The Short Bus Diaries » Confessions About Life With an Autistic Son

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Is Everything OK at Home?

So Max is on spring break this week and Mommy and Daddy were faced with the usual conundrum faced by working parents: to get nothing work-related accomplished all week (except at night and during theoretical naptime) or pay someone to keep him safe, fed, and pretty happy?

We opted for the latter, especially because we need to continue earning the income necessary to pay for also this dern therapy, liquid vitamins and what-not.

Another reason – one that I am less proud of – is that I just don’t know what to do with Max all week!  Seriously.  The kid doesn’t play with toys.  He doesn’t talk all that much – except to ask for food items or announce that he has to go potty.  He’s 100% available for hugging and squeezing and tickling.  But he doesn’t want to participate in a whole lot of other typical mom-son-day-off-go-to-the-zoo activities.  I spend two full days with my children every weekend, fairly successfully filling those days with playdates, trips to the bakery and park, errand runs, etc.  But seven weekdays of trying to figure out how to entertain my high functioning but seemingly always bored son?!!

So we put Max back in his old day-care, where he was once King of the Hill, like his sister is these days.  It’s a home day-care, where my children are treated like members of their family and where I can easily walk in to find the owner and her husband lying own on the floor giggling with my children.  The only downside is that the owner doesn’t speak much English.  I’ve done my best to paint a very basic picture of my Max’s autism and dietary needs for her.  And her response is usually to tell me that he’ll be fine, that he’ll be talking up a storm (I’m filling in her English blanks here) by the time he’s five, and yada, Spanglish yada, yada.

But tonight, after his second day back in his old “school”, I think she finally got it.  She explained to me that Max didn’t want to do anything.  “No paint.  No ABCs.  Nothing”.  “Delilah is different. Delilah wants to paint.”  I opted not to go into his need for gross motor sensory input in order to gain enough of his attention to practice fine motor activities – how does one express this to a native English speaker who’s not fluent in ASD lingo, much less a Guatemalan woman without a high school degree?  I sputtered a truly non-eloquent “that’s because he’s AUTISTIC. NOT NORMAL.  His sister is NORMAL.”  Thanks for finally tuning into the channel that we watch every day!  (Yes, I know what my card-carrying ASD parent vocabulary should contain.  But try saying “neurotypical” with hand gestures and Spanglish. )

Meanwhile, Max was refusing to leave their apartment, and stuck to his preferred position of lying on the floor, under a blanket, clutching a bungee cord.  I had no patience for this game (which happens oh-so-often) and took my daughter to “leave”.  Don’t worry, this was understood by all parties to be that notorious parent game of “see you later”, disappearing long enough to get your child to follow you.  But Max didn’t follow, and needed to be carried out by the owner’s husband, and was launched into his carseat in a spacey, tuned out, non-verbal heap.  I was clearly frustrated by this version of Max – “He can do better than this.  Why does he perform so badly in front of others?!”

And that’s when the man said it; the dreaded words that one never wants to hear from a third-party observer: “Is everything okay at home?”

I felt like screaming to the man “No!  Everything is NOT OK at home at the moment. I can’t cure my son! I come home every night with a child who cannot tell me if he is hungry or not!  I want to be like every other parent on Capitol Hill, whose seemingly normal children do not need to wear pressure vests and be forced to make eye contact with Mommy before she will release the coveted lollipop from her mean clutches!

“Do I look like a bad mom?  Is he judging me or Max?  Is he asking me because they had this vision of younger, more Interactive and Playful Max and they have now had two full days of Older, Dazed, Sensory-Seeking, Autistic Max?  Did I ask Max a bit too forcefully to say “thank-you” and “bye-bye”?  Are they going to call…..The Authorities?”

Panic soon gave way to anger, as I pulled out of the parking lot.  “If they had ANY idea what we do for our son, the money and time we pour into speech and occupations therapy, the new child psychiatrist, the DAN! doctor, the enzymes, gluten-free food, liquid vitamins, books, webinars, sensory-rich toys…I love my son!”  How dare they accuse me of creating a poor home life for Max?  They should check out our living room, overflowing with a trampoline, swing, exercise ball, crash pad, and the various piles of treasured objects my son creates each morning. And on, and on, and on.

I’m still slightly worried that a social worker may come knocking on our door one of these days.  But mostly I know that I am doing my best to bring my son out of The Depths.  But perhaps I should carry some sort of bilingual explanation of this for Everyone Else.

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