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.