So I decided this past weekend that it’s time to revisit my blog. I kind of abandoned this site after I tried so hard to qualify for the Boston Marathon. When that didn’t happen in 2014, I lost interest in running for a while (read: I was totally exhausted!) and also stopped writing. After moving from the SF Bay Area to San Diego, gaining about 30 pounds and experiencing some more life – I realized that I need to run and I need to write. I’m running my first half marathon in 3 years on Sunday and here I am writing.
Speaking of experiencing some life, we got an unsurprising curve ball a few weeks ago that’s really prompted me to get back in front of the keyboard. Our amazing 8-year old son J, was just diagnosed autistic. It occurred to me that many other parents are going through similar experiences so it might be beneficial for me, and for them, to document our family’s journey.
Given that the ASD (Autism Spectrum Disorder) evaluation was our idea, we were not entirely surprised. However, reading the psychologist report summary was still sobering. J has a lot more going on than we understood.
So let’s begin at the beginning. In this post, I’m just going to share how we got to where we are. In the next few posts, I’ll share about autism, his diagnosis and what we’re doing for him.
J is 8 now, nearly 9, and 1 week from finishing his 2nd grade year. He’s in 2nd, not 3rd because his preschool and kindergarten teachers both felt he was a little immature to start kindergarten the previous year. Looking back, those sentiments were more prescient than I understood at the time.
The only unique things about him that I can remember from J’s earliest days were (a) the rigidity of our schedule and (b) his extreme pickiness with food. When I remember back to our first year together, the sheer panic I felt if I arrived home from errands 5 minutes “late” is still palpable. J’s nap schedule was incredibly strict and if I missed a nap, a feeding or anything else even by a few minutes, he would be off (read: tantrum!) for the rest of the day. Other parent’s thought my husband and I were crazy for refusing to fudge his schedule even a little bit. I used to laugh at myself about it – now I realize that rigidity may be part of his current diagnosis.
On the eating side? Forget about it. He simply would not eat foods that weren’t sweet or cheese/wheat based. With a handful exceptions, he’s never eaten meat (except chicken nuggets), vegetables (except baby carrots) or fruit (except bananas and strawberries). But carbs? All day long. He only likes chocolate ice cream but prefers soft serve or frozen yogurt. He only likes old fashioned donuts from Starbucks. Sometimes he’ll take one from a donut shop but that’s not really his vibe. As a holistic health coach, his diet is my worst nightmare. His idea of a great dinner? Spaghetti with “sprinkle cheese.” Yep, that white stuff in the green canister.
I can work myself into a deep panic if I allow myself to think too hard about the dearth of nutrition in J’s diet. We’ve tried so many things…from forcing him to bribing him, from Occupational Therapy to food chaining. The only fault in our approach I can find is consistency. I’ve frankly just gotten too exhausted to continue. The path I’ve chosen is one of family harmony…it’s just too hard to push him on this topic. If you have a picky eater, you know what I’m talking about. There’s no such thing as winning – only hard feelings and family discord. I finally realized it wasn’t worth it.
About 2 years ago, I noticed that J started chewing on the collars of his t-shirts. It started happening very suddenly and it was unnerving. He seemed extremely vulnerable. He was finishing his kindergarten year that week. In fact, the first day I noticed him chewing was the day that his teacher took the students on a school tour to explain to them how first grade would be different from kindergarten. I assumed that that discussion had him anxious for the start of 1st grade and that the chewing would subside once we got underway with our fun summer plans. It also happened that his little sister was away that week on a Hawaiian adventure with her grandmother and Daddy was out of town on a business trip. So there were a few unique things going on, but nothing I didn’t think we could handle. I doubt I’ll ever really know.
Our then-neighbor and forever-friend, Sara, is a neuro-psychologist who specializes in autism diagnosis. She often told me about how she’d be visiting a school in some far flung locale to help a family determine if it might be right for their child. It never occurred to me that I’d be seeking her professional opinions about my little guy.
When I called her to ask what she thought of the t-shirt chewing, she said, “I suspect he has Sensory Processing Disorder.” She wasn’t basing that assessment on one conversation but on her observations of him over time, playing with her own children, etc. I was always complaining to her about how his limited diet. She had a gaggle of kiddos over for a sleepover one night and bribed each kid with donuts if they ate some bacon first. As you can imagine, this wasn’t a hard sell for most of the party goers. Not my guy – he refused the bacon and the donut – trying a foreign food wasn’t worth it. He’d literally rather go hungry than taste something new. That really struck her – she was eventually able to get him to lick the bacon. She said, “you can bribe most kids but he could not do it and it seemed clear that he really wanted to.” It was his fear and real inability to try the new food that was so unique. I mean, who doesn’t like BACON??? What kid wouldn’t give their left pinky for a donut??
Obviously there was a lot more to it than that, but that conversation with Sara got me thinking. I bought him a necklace to chew on instead of his shirts – he chewed through the hard silicon in one day. We started Occupational Therapy, again, for feeding. We went to the pediatrician and a psychologist – all of whom downplayed his symptoms and suggested we needed to try harder to get him to eat more at home. The psychologist even said she felt like the real issue was the chewy necklace – she said the necklace gave him an outlet so that he wouldn’t have to connect with her in therapy. She suggested I take away the necklaces and start 1st grade – stop worrying about what isn’t there.
So we didn’t replace the broken necklace. J started 1st grade, the chewing faded away and we went on as if all was fine.
And a few months later, a job change moved us to San Diego. J started in his second first grade class mid-year and shown like a star. All the kids welcomed the “new kid” with open arms, his teacher thought he was the bee’s knees (he is!) and we had a classroom full of new friends.
Fast forward another year and change…a few more life changes came our way. That job we moved down here for? Didn’t work out. On the bright-side, we spent the summer together as a family. On the dark-side, we were pretty worried that our savings would run out before we figured out next steps.
Thankfully that didn’t happen. After 6 years at home raising kiddos, I found a job and then 2 weeks later, Dad found a job. Our kiddos started school in August as part of a 2-income family for the first time. Obviously that change involved a new set of challenges, including full time childcare. We tried really hard to make these transitions as seamless as possible for our children, but it’s just not possible for them not to notice that Dad wasn’t working and later that Mom and Dad are both working. (*Side note – we’re very grateful for the relatively simple experience of 4 jobless months we experienced. While we have new challenges, we’re very aware that our challenges are not unique and that everyone of our problems are very good problems to have!)
So our little guy started second grade like a champ. He loved his new teacher and his class was full of bright, sweet kiddos. Our little girl also started Transitional Kindergarten and for the first time, we had two elementary schoolers. They both played soccer. We went to the snow after Christmas. Life is grand!
Somewhere around the end of the calendar year (2016), our little guy started chewing on his t-shirts again. We tried to ask him what was wrong. We weren’t sure what to do. I forgot about the necklaces. The pediatrician suggested a local psychologist, who turned out not to be covered by our insurance and her fee is $250 per hour. Ouch.
But a plan was coming together. What we needed to do next was have our guy evaluated for Autism Spectrum Disorders by a child psychologist/neuropsychologist.
In my next post, I’ll share more about how we found a psychologist, the evaluation, the diagnosis and where we are now. Thanks for reading!