Keeping It Real: When Autism Bites

The majority of my posts and updates about Stone tend to be positive and optimistic – I love sharing the notes emailed to us from his teachers and therapists that showcase some of the progress he’s made in any given area – no matter how small. And the response I receive from this sharing is outstanding – the outpouring of love and support from so many from all over the world is heartwarming and encouraging simultaneously.

But it probably comes to no surprise to anyone (especially fellow parents of kids on the spectrum) that there are a ton of challenges, frustrations and yes, disappointments that also come with this experience. And there has been a part of me that feels that by only focusing and sharing the positive experiences that I’m doing a bit of disservice – especially to those parents of autistic children who may read my blog. Its often said that parents of autistic kids can easily feel isolated, confused and alone. And I think its important that while hope for continued development for our kids is always maintained, a certain level of reality check needs to be in place too so that the full perspective is understood by others as much as possible.

As I said, we’ve been lucky to receive numerous positive reports and emails from Stone’s elementary school teacher since he first became her student last year. But this year has started off a little rockier than last year and it has me concerned. During our parent-teacher conference to review Stone’s IEP (Individualized Education Plan – a requirement for students who receive special services) Stone’s teacher mentioned that she has four more high-need students than she did last year (and no additional resources). So her time with Stone was going to be more limited. Obviously we weren’t thrilled with that given the progress we saw from her last year.

Last week we received a couple of updates we didn’t want to receive from her. Stone has been acting up in class and school in a way that has been quite disruptive. On one day he started screaming in his chair and was crying hysterically, asking for Mommy and Daddy. She said it took nearly 30 minutes for him to calm down. On another day, he pulled down his pants and peed in the school field – obviously behavior that cannot be tolerated and if/when noticed, only isolates him among his classmates even more. He also got a bloody nose and cried and got upset when they tried to walk him back to class. Why is this all happening? We have no idea – we can only guess. We”re wondering if maybe he has a loose or achy tooth – or might be going through growing pains. But here’s the thing – we haven’t been seeing any of this behavior at home. He’s been happy and cooperative with us with no similar types of meltdowns. Of course we can’t ask him what is going on because he’s not capable of telling us. I have no doubt he’s frustrated with something at school – but what that is, who knows? So now I’m trying to decide – do I spend time in class with him to see if I can observe/determine what might be causing this? Will it repeat if he sees me there or will that be enough? Or do we just hope that as has been the case in other situations, this is just a phase that will pass and he’ll adjust accordingly?

In the meantime we are still trying to juggle and determine what extra therapies will help Stone best. Even though we liked the services and staff at Lakeside Center for Autism, the distance was just prohibitive and we found another provider much closer to our home (Bothell Pediatric and Hand Clinic). He’s now in a routine where he is receiving speech and occupational therapy once a week for an hour for each session. But I’m wondering, is this enough? Given that he is still struggling so much with his speech, should we be figuring out ways to get him 2, 3 or 4 hours of speech therapy every week?

We’ve had numerous parents recommend ABA therapy as well – and even went through a stretch of it with Stone for nearly 9 months between 2011-12 before running into problems/issues with that service provider’s billing and administrative issues. While the ABA therapy was partially covered by our insurance at that time, we’ve since discovered that it is no longer covered – at all. Even if we have a physician or psychologist prescribe ABA for Stone (which we have), Regence told us they will not pay a dime towards this therapy because its not covered in our plan. We’re enlisting the help of Washington Autism Alliance & Advocacy (WAAA) – a wonderful organization committed to helping families such as ours. But while we try to sort out the insurance situation, ABA therapy sits on hold for now because the cost for the level/amount of therapy we’d want for Stone would be extremely high. And all I can do is think about the time that is slipping away – each day and week we aren’t providing this therapy and support.

Finally there is the biomedical arena. I’ve written about how we have taken Stone to a local naturopath who has prescribed a variety of supplements that have helped him in some obvious ways (especially his sleep). At the urging of multiple parents in Seattle and Portland areas alike, I secured an appointment for Stone with an Oregon City, OR-based physician who is considered one of the leading International experts in Autism – Dr. Green. Dr. Green only sees new patients on Tuesday mornings at 9 am so I picked up Stone from school on Monday and drove down to my Dad’s house in Vancouver, where we spent the night. Tuesday we spent 3 hours with Dr. Green – a thorough examination and discussion that is unheard of in any other pediatrician’s office. Through my research I knew of special IVs that some doctors prescribe to kids. And given the negative experience I had with Stone and blood draws, I was extremely leery to consider an IV for him. But one parent who had great success with the IVs with her autistic son asked me, “If you thought or knew that these IVs would help Stone talk, would you do it?” Of course the answer was yes. That is my quest. That is what drives me every day with Stone. And so we went through with it – crying and yelling aside.

Dr. Green ran new tests on Stone based on the blood draw that we also took care of (before the IV) and we’re in the process of many more based on urine and saliva samples. We’re receiving back reports about metal toxicity and food panels. I’m finding myself Googling metals and terminology I never heard of before. Multiple times a week I read articles and updates provided on online discussion groups that talk about all kinds of biomedical, biological and chemical topics. I wish now that I had a more scientific brain that could more easily understand all of this terminology and concepts. I wish I would have studied (or paid attention) more to chemistry, biology and all other science classes that would help now.

Stone is less than 3 weeks away from his 8th birthday and he’s still unable to answer many questions we ask him appropriately or in full sentences. I can’t sit and watch sports with him or even play sports with him. He isn’t interested in playing games – he’s still working on basic “give and take” types of activities at school. Has he made a lot of progress over the past couple of years? Absolutely. Have I given up hope in his continued development and potential to lead a productive and happy life? Absolutely not.

But there are still many times when I feel frustrated and scared. I want so badly to find that key that will unlock his passion and potential. I wish we could find an activity that we know he loves that doesn’t involve or feel like therapy for him. He has so much he’s coping with now – and I KNOW that he understands everything that is going on. When I pull out his B12 shots for his daily morning shot, he simply stands up and pulls down his pants and underwear, waiting for it. When I mix up his supplements and prepare to give them to him he comes up to me and says “1, 2, 3..” (which is what I’ve told him to get it done and over with). He takes ALL of his medicine without a complaint. He knows and understands that all of this is supposed to help make him talk better.

And so there you go…a rambling dose of reality from this Dad who is trying to do everything possible to help his son – while also trying to be an active and involved Dad for his twin brother – as well as a Husband and entrepreneur trying to build a marketing agency.

Its no wonder I love sports and microbrews so much.