What I’m thankful for… autism edition

I reached into the cabinet to get bowls for the kids’ morning cereal. Yellow Crayola bowl for Finn. Anything pink for Tallulah. And whatever bowls I find for Charlie and Henry. The predictability of Finn’s needs have become second nature. One of the many battles I choose not to fight.

Only this particular morning was different. Finn wanted to get the bowls. He reached in and got everyone’s bowls (which in and of itself was a miracle). He got three, thoughtfully-chosen bowls for his brothers and sister and picked out a Mickey Mouse bowl for himself. I stood there, awestruck. He didn’t pick the yellow bowl. He didn’t need to have the yellow bowl. He chose a completely different bowl on his own.

There was once a time when Finn would be so frustrated at not having the yellow bowl that he would throw himself on the floor in a full meltdown. Writhing around and crying. Screaming, but never saying why. I, at the time, did not know that he NEEDED the yellow bowl. He, at the time, was too frustrated to tell me it was the yellow bowl he NEEDED.

His meltdown was his communication. Only I didn’t know what he was trying to say.

He pushed. I pulled. Was it the cereal? Was it the spoon? Did I pour too much milk? Was there jelly on his chair? Until one day, I figured out that the yellow bowl is what made him happy. And so I hand-washed the yellow bowl every day.

Such is the life in an autism household. Once we figured out what caused the meltdowns, we did our best to avoid them. We were in such a habit of avoiding the triggers, we never bothered to figure out if they still were… triggers.

And that’s what happened with the yellow bowl. Finn grew out of his need for the yellow bowl. And life goes on. One less thing that upsets my boy. Yahoo!

Finn’s victory over the yellow bowl got me thinking, though. People all over Facebook are posting what they are thankful for every day in November.

I wanted to do my own version of what I am thankful for… autism style. And while I’m sure I could come up with 25, I thought I would keep it short and just give you some highlights.

We have made so much progress over the past few years. Progress that was hard fought, in some cases. But, I always find that the best perspective is found in hindsight, so here goes…

1. The yellow bowl- See above. Getting stuck, but not being stuck. Sometimes, if we stay in one place long enough then we can move on. I was fully prepared to have to pack his yellow bowl for college. Turns out, I don’t have to.

2. Finn walking completely flat footed- “Ohhh, he’s a toe walker?” Yea, he’s a toe walker, so what? It was something so innate to who Finn was, it never occurred to me to think it was a problem or a symptom of autism. In the years since his diagnosis, we’ve had every specialist try to correct the toe walking, for fear it would shorten his Achilles tendon and require invasive surgery in the long run. We’ve been through Physical Therapy, MAFOS (leg braces), Botox surgery and finally serial casting. I told Finn’s Orthopedic Surgeon that I would believe it when I saw it, and I am simply amazed! He NEVER walks on his toes anymore! Hallelujah! (I have been meaning to write a post about Finn’s serial casts because I think it would really benefit some people who are looking for the information. When I Googled it, I couldn’t find much on serial casting as it relates to autism. I will write it someday, I promise!)

3. Finn going to the bathroom by himself in the morning without waking anyone! Normally, Finn wakes Charlie at 5:30 a.m. because he is too scared to go to the bathroom alone. Charlie sits on the tub and reads books to Finn while he goes to the bathroom. Every. Single. Day. (I know, brother of the century, right?) But for the past 3 days, Finn has woken up completely on his own and let Charlie sleep! THIS IS HUGE! We have been rewarding Finn immensely for this and I am hoping it continues. We could all use to get a little more sleep around here!

4. Finn being back in his General Ed classroom 100%! I wrote about it the other day (click here if you missed it.) It is something that just will not get old for me. The way he follows the classroom rules and engages with his friends. It is a vision of beauty that only another autism mother could understand.

5. Finn naming “5 best friends” in his class! Um, duh. Do I even need to elaborate on this one?

6. Having nothing to fight for at the school. See #4 and #5. If Finn’s happy, then Momma’s happy. And if Momma’s happy, everybody’s happy!

7. Perseveration- Perseveration is one of those “tell tale signs” of autism. It’s one of the last things I chose to recognize in my boy. When the doctor asked, “Does he fixate on one specific thing like an inanimate object or a specific subject matter? Does he have any special collections?” I felt insulted. No, he doesn’t collect human body parts, if that’s what you’re implying. It made me feel weird, like I was harboring a psychopath. Well, yes, he carried around a small plastic reindeer for about two months and then cried like the dickens when we lost it on the beach. And, yes, he had to read the same “Little Red Caboose” book over and over for a short time, but he eventually moved on. And, oh yea, we watched “The Polar Express” well into the summer, but, who cares? But now, instead of seeing Finn’s “perseverations” as symptoms of his autism, we see them as things that bring him joy. We, as a family, have embraced his “obsessions,” which currently include lighthouses, and enjoy taking family trips to see them. I am also so thankful to the many friends who have joined in on Finn’s interest in lighthouses, including Pam C., Betty P-M, our neighbor Roger, and Kate S who have sent postcards, snapped photos, snagged brochures, bought souvenirs and otherwise made the day of one lighthouse-loving 6 year old! I can’t tell you how much it means to us!

8. Health insurance benefits that cover ABA therapy- Trust me, I know how lucky we are that Joe has a job which falls under the NJ mandate to cover ABA therapy. I know how expensive it is to pay for this type of therapy out of pocket. It is an utter outrage. One that I am thankful to not add to my list of things to be outraged about.

9. Finn brushing his own teeth! Again, this might be one that only other autism mothers can appreciate. But, if you knew what a sensory nightmare brushing teeth once was for us, you would understand how huge it is that Finn brushes his own teeth! From squeezing the toothpaste onto the brush (Yay, fine motor skills!) to actually brushing all his teeth (and quite effectively, actually, he had no cavities at his last checkup!), the entire thing is a miracle! He was never able to tolerate ANYTHING sticky or gooey on his face. Now, he doesn’t even wince! He is still very meticulous about the positioning of his Dixie cups on the counter and swishes and spits a certain amount of times every night before he’s satisfied, but hey, we all have our routines!

10. Finn riding the General Ed bus without an aide! Riding the Gen Ed bus was completely Finn’s idea. I don’t know that I would have pushed for this one on my own… the bus can be a little rough. But, he wanted to be with Charlie, so I fought for it. The school gave him an aide for six weeks and then took it away. I decided to choose my battles. See # 6. It’s going well so far. (Except when Charlie’s absent, I have to drive Finn to school, but who’s counting?)

11. Finn letting the twins play in the playroom- I know this sounds absurd, but for the first two years of Henry and Tallulah’s lives, he wouldn’t even let them step foot in the playroom. He still gets upset when they mess things up, but the other day, the four of us played trains (Finn’s trains) on the floor in the playroom. It had to be on Finn’s terms, but it was a giant leap, trust me.

12. Finn’s teachers and aides- I wrote about his pre-school teacher and aide last week. They taught him to feel safe and love school again. And his kindergarten teachers and now first grade teachers and aides are teaching him to be a good student, person and friend. Forget the IEP, the teachers and aides make all the difference. They just get it. They get Finn and I am so thankful for that! When Finn was the only one who didn’t wear a costume on Halloween, nobody cared. When Finn wanted to stay in the classroom during the Halloween parade and do math worksheets, his aide obliged. (See what I mean? They get him!) Finn is reading on grade level and doing math enrichment. This is light years ahead of where we were this time last year when he wasn’t even in the Gen Ed system to get a report card!

13. Joe being the best Daddy- Joe never skipped a beat when Finn was diagnosed. He never took it as hard as I did. Autism didn’t scare him. Despite how uncertain those times were, Joe never faltered in his belief that everything was going to be ok. He carried the weight for all of us for a while. And he always knows exactly when I am at the end of my rope and jumps in and saves me every time.

14. Our supportive friends and family- I don’t know where we’d be if it weren’t for the love, help and support of our family. My sister Suzanne who is my sounding board for everything. My mom who always sees the best in us and jumps in to babysit or have sleepovers whenever she can. My Dad, who from the start, took a big interest in understanding what made Finn tick and has really changed his expectations of all of us. My other siblings, Kelli, Colleen and Chuck, who have been there for us in every possible way, from being a listening ear or a shoulder to cry on or a drinking buddy or a financial analyst. And our friends, who are more like family, who just get it. Like, Pam, who will jump into a pool at a moment’s notice if Finn screams that something is too close to the filter! And Christine (our babysitter / Mary Poppins / adopted child) who stays with our kids whenever we need her and is one of the best 22 year olds I know! Our kids think of her as a sister (and a constant “nuggling” companion on our couch!)  It truly takes a village.

15. Finn saying “I love you”- Finn has always been verbal, but I realize that others on this autism journey communicate differently. It is not lost on me that I am extremely lucky that in addition to the things that I wish he didn’t say, like “I hate you,” “You’re the worst Mommy ever,” “You’re toots,” and “You’re rude,” he can also utter the sweetest three words a mother can ever hear. On our most challenging days, we end our night curled up in bed and all it takes is “I love you, Mommy” and I am ready to do it all again tomorrow.

16. Perspective- It’s a gift only time can give. I wish I could have told the scared Mommy who heard the word autism two years ago how much progress her boy would make in two short years. That fear and sadness have their place as long as they are a catalyst for change. That progress is possible. And it’s astounding and beautiful. But I guess I had to live through it all.

Just to see it for myself.

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2 thoughts on “What I’m thankful for… autism edition

  1. What a great testament to the spirit of Thanksgiving. Honored like the dickens for my cameo role in your wonderful family. I would jump in a pool any time for any of you. ❤

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