Imagining

Max has finally begun imagining. For those of you with neuro-typical kids you get used to the animal or car sounds, the silly times they wear socks for gloves or parade around in mommy’s high heels. How they pretend to eat things they know aren’t real food or substitute plain square blocks for houses or trees. Most of the time you probably don’t even realize they are doing it, playing quietly with their stuffed toys or dolls while you read the paper or get caught up with a friend over the phone. You probably tell them to stop pretending at the dinner table or to put away that bed sheet because it is NOT a cape and just came out of the wash. So many of these little things go unnoticed or dismissed because they are normal.

But when it’s not there, when you try so hard only to have your child throw that stuffed doll back in your face or listen until you can hear the crickets outside waiting for the blessed sound of a rumbling truck to hum from your child’s lips, that’s when you start to worry.

At Max’s evaluation the doctor tried over and over for him accept, if not participate, in pretending a baby doll had a birthday party. She made a quite realistic cake out of playdough topped with a candle and sang to the baby, trying over and over again to get him to do that little simple thing we all take for granted every day,pretend.

But he wouldn’t or couldn’t and cried and screamed when he was presented with it. And I cried that this seemingly simple, normal thing was missing from my son. That was only in mid-November.

Six months later, Max has started to pretend. He started feeding his stuffed penguin, Ping, half a wooden peanut butter sandwich and even making eating noises. I jumped on the new skill and picked him up a play kitchen on clearance over the weekend along with a couple sets of wooden play food. Max loves it. He keeps coming back to it over and over.

 

It’s quite a miraculous thing, this pretending business. He’s opening up, growing, and I am so proud to see him making these steps that are gigantic for him. Having a child with Autism gives you the gift to appreciate these small advances that so many take for granted.

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Not enough credit.

This is a series of posts that I will be writing regarding our 6 day stay at Disney World in Florida. This is the first time we have gone on vacation in two years and it was emotional, inspiring and educational to say the very least. I hope you enjoy them.

Not Enough Credit.

I freely admit to planning for the very worst. I am ashamed to be honest. Guilt nags me even now, even after so very few of the disasters I predicted barely came to pass. I was worried. I fretted. I down and out internally freaked out for weeks before and every minute of every day we were gone. What was I thinking? He would never survive. It would all be too much, too overloud, overbright. I knew my own irritation with pushing through heavy crowds and magnified that a million thousand hundred fold imagining how Max would feel; Crowded, suffocated, trapped.

A week at Disney World with four neuro-typicals and a kid on the spectrum. What the hell was I thinking?

When I booked the trip way back in August I didn’t know I had an Autistic child. It had been nearly two years since we had had a vacation. We decided to cut down on holiday shopping, pay for it in advance and give our kids a great memory before we left Florida. It was a good plan and one I hadn’t wanted to break after the diagnosis came through. We all needed it and the kids had already been looking forward to it for months.

I kept the plans but started making new ones. I would reserve the right to head back to the hotel any time Max became overwhelmed. I’d sacrifice my vacation to give Max what he needed. We bought a new stroller, one where he could be higher up with a large canopy to block out as much as possible. I bought a carrier and practiced wearing him on my back, giving him another secure place to be if things got too much. I packed his own bowl and spoon. Food he was familiar with, his own toys and movies.

I had everything prepared for Meltdowns, Tantrums and Overwhelm. All the difficulties that I have experienced I projected them all happening every second of every minute of every day of our trip. I had very little hope things would go smoothly. And Max threw me for another loop.

Max, bacon and Pooh.

There are a hundred moments of every day where this little boy astounds me and I am ashamed to admit that it is because I don’t give him enough credit. He is so smart. You can see it in his milk chocolate eyes, the perception, the intelligence. He wants to be good, compliant, reasonable. And sometimes life just is overwhelming. This wasn’t one of those times.

Max on a "leash". The absolute best invention.

We transitioned on and off rides with a great deal of patience and ease, more even than the complaining, irritated adults that surrounded us. Waiting in line was a bit difficult as it was hard for him to understand that yes, the boat was right there but no, we couldn’t get on it. He agreed to wear the backpack harness and or ride in the back carrier, he used a true point to tell me which he wanted. He talked more while we were there, he said bus and pooh very clearly. He said “hoon” (balloon) over and over and at the appropriate times. We had a hard time understanding why we couldn’t just take whatever we saw that we wanted and did cry and scream at times.

But that is normal for any other three year old. THAT IS NORMAL!

Sometimes it’s hard for me to untangle the behaviors that are “Autism” and those that are “Three years old”. We were at theme parks for four days and he acted Normal.* Max is capable of so much. He is so smart and funny even if he doesn’t say a word about it. I need to remember that. I need to remember that even though he is different there is so much more to him than Autism.

Lovies

There seems to be a fine line, invisible and intangible, that forms the barrier between “regular” children and Autistic ones. One that you can feel through your whole body the closer you get to that line. And when you stand, straddling it, dividing attention between the sides, your whole body thrums with the nervous energy of it.

Though the children on both sides look the same, they’re different. As I go through each day with one foot in both spaces, I am overwhelmed.

It’s that line that dictates what is okay and what is not. On the “regular” side we look at a child that is obsessed with dolls, homemaking, dress-up and think they’re just “girly” there is nothing wrong with their specified interests. Oh, they’ll go play cars with their brother or Legos and it doesn’t really matter that they make the cars into mommies and babies or the Legos into a dollhouse, they’re still playing, expanding.

Then you look across the line at the children obsessed with letters, things with wheels or motors, blocks. And the obsession that looks so much the same is very, very different. A block can only stack it can never be a car. A car is a car it will never be a mommy. If a sister needs someone to make baby noises for their doll or throw the fake baby a birthday party, well, that’s not in the allowable group of toys. Dolls are shunned, physically removed from the play area, they are not invited to the playdate.

This is one of the first things we noticed with Max. His inability or refusal for expanding his play. He takes the girl’s plastic dolls out of the bath when it’s his turn, they’re not allowed even on the rim of the tub. Tubs are for pouring only.

We try to get him interested in soft toys, “oh! Hug the baby Max! This is your puppy. Puppies say ‘Woof!'” And Max looks at me with skepticism in his big brown eyes, the ones that say “You are insane, aren’t you.” but he takes the baby from my outstretched hand. My heart soars for just a moment Will he hug it? Maybe he’ll hug it this time!? only to crash to the ground a moment later when he throws it out the bedroom, slams the door shut behind it and claps.

And still I push for that diversity in play no matter how many times I fall to the hard ground, battered and bruised I pick myself and the puppy back up and try again. Because that difference means there’s more to this than just a dislike, there’s an inability. It is what we will start working on with his additional therapies start. It is something that marks him for a place across the line.

And then there was this morning. This morning I didn’t crash. This morning Max took the stuffed toy cat from his sister and hugged it. He made a kiss noise and crushed it to him. We grabbed his stuffed elephant, the one my mom made him for Halloween in lieu of candy and he hugged that one, too. He imitated his sister gently patting the animal’s back. He swapped toys with her and hugged some more before returning to “his”.

I soared. Bedhead and only a few sips of coffee, still in my pj’s I soared above that line. For a few minutes everything was right with the world. And when he was done with the doll he didn’t throw it and I didn’t crash to the ground.

This time I floated down.