The small plastic red table and two red chairs was the first purchase we made after Lil D was diagnosed with PDD-NOS (otherwise known as autism spectrum disorder) in 2003. Back then it was all a swirl of terminology, research and advice thrown at me while I stumbled around in a fog, head drowning in the torrent of what was to come.
I had been swimming in deep and dark waters alone with Lil D and the knowledge of his autism for a year before that. And now everyone was thrown into the water with us – his dad, his baby sister and his grandparents. And the life preservers seemed so far off into the distance.
You need to ask the state of New York to provide 30-plus hours of ABA, our diagnosing behavioral pediatrician told us. Your son needs intensive speech and occupational therapy. You need to get that set up for him. You should set up an after-school program for him. He needs to learn to work at a table. He has to learn to mimic speech. He needs to pattern sounds. Start with ABA before anything else. Your best time to make progress and help him is these next few years when he is young.
Wait, wait, wait. What?
I came home, nursed the baby, and decided on three concrete things I could do: Get Lil D into the best school possible for children with autism, hire a speech therapist and buy a kids’ table and chair set so that he would have a place to do his therapy, whatever that may be, at home.
I didn’t know how this therapy would work. I didn’t know if it would help him. I didn’t know what Applied Behavior Analysis was. I didn’t know what schools were available to us in New York City. I didn’t know who the good speech therapists were. I didn’t know how the heck we’d be able to afford this when my husband was doing his medical fellowship and we were living paycheck to paycheck in a one-bedroom-apartment. I didn’t know how I would bear sending my three-year-old nonverbal-lost-in-his-autism-world son to a school into the care of somebody else other than me. I didn’t know how any of this was going to work.
I didn’t know jack squat.
But I knew how to buy a kids’ table and chair set. That, I could do.
Lil D spent countless hours at that red plastic table with speech therapists, home therapists, his sister and me. He learned to eat at that table before we transitioned him to the “big” dining table. (God, how many hours I spent sitting with him, his chair strategically placed backed into a corner so he couldn’t bolt away.) His sister and he sat at that table together while a therapist worked at games they could play together.
He worked on matching programs, play skills, bead lacing, speech programs and yes, tons of ABA trials at that table. The table followed us through New York apartments to our move to Virginia to the home where we currently live now.
He outgrew it years ago, and Amal, Hamza and their cousins and friends used it in their games and crafts, with lines of marker and half-ripped out Dora the Explorer stickers telling its worn history.
Home therapy looks very different now. I’ve learned to trust my judgment and to listen – really listen – to what works for him, what works in our home environment, what works for our life.
Table work has been largely abandoned. Whereas Lil D and his home therapists used to head upstairs to the third floor (in our old house) or downstairs to the basement (in our current home) to do therapy based on things he was learning in school, now therapy occurs all over the house in a variety of ways. He’s learning self-care skills, how to do chores around the house, heading out several times a week for CBIs (community-based instruction) and a variety of other things that I hope will help him gain more independence and the ability to handle himself with minimal support in our local community.
It’s been a hard lesson for me, but I’ve learned to adjust things on the fly — keep our goals in sight but shape the daily work around how he is feeling, how tired he is, what he is able to manage that day. The first question the therapists ask now when they enter our home is how is he doing today? How has his day been so far?
Then, before they move to do anything with him, he gets choices. Like my other kids, there are certain things he needs to complete (call it homework, call it whatever you want) – but also like my other kids, we change things up depending on how he is feeling.
I was thinking about all of this – how things have evolved with Lil D and his autism, with our whole family over the years. What our goals were back them — our hopes and dreams — and what they are now. I thought about all the battles fought, tears cried, high fives slapped, smiles shared, tickles given and deep breaths taken around the perimeters of that little red plastic table.
Of countless frustrating hours working with our first speech therapist only to learn that the way she worked wasn’t working for Lil D. Or the love surge that occurred when I saw Lil D and Amal sit there, ages four-and-half and 18 months, sharing a bowl of Cocoa Puffs. Or wanting to throw that table out of our 14th-floor apartment window after I tried to get him to copy me in stacking some blocks, and he just didn’t understand me.
And in my epic clean-up and de-cluttering of our playroom this past weekend, I looked at that red plastic table and chairs, still a part of our lives after all these years.
And I let it go. Put it in the donation pile.
Our victories and failures are different now. Much bigger and also much more intimate then the scope of that little red plastic table. What I want, want I hope and pray for so desperately for Lil D is different now.
Let it go.