Learning to be a self-advocate

Before I start this story, I’d like to preface it by saying that while it seems like I’m complaining that the educational system has let us down and the people who we thought were there to help us really didn’t, … well… actually, I do feel like that. But it’s kind of my fault too, so I can’t be mad at anyone, which is probably the real reason why I’m so surly about the whole thing.

After I wrote this, I realized that my “short story about the importance of self-advocacy” became more of a novella. It’s important, though. Maybe it’ll be helpful to some of you.

When Emmett was born, we were taken by surprise by his diagnosis. Sure, we knew it was a possibility from a couple of markers on an ultrasound, but the odds were still very low. Our NICU doctor (an amazing man with a son of his own with Down syndrome, who told me my son was perfect) started the process of enrolling us in Wisconsin’s birth-to-3 program. All states have it (as far as I’m aware), but it can go by other names. Basically, they help with whatever you need to get your child the services he or she needs until they turn 3. Our birth-to-3 coordinator got us set up with Medicaid, would have gotten me set up with the WIC program if I hadn’t declined, and brought us therapists whenever she or we thought it would help. She also got Emmett set up with his school as he neared his third birthday. It was awesome. However, once Emmett turned 3, we were kind of kicked to the curb (at least that’s what it felt like).

Once children age out of the birth-to-3 program, they become the responsibility of the public school system (at least in terms of readily-available therapies). Obviously parents can seek out additional services if they think it would help, but it’s something you do yourself.

By nature, I am a do-it-yourself-er. If you’ve been following me or know me in person, that should be pretty obvious. I’m not one to ask for help, and I figure that if it CAN be done then I can figure it out myself. I’m not into “support groups” (not much of a people person in general), and I try, whenever possible, to do my own research and to follow my instincts. I’m also a person who tends to defer to authority figures. If a professional tells me that they’re doing what’s best, and I don’t have any qualms or strong opinions of my own, I will defer to their better judgement. They are the expert, after all.

I did a lot of reading in those early years, and I sent a lot of emails. I contacted a hippotherapy facility near us to see if they thought horse riding would help with his balance and gross motor skills. They said yes, but it wasn’t covered by our insurance. I contacted the YMCA and a local special-needs therapy facility with a pool to ask about swim lessons. I wanted to see if they thought they could help us with his fear of water, and maybe water resistance could help with his poor muscle tone. One place said “we don’t do that,” and the other said “he’s too young.” I looked into music therapy, gymnastics, dance classes, and mommy-and-me everything. Every place I spoke to either said he’s too young, we don’t deal with special needs children, or it’s too expensive.

However, when Emmett started Early Childhood at our local elementary school at age 3, it became clear that I was out of my depth and should just leave it to the school. He was getting physical, occupational, and speech therapy several days per week. His teacher was getting him to communicate using a picture board. All of that was great, and it seemed like we were doing everything we could for Emmett. I asked his teacher and therapists if there was anything else I could or should do with him at home, and they basically said, “Don’t worry, we have it covered here.” However, once he turned 4 and became eligible for the 4K program, his teacher told us he wasn’t ready. He wouldn’t fit in. He couldn’t go to 4K, and should stay in Early Childhood another year. This was not a question from her, it was a statement. All the therapists in our meeting nodded in approval. They know best.

The following year, we began talking about kindergarten. Or, rather, his teacher started talking about how Emmett was now too old for the Early Childhood class, so he had to leave. There was no mention of “kindergarten” until I mentioned it. All talk focused on the Special Ed room. When I asked, “How much time will he be with his peers?” I was told that he’d be with them whenever possible (which sounded more like “whenever is convenient”), but that he wouldn’t really be a good fit in the kindergarten class because he’s not ready. He’d be there for the beginning of class, the end of class, lunch, and specials (gym, library, music). This was…upsetting. I don’t like to think of my son as someone who “can’t.” Because I know my boy, and he CAN if you just give him a chance!

At this point, I pulled out the big guns and asked my mom to come with me for another meeting. Mom was a teacher, and is now a sign language interpreter, so she’s been on both side of “special needs” education. Because I brought reinforcements, the school also brought reinforcements – several other people were in the meeting whom I’d never seen before. They were all there to nod their heads when Emmett’s teacher recommended something, and to look at us like WE were the unreasonable ones when we asked for more inclusion in the kindergarten class.

I decided to do some more research, and began reading about how children with Down syndrome learn. I honestly hadn’t noticed much of a change in Emmett’s speech, gross motor, or fine motor skills since he’d started school. At least no more improvement than he would have had without schooling over the same time period. I read about the current theories about how our brains learn, and how kids with Down syndrome learn differently. Not slower, but DIFFERENTLY. I talked to his teacher about what I had read, and she was not supportive. I got the feeling that she thought I was telling her she was incompetent, and she basically shut me down.

This was the first time that I realized that I couldn’t rely on other people to do what was in my son’s best interest. This was when I realized I needed to advocate for my son. I decided that I would take it upon myself to teach him in the way that he would learn best. I bought a book that had popped up several times in my research about learning differences in Down syndrome children. I highly recommend it – Whole Child Reading, by Natalie Hale. It describes HOW kids like mine learn, and explains the best way to teach to their strengths. I read it cover to cover, started implementing some of the techniques, and BAM! Emmett could read a book I wrote for him! Emmett. Could. READ! I was so excited to see results that I shared it with his Early Childhood teacher. I sent his book (and the flashcards I had used to teach him the words) to school, and said “He can read this story I wrote! I found a book about how to teach kids with Down syndrome to read in a different way, and it’s working!” She sent a note home with Emmett that said, and I am NOT paraphrasing here, “That’s cute. I see that he’s memorized the book. Now I get why he doesn’t know the letters in his name anymore. Also, he’s saying the letter “M” instead of the word “am” in this book he’s memorized.” I was livid. I decided I wasn’t going to talk to that teacher anymore. She was dead to me.

I started looking into other schools in the area. They turned us away with a letter that said “We don’t have the services available to handle a child like your son.” I contacted the school district to ask if this was normal and if they had any suggestions for me. They said “The school he’s at now is the best we have for special needs education.” I looked into homeschooling. I considered a Montessori school. I thought about moving. Finally, I decided to have a sit-down meeting with the Special Education teacher. After all, Emmett was about to leave Early Childhood, so what did it matter what that teacher thought anymore? This woman is amazing. She LISTENED to me. She saw Emmett read his story! She asked to borrow the book I had read, so she could study it over the summer and implement it when he moved to her class! I could have hugged her (I don’t really do “touching”).

She asked about Emmett and what he likes, so she could use that information to help him learn. His old teacher never asked a single thing about his interests. I asked her if there was anything else I could do with him over the summer to prepare him for school. She gave a suggestion for a music therapy program she had heard of that dealt specifically with special needs children, and had a lot of experience with Down syndrome in particular. I contacted them, and their first question was “Is Emmett part of the waiver program?”

Whaaaaat? I had no idea. I asked them about it, and they sent me a link to a website that I would have NEVER found unless I already knew what it was called. Apparently, Wisconsin has something called the Children’s Long Term Support Waiver Program. It’s extra money they give you to help pay for services that are not covered by insurance. They also give you a coordinator that helps to determine what other services are available that might be helpful, and helps to set everything up. Unfortunately, there was a waiting list. It might be 6-9 months, maybe longer, before we’d make it off the waiting list. I was mad that no one had ever mentioned this to us. I was mad at myself for not finding it earlier on my own. I was broken-hearted over the thought that we could have been doing so much more for Emmett if I hadn’t just assumed that others were right when they said “We’re doing all we can.”

Fast forward to now, and we finally made it off the waiting list! Not 1 month after we first qualified for services, and we’ve already started swim lessons (his instructor is amazing), and he’s starting gymnastics this week. We also have a meeting this week to see what type of music therapy will help him the most. We’ll be working on gross motor, fine motor, and communication skills. He’s so excited about it all! I’m so excited about it!

His new teacher is perfect. She takes my suggestions (rather than shooting me down for interfering), and offers suggestions of her own to keep working on at home. He’s a part of his kindergarten class, and has a lot of friends who will see him around town and yell to their parents “That’s Emmett! He’s in my class! Hi, Emmett!” His kindergarten teacher is working closely with his Special Ed teacher to ensure he’s getting the most from both of them. I’m beyond happy with how it’s working out.

This year, he’s improving by leaps and bounds. He’s talking in complete sentences! He’s making his OWN sentences, rather than just repeating a sentence he’s heard before that fits the situation. He’s learned to RUN! He can climb stairs! He’s started back-talking! Wait… that’s not so good… but he’s using his own words to do it, so I’m not even that mad!

So, anyway, that’s the long, roundabout way of saying YOU KNOW WHAT’S BEST FOR YOUR CHILD! FIGHT FOR THEM, AND DON’T BE COMPLAISANT! FIND SOMEONE – ANYONE – WHO IS WILLING TO HELP AND WORK WITH YOU AND DON’T LET THEM GO! It might have taken me 6 years to figure out how to navigate the system, but it’s been worth it.

One Reply to “Learning to be a self-advocate”

  1. I hugged you when I delivered the girl scout cookies! Sorry! HA HA!! 😀

    I’m crying by the way…but tears of joy because Emmett has THE MOST AMAZING MOM!!!!

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