Hope is a One-Way Street

I think that Hope is the number one hallmark of being an Autism Mom. Of course, this can come only after traveling through the stages of your own particular grieving process: Denial, Anger, Sadness. If you let her, Hope can even go along for the ride with these big guys — albeit smaller, quiet, feeling less entitled to hang around.

Even when I feel hopeless, I know that hope is inside trying to stage a coup d'etat. The hope that early intervention will live up to its hype. The hope that Sam will be mainstreamed sooner rather than later. The hope that John will learn joint attention. The hope that my boys will have full happy lives despite their Autism, or even in spite of it.

Sometimes it seems I will never reach my ultimate destination: Acceptance. The journey preoccupies me. The road seems endless, like driving I95 from Florida to Maine without stopping for a bite. So many forks in the road, which ones should we take. RDI or ABA? The scenic route would be nice, but what if it takes longer?

On my journey, each day is a little bit different than the one before it. I'm keenly aware that my sense of normal has changed. True happiness lies in the small things, in the hopeful things, which sometimes are big! Like getting a phone call from our EI team and hearing that funding was approved for John to receive 10 hours per week of in-home ABA therapy.

And this: while singing "Old MacDonald Had a Farm" with Sam, John shouted out "E-I-E-I-O" with a huge smile. He turned away and refused to indulge me with a repeat performance, but it was a delicious peek at the little boy inside. Hope is making me stop, breathe, and appreciate the sights along the way. I think I'll continue traveling down this one-way street for a bit longer.

Twin Language

Here’s a shiny new development: Sam is using the “I” pronoun.

After almost every activity, Sam cheers “YAY!,” claps and says, “I did it!” Does that mean he understands that he’s an “I”? That remains unclear. He counts incessantly: “One, two, tree, fo, ive, sic…” and demands that we repeat every number after him. He knows all his animals and will list them followed by “say” to be filled in by whatever dramatic animal sound we can muster up. (as in “Cow say… Moooo!” "Horse say… Neigh!" "Elephant say …vafoom!!" — his favorite, done in truly scary fashion by hubby, complete with arm-as-trunk and bellowing elephant sound — sending Sam into peals of laughter.)

And then there's this: Sam cheers not only for himself, but also for John, clapping and shouting "He did it!" even as John is quiet.

In the morning, as the household begins to move, I listen to the monitor and can tell who is awake. Sam will sing every song he knows, then recite the alphabet, then count to twenty. I think he’s talking to his stuffed animals, because John doesn’t respond in kind. I wish I knew if the two of them were communicating in some fashion — I would like to believe there really is a twin language and that this is the one that John knows. The more Sam learns the louder his brother’s silence. Should I dwell on this so much? I ask you: what is Blog Land for, if not for dwelling?

And there is a new heavy in my heart today. We were told that John is not really responding to the classroom with its ABA and discrete trials. What does this mean? They say that he doesn’t respond to the idea behind the motivators, that he doesn’t “get” that if he does what they’re teaching, he can earn them. They said "his feelings are hurt" when they remove his motivators. Hello! mine would be too. I’m pretty mad about this since (1) he’s only been in this classroom since mid-September; (2) the class only meets for 1.5 hours just three days per week; and (3) several of those weeks were cut to just two days per week for some silly school thing or another (professional day, holiday, code blue day!). How can John be expected to adapt to this classroom on such an erratic schedule?

As John’s advocates, we must find what it is that will work for him. I’m at a loss, since I put all of my hopes into ABA being the one thing that would reach him. RDI? Floortime? Any other zillion types of methods, treatments, interventions? And how about this: what if we don’t do anything and keep him in this classroom? What if we wait until he turns three and the school system takes over? Is that even an option?

I wish I spoke their twin language.