I pull up to a red light with my car rocking back and forth from the force of my eldest son’s slamming himself into his car seat in time to my eighties jam, and I notice the driver next to me staring toward the back of my car with a smile on his face. I am smiling too, because I know my severely autistic son is thrilled to be going to the pumpkin patch, an event we’ve been taking him to his whole life. My youngest decided he was “too old” for this now, but I know my eldest loves traditions, and I am happy I’m able to keep this one for him.
I’m happy we have traditions. Hell, I’m happy we can go out.
Back in the day when we lived in Virginia just the mere act of putting my son in his car seat was incredibly stressful, for both of us. The period of time when he rode backwards was the worst- some of his angst was alleviated when he could face forwards. There were still a myriad of issues to face when he was a baby and toddler, namely that he hated crowds, lights, and noise. There were often times however when we’d get to our destination and he’d be thrilled to be out of his house, and in those early days I clung to that joy, made it a goal to desensitize him to the world so he could enjoy all of it.
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I was determined we would not remain hostages in our own home.
Slowly, over the years, things got better, but it was a tough road at first. I tried to work up to outings with him, which took time and patience but were well worth the effort. To get him accustomed to the mall I first just drove to the parking lot; on subsequent trips we’d take a short walk in the stroller, eventually made it through an elevator ride (particularly challenging), then finally we were able to spend some time motoring through the stores like we were old pros. He grew excited to go there, and frankly I needed those outings out of our house in winter just as much as he did.
I used this same desensitizing approach when we moved to New Jersey and started going to Great Adventure, the boardwalks, and the beach. I won’t say these trips were without mishap. I remember one time the stroller broke and I had to convince my autistic toddler to let me carry him while trying to drag the dead carcass of his chariot back to our car, and that change in routine was not to his liking. There were meltdowns in line for the rides at various venues, and my body to this day bears some of the tiny scars from his bitemarks of frustration.
But I will tell you this now, without hesitation, it was all worth it, because we have a life with our son.
Trust me, I haven’t done all of this on my own. Justin’s school has a program where a BCBA will come out to your home for an eight week session and help you in-house or in the community, and I have used that option many times, particularly when my boy seemed about to give up the beach and the boardwalk, two attractions I was loathe to relinquish because it’s good for him to get out. Just having an extra set of hands on an outing has been a huge help, and I’ve availed myself of that option whenever possible.
There are times however when we have to brave it together just the two of us, and sometimes to not-so-fun destinations like appointments. For the last few years I can say that almost all of our outings have been successful, and that is because of the help we had, but even more it’s because we stuck our trips even when it was difficult.
I can’t stress this enough. Put in the work when your child is young no matter how grueling, and hopefully it will pay off down the road.
Now Justin is even able to handle the two hour plane ride to Disney (which we will be undertaking again soon, so excited!), and last year greeted our newest destination, Universal Studios, with enthusiasm. I know, however, he never would have been able to deal with all the change if I hadn’t gotten him out of his comfort zone when he was little.
I am so grateful for that little voice in my head that told me not to give up, because it completely paid off.
And I deeply wish the same outcome for all of you who are struggling now.
For more on my family visit my blog at autismmommytherapist.wordpress.com
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