As many of you know, we have been having a really difficult time with our severely autistic fifteen-year-old for about a year now. We have been to a myriad of doctors and received a multitude of diagnoses, and finally believe we have found the right one, and a treatment plan that is at least working a little bit. At this point any progress is good progress, and my boy seems to be relieved a bit from the tics/stereotopies he’s been diagnosed with recently. This has brought him relief, and his family as well. He is eating better, sleeping better, able to transition better, and much easier to take out into society, which has been a focus for this family since before he was diagnosed.
I’ve finally had some time to reflect on the past year, what I’ve learned, what I wish I’d done differently, and I’d like to pass on any wisdom I can to other families going through difficult times, especially when adolescence comes to call. On that note I was so enmeshed in watching my son struggle the last twelve months that I forgot something, something integral to all of us trying to remain hopeful in the face of seemingly unsurmountable struggle.
And it’s this- I’ve been doing the autism mommy gig for fifteen years, and literally everything has come and gone in cycles.
Over the past decade-and-a-half we’ve dealt with sleep issues, eating issues, behavioral issues, leaving the house issues, riding in a car issues, and probably many more conflicts I’ve blocked out over the years. At least for me, when I was right in the middle of each situation my greatest fear was it would never be resolved- he would never eat enough or anything that wasn’t fried, we’d never be able to take him out of the house and not have it be a disaster.
Many nights I worried I’d never get a full night’s sleep again.
I have my priorities.
But the truth is, over time, with many different strategies, patience and often multiple opinions we were able to conquer these challenges one by one. Sometime things would not go away completely, but in every single case the situation was greatly improved. In my experience, and that of my friends, things tend to come and go in cycles.
And for sanity’s sake it’s imperative to remember that while you’re going through a difficult time.
I will tell you honestly that as we’ve conquered each challenge, eventually something else would rise up to take its place. I remember last summer feeling so positively about Justin and his life, keeping my fingers crossed that even though he’d entered puberty perhaps he would be spared the problems so many of my friends’ kids have gone through as they entered that phase of their lives.
Of course, in Justin’s case, this was not to be.
I will say this. When I finally reminded myself that every single time we’ve done battle the situation has at least improved, I began to relax more. I was able to clear my mind to focus on how best to attack the problem at hand, and I am confident this helped Justin.
I know it helped me.
Justin is not cured. I don’t know how he’ll be next month, tomorrow, or when he gets home from school today. There could be something challenging and new around the corner that I haven’t even thought of. None of us, whether our kids are autistic or not, know what comes next.
But if you’re struggling now, remember this. It could improve. Hell, whatever it is, it could stop. It’s good to focus on the problem but stress may just cloud your ability to help your child, so try as much as possible to remember that often in autism things come and go, that with the peaks of problems often come the valleys of relief.
Hang in there. Be good to yourself.
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