only one shoe | Chrissy, Superpowered Mama

Article courtesy: Chrissy Kelly, Life with Greyson & Parker

Hello, this is the school nurse. We have Greyson here in our office.

My breath catches, then stops, and the rest of the world stops making sound.

He’s alright now, but I want to let you know he’s been bitten. I drop to my knees. My silence is punctuated by gulps of air so I can sob.

Hello? Are you there? He’s okay, he’s just been bitten on the stomach- but it didn’t break the skin. He was crying so we got him calm and we are trying to ice the area. But he’s ok- really. I was aware my overreaction was severe but I couldn’t take one more single thing. I was scared and confused and my heart was breaking a bit more with each day that went by. Greyson was in an autism preschool program called PALS, and it was starting to feel like we were in a nightmare.

Yes, I’m sorry. I’m here. It’s just… He can’t talk and I’m worried he’s not ok and he probably doesn’t understand what’s going on. Can you adequately explain the terror and protectiveness you have the ability to feel for your nonverbal child? Are there even words invented to explain it? Because I have never come close to finding them.

It was the second time he had been bitten. Add to that an unexplainable black eye.

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Greyson’s first day of preschool, August 2012

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His black eye

Things felt wrong from our very first day there. I chalked it up to me. He was only three and I wasn’t ready for him to be gone at preschool five days a week from 8:20-1:20. The classroom age mix was 3-6 years old. That’s too much of a gap for general ed- so how in the world would it work for children with autism when each child is so vastly different from the next? I wasn’t sure if it felt bad because it wasn’t the preschool experience I expected,  or if it felt bad because it wasn’t right for us.

Can I volunteer in his classroom? I asked the teacher. No, she responded unsympathetically. Every student in this room has an IEP posted and it is a private legal document. You can’t be in here without advance notice and you need to be accompanied by a Director or the Principal. I suddenly felt stupid for even asking. Angry I was being deprived of one more typical mom thing.

On the second morning of school I parked and walked him up to his classroom while Grey screamed and attempted to lie flat on the ground. For your convenience you can just bring him to the school drop off lane in the morning, I was told. Oh that’s ok- I would prefer to park and walk him up until he’s comfortable here–that way he realizes I am bringing him here on purpose, and not just letting him get yanked out of the car by someone we don’t know.

Okay, you can do that but an aid will meet you on the sidewalk. Unfortunately the parents aren’t allowed in the class as to not disturb the other students.

It was obvious that I was not welcome in Greyson’s classroom.

Other than basic information and testing results the new school didn’t ask me for information on Greyson. Even my friends with children in general education filled out information about their child on their likes, dislikes, and skills and strengths. A couple of weeks after school started I created lists of programs and skills Greyson had mastered during Early Intervention, as well as the things he was currently working on in his home behavior program to share with his teacher. I made an appointment so we could review it together.  I also brought his Speech Teacher his current goals and capabilities based on the year of one-hour, twice weekly Speech Therapy sessions we both religiously attended. I was especially adamant that she knew that Greyson was capable of making three word requests. I want drink. I want car. Grey tries to get away with theleast amount of language possible and I didn’t want that to happen at school. I wanted to make sure they knew what he was capable of so they could continue his learning from there.

Grey did so good today, he Speech Teacher reported. He said ball and car and mountain bikeHe said mountain bike? I asked incredulously. (it’s not possible)  Um- did you tell him to say mountain bike or show him a picture of a bike and tell him what it’s called?

No, he just said it all on his own out of the blue- ‘mountain bike’.

I’m curious-  if he says car- does he get reinforced or rewarded?

Yes, of course, she said smiling as if that was the answer I was looking for.

Ok- can you please make sure when requesting preferred items that he uses three words? As I mentioned before he tries to get away with as little language as possible and I don’t want him to regress.

Greyson is stubborn and hard to keep focused, but he is also a great and consistent learner. He tests all new Teachers and aids to see what he can get away with. He responds best to firm yet loving Teachers. During his year of at home Behavior Therapy they only had to stop one program due to Greyson being unable to get it.

However, all the feedback I got from the PALS classroom just didn’t describe Greyson. It was obvious they had one way of teaching and he just wasn’t fitting their mold. No one was able to figure out what made him tick.

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We’ve had many good autism teachers and they just keep trying new methods until they figure out the Grey’s motivation and preferred rewards. And some of the very best Teachers can figure out things about him that even surprise me. But at this school every week the teacher would have to stop a lesson and start a new one because Greyson wasn’t able to learn or demonstrate his knowledge.

After a couple of months Greyson stopped using three word requests at home and would only use one word: Juice. Car. No. Chips. And when he wouldn’t get the item he would scream them at us. JUICE!!! CAR!!! NO!!!! CHIPS!!!! After a couple of more weeks he would only point at what he wanted and scream. Then even the point vanished. He could no longer label colors or items he once knew. All the hard work that was poured into him during Early Intervention was gone. I was concerned so I asked for weekly written updates including any information that would help us reinforce the lessons they were working on in school while we were at home. Every few weeks I would receive an update. Here’s an example of one:

Good afternoon,

Hope you had a good week!  Looking toward next week’s programs; Greyson will continue previous programs with the exception of his “Come Here” program and his program for matching object to object which have been moved to maintenance.  I will be adding DT: Lesson 8: Matching: Picture to Picture

My head was spinning. Is that English, I wondered? Greyson was vanishing before my eyes. Again. First from autism and now from school. I would pick him up from school in the afternoon and it was like he didn’t even recognize me he had retreated so far inside his head. I called my friend crying. I cried a lot then. I still feel sick when I drop him off every single morning. It’s been nine months. Shouldn’t that have gone away by now? I asked her. I ask the school for information and I don’t get anything. I don’t understand what’s going on and I don’t know what to do.

Have you ever thought about taking him out of school? my friend asked. She knew our concerns and how bumpy this road had been. I had thought of it – but only in my daydreams. Isn’t that illegal or something? There were no private schools for children with Special Needs around. Greyson didn’t yet have the ability to mainstream in a general ed classroom either. Since he had turned three, he was no longer eligible for the services provided through the state’s Early Intervention program. Our options were limited.

But I couldn’t watch him fade away any longer, and her words were the push I needed to make change. I was going to risk it and pull him out of school. I needed to come up with a plan built for Greyson. A plan that would help bring him back and hopefully one day- help him learn again. We started 20 hours a week of at home Behavior Therapy. We sent him to a private preschool one day a week with a typical special aid shadow that we paid out of pocket. We started private $85 an hour speech therapy again and would alternate other activities like horse back riding, swimming lessons and typical child play dates and outings. Some nights I couldn’t sleep, I was so scared I was doing the wrong thing.

After a couple of months Greyson started to come back. So slowly at first. And after a few months I finally experienced this blissful exhale of relief. We were on the right path doing exactly what we needed to do, a fact I could feel in my bones. Before I had been desperately searching for a path worn in the grass for us to follow- but I realized- it was up to us to wear our own path. For the past two years we have done our own thing, and Greyson is thriving, still stubborn and so happy.

Greyson turned five nine months ago and I knew it was time to explore schooling options again. He needed the structure and curriculum that only five days a week school could provide. I was scared but ready. I called and spoke with the Director of the PALS preschool program and voiced all of the concerns we had about the first PALS classroom we were in. We set up a tour for another school in the PALS program, hoping that this site would be different. As soon as we walked in the door Greyson reached his arms up to Michael saying, I want up. My heart was thumping. Please let this be better, I repeated in my head over and over.

There wasn’t a toy in sight. There were no days of the week or colorful art or the children’s names decorating the wall. Having autism means that my son is a professional learner and will be doing extra learning all of his life. When a child is only five, learning needs to look like joy and fun. This classroom looked more like a large storage closet. It felt like an insane asylum. A row of children sat in front of a Signing Time DVD; none of them engaged. There was a child strapped into a chair screaming, setting off the other children to do the same. Another child was yelling and groaning on the floor. My hands were shaking and I was rapidly swallowing so I wouldn’t cry.

Home, home, home, Greyson repeated over and over.

Do you have any sensory activities /rooms for the kids? we asked
We have a weighted vest, the Director replied.
Do you do Speech Therapy one on one? Greyson does much better that way.
No- we usually do speech in a group setting. It works better that way.

They stood behind every reason they gave me, just like at the previous site. And most of the answers were – This is how we do it. This is how it works for children with autism. How could these professionals run an autism program and not even realize autism doesn’t work that way for anyone? There is no one size fits all.

We finished the tour and walked to our car. The air was thick with silence until I started to cry. “He can’t go there. We can’t make him. That was so awful. It’s a place you go to dump your kid for five hours- not a place you send them to learn.”

“No- I agree,” Michael said. “Greyson was gripping me so tight the whole time we were there… he remembers”.  Michael’s voice started to crack as his words trailed off.

For months we researched and asked everyone we could. I asked Teachers, and parents of children with autism. I prayed. I hoped. One evening we decided we needed to move to a completely different neighboring school district. Like pulling Greyson out of school- It was another moment filled with hope- but even more fear. What if we do all of this and it’s an awful idea? What if we end up worse off? But we were ready to go for it and so we did. We listed our house and within a month it was sold and we had purchased another. Everything was moving so fast. And one month ago we started Greyson at a new school in an autism classroom. This week we had our first 30 day IEP meeting- Individualized Education Plan . An IEP is mandated by the Individuals with Disabilities Education Act (IDEA). The IEP describes how the student learns, how the student best demonstrates that learning and what teachers and service providers will do and provide to help the student learn most effectively.

And with tears in my eyes I will tell you- this meeting was incredible. I finally felt like I could stop waiting for the other shoe to drop. This is it– and it is good. I looked around the large rectangular table filled with people willing to do what it takes to help Greyson succeed. It was hard not to cry. This environment has exceeded our expectations. The school does 1,000 things differently and in the best interest of how each individual learns. They have a whole room dedicated to gross motor and sensory stimulation- which really helps kids like Grey who need it to stay focused and calm. The way the Teachers describe Greyson and his learning process shows that they get him. The goals they set for him are hearty yet realistic. They took turns speaking at this meeting and you can tell they want him to succeed- and they will do everything they can to make it happen. His Teacher told me that he’s the perfect fit to their classroom- and that they didn’t even know until now that it had a Greyson shaped hole until he came along. His Teacher gave us a journal notebook to keep in Grey’s backpack so she and I can communicate back and forth. The greatest part- Greyson walks into his classroom happy every single day. He may not talk but he can communicate –and that right there is the greatest sign. He likes going there- and because of that so do I.

I hesitated writing this post for years. By nature, I am a fixer- not a complainer. But I feel a need to tell this truth. To admit that there have been scary decisions we’ve made that I’ve doubted and been sick over. To show that something bad can turn into something amazing. To remind you to trust your gut instincts. I believe that the people in the PALS program have good intentions but outdated practices that desperately need to be changed.  For Greyson’s privacy and safety, we do not share where he currently attends school.

I look around at our new home and realize this is exactly where we are supposed to be. I feel like I dreamed this house and school into being. God has been here every step of the way, opening the right doors and closing the wrong ones. I frequently tried to walk into those closed doors and got hurt. I’m realizing now that’s because it was time to walk away.

And Greyson is doing amazing. It’s so easy to forget that most set backs are temporary.

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Just recently he started to be able to write his name.

And I’ve also realized that the journey isn’t about writing his name or mainstreaming in a general education classroom. It’s about the tiny little million things he does every day. The tiny things that lead up to these big milestones and miracles that blow us away.

It’s been a hard journey, but one that I am so proud to call ours.