Good evening and thank goodness for wine! It’s mid June and it has finally become apparent that others may want to know what is going on with us the last year or so; and with a large glass of wine I can begin.
Overall, things are great – fantastic even; with two gorgeous, wonderful boys, fulfilling jobs and so many wonderful friends and family in our lives. But there are moments that are very hard, harder than they should be. As I type this I can hear my sweet baby crying and it breaks my heart a little more. Almost every day when I talk to people I think “they can’t even begin to understand” so even though it brings tears to my eyes – I want to try to explain- some of how it feels and mostly what is happening.
A timeline of J: As a baby, J was adorable and practically perfect – a sweet, loving little cherub who met all of his developmental milestones on time or early (except for crawling, which he never did). He had tons of words, great eye contact and smiles and walked at 11 months with good balance. There were little things we noticed such as a very sensitive gag reflex (Gram you will remember forever the avocado incident!) and a propensity to fall straight backwards without being able to catch himself or a sensitivity to noise but for the most part we just enjoyed our darling baby. He started having quite severe separation anxiety around 18 months – a time that was difficult for me as his mother because I was both devastated by his reaction when I left him and embarrassed by people telling me that it was my fault and that I was coddling him too much.
In January of 2011 we enrolled J in Montessori preschool with much reassurance that he would get used to it and stop crying…..3 months later he would only stop crying to repeat phrases over and over again. We thought the teacher just didn’t like him (I’m sure she didn’t because he cried so much!) and took him for a developmental assessment with our pediatrician in April. That doctor evaluated him and said he was fine – if anything gifted with an incredible memory and strong intellect. In August we took him to another pediatrician for his 3 year check up and while he passed all of her little tests she was concerned that he was “quirky” enough to justify a more thorough eval. We were referred to Rady Children’s Hospital and attended an eval there with 2 Ph.d Developmental Psychologists on Oct 13th 2011 (with a three week old T in tow). Of course J charmed them and impressed them…we were all shocked when they came back with a diagnosis of 299.00 Autism.
I think I was numb to it when they put the paper in front of me – tiny T in my arms and J playing happily with a Thomas the train on the floor. I remember smiling as if to reassure the evaluators and everyone that we were still really fine. We talked nonchalantly that week about how diagnosis’ like these were given so that more kids could get services and how he never would have been diagnosed 5 years prior. We decided to not tell anyone about the “A” word as they wouldn’t understand and would treat J differently. Instead we told people that he has a sensory processing disorder – which is a part of his diagnosis but not the whole shebang. In reality, we were in denial. The other piece of that is that being given a label for J did not in any way change him or our family- he was still the same child.
I did and still do feel incredibly lucky that J is otherwise healthy and I am trying every day to understand what is happening to him and how I can help him. The only thing I want for him is to be happy. I remember telling the evaluator – “he has so much anxiety, but he’s such a sweetheart – he’s not an anxious kid it just comes out. How do I take his fear away?” Now I ask everyone that – how can we help him feel happy and less worried…but it is part of autism. That is the main reason I want more people to talk about this – to network and share and come up with solutions. I also don’t want autism to be something to be ashamed of. One physician equated autism with migraines or seizures… it is a neurological disorder that we don’t fully understand yet.
Next chapter- we took our newly minted 299 and brandished it like a silver cross to all sorts of agencies to see what they would give us. It was a miracle that I was on maternity leave and able to act as a full time advocate or the process may have taken forever but now we have a pretty comprehensive set of services and hopefully a therapeutic and educational environment for J. We came to understand that J has some pretty classic symptoms of high functioning autism and some issues with sensory processing – primarily auditory and vestibular. He has no cognitive delay and has a profoundly strong memory but it is amazing that he learns so well given a very short attention span and difficulty with motor planning and pragmatic skills.
After another evaluation by the school district and a state agency called Regional Center J started school at special day preschool on January 14th 2012. He takes a transport van that picks him up and drops him off at our house and he grabs his backpack and cheerfully runs to greet the driver every day (I previously could never have conceived of this!!!). He has school for a half day that includes some speech and OT and in addition he has private speech therapy twice a week, occupational therapy twice a week, ABA therapy in our home 5 days a week and therapeutic listening twice a day for 30 minutes. It’s a pretty full schedule :). We have also recently adopted a gluten free/casein free diet and are consulting a homeopath.
In the last nine months many things have changed: our perspectives, our attitude, our home and most importantly our goals. J is progressing rapidly. Shortly after he started school he began telling us that his name is “J” and that is how everyone at school knows him – an adjustment for us but super easy when you hear his cute voice tell you that his “real” name is slightly different. I think it makes him sound kind of Irish but with those gorgeous green eyes he can pull off anything.
Here are some ways that J has changed: he can now ride a bike, he tries new foods and eats with utensils, he colors, he follows directions, he is aware of his own safety, he can adjust to new people, he can tolerate most sounds. There are days and even weeks when things seem to be going fantastically and when you can’t tell that anything at all is up…then there are days and yes weeks when things unravel completely and everything from sleeping to eating to just playing get really, really hard.
It would be lovely to simplify autism and just say that J needs to “try harder” or that we need to “have better discipline” in our parenting and that all would be fixed. However, like most things it is more complicated than that and we are doing the best that we can. It is thought that the human brain is constantly re-wiring and subject to be changed throughout life but that it may be particularly plastic before the age of 5. That is why we have so many therapies in place now and why we reach out to anyone who may have ideas. If you have heard about something that may help – even if it sounds bizarre – please let us know.
In a related topic – a strong genetic link has been identified for autism and siblings are at a 1 in 5 risk. We enrolled T in a study at UCSD and he has participated in visual, developmental and brain wave testing since he was 3 months. At 1 year of age they will be able to give us some concrete information about T and will continue to study his progress until age 3 regardless. So far we have found that he makes great eye contact, vocalizations and smiles and laughs easily so at the very least we are feeling relieved that he doesn’t appear to have a severe form of autism.
In all honesty, this past year has been really quite weird – a mixture of total joy, confusion and exhaustion. I want all of our family and friends to feel included and valued as you very much are – we all feel so supported and loved by you all and so grateful to have you in our lives. I also want to thank you for your patience and understanding when I do stuff that looks bizarre or forget to call you back!
Periodically I will try to update – we have some hilarious stories now and then and some great pictures too. Thanks for reading~