Thursday, February 4, 2016

lessons learned

Time is a school in which we learn. This has never been more true than when my oldest son Greyson started Early Intervention preschool. Everything about the way the world operated was foreign to him, and everything about how to best teach him and navigate this new world was foreign to me. My ego in mothering crumbled and I eased into the pain. I had no choice but to mother into the pain- so I did.

I think when a baby leaves your body something else immediately replaces that void. Massive strength that can hurt and ache and trick you into thinking you have no strength at all, but it's in there. Einstein said “Energy cannot be created or destroyed, it can only be changed from one form to another.” I think all that baby just turns into love. A love so big, it can even tower over fear. And that's saying so much, because fear can grow really big.

It's been almost five years since that fear first made its appearance. Why isn't he talking? Why doesn't he hear me call his name? Why doesn't he reach for me from his crib?  And then an awful moment turned fear into reality when Greyson was diagnosed with autism.  And then for twelve solid months I mothered into the fear for my youngest son, Parker. He was four months old at the time- I knew I would know for certain by the time he was 16 months old. I negotiated with that fear, refusing to let it rob me from the joy of his babyhood. LEAVE ME ALONE, I told it in the ragged portions of reflection. LET ME BE. We will meet again next August. Until then you have no place here.

And something happened to me after I grieved that second autism diagnosis. I fully embraced my bitter, beautiful story. If this was the story I was to be given, I was going to KICK ASS at it. I decided to learn everything I could about helping my boys navigate this world, and to really do that, I had to first step into theirs. It's taken YEARS, and countless mistakes. It's taken trial and error and error and error. And their perseverance while navigating their unknown- taught me how to navigate mine.

Sometimes I wish my boys learned big and sweeping and all at once. I wanted them to talk and count and advance in leaps. I quickly realized that they learn in millions of tiny little baby inches- not even steps. It's slow and inconsistent and frustrating and amazing to watch unfold. But this is their path, unfolding in this particular way, and I respect the path, the journey. I also realized the greatest tool I have is love and the ability to teach them. It felt like an awakening.  Like a door to sanity was opened and I finally decided to walk through. Like I could do something.


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Learning how to categorize is critical to processing and language development. These AMAZING free printables can be found HERE. This entire blog is great, developed by a Special Ed Teacher with obvious passion and heart. She has SO many great aids you can create at home here. Looking through it is making me want to print and laminate RIGHT NOW!

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Parker LOVES playing with them. Notice I said play, not work? As in I had to take them away from him so he could go to bed tonight. When work is disguised as play EVERYBODY wins. When creating home teaching tools for your children you are limited only by your imagination. Resources are everywhere.

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I purchased a few packs of play money at the dollar store. I taped each bill on a piece of paper and then laminated the sheet. Your child can sort by the dollar amount. This is double goody gumdrops because they are working on categorizing- and learning about money- a great functional life skill.

The number one recommendation for all Special Needs parents is a laminator. You can get your own quite inexpensively. I completely dork out when I have new things to laminate and cut.

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There are also numerous resources for daily and weekly schedules. Choiceworks has an app that allows you to customize any type of schedule you may need. Here we have created a morning and bedtime routine, as well as a more detailed Monday through Friday schedule. It's available for $6.99 in the App Store.  Schedules are great for increasing Independence and reducing anxiety for many individuals with autism. The time it takes to create schedules is paid back in the form of better behavior and less stress management.

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I also created a Weekly Schedule for my oldest, Greyson. He was having a lot of anxiety because he didn't know what days he went to school and what days he got to stay home. He didn't know when Dad was going to be out of town for work and he would ask for him constantly.

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This schedule is slowly teaching him what he can expect from his days, while simultaneously teaching him the days of the week.

Speech is something that must be worked on every day in every setting. We supplement what is done at school because I have found that it isn't nearly enough. We do an additional one hour per week with Teacher Amy. She teaches the boys things in expert ways only privy to Speech Language Pathologists.

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Greyson struggles with spoken language and auditory processing. His ears work, his mouth works and his brain works, but they don't always work together. He frequently doesn't understand what you are asking him and it often appears that he's somewhere deep inside his mind- as if he doesn't hear you. Visuals are a great way to help him figure out what is being asked. Once he gets the hang of it, the visuals will be faded out.

A great way to keep kids motivated is by using token economy. This is a system of behavior modification based on the systematic reinforcement of target behavior. The reinforcers are symbols or "tokens" that can be exchanged for other reinforcers.

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For each task completion or desired behavior, Greyson gets a piece of the ipad picture. When the puzzle is completed, the reward is earned. It's also good for him to have a picture reminder of what it is he is working for. This aid was created by our incredible Behavior Therapists. Both Greyson and Parker have 3-6 hours of Behavior therapy daily, and it has been life changing. 

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The day I stopped looking at therapy as a burden and saw it as an opportunity, my life changed. My kids are professional learners, and they will be all their lives. Nothing is more important to me than making sure that learning is filled with joy and fun. The great news is, this stuff works for all children of every shape and size, whether they have Super Powers or not. 

And nothing, I mean NOTHING can replace the joy you feel when it all comes together. 



It makes all the hard work worth it. It reminds me how amazing it is to watch them unfold.

7 comments:

  1. love watching him read his name!!! what a joy!

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  2. This is fabulous as always! Hope you and your gang have a wonderful weekend!

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  3. Hi friend! I love this post for a million & 12 different reasons. I think one of the HARDEST things about being a parent, for me, was to let go of my expectations for Jace & to get on board with finding his path. It continues to be a struggle even after almost 7 (gasp) years!
    I LOVE the planner aids! My entire family would benefit from the weekly planner. I just need to make myself accountable for updating it - I think I can I think I can ;)
    You inspire me. I'm off to order the peel & stick calendar you had on Facebook earlier in the week.
    Love & Happiness to you, sweet Momma xoxoxo Miracle

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  4. INCREDIBLE POST. Thank you so much for sharing!

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  5. Chrissy, you are my hero for sharing the Adventures in Tutoring blog! We are just getting started putting together home teaching aids to supplement my 4 year old's preschool and therapy and that blog has some amazing stuff. Not only that, but she's local to me! Thank you!!

    You are seriously one of the most dedicated mom-advocates I've ever encountered. I need to find that in myself. The last year has been sort of surreal as we've struggled to find a path through Daniel's challenges. I wish that I had half of your drive and energy!

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  6. Wow...I wish I had a creativity skills to make cool stuff like that schedule chart and whatnot!

    And I also wish my insurance covered ABA therapy so then my son could receive it. *sigh*

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