Reflections on a Year Gone By…

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!