam who also had mild trigonocephaly. Once again I could not understand how I, a mere first time mother, could find this information and no one else seemed to know about it. Once again I was mad at myself for not plugging both trigonocephaly and autism into Google earlier. How stupid could I be!
A Japanese doctor who began investigating children with autistic features, developmental delay and mild forms of trigonocephaly first published the articles in Japanese. This doctor had done spect scans to look at the blood flow in affected children’s brains and found reduced blood flow to the frontal lobes. He also did skull x-rays that showed raised intracranial pressure due to the narrowing of the forehead which puts pressure on the brain. He had performed surgery to release the closed suture in a handful of kids and these kids were showing some improvements. Liam was already two years of age at this time. Was it too late for him? Should he have this surgery? Would I want to put him through that? How could I not? I was overwhelmed with emotion. I quickly printed off all of the abstracts and drafted a quick letter urging his pediatrician to help us explore this issue. I faxed it that same day to every doctor we had ever seen. Our pediatrician did respond saying that it was “interesting” and “if we wanted he could refer us back to the neurosurgeon.” Hell yes we are going back to the neurosurgeon! I want an appointment ASAP! We got in quickly but the neurosurgeon said that this was new information to him, that “things are different in Japan.” He could repeat the CAT scan and we could see a different neurosurgeon in the craniofacial disorders clinic to follow-up because he was no longer going to be seeing craniofacial patients. He maintained that he would not operate on Liam. I don’t really remember what all he was saying because I was still feeling numb and uncertain of what I was wanting. What I heard was “blah, blah, blah, can’t help you. Blah, blah, blah, not interested.” We were on to a second opinion. I was not too interested in seeing another neurosurgeon in the same practice. What was the likelihood that this person would go against the first neurosurgeons recommendations, or lack there of? We were going to find someone from some other clinic and get his or her opinion.
We traveled to Seattle a few months later to see a reportedly well-known craniofacial specialist at Seattle Children’s Hospital to gain a second opinion. In advance I had sent him Liam’s medical records, the journal abstracts from pub med, and Liam’s CAT scan films. I waited in anticipation for this appointment, partly nervous that it would end like all the others, partly excited that this could be a turning point for Liam and for us. My hopes were once again dashed as he too said, “blah blah blah, can’t help you. Blah, blah, blah, not interested.” Again I don’t really remember what all he said, other than something about it being interesting, not his experience, and that there are no long term studies on the outcome of operating on a child with mild trigonocephaly and developmental problems to determine if the potential benefit outweighed the risk. We went home somewhat deflated, but somewhat relieved because it would be hard to decide to put Liam through such an invasive surgery. I was still mad, mostly at the situation. I knew that Liam’s trigonocephaly was related to his problems. In my mind there was no way it could not be related. It just pissed me off to realize that there was nothing I cold do about it, no clear path, and no previously charted course. I dropped it for the time being and went back to focusing on the things I felt I could do, the things that seemed to be working.
To be continued.
Thursday, September 3, 2009
Manly Men
It was two weeks before Christmas 2008. Liam was seven, Claire was five, and Angie and I were…well that’s not important. We were approaching the weekend and gearing up to get a Christmas tree. Although I like Christmas, I have a hard time with things like shopping, and decorating, and baking, and wrapping, and all the stuff that we are supposed to be as excited about as the kids are. The one thing I do like is getting the Christmas tree. I used to not like to get the Christmas tree because we used to just go out and buy one from a lot. The last time we went to get a lot tree was about four years before. I remember Angie and I at the lot with Liam and Claire all bundled up. Liam was four and Claire was two. We spent about an hour there looking at all the trees to find the perfect one. When I say we, I mean Angie. I basically stopped caring what tree we got after the first three times I was chastised for my suggestions:
“How ‘bout that one?”
“No, that’s a dog dressed up like a Christmas tree.”
I found out very quickly that I have no taste in Christmas trees so I would just silently tag along with the kids while Angie selected the absolute best tree in the northwest.
I would just say to myself, “This would only take five minutes if I were here by myself.”
Then I would answer, “Yes but do you really want to be accused of Ruining Christmas by picking the wrong tree? Remember, you used to decorate your overgrown philodendron for Christmas back when you had your own place.”
“Yes, my own place…(sigh)…but your right. I need to just smile and nod.”
So after Angie selected the perfect tree we took it up to the tree lady, and the tree lady said, “Eighty five dollars please.”
“Ha, funny” I said.
The tree lady didn’t laugh. She just stared at me.
“Oh really?” I said. “Eighty five dollars?”
“Yes sir. It’s a real beauty.”
“Yes I know. We live in the northwest. We’re surrounded by them. I could just go out and hit one with my car and drag it home and it wouldn’t cost me anything… if you don’t count car damage repair.”
“Well, sir you are welcome to do that.”
“I think I will. Come on Honey.”
As we were leaving Angie said, “So, what’s your plan here?”
“We’ll go to a U cut place tomorrow and cut one ourselves. The tree lady doesn’t have to know we didn’t run it over.”
“Are there U cut places around here?”
“They’re all over. I think there is one on Sauvie Island. It’s gotta be cheaper than eighty-five bucks. That’s just ridiculous.”
So I looked it up when we got home and sure enough there was a U cut farm on Sauvie Island. We had been going there for years to hike, buy produce, and get pumpkins for Halloween. The kids loved it and so did we. I don’t know why we never thought of it before.
We drove to the U cut farm the next day. They give you a tree saw and a cart and let you loose on the unsuspecting trees. Liam loved it. He wanted to carry the saw and I let him until it was clear that he wanted to saw everything in his path; every tree, the cart, his shoe, a squirrel. I figured I had better hold the saw until Angie found the perfect tree. We didn’t really mind it taking so long because we all just loved being out there walking through the trees and getting into the whole experience. When Angie finally did choose the tree she wanted, I cut it down with Liam “helping” me hand over hand with the saw. He helped me load it into the cart with great glee. We took it back to the tree lady who bundled it for us and charged us forty-five dollars; forty-five dollars for the tree and the experience. This is the first year I started to really get into Christmas, and we did the U cut tree ever since.
So, back to Christmas of 2008. Two weeks before Christmas and we were ready to get it going when Angie got a call from a family member in Indiana. Her Grandpa was really sick and not expected to be around much longer. We decided that Angie would go out to Indiana to see her grandpa for the last time, and since he had never met Claire, Angie would take Claire with her. The timing was bad but it was what it was. It took a day to get our minds wrapped around it but we figured they would go for five days and be back in time for Christmas.
“I guess that means Liam and I will have to get the tree by ourselves.” I said.
“Oh.” I could tell what she was thinking.
“I know.” I said. “You think we’ll get a crappy tree.”
“Um…yeah.”
“Well you know what? You’re right. I know there is no chance of Liam and I picking the tree you would pick, but you’re gonna love it anyway because we picked it out.”
She let out a big sigh. “Yeah. I know I will…but just try, OK?”
“Of course.”
We took Angie and Claire to the airport and Liam and I started driving back to the house.
“You know what this means buddy?” I said to Liam in the back seat.
“We are on our own, man.”
“Own.”
“Just two manly men hangin’ out for five days.”
“Man.”
“We can do whatever we want. We can hang out in our boxers…”
“Boxers.”
“We can get movies from the movie store…”
“’vie store.”
“And on Saturday you and I get to go get a Christmas tree.”
“Kismas tree! Yeah. Kismas tree!”
“You want to get a Christmas tree?”
“Yeah! Kismas tree!”
“OK then, we’ll go on Saturday.”
This was Thursday so all I heard for the next two days was “Kismas tree? Kismas tree?” accompanied by two of the biggest brown eyes looking straight at mine. Liam has big eyes anyway, but when he really wants something he has an uncanny ability to make them twice as big and twice as irresistible.
We made the best of our time together as manly men. We reinstituted the pants optional policy I had in my single days and rented manly movies like Thomas The Tank Engine and The Brave Little Toaster. We ate chips on the couch and drank single malt scotch and smoked Dominican cigars…well it was really apple juice and gluten free pretzel sticks but it felt manly. All the while I was deflecting Liam’s intermittent requests to go get the “kismas tree” until Saturday.
Saturday came around and when Liam and I woke up the outside world was covered in snow. Not only that, but more snow was falling from the sky at a very rapid rate. I won’t say it never snows in Portland but we rarely get snowstorms like this and never at Christmas time. It usually just rains for Christmas. Liam knew this was Christmas tree day because I had made that clear the day before after every time he said “kismas tree.” He was very excited to go and I was having serious doubts about driving anywhere. The Jeep wasn’t running and all we had was our little Saturn Wagon to venture out in. I wouldn’t have been too worried if I could drive the Jeep, because it had four wheel drive, but the Saturn only had front wheel drive. Looking out the window, I saw no cars on the road.
“Kismas tree?” Liam said with the same intensely big eyes and an excited grin on his face.
“Buddy, I don’t know if we can go. Look at the snow outside.”
“Snow…kismas tree?” Still excited.
I knew if I explained it to him it would take a while for him to understand and then he would probably throw a fit but I also knew he would get over it, but looking into those eyes and looking at how excited he was, I was starting to get as equally disappointed as I knew he would be. I started to think; “Is it that bad? I know there are no other cars out there but people in Portland panic and the city shuts down for even a little bit of snow. Most people don’t know how to drive in snow but I do. Visibility is pretty low but if I just go slow and steady, take my time it should be fine.”
I know this was a bad decision but I didn’t have a bad feeling about it when I said to Liam “OK buddy, let’s get ready to go.”
Liam lit up like a kismas tree and we went to get on all of our gear. We put on our boots, gloves, hats, scarves (Liam chose one of Claire’s manly pink scarves), and coats. We stepped out on the porch into the snowstorm and quickly stepped back inside. It was colder than we thought so we put some pants on, and we were on our way.
We got in the car and as I pulled out into the crunching snow with Liam chanting “Kismas tree. Kismas tree” Between giggles, I was envisioning the newspaper headlines: “Manly man and son trapped in snow covered car for three days surviving off accumulation of French fries and raisins thrown on the car floor by resourceful son months before.” I went slow and easy squinting my eyes thinking that it was helping me see through the accelerating snowflakes. It usually took about fifteen minutes to get to Sauvie Island but I was going so slow that I think it took about an hour. There were literally no cars on the road except us. Liam was clearly not worried in his kismas tree nirvana. I told myself I wasn’t worried and I mostly believed me. We worked our way over the bridge and up the country road to where the tree farm was. When we got there, there was nobody there. There was a sign though. Liam and I had to get out of the car to go read it. It said, “Tree farm closed. Going out of business.” We just stood there in the pounding silent snow, cold and silent…standing…staring…cold…
“How could they go out of business?” I thought. “It’s Christmas.”
“Kismas tree.” Said Liam.
“No kismas tree, buddy…it’s closed.”
“Closed.”
“Yep, closed.”
“Kismas tree?”
“Let’s get back in the car.”
“Kismas tree?” His voice was beginning to have a telltale pre meltdown quiver.
“Liam, I will find you a Christmas tree today, OK? We just have to look a little more.”
“Look.” I think something about the snow helped him stay calm. He surprisingly accepted what I had t say and went back to his “kismas tree” chant.
I started to drive us back along the silent, snow covered road wondering where I was going to find a Christmas tree. As I drove past the farm we always go to for produce in season, and for pumpkins in the fall, I could barely make out through the ever-increasing snowflakes, rows of green. The farm would usually shut down after the fall harvest but there was definitely activity there and those were trees in the parking lot. I pulled in and Liam and I got out of the car. The tree lady greeted us warmly and seemed happy to see us.
“Did you guys drive all the way out here from the city?” She smiled.
“Yes we did.” I said in my most manly voice.
“Wow you guys are brave.”
“Yes we are.”
“I haven’t seen many people out and about today. It’s a crazy snow storm but I love it.”
“Yeah it’s fun but maybe not the best idea to be driving out in it right now.”
“Oh, you’re fine. Can I get you some hot cider?”
“Want some cider Liam?”
“Ci…” Said Liam.
“Yeah hot cider. Want some?”
“Yeah”
“I guess two ciders then.”
“I’ll be right back”
While she got our ciders, Liam and I went over to look at the trees. They were already cut of course. They were lot trees but at this point we just needed a tree and I was betting they wouldn’t be eight five dollars.
“Here’s your ciders.” The tree lady said still smiling as she handed us each our cups.
I took a sip of mine and Liam poured his out into the snow.
“Liam come on.” I said. “I’m sorry he um…”
“Oh that’s OK.” She said. “He got what he wanted out of it.”
Liam giggled and watched the steam rise as the cider melted the snow.
“…You’re the coolest tree lady ever.” I said.
“You’re still gonna pay for it of course.”
“Of course.”
“Well should we look at some trees since you came all this way?”
We started looking at the trees that were half covered in snow and were getting colder by the minute; at least I was. Liam doesn’t always seem effected by cold and he has a pretty high pain threshold. I really didn’t want to stay too long picking out a tree but I didn’t want Angie to be completely disappointed in whatever tree we got. Then I got a brilliant idea. If I let Liam pick the tree all by himself there was no way she could be disappointed if she knew he chose it.
“Liam, which Christmas tree do you like?”
“That one?”
“No, that’s a dog dressed up like a Christmas tree.” I did learn something over the years.
“That one.” He said pointing to a decent sized tree.
“We’ll take that one.” I said to the tree lady. “How much is it?”
“That one’s forty five dollars.”
“That’s a good price. Same as the U cuts”
“That’s because they were all grown on the island.”
We paid for the tree and tied it to the roof of the car and finished just before my fingers were about to fall off.
“Have a safe trip home.” She said warmly.
“Thanks a lot tree lady.” I said as I finished securing Liam in his seat.
We inched our way along the road just as we had on the way there. The snow never let up and it took another hour to get home. Liam was all happy babbling and giggles the whole way.
When we got home we pulled the tree into the house and set it in the stand. Liam had to be right on in it with me from “helping” carry it in the house to “lifting” it into the stand and helping turn the screws on the stand. When we were done we had a pretty decent tree mostly straight in the stand emitting the Christmas tree smell.
“Deck?” Said Liam.
“Oh no buddy, we have to wait for mommy to decorate it. We would definitely screw that up.”
“Screw.”
“How about we build a fire?”
“Fire! Yeah!” Liam loves fire. Probably a little too much but it really makes him happy when we have a fire in the fireplace.
“How about some popcorn too?”
“Yes.”
So we sat in front of the fire in our boxers eating popcorn reflecting on our adventure.
“I’d say it was a pretty manly day, huh buddy?”
“Man.”
“How ‘bout that one?”
“No, that’s a dog dressed up like a Christmas tree.”
I found out very quickly that I have no taste in Christmas trees so I would just silently tag along with the kids while Angie selected the absolute best tree in the northwest.
I would just say to myself, “This would only take five minutes if I were here by myself.”
Then I would answer, “Yes but do you really want to be accused of Ruining Christmas by picking the wrong tree? Remember, you used to decorate your overgrown philodendron for Christmas back when you had your own place.”
“Yes, my own place…(sigh)…but your right. I need to just smile and nod.”
So after Angie selected the perfect tree we took it up to the tree lady, and the tree lady said, “Eighty five dollars please.”
“Ha, funny” I said.
The tree lady didn’t laugh. She just stared at me.
“Oh really?” I said. “Eighty five dollars?”
“Yes sir. It’s a real beauty.”
“Yes I know. We live in the northwest. We’re surrounded by them. I could just go out and hit one with my car and drag it home and it wouldn’t cost me anything… if you don’t count car damage repair.”
“Well, sir you are welcome to do that.”
“I think I will. Come on Honey.”
As we were leaving Angie said, “So, what’s your plan here?”
“We’ll go to a U cut place tomorrow and cut one ourselves. The tree lady doesn’t have to know we didn’t run it over.”
“Are there U cut places around here?”
“They’re all over. I think there is one on Sauvie Island. It’s gotta be cheaper than eighty-five bucks. That’s just ridiculous.”
So I looked it up when we got home and sure enough there was a U cut farm on Sauvie Island. We had been going there for years to hike, buy produce, and get pumpkins for Halloween. The kids loved it and so did we. I don’t know why we never thought of it before.
We drove to the U cut farm the next day. They give you a tree saw and a cart and let you loose on the unsuspecting trees. Liam loved it. He wanted to carry the saw and I let him until it was clear that he wanted to saw everything in his path; every tree, the cart, his shoe, a squirrel. I figured I had better hold the saw until Angie found the perfect tree. We didn’t really mind it taking so long because we all just loved being out there walking through the trees and getting into the whole experience. When Angie finally did choose the tree she wanted, I cut it down with Liam “helping” me hand over hand with the saw. He helped me load it into the cart with great glee. We took it back to the tree lady who bundled it for us and charged us forty-five dollars; forty-five dollars for the tree and the experience. This is the first year I started to really get into Christmas, and we did the U cut tree ever since.
So, back to Christmas of 2008. Two weeks before Christmas and we were ready to get it going when Angie got a call from a family member in Indiana. Her Grandpa was really sick and not expected to be around much longer. We decided that Angie would go out to Indiana to see her grandpa for the last time, and since he had never met Claire, Angie would take Claire with her. The timing was bad but it was what it was. It took a day to get our minds wrapped around it but we figured they would go for five days and be back in time for Christmas.
“I guess that means Liam and I will have to get the tree by ourselves.” I said.
“Oh.” I could tell what she was thinking.
“I know.” I said. “You think we’ll get a crappy tree.”
“Um…yeah.”
“Well you know what? You’re right. I know there is no chance of Liam and I picking the tree you would pick, but you’re gonna love it anyway because we picked it out.”
She let out a big sigh. “Yeah. I know I will…but just try, OK?”
“Of course.”
We took Angie and Claire to the airport and Liam and I started driving back to the house.
“You know what this means buddy?” I said to Liam in the back seat.
“We are on our own, man.”
“Own.”
“Just two manly men hangin’ out for five days.”
“Man.”
“We can do whatever we want. We can hang out in our boxers…”
“Boxers.”
“We can get movies from the movie store…”
“’vie store.”
“And on Saturday you and I get to go get a Christmas tree.”
“Kismas tree! Yeah. Kismas tree!”
“You want to get a Christmas tree?”
“Yeah! Kismas tree!”
“OK then, we’ll go on Saturday.”
This was Thursday so all I heard for the next two days was “Kismas tree? Kismas tree?” accompanied by two of the biggest brown eyes looking straight at mine. Liam has big eyes anyway, but when he really wants something he has an uncanny ability to make them twice as big and twice as irresistible.
We made the best of our time together as manly men. We reinstituted the pants optional policy I had in my single days and rented manly movies like Thomas The Tank Engine and The Brave Little Toaster. We ate chips on the couch and drank single malt scotch and smoked Dominican cigars…well it was really apple juice and gluten free pretzel sticks but it felt manly. All the while I was deflecting Liam’s intermittent requests to go get the “kismas tree” until Saturday.
Saturday came around and when Liam and I woke up the outside world was covered in snow. Not only that, but more snow was falling from the sky at a very rapid rate. I won’t say it never snows in Portland but we rarely get snowstorms like this and never at Christmas time. It usually just rains for Christmas. Liam knew this was Christmas tree day because I had made that clear the day before after every time he said “kismas tree.” He was very excited to go and I was having serious doubts about driving anywhere. The Jeep wasn’t running and all we had was our little Saturn Wagon to venture out in. I wouldn’t have been too worried if I could drive the Jeep, because it had four wheel drive, but the Saturn only had front wheel drive. Looking out the window, I saw no cars on the road.
“Kismas tree?” Liam said with the same intensely big eyes and an excited grin on his face.
“Buddy, I don’t know if we can go. Look at the snow outside.”
“Snow…kismas tree?” Still excited.
I knew if I explained it to him it would take a while for him to understand and then he would probably throw a fit but I also knew he would get over it, but looking into those eyes and looking at how excited he was, I was starting to get as equally disappointed as I knew he would be. I started to think; “Is it that bad? I know there are no other cars out there but people in Portland panic and the city shuts down for even a little bit of snow. Most people don’t know how to drive in snow but I do. Visibility is pretty low but if I just go slow and steady, take my time it should be fine.”
I know this was a bad decision but I didn’t have a bad feeling about it when I said to Liam “OK buddy, let’s get ready to go.”
Liam lit up like a kismas tree and we went to get on all of our gear. We put on our boots, gloves, hats, scarves (Liam chose one of Claire’s manly pink scarves), and coats. We stepped out on the porch into the snowstorm and quickly stepped back inside. It was colder than we thought so we put some pants on, and we were on our way.
We got in the car and as I pulled out into the crunching snow with Liam chanting “Kismas tree. Kismas tree” Between giggles, I was envisioning the newspaper headlines: “Manly man and son trapped in snow covered car for three days surviving off accumulation of French fries and raisins thrown on the car floor by resourceful son months before.” I went slow and easy squinting my eyes thinking that it was helping me see through the accelerating snowflakes. It usually took about fifteen minutes to get to Sauvie Island but I was going so slow that I think it took about an hour. There were literally no cars on the road except us. Liam was clearly not worried in his kismas tree nirvana. I told myself I wasn’t worried and I mostly believed me. We worked our way over the bridge and up the country road to where the tree farm was. When we got there, there was nobody there. There was a sign though. Liam and I had to get out of the car to go read it. It said, “Tree farm closed. Going out of business.” We just stood there in the pounding silent snow, cold and silent…standing…staring…cold…
“How could they go out of business?” I thought. “It’s Christmas.”
“Kismas tree.” Said Liam.
“No kismas tree, buddy…it’s closed.”
“Closed.”
“Yep, closed.”
“Kismas tree?”
“Let’s get back in the car.”
“Kismas tree?” His voice was beginning to have a telltale pre meltdown quiver.
“Liam, I will find you a Christmas tree today, OK? We just have to look a little more.”
“Look.” I think something about the snow helped him stay calm. He surprisingly accepted what I had t say and went back to his “kismas tree” chant.
I started to drive us back along the silent, snow covered road wondering where I was going to find a Christmas tree. As I drove past the farm we always go to for produce in season, and for pumpkins in the fall, I could barely make out through the ever-increasing snowflakes, rows of green. The farm would usually shut down after the fall harvest but there was definitely activity there and those were trees in the parking lot. I pulled in and Liam and I got out of the car. The tree lady greeted us warmly and seemed happy to see us.
“Did you guys drive all the way out here from the city?” She smiled.
“Yes we did.” I said in my most manly voice.
“Wow you guys are brave.”
“Yes we are.”
“I haven’t seen many people out and about today. It’s a crazy snow storm but I love it.”
“Yeah it’s fun but maybe not the best idea to be driving out in it right now.”
“Oh, you’re fine. Can I get you some hot cider?”
“Want some cider Liam?”
“Ci…” Said Liam.
“Yeah hot cider. Want some?”
“Yeah”
“I guess two ciders then.”
“I’ll be right back”
While she got our ciders, Liam and I went over to look at the trees. They were already cut of course. They were lot trees but at this point we just needed a tree and I was betting they wouldn’t be eight five dollars.
“Here’s your ciders.” The tree lady said still smiling as she handed us each our cups.
I took a sip of mine and Liam poured his out into the snow.
“Liam come on.” I said. “I’m sorry he um…”
“Oh that’s OK.” She said. “He got what he wanted out of it.”
Liam giggled and watched the steam rise as the cider melted the snow.
“…You’re the coolest tree lady ever.” I said.
“You’re still gonna pay for it of course.”
“Of course.”
“Well should we look at some trees since you came all this way?”
We started looking at the trees that were half covered in snow and were getting colder by the minute; at least I was. Liam doesn’t always seem effected by cold and he has a pretty high pain threshold. I really didn’t want to stay too long picking out a tree but I didn’t want Angie to be completely disappointed in whatever tree we got. Then I got a brilliant idea. If I let Liam pick the tree all by himself there was no way she could be disappointed if she knew he chose it.
“Liam, which Christmas tree do you like?”
“That one?”
“No, that’s a dog dressed up like a Christmas tree.” I did learn something over the years.
“That one.” He said pointing to a decent sized tree.
“We’ll take that one.” I said to the tree lady. “How much is it?”
“That one’s forty five dollars.”
“That’s a good price. Same as the U cuts”
“That’s because they were all grown on the island.”
We paid for the tree and tied it to the roof of the car and finished just before my fingers were about to fall off.
“Have a safe trip home.” She said warmly.
“Thanks a lot tree lady.” I said as I finished securing Liam in his seat.
We inched our way along the road just as we had on the way there. The snow never let up and it took another hour to get home. Liam was all happy babbling and giggles the whole way.
When we got home we pulled the tree into the house and set it in the stand. Liam had to be right on in it with me from “helping” carry it in the house to “lifting” it into the stand and helping turn the screws on the stand. When we were done we had a pretty decent tree mostly straight in the stand emitting the Christmas tree smell.
“Deck?” Said Liam.
“Oh no buddy, we have to wait for mommy to decorate it. We would definitely screw that up.”
“Screw.”
“How about we build a fire?”
“Fire! Yeah!” Liam loves fire. Probably a little too much but it really makes him happy when we have a fire in the fireplace.
“How about some popcorn too?”
“Yes.”
So we sat in front of the fire in our boxers eating popcorn reflecting on our adventure.
“I’d say it was a pretty manly day, huh buddy?”
“Man.”
Monday, August 24, 2009
Glut 1 Deficiency - Could it be? Part 4
Back on the medical front, Liam continued to struggle with weight gain, frequent illness, strabismus, and now had developed severe diarrhea. He would have diarrhea after anything he ate (which wasn’t much) and it often contained mucous and undigested food. It was foul. It could happen anywhere, anytime and we always had to carry extra clothing with us because it could explode out the top and legs of his diaper, making a huge, disgusting mess. We had switched from seeing the nurse practitioner to the pediatrician who had last consulted on Liam’s ridge at 9 months, as we believed that he recognized the problem and perhaps was more knowledgeable. He was the first doctor to bring up the possibility of Liam having an inborn error of metabolism. This meant that Liam’s body might not be able to properly break down and utilize food, resulting in him not making or absorbing vital nutrients. The doctor ran some tests. He told me they would be looking at Liam’s amino acids. “Amino what’s?” I said. He went on to talk some gobbeldygook about amino acids being proteins that are the building blocks of life. I still had no idea what he meant but was fully supportive of more testing. The results came back not quite normal, but not specifically indicative of any known metabolic disorder. Of course this was the case. Another anomaly. Great.
At meal times, if Liam ate anything, he would often end up staring off into space. Well, not space exactly. It seemed as if he was staring at something very specific, just something that we could not see. He would stare very intently and laugh and laugh. We would hold our hand up in front of his eyes and he would reach up and push our hand out of the way or look around it, staring fixedly at this unknown thing. We used to say, “Liam sees angles.” We thought this was cute. He was so quiet and serious as an older baby and, with this behavior, we tried to find some meaning in it – he was a little Buddha, a spiritual being. After I began my education in autism I came to understand that this behavior was more likely an indication that Liam was hallucinating. It is theorized that some children with autism have an inability to properly digest the proteins in wheat (gluten) and dairy (casein). The proteins are only broken down partially and become similar in chemical structure to morphine. I also learned how chronic infections such as ear infections are common in these same children with autism and that, due to these infections and subsequent overuse of antibiotics, these children develop yeast infections and an overgrowth of bad (not beneficial) bacteria. The antibiotics not only kill off the offending bacteria responsible for the infection, but also the beneficial good bacteria and this results in an imbalance of the gut flora so essential for healthy digestion and overall gut health. The improperly digested proteins in combination with the bacteria and yeast overgrowth can damage the intestinal lining making it porous. A healthy intestinal track only allows certain essential nutrients to enter the blood stream, keeping everything else in the intestines. When the intestines become damaged, things that should not enter the blood stream can leak out. This is known as “leaky gut syndrome.” In the case of improperly digested gluten and casein, as it is similar in structure to morphine which can permeate the blood brain barrier, so too do these proteins, which is why Liam would hallucinate after eating. Reading about this was a shock. This behavior that I found to be cute, spiritual like, was actually a serious problem and something that could be hurting Liam’s brain. It certainly was not helping Liam to connect with the real world or pay attention to things that are relevant. No wonder he could stare at the lines created by repetitively opening and closing doors and drawers with such focus and glee for hours, he was tripping. With Liam’s failure to thrive, extremely limited (almost non-existent) diet, and failing health, we had no qualms about trying the Gluten Free Casein Free (GFCF) diet. I couldn’t implement it fast enough. Within three days of no dairy products, Liam was suddenly free of his respiratory illness. No more coughing, runny nose, elevated temperatures, or ear infections (ear infections did return at age 4 – more on that later). It was amazing. Gluten takes longer (about 3 months) to get out of your system. With the removal of gluten we did see an end to the baby Buddha behavior and he seemed more “with-it.” He has remained GFCF ever since.
We began seeing a naturopathic physician who was well known in the community for utilizing the DAN! Protocol with autistic children. She helped us navigate further treatments for Liam such as vitamin and mineral and fatty acid supplementation, all aimed at restoring the imbalances in his body and helping to repair his damaged gut. We found a super supportive nutritionist who formulated a GFCF formula replacement for Liam that was a combination of fortified rice milk, gluten free rice protein powder, brown rice syrup, and flax oil. We would mix up a big batch of this for Liam every day and to our amazement he would gulp it down. Unbelievable. Liam still wasn’t eating solid food well so we mixed up a big bowl of rice cereal with pureed meat, vegetables, and fruit and threw in all of his supplements (vitamins, minerals, cod liver oil, etc.), gave it a whirl, and fed it to him with a spoon. We called it glop. Liam loved glop. It makes me chuckle to think back to those days and how Gary and I would ask one another “Did you give Liam his glop yet?” We didn’t want to overdose him on supplements by accidentally giving it to him twice. Liam did enjoy gluten free waffles. Gary invented the “waffle pizza” which was ground meats and veggies mixed with dairy free butter substitute and spread on a waffle. If we cut the waffle pizza up in pieces and presented it to Liam “spread” side down, he would eat it without objection. It always seemed strange to me how Liam would eat these things happily but Popsicles, juice, Cheerios, pasta, bananas, candy were responded to as if they were poison. We got really creative over time it became sort of an obsession for me and I spent many hours in the kitchen whipping up various ways to sneak calories into Liam. We were happy to finally have some support and to finally get some nutrition into him. He made it back onto the weight chart, only to the tenth percentile, but he was on it and that was confirmation that we were on the right track.
Solving Liam’s gastrointestinal issues proved to be much more difficult. No matter what we did, Liam would still have explosive diarrhea, often multiple times per day. Changing his diaper was always a major chore and, in retrospect, we should have bought stock in baby wipes because we sure went through them like wildfire. We requested that Liam’s pediatrician test his antibodies to gluten to rule out the possibility of Celiac Disease which can produce the symptoms that Liam was experiencing. I didn’t really feel that Liam had Celiac because the treatment was removing gluten from the diet, which we had already done, and Liam still had major diarrhea. The test results were interesting, but not likely suggestive of Celiac. I won’t get too technical by explaining the difference between IGG and IGA antibodies, but this test showed that Liam’s body was producing sky high IGG antibodies to gluten, which is not normal. His IGA antibodies were low (normal). In Celiac, it is usually the IGA antibodies that are elevated. Nonetheless, we were referred to a gastroenterologist for further evaluation. We were not able to get an appointment with this specialist for six months, so we had to wait. Finally, the big day arrived. We were so hoping to get some help for Liam, some kind of treatment for his diarrhea and poor growth.
This appointment was a major disaster and the beginning of a deepening understanding of the stigma that surrounds children with autism and their parents within the medical community, especially when it comes to the concept that “leaky gut syndrome” and the speculation swirling around childhood immunizations, in particular MMR, may be implicated in this condition. Being unaware of how we might be viewed, I openly shared with her our observations, theories and interventions thus far. In response to our story, her demeanor suggested that she was judging us to be parents who were being “taken” by vulturous charlatans who preyed upon desperate parents seeking help for their un-helpable children by offering unsubstantiated theories and treatment. She didn’t really seem curious about Liam or our experiences. In addition to consistently calling him by the wrong name, referring to him as a “she”, and talking about another patient with one of the nurses in front of us (major HIPPA violation) she had already made up her mind that there was no reason to do any testing and that we should put Liam back on gluten. She did say that if we wanted to test him for Celiac we would need to put him back on gluten for three months and then do a colonoscopy to test for Celiac. She couldn’t really say if she felt there was a chance he did have Celiac (which would be important to know). I did know that I wasn’t about to put Liam back on gluten because he was doing so much better off of it – he was actually eating, had gained some weight, was no longer hallucinating at mealtime. Part of me was a little mad that we weren’t seen in a timelier manner because at the time we were referred to this specialist we had just taken Liam off of gluten. We could have done the test for Celiac at that point rather than risking feeding him gluten again. I didn’t trust this doctors interest in Liam anyway, and I certainly wasn’t going to go back to a gluten containing diet under her suggestion. I may have been more persuaded if I felt that she was interested in Liam’s case and truly wanting to partner with us to help our son. She also bluntly stated “Well, if his height to weight ration gets any worse we’ll have to tube feed him.” “Tube feed him! Why?” I didn’t understand her willingness to stick a tube down his nose but resistance to actually investigating the source of his diarrhea. No way was I going to jump to tube feeding as an intervention, not until all of my efforts to understand what was wrong and remedy the underlying problem had failed. Her final “recommendation” was to enter Liam into her research study for failure to thrive. This study was looking at the hunger center in the brain and how it may or may not be implicated in failure to thrive. She admitted that there would be little or no benefit to Liam himself by being part of this study, but that his contribution may add to medicine’s understanding of failure to thrive. Being part of this study meant hospitalizing Liam 3 times throughout the year for several days. No thank you. I felt that Liam was hungry and that his poor growth and diarrhea was much better explained by the autism literature than something to do with hunger. I certainly wasn’t going to put Liam through any evaluations and separations from home for this woman and her interests. We left, never to return and I’ve never regretted our decision.
To be continued
At meal times, if Liam ate anything, he would often end up staring off into space. Well, not space exactly. It seemed as if he was staring at something very specific, just something that we could not see. He would stare very intently and laugh and laugh. We would hold our hand up in front of his eyes and he would reach up and push our hand out of the way or look around it, staring fixedly at this unknown thing. We used to say, “Liam sees angles.” We thought this was cute. He was so quiet and serious as an older baby and, with this behavior, we tried to find some meaning in it – he was a little Buddha, a spiritual being. After I began my education in autism I came to understand that this behavior was more likely an indication that Liam was hallucinating. It is theorized that some children with autism have an inability to properly digest the proteins in wheat (gluten) and dairy (casein). The proteins are only broken down partially and become similar in chemical structure to morphine. I also learned how chronic infections such as ear infections are common in these same children with autism and that, due to these infections and subsequent overuse of antibiotics, these children develop yeast infections and an overgrowth of bad (not beneficial) bacteria. The antibiotics not only kill off the offending bacteria responsible for the infection, but also the beneficial good bacteria and this results in an imbalance of the gut flora so essential for healthy digestion and overall gut health. The improperly digested proteins in combination with the bacteria and yeast overgrowth can damage the intestinal lining making it porous. A healthy intestinal track only allows certain essential nutrients to enter the blood stream, keeping everything else in the intestines. When the intestines become damaged, things that should not enter the blood stream can leak out. This is known as “leaky gut syndrome.” In the case of improperly digested gluten and casein, as it is similar in structure to morphine which can permeate the blood brain barrier, so too do these proteins, which is why Liam would hallucinate after eating. Reading about this was a shock. This behavior that I found to be cute, spiritual like, was actually a serious problem and something that could be hurting Liam’s brain. It certainly was not helping Liam to connect with the real world or pay attention to things that are relevant. No wonder he could stare at the lines created by repetitively opening and closing doors and drawers with such focus and glee for hours, he was tripping. With Liam’s failure to thrive, extremely limited (almost non-existent) diet, and failing health, we had no qualms about trying the Gluten Free Casein Free (GFCF) diet. I couldn’t implement it fast enough. Within three days of no dairy products, Liam was suddenly free of his respiratory illness. No more coughing, runny nose, elevated temperatures, or ear infections (ear infections did return at age 4 – more on that later). It was amazing. Gluten takes longer (about 3 months) to get out of your system. With the removal of gluten we did see an end to the baby Buddha behavior and he seemed more “with-it.” He has remained GFCF ever since.
We began seeing a naturopathic physician who was well known in the community for utilizing the DAN! Protocol with autistic children. She helped us navigate further treatments for Liam such as vitamin and mineral and fatty acid supplementation, all aimed at restoring the imbalances in his body and helping to repair his damaged gut. We found a super supportive nutritionist who formulated a GFCF formula replacement for Liam that was a combination of fortified rice milk, gluten free rice protein powder, brown rice syrup, and flax oil. We would mix up a big batch of this for Liam every day and to our amazement he would gulp it down. Unbelievable. Liam still wasn’t eating solid food well so we mixed up a big bowl of rice cereal with pureed meat, vegetables, and fruit and threw in all of his supplements (vitamins, minerals, cod liver oil, etc.), gave it a whirl, and fed it to him with a spoon. We called it glop. Liam loved glop. It makes me chuckle to think back to those days and how Gary and I would ask one another “Did you give Liam his glop yet?” We didn’t want to overdose him on supplements by accidentally giving it to him twice. Liam did enjoy gluten free waffles. Gary invented the “waffle pizza” which was ground meats and veggies mixed with dairy free butter substitute and spread on a waffle. If we cut the waffle pizza up in pieces and presented it to Liam “spread” side down, he would eat it without objection. It always seemed strange to me how Liam would eat these things happily but Popsicles, juice, Cheerios, pasta, bananas, candy were responded to as if they were poison. We got really creative over time it became sort of an obsession for me and I spent many hours in the kitchen whipping up various ways to sneak calories into Liam. We were happy to finally have some support and to finally get some nutrition into him. He made it back onto the weight chart, only to the tenth percentile, but he was on it and that was confirmation that we were on the right track.
Solving Liam’s gastrointestinal issues proved to be much more difficult. No matter what we did, Liam would still have explosive diarrhea, often multiple times per day. Changing his diaper was always a major chore and, in retrospect, we should have bought stock in baby wipes because we sure went through them like wildfire. We requested that Liam’s pediatrician test his antibodies to gluten to rule out the possibility of Celiac Disease which can produce the symptoms that Liam was experiencing. I didn’t really feel that Liam had Celiac because the treatment was removing gluten from the diet, which we had already done, and Liam still had major diarrhea. The test results were interesting, but not likely suggestive of Celiac. I won’t get too technical by explaining the difference between IGG and IGA antibodies, but this test showed that Liam’s body was producing sky high IGG antibodies to gluten, which is not normal. His IGA antibodies were low (normal). In Celiac, it is usually the IGA antibodies that are elevated. Nonetheless, we were referred to a gastroenterologist for further evaluation. We were not able to get an appointment with this specialist for six months, so we had to wait. Finally, the big day arrived. We were so hoping to get some help for Liam, some kind of treatment for his diarrhea and poor growth.
This appointment was a major disaster and the beginning of a deepening understanding of the stigma that surrounds children with autism and their parents within the medical community, especially when it comes to the concept that “leaky gut syndrome” and the speculation swirling around childhood immunizations, in particular MMR, may be implicated in this condition. Being unaware of how we might be viewed, I openly shared with her our observations, theories and interventions thus far. In response to our story, her demeanor suggested that she was judging us to be parents who were being “taken” by vulturous charlatans who preyed upon desperate parents seeking help for their un-helpable children by offering unsubstantiated theories and treatment. She didn’t really seem curious about Liam or our experiences. In addition to consistently calling him by the wrong name, referring to him as a “she”, and talking about another patient with one of the nurses in front of us (major HIPPA violation) she had already made up her mind that there was no reason to do any testing and that we should put Liam back on gluten. She did say that if we wanted to test him for Celiac we would need to put him back on gluten for three months and then do a colonoscopy to test for Celiac. She couldn’t really say if she felt there was a chance he did have Celiac (which would be important to know). I did know that I wasn’t about to put Liam back on gluten because he was doing so much better off of it – he was actually eating, had gained some weight, was no longer hallucinating at mealtime. Part of me was a little mad that we weren’t seen in a timelier manner because at the time we were referred to this specialist we had just taken Liam off of gluten. We could have done the test for Celiac at that point rather than risking feeding him gluten again. I didn’t trust this doctors interest in Liam anyway, and I certainly wasn’t going to go back to a gluten containing diet under her suggestion. I may have been more persuaded if I felt that she was interested in Liam’s case and truly wanting to partner with us to help our son. She also bluntly stated “Well, if his height to weight ration gets any worse we’ll have to tube feed him.” “Tube feed him! Why?” I didn’t understand her willingness to stick a tube down his nose but resistance to actually investigating the source of his diarrhea. No way was I going to jump to tube feeding as an intervention, not until all of my efforts to understand what was wrong and remedy the underlying problem had failed. Her final “recommendation” was to enter Liam into her research study for failure to thrive. This study was looking at the hunger center in the brain and how it may or may not be implicated in failure to thrive. She admitted that there would be little or no benefit to Liam himself by being part of this study, but that his contribution may add to medicine’s understanding of failure to thrive. Being part of this study meant hospitalizing Liam 3 times throughout the year for several days. No thank you. I felt that Liam was hungry and that his poor growth and diarrhea was much better explained by the autism literature than something to do with hunger. I certainly wasn’t going to put Liam through any evaluations and separations from home for this woman and her interests. We left, never to return and I’ve never regretted our decision.
To be continued
Tuesday, August 18, 2009
Diggers And Toast
I wake up at about 5:15 every morning on workdays. I like to capture at least a little morning time to myself, so the trick is to get up before Liam wakes up. It usually doesn’t happen. Liam can be in a deep sleep but he seems to have this extra sense. No matter how quietly I get up and no matter how seemingly dead to the world he is, he springs right up with one thing and one thing only on his mind:
Diggers.
I made the mistake once of showing him some You Tube videos of construction equipment and now it has become an obsession. He can sit and watch diggers, bulldozers, cranes, dump trucks, etc. for as long as we let him. And if we don’t let him, it sounds something like this: “Diggers? Diggers? Diggers? Diggers? I want diggers. Diggers? Diggers? Diggers? Hot dog? I want diggers. Diggers? Diggers? Diggers? Diggers? Diggers? Diggers?”
“Oh, you want diggers.”
“Yeah.”
So when Liam throws this digger mantra at his pre-coffee dad, what starts as an extreme annoyance quickly becomes an opportunity to grab a little “me” time as I pull out the laptop and get him set up with the You Tube diggers. Once he is in front of his diggers with an eager grin on his face I can grab at least one cup of coffee before my day starts.
The other thing that is important for Liam in the morning is that he eats fairly soon after he wakes up. If we wait too long to feed him, even if he doesn’t act hungry, he can get extremely agitated. If he is wanting his diggers he will not eat, but if he is watching his diggers he will gladly eat while he’s watching. I usually make him some gluten free toast (his system can’t tolerate wheat or dairy) with peanut butter and jelly on it. This is how we start the day; Liam watching his diggers eating peanut butter and jelly toast and me slowly waking up with my coffee to the sound of working diggers on You Tube, delighted giggles, and incoherent comments about diggers digging.
As much as this makes for an easier morning, there are a few drawbacks. Liam can’t keep his hands off the computer while he is watching and he just starts pushing buttons that mess up the computer in ways I don’t understand, so I sometimes have to spend some time trying to undo whatever it is he just did while he is screaming “DIGGERS?!” repeatedly in my ear. It is hard to disengage him from the digger videos but usually with a little advanced warning such as “One more and then all done.” We can get on with our day. There is always peanut butter and jelly on my keyboard.
After coffee I can usually grab a quick shower and get ready to walk Chester while Liam is still watching diggers and eating. The next big task is getting Angie up so I can get the dog out the door. She is not a good getter upper. This I don’t understand. I always tell her “It’s like taking off a band aid. Do it quick and painless and once you’re up it’s great.” She clearly does not see the wisdom in my method as she makes the process as slow and painful as possible.
So walking Chester is another way of grabbing a little more of the morning for myself. In the winter it is still dark when I’m out and it is a really weird but strangely satisfying feeling to be out and about at this time.
I get about 30 minutes of dog walking and then I come back to my favorite scene: The computer is off, Angie is on the couch trying to drink coffee with Liam, jelly faced, snuggled up against her giggling softly, putting her hands on his face, and loving every minute of this precious snuggle time with his mommy. It is clear that mommy time far outweighs any draw the diggers may have had just minutes ago. Although Liam will follow me around the house all day wanting to do whatever I’m doing, I do not have the kind of snuggle appeal that Angie has. She can sit still with him and he can sit still with her and they can enjoy each other that way. If it’s Liam and me he always wants to be doing something active with me (if the diggers aren’t on), not sitting still. I don’t mind this for the most part. I like that he sees us differently. It is just more evidence that he is distinctively engaged with the world and understands the different nature of different relationships, whether the relationship is with Mommy, Daddy, Claire, Chester, or diggers.
Diggers.
I made the mistake once of showing him some You Tube videos of construction equipment and now it has become an obsession. He can sit and watch diggers, bulldozers, cranes, dump trucks, etc. for as long as we let him. And if we don’t let him, it sounds something like this: “Diggers? Diggers? Diggers? Diggers? I want diggers. Diggers? Diggers? Diggers? Hot dog? I want diggers. Diggers? Diggers? Diggers? Diggers? Diggers? Diggers?”
“Oh, you want diggers.”
“Yeah.”
So when Liam throws this digger mantra at his pre-coffee dad, what starts as an extreme annoyance quickly becomes an opportunity to grab a little “me” time as I pull out the laptop and get him set up with the You Tube diggers. Once he is in front of his diggers with an eager grin on his face I can grab at least one cup of coffee before my day starts.
The other thing that is important for Liam in the morning is that he eats fairly soon after he wakes up. If we wait too long to feed him, even if he doesn’t act hungry, he can get extremely agitated. If he is wanting his diggers he will not eat, but if he is watching his diggers he will gladly eat while he’s watching. I usually make him some gluten free toast (his system can’t tolerate wheat or dairy) with peanut butter and jelly on it. This is how we start the day; Liam watching his diggers eating peanut butter and jelly toast and me slowly waking up with my coffee to the sound of working diggers on You Tube, delighted giggles, and incoherent comments about diggers digging.
As much as this makes for an easier morning, there are a few drawbacks. Liam can’t keep his hands off the computer while he is watching and he just starts pushing buttons that mess up the computer in ways I don’t understand, so I sometimes have to spend some time trying to undo whatever it is he just did while he is screaming “DIGGERS?!” repeatedly in my ear. It is hard to disengage him from the digger videos but usually with a little advanced warning such as “One more and then all done.” We can get on with our day. There is always peanut butter and jelly on my keyboard.
After coffee I can usually grab a quick shower and get ready to walk Chester while Liam is still watching diggers and eating. The next big task is getting Angie up so I can get the dog out the door. She is not a good getter upper. This I don’t understand. I always tell her “It’s like taking off a band aid. Do it quick and painless and once you’re up it’s great.” She clearly does not see the wisdom in my method as she makes the process as slow and painful as possible.
So walking Chester is another way of grabbing a little more of the morning for myself. In the winter it is still dark when I’m out and it is a really weird but strangely satisfying feeling to be out and about at this time.
I get about 30 minutes of dog walking and then I come back to my favorite scene: The computer is off, Angie is on the couch trying to drink coffee with Liam, jelly faced, snuggled up against her giggling softly, putting her hands on his face, and loving every minute of this precious snuggle time with his mommy. It is clear that mommy time far outweighs any draw the diggers may have had just minutes ago. Although Liam will follow me around the house all day wanting to do whatever I’m doing, I do not have the kind of snuggle appeal that Angie has. She can sit still with him and he can sit still with her and they can enjoy each other that way. If it’s Liam and me he always wants to be doing something active with me (if the diggers aren’t on), not sitting still. I don’t mind this for the most part. I like that he sees us differently. It is just more evidence that he is distinctively engaged with the world and understands the different nature of different relationships, whether the relationship is with Mommy, Daddy, Claire, Chester, or diggers.
Subscribe to:
Posts (Atom)
Posts
