Autism recovery means many things to many people. Our journey has had many twists and turns, improvements, and regressions. I look back at my previously nonverbal child who preferred to sit and spin Tupperware lids, would not respond to his name, could not sleep, and who tantrummed a large part of the day and night and think “We’ve kicked a$$.” I mean seriously, we have. And yet . . . Sometimes it feels like we are in no man’s land. I am sure you’ve read the poem about autism being like landing in Holland instead of your previously planned vacation destination. So you made it out of Holland, but now what?
Your child may not fit in an autism specific-school and yet may not fully fit in a mainstream school either. What is fitting in really? But when you are a 5th grader, that concept is a long way off. What it means is you feel like you have no friends. School days end in tears and frustrations. Maybe now you can hold your shit together enough, but at some point you still have the occasional meltdown. Only now you are “big enough” not to do that, or so onlookers think. Maybe you have “weird” ways of de-stressing in our sensory crazy world and you get teased. Maybe you really (I mean really, really) love a specific subject but your friends don’t, or they don’t love it quite as much as you do. Or maybe you think you have friends, and you follow them around and can’t quite get the cues that they really would rather not have you around.
In the early days we had therapists walking us through various therapies step by step or addressing specific symptoms with different diets and/or supplements. Progression, albeit wonderful, can be uncharted territory.This is the in-between phase, and it sucks. It sucks for your child, and it sucks for you. Sometimes you think we made it through the toughest stuff and then other days you think maybe not so much. I am always grateful for where we are, always, but recovery does not mean smooth sailing, everything is peachy keen. We are seeing so many children in various stages of recovery (hell, yeah!!), and yet many are facing these same challenges. Some of them are challenges ANY child faces, but may be harder for your child to understand and/or cope. Where do we go from here?
I have some ideas; necessity breeds invention, right? So what do we do when many therapies have stopped, or they have aged out, or they just aren’t addressing the real issues anymore?
· Sometimes you need to go back to the basics! On a particularly stressful day this week I reverted back to our old standby of joint compression. It has been years since my son has received OT in anything other than a school setting, but this was a favorite back then and at home in times of meltdowns and an overwhelmed nervous system. I got about halfway through when he sighed and said, “I feel so much more relaxed.” Cha ching! It is an oldie but a goody, don’t forget the stuff that worked, pull out your bag of tricks and try them again. I also added in essential oils and a little Rescue Remedy.
· Social stories! This is one I am going to be exploring more. There are resources on the internet, and you can make your own to fit the situations. My son needs much more explanation than my daughter on interactions, relationships, give and take. My son sees things very concretely and thinks once a person is his friend, they will always be his friend, regardless of his own behavior (NOT!), and that if they get a new friend that means they don’t like him anymore. This requires constant discussion.
· Coaching. Ever find yourself scripting the interaction? Yeah, most parents of 11-year-old boys don’t have to literally talk them through an interaction with their sibling. I do. But, if he doesn’t learn it at home (the proper way), how can he take that knowledge into the world with him? Screw the people who call you a helicopter mom; we have way more things to deal with than to be concerned with those not walking in our shoes. These kids are getting older; it is our job to get them ready for the world, and the biggest issue there is interpersonal relationships. We all know that classmate, coworker, etc. who is uber smart yet has zero interpersonal skills. Our connections with others are what get us through on this planet.
· Ask for help! School counselors, outside counselors, books, online resources, etc. can be wonderful tools to help give you some ideas. We are setting the stage here, and so many other kiddos are on our kids’ heels. This is a big issue and is only getting bigger. And please, share what is working for your child so others may benefit.
· Lots of hugs and kisses! Or whatever reinforcement works for your child. Even though they may not ask for it, they need the extra reinforcement that they are okay! This is a tumultuous enough time without the added challenges. I share my own stories of on-again off-again friendships, fights, etc. They need to know that everyone goes through this stage, and it is not always easy but that their family is there to support them.
That’s all I’ve got so far. I am in the thick of it. Are you too? What is working with your child? Please share it up. So many of us right now are facing similar things. Relationships in middle school and high school are not easy anyways, but when you throwing autism into the mix complicates things even more. And while we have gotten our children far in their recovery, sometimes the gap with their peers still seems very wide. Let’s help get them bridge that gap together!
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