Stone Update – May 19, 2010

First, I truly want to thank the many people who have offered their support and encouragement to Stone via this blog and my Facebook updates. It has provided me with a lot of much-needed strength and resolve to continue helping Stone in any way possible.

It’s now been 3 months since I wrote about Stone’s big breakthrough night when he counted out loud for the first time. And I’ve mentioned him in a few posts since then but I thought this would be a good opportunity to provide a quarterly update on his progress. The exciting news is that he is continuing to make tremendous progress in many areas of his development. He is literally adding new words to his vocabulary daily and he is clearly motivated and excited to work and improve his communication. I need to qualify this a bit by noting that the words he articulates are still very much in “Stone-speak” so it is often difficult for someone who is not as familiar with Stone to understand what he is saying. For example, he will point at a balloon and say “loon” or a banana and say “nana.” For the most part he is primarily speaking single syllable words but he has more recently (within the past week or so) tried to verbalize a few multi-syllable words as well – sometimes with surprising success.

Today when I picked him up from his extended preschool class the teacher also commented how much progress they are seeing with Stone at school. She said (and we’ve observed as well) that he is being extremely verbal and trying to say new words all the time. He’s also studying our mouths while we’re talking and trying to imitate us – all very good signs. And for the first time, I heard him say clearly “bye” to the teacher when we left to go back to the car.

Also encouraging has been much greater interaction between Stone and Ty. It’s now quite common for one to be chasing the other or for them to be wrestling and playing together – laughing the whole time. We are still a ways from them playing any formal games together but it’s clear now that they are brothers and they love each other very much.

Stone has also gradually been spending a lot more time with us and just hanging out – something he never did before. It used to be that he would always want to be in another room where he could watch his beloved Little Einsteins videos and have little to do with us as a group. But now when we are playing the Wii he will often come in and check out the game we’re playing and quite often get excited and want to watch the game very closely (like directly in front of the tv). We consider this a new challenge level. And today – for the first time – I was able to help Stone play a bit of a bowling game with Ty – and he seemed to enjoy it. As I did the first time I got Ty to play the game, I had to hold the Wii controller and release the button to help roll the ball. But I helped him swing his arm and we watched the ball roll slowly down the lane and knock down a collection of pins. He really got a kick out of it and we were able to complete 4 frames before we collectively got distracted with something else and had to abandon the game. But I consider this to be another good sign.

Stone formally started speech therapy 2 weeks ago at a well-regarded speech and hearing clinic in Lynnwood (about 10 minutes from our home). His appointments are weekly and one hour long. This therapy is not solely focused on building his vocabulary or simply trying to get him to speak – the therapist is going to be working on intent and real interaction. It is typical with developmentally delayed children for their communication to be one-sided. That is, they usually only say something (or communicate with you) when they want something from you and they need to be helped. Obviously this is much different than sharing an experience or thought. Renee and I both like the speech therapist very much and are confident she will help Stone make big strides in the next 12-24 months.

Through pure luck we also came across a childcare professional in Everett who specializes in children with Autism. She runs a fabulous indoor playground (which is how we found her – we were simply looking for a place for the twins to play one rainy day in April) and has a series of therapy sessions with children throughout the week. She also has twin sons – although hers are now 19. And one of her sons was also diagnosed with Autism as a toddler – and she says that he is now cured and shows no signs of that early diagnosis. She provided numerous other case studies that are impressive – photos and videos of kids where you can literally see a change in their complexion and expressions over a short period of time, thanks in part to her therapy. We enrolled Stone and Ty in her summer school so this will serve as a replacement for preschool once that is completed in June. Both boys love visiting the center (Babypower Forever) and respond to her very well. Again, we are very excited about beginning a more formal program with her and watching the progress through the summer.

As an aside, it has been encouraging to see Autism receive additional recognition and visibility in the mainstream media. Renee and I have both been avid fans of Celebrity Apprentice this season and have been cheering for Holly Robinson Peete (who has now made it to the finals). As many people know, Holly is also the mother of a son with Autism and she and her husband founded the HollyRod Foundation to help support families with the financial burdons associated with Autism treatment. I remember seeing Holly interviewed years ago about Autism and the issues she and Rodney faced from receiving the diagnosis to actually dealing with the condition on a daily basis and I have always been impressed with her poise and articulation when discussing the topic. I hope she pulls off the big win this Sunday in the finale.

I have also heard positive feedback about the first season of the NBC series “Parenthood” and how it has incorporated a boy with Autism/Aspergers into its main storyline (the boy is the son of one of the main characters). Up until tonight I had yet to see an episode but I watched it for the first time and was very impressed (and moved). One of the storylines for this particular episode was the family’s participation in a fundraising walkathon for Austism Speaks – a well-known non-profit organization that supports those afflicted with Autism. Families/teams had to log walks leading up to the big event and the team that logged the most miles won first prize (and a trophy). The son (with Aspergers) was obssessed with winning the trophy – and in the end the family did win it (much to his delight). A poignant scene was when the boys mother was visiting a therapist and asking when she should talk to her son about his “differences” with other kids. Like so many parents, she is already looking far down the road and wondering about new situations facing her son – and trying to anticipate them as much as possible. The therapists answer was realistic but hardly totally assuring. He told her that her son would tell her when the time would be when she’d have to address his differences with peers. And he said that this will likely happen when some of the complexities of social relationships/dynamics are more challenging than what he can handle – such as sleepovers or team sports. She started crying and asked if her son would never be able to experience these activities and the therapist told her not necessarily – but navigating these might be trickier than they would be with a “normal” kid. But he quickly added “don’t worry about that now – just focus on today.” And while that is certainly true – I think it is very much easier said than done for ANY parent – let alone one who has a special needs child.  But the show was very well done and I look forward to catching future (and previous) episodes.