Autism Recovery and Friendships: You Made It Out of Holland, Now What?

shawty2Autism 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.

muhammadaliIn 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!

~ Shawty

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8 Responses to Autism Recovery and Friendships: You Made It Out of Holland, Now What?

  1. pam depalma says:

    Yes I’d live to chat more about the Games — anytime. In the meantime, you can get info thru our website or email me at [email protected]. Happy Holidays!

  2. jennifer bertram says:

    I have supported my daughter in a dance club in which she goes purely for the social. She is really happy there and the kids are very accepting. Now she is making some nice gains after months of going t hat she is willing to stand in a line and smiles a mile wide. I am happy with whatever she can do. Even though she can do no dance moves she is part of this club and she feels it!

    • Thanks Jennifer, you are so right!! After I wrote this I realized I left out a huge component, our outside organizations! My son is involved in scouting and recently had a playdate with one of his fellow scouts. It went amazingly well and was outside of a “school” environment. Sometimes kids feel pidgeon-holed (I’m the kid who goes to resource or sees the OT or there is history with the class that can be hard to break). Outside activities where you can also be involved and help facilitate can be WONDERFUL ways to navigate these issues. Bravo to your daughter!

  3. Tara Snide says:

    You are so right…about all of it. We are hard at work teaching life skills.
    Going back to the basics is the key and we forget sometimes that those “little” strategies that worked so well, will still do the trick.
    We are and will also continue exploring social stories…they are the concrete visual examples for my 8 year old. The little things are the big things! 🙂

  4. Pam DePalma says:

    When we first met, my son was in 5th grade. I feel like I know you so much more now than when we lived in the same town with all our common interests (unknown when we met, right?)Then, it was all about the girls! Anyway – I have been in your shoes (still am, really). It’s so difficult to navigate the social “norm” waters. It’s also part of why we created the board game and apps that we did. I don’t mean to advertise here….but it has helped so much with my kids and so many others to learn social skills at home with mom or dad, or with therapists or teachers….BEFORE being in the midst of an awkward social situation. Social learning is just so important – for ALL kids these days. We have special circumstances…but we find the nt kids who are behind video games or computer screens all days have a lot of the same issues that our kids have with social awkwardness. It does get better (9th grade now)!! – but it’s always a learning process! I’m happy to tell you more…but mostly want to say “way to go Momma”! Would love to get together next time your are back in the ‘hood!

    • Pam, thank goodness for FB right? If only we knew then…..I am grateful for Girl Scouts bringing us together and that we have stayed connected. Let’s chat about your game, seriously. And I would love to get together again soon.

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