Mr. Potato Head

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Mr. Potato Head is the toy I hate the most.

Never mind his ugly bulbous face and his stupid smirk. I have much deeper reason for my detestation of Mr. Potato Head.

Mr. Potato Head told me my son was autistic.

The way Toby played with Mr. Potato Head was non-functional. From a very young age, he would stim with the individual pieces. He’d wave them around while humming in monotone, and not put them into the face at all, let alone the right slots. Before his diagnosis, I didn’t know what he was doing. I thought he had some really interesting scenarios going on inside his head. I didn’t know he was getting lost in his own mind.

When we began to be concerned about Toby’s development, one of the doctors we saw asked me, “How does he play with toys?”

I thought of Mr. Potato Head.

The doctor frowned when I told her, and mentioned the word “autism” in relation to my son for the first time. When we finally got in to see a specialist, Mr. Potato Head came up again. Another tally against Toby. The final thing that put us over the cliff where we landed in a big fat pile of autism information packets.

Still, I tried not to hold it against Mr. Potato Head. After all, it wasn’t personal. We kept him. For over a year after Toby’s diagnosis I kept him, trying and hoping that he would learn to play with him appropriately. I wanted victory over his vegetable face. But one day, I snapped.

I gathered up all of those staring eyes, seriously rude stuck-out tongues, oval noses and black bowler hats. And I put them in a plastic bag and sent them to Goodwill.

Why should I keep such a painful reminder in my home when it only breaks my heart all over again, every time I see Toby playing with him the same way he always has? The habit to stim with those toys was a very, very powerful habit. Even though I was trying to help him overcome that pattern, I decided it just wasn’t worth it. There are plenty of small-scale toys in this world that I can use to teach Toby to play with, instead of stim with. I just couldn’t look at those dumb potato parts that told the world my son was different anymore. And you know what?

Nobody misses him. Not at all.

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UPDATE: Toby’s daily notes from school

potatohate

Literally, in your face Mr. Potato Head.

I still hate you.

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The Beginning: Part 2

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Part 1 is here.

We had parent teacher conferences and things came up- “He can’t use a pincer grasp,” and “He’s always picking up tiny things off the floor,” and “He really likes to make this noise…”

One day, one of Toby’s teachers was sick, so a teacher from another class filled in. This teacher also “happened” to be a former speech therapist. (I say “happened” because I truly believe this was divinely orchestrated.)

She came up to me when I went to pick Toby up from school. She gently told me that she thought there might be more wrong than just a speech delay—she had a feeling something else was wrong, and whatever that was, caused the speech delay.

My heart sank. Suddenly all of those quirks Toby had seemed like symptoms of….something. Autism was never on my radar. I began to prepare myself for a diagnosis of a garden variety developmental delay, and made another appointment with a different pediatrician.

I sat there in the examination room with my husband and Toby. Elinor was with a relative. I watched the doctor give Toby various little tests to do and felt sicker and sicker as I saw him fail most of them. Finally, she came to the conclusion that he needed to see a specialist. She wasn’t comfortable diagnosing him herself.

I begged her for reassurance that he would be OK with just a little extra help to get him back on track (a thought I had used to comfort myself in my turmoil). She stopped, not sure what to say, and couldn’t meet my eye.

Then I knew she couldn’t give me that peace.

The weeks between that appointment and the appointment with the specialist were hellish. I alternated between denial of the doctor’s assessment and despair that he was intellectually disabled and would end up in a nursing home.

Thankfully, our doctor was kind enough to put a rush on our appointment. We were seen just a few weeks from our referral, which is unheard of with the practice we were going to.

My sister had agreed to watch Elinor in the waiting room while my husband and I took Toby to his appointment. Sitting down next to her, I whispered that that our pediatrician had briefly mentioned autism at our last appointment, thinking it was so far-fetched but at the same time shaking at the possibility. She wasn’t sure what to say. I wasn’t sure what I wanted her to say.

We were finally taken back to a room where we were grilled by a doctor about Toby. They asked us question after question and we tried to answer them as best we could. At one point the doctor asked me, “What makes you think he is intelligent?” A question I had never even asked myself.

“I don’t know,”  I said, “I just know he is.”

By the end of the visit, Toby had a diagnosis of mild-moderate autism. I was in complete and utter shock. We were given the famous (infamous?) 100 days packet and sent home with more appointments to follow up with later. I couldn’t bring myself to read more than a page or two.

At first, I was OK. I was sad but relieved. Finally we had a reason and a purpose. A goal.

I wore red lipstick for the first time and told myself I’d better get used to not caring what people thought about me or my son.

Eventually, I read the 100 days packet. All of it.

I finally broke down. I realized that our life would never be the same. All the information in the world couldn’t change the fact that Toby was different–and would be for the rest of his life. All the therapy in the world wouldn’t change the way his mind worked.

I was a wreck for a long time. I took on so much guilt and blame for not seeing it sooner. Toby was barely four years old when he was diagnosed. When I learned that the crucial window for autism intervention was before the age of four, I couldn’t let it go.

I obsessively went over our old pictures and videos, scouring it for what I now knew to be signs of autism. Hand flapping when he was a toddler. Dancing on tiptoes whenever he was excited. Playing with only the eyes or nose of Mr. Potato head while humming nonstop, and never putting the pieces all together.

And not a single video of him babbling.

I began to feel hungry for more information. I started reading everything I could find. I started analyzing everything Toby did. Not just him, either. I also studied every child I ever saw at the park, church or school.

Looking back, I see now that I was just hoping that I wasn’t the only mom to ever think their child was perfectly fine only to be shocked with an autism diagnosis.

I began to feel anxious all the time. I couldn’t rest. I couldn’t decide what I was supposed to do with all the facts swimming around my head, making my life a whirlpool of confusion.

Completely and utterly overwhelmed, I lost my ability to function in my life. One day, my husband came into the room when I was once again fact searching. I sputtered something about not being sure if Toby was orally hyposensitive or hypersensitive. He gently took the book out of my hand. Though I never would have put it down myself, once it was taken from me–I was glad it was gone.

I realized I desperately needed a break.

I decided to just take a step back, and eventually, to start over. This time, I went slowly. I went more by what other people could teach me from experience and less by pages and pages of facts, statistics and medical jargon.

When I started to learn this way, I retained a lot more information. Because I was learning piece by piece instead of all at once, I was able to emotionally as well as intellectually process the things I was learning.

The most important thing I learned about autism during this time was that EVERY child with autism is different. Not every single thing I read or hear about autism will apply to my child. The variations of people on the autism spectrum are endless.

This is my story.

Will you share yours?

The Beginning: Part 1

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The Beginning

This is how we entered with world of Autism.

My firstborn, my son Toby, was born in 2008. He was a happy, smiley little baby with big dark eyes and curl in the middle of his forehead, Superman style.  My adjustment to motherhood was tough. I was young, and had a solid hit from post-partum depression. My husband was a full-time student and worked as well. Even though he made valiant efforts,  he was unable to help me as much as I needed. Toby was not a good sleeper, and I was beyond exhausted the majority of his first year.

Since he was my first child, I had nothing to compare him to. The early signs of autism were there, but I didn’t see them. I also had a fierce desire not to be one of “those” moms. I promised myself I would not be the kind of mom that  pushes their child to be the first to check off that developmental checklist. I was determined to let him go at his own pace.

I didn’t realize exactly how slow his pace was.

One day, a childhood friend of mine posted a video on her personal blog. It was of her son, the same age as Toby, bouncing in his saucer, babbling up a storm.

“Ba-ba-ba-ba-ba-ba-ba-ba.”

Out of nowhere, an absolute fury overcame me and I was seeing red. I thought, “I can’t believe how pathetic some people are, that they think they need to brag about their child all the time.” My face heated up with anger. “Every child goes at their own pace. This doesn’t mean her kid is any better or smarter than other kids!”

While I was somewhat shocked at how emotional I became over something that was so trivial, I pushed my overreaction to the back of my mind. Toby will babble when he is ready.

Ready.

That was what I constantly told myself, whenever the developmental checklist came up short.

“When he’s ready…”

Once Toby started sleeping better, my depression subsided and we felt confident enough to have another child.  Elinor was born in 2010. Finally, when Toby was two and a half, and still wasn’t talking other than a few words here and there, I decided to take him to the pediatrician.

She told me he was likely just speech delayed (very common in boys), and might (although she doubted it) qualify for speech therapy through our area’s early intervention program.

I took him to be assessed. He failed with flying colors. He was not just speech delayed (a full year behind schedule), he was also testing behind developmentally.

But even then I put on the brakes and reassured myself with thoughts like, “Well, he just doesn’t know how to pull his pants up because I haven’t taught him how…” and “Some of these goals sound a little lofty…”

So we got the speech therapy. And for almost two years I felt sure that he was fine, that he just needed a little extra help. He aged out of the early intervention program, and when it came time to write his IEP [Individual Education Plan, a set of goals done by the school system] I was all too eager to agree with the school system that all he needed was thirty minutes of speech therapy a week.

I was wrong.

I didn’t know.

I had so little faith in myself, I assumed that any of his problems were due to my various failures as a mother. I thought I had done something wrong, that the reason he couldn’t transition from activities was because I wasn’t stern enough with him. The reason he wouldn’t hold still for diaper changes was because he was naughty or wild or stubborn.

And I continued to heap those feelings onto myself for a long time. I was so weighed down and so frustrated.

I began to feel like I’d never be the successful, happy mother I once thought I could be.

In my desperation, I turned to a church leader for help. He saw my depression had returned and was keeping me down, and tenderly suggested that I put Toby in preschool for a few days a week so that I could have a break from the constant stress.

For some reason I had the misguided notion that if I put my three year old in preschool, I was not a good mother. I had wanted to keep him home with me until he was ready for a real pre-kindergarten classroom. But the idea of 9 hours of relief a week was too good to pass up and I enrolled him in a three day a week preschool at a nearby church. Looking back, I realize that a good mother isn’t all self-sacrificing to the point of running herself down; she recognizes her limits and makes changes accordingly.

The break was all too welcome, but sending Toby to that preschool was the decision that finally put us on the path to those answers we needed.

To be continued…