See How Cody’s Parents Learned How to be His Greatest Advocate…

Cody’s parents learned how to be his greatest advocate…

for his health, education and total well-being

When Cody was a baby, a neurologist told me that the best thing I could do as a parent was to become a strong advocate for him. This physician went on to say that the brain was amazing, and that while there was no certainty that it would heal, I shouldn’t let the outdated research and the opinions of others decide what my son did in life. I will never forget his NICU nurse Debbie, who strengthened that message for me when she gave me something tangible to connect with.

She had received a letter from a family who had been in our shoes 11 years earlier with a daughter in the same circumstances; same kind of brain injury, same shunt, fighting hard in the NICU for three months. As I stared at a picture of a “completely normal-looking” 6th-grade girl, she read just enough of the letter for me to hear about the girl’s accomplishments. She was on the honor roll, played the flute in the band, and was doing amazingly well.

…the best thing I could do as a parent

was to become a strong advocate for him.

I really needed to hear that at the start of Cody’s life. Later, when Cody was 2, I connected with an organization called Reaching for the Stars; a Foundation of Hope for Children with cerebral palsy. Anna Marie Champion was one of the co-founders and she had a daughter four years older than Cody. She is really my greatest mentor – the one that taught me to fight for my child and to have the same expectations for him as for my other kids. When I had an issue with his education, or anything really, she had already been there with her daughter. I opened two chapters of the non-profit with her help; one in Cincinnati and one in Chicago. We did a handful of events together, and overall, it gave me a sense of doing something meaningful. As I was preparing to leave Chicago, Anna stepped down as co-founder, but we continue to be friends. She calls me when she needs some help problem-solving, and I still call on her for the same. Her daughter Morgan is now a student at Samford University, totally conquering college and being a great role model.

She is really my greatest mentor – the one that taught me

to fight for my child and to have the same expectations

for him as for my other kids.

As I look back at all we had to do with the doctors and schools, I wish I knew then what I know now about the importance of being able to effectively communicate our beliefs, standards and goals for our son. Perhaps I would not have wasted so much time asking for forgiveness for being “pushy”, or apologizing for wanting more than mediocrity, or believing I was wrong to fight for non-traditional medical care.

I wish I knew then what I know now about the importance

of being able to effectively communicate our

beliefs, standards and goals for our son.

Our goals for Cody were the same as for all our children and probably those of every other parent. We wanted him to grow up and achieve all the things that were important to him. We knew that there would be obstacles he would face because of other’s attitudes and societal stereotypes, but we were determined to help people understand that all kids struggle, whether disabled or not. We decided early on that he was going to be held to the same standards as any other kid his age. The biggest issue we dealt with, (and still do), was how others acted like he was some kind of novelty; treating him “special” because he had so many medical issues, was in a wheelchair, or even because he wore glasses. We were determined to help him develop good habits and values. Our long-term goals for Cody were to be in the best health, to attend regular/general education classes, and to participate in any desired sport or activity he desired; with accommodations where appropriate.

We knew that there would be obstacles he would face

because of other’s attitudes and societal stereotypes,

but we were determined to help people

understand that all kids struggle, whether disabled or not.

To achieve these goals, I also learned I needed to go with my gut instinct, especially when we encountered all those naysayers; from the first doctors who told us he would have a poor quality of life to the wrestling coach in 6th grade that wasn’t quite sure what to do with him. One of our greatest accomplishments was getting Selective Dorsal Rhizotomy (SDR) surgery on Cody at the age of 3. The therapists and doctors wanted to follow the more traditional treatment path (multiple surgeries, painful injections, other therapies and treatments), but I knew this surgery could be a game-changer; giving him an opportunity to have more of a childhood and greater health. We had to be persistent and follow the hospital’s guidelines, but three weeks later our request was granted and Cody was able to move his legs without spasticity and his speech literally improved overnight!

I also learned I needed to go with my gut instinct, especially

when we encountered all those naysayers.

As great as the need for advocacy for medical care was, the advocacy needed for Cody to have the best educational experience was even more challenging. It didn’t help that my husband’s job required us to move so Cody attended six different schools over these last 11 years. For elementary and up through 11^th grade, we lived in two states. In Illinois, Cody was enrolled in general education and participated in a regular curriculum with only the support of an Aide who provided any needed safety and accommodations, like scribing. However, when we moved to Ohio, the attitudes towards “special needs” students were much different as well as how the special education model worked. In this state they used a “co-teaching” model with an intervention specialist and a teacher. I did not believe Cody required this type of support, where the teaching was slower-paced and not comparable to real life. I realized I was going to have to do a lot of educating the education team!

I realized I was going to have to do a lot of educating the education team!

All parents of students with special needs are aware of the IEP process and that was where I knew to take my leadership role for my son. However, sometimes it is not easy to create a team. If a teacher has never had a child with a disability in their classroom, it can feel overwhelming for them. Most parents of special needs kids often feel like their ideas are not being heard or understood. And, sometimes it is hard to get teachers and support staff to work with you. Here’s where it is crucial, as the parent, to communicate clearly and be patient. It also helps if you can find even ONE ally in the school.

Most parents of special needs kids often feel like their ideas

are not being heard or understood.

I had a challenging experience at Cody’s IEP meeting that year, even though I knew the most important role I played was helping to set realistic goals and communicating with all those involved. I was very knowledgeable about how to ask questions and help push educators to think outside the box. Most educators are fixated on “equal” education because that is what the laws require, but as parents, we have to stress equity. For example, it is not enough to only provide a student with assistive technology and expect that it’s enough because he has “fair access.” A good example is, starting in 2nd grade I began to let Cody have a say in what was talked about in his IEP meetings. There was a time when he didn’t want to sit in a special Rifton chair that looked different than the other kid’s chairs. We knew we needed to do something different, and the team worked together to find an acceptable outcome for all.

Most educators are fixated on “equal” education

because that is what the laws require, but as parents, we have to stress equity.

I share this next experience so that you can be prepared for anything similar. In Westlake, Ohio, the intervention specialist approached me at the IEP meeting. He said he was concerned about Cody and his reading ability. I was perplexed by this because he had typically been a very strong reader. I asked him why he was concerned and he said: “Because he uses a screen reader.” I was sort of taken aback. He did not yet know anything about my kid’s ability and let this accommodation guide him to this inaccurate conclusion. I explained that Cody uses a screen reader because his processing time from his eye to his brain was slower because of the vision impairment and brain injury. But, I continued, that his phonetic skills and his comprehension were quite normal, and at that time, borderline accelerated. He merely said, “Oh” and walked away. P.S. Eventually, that intervention specialist was removed from the team.

Over the years, we have had many battles and we have also had

a lot of growth. Through it all, the goal has always been for Cody

to just be like any other kid.

Over the years, we have had many battles and we have also had a lot of growth. Through it all, the goal has always been for Cody to just be like any other kid. His wrestling, track, speech and debate coaches have all embraced him. I credit that to Cody. Maybe all those years of letting him be part of all decisions helped prepare him for bigger decisions. I think it is important not to take away any child’s individuality and that can be accomplished by helping them make realistic goals. When Cody tells me he wants to do something, we brainstorm his expectations and what he thinks he needs to succeed. We then talk about what success is, how it is different for everyone, and we make a plan.

I think it is important not to take away any child’s individuality

and that can be accomplished by helping them make realistic goals.

You are a team, and the goal should always be to do what is best for your child. But you have to remember that as the parents, you are the experts for your child. Yes, teachers have a VALUABLE impact on our children, and they contribute. It takes work at home; it takes work with the education team; it takes time with Physical, Occupational and Speech therapists. It has to be a wrap-around effort for all. But, at the end of the day, when these “professionals” get to move on, our kids don’t get to forget about their disabilities; and neither do we as their parents. We learn what works and what doesn’t work over days, months, and years. It is ever-changing, and we are the only ones who have that knowledge of our kids.

You have to remember that as the parents,

you are the experts for your child.

Still, I wish someone had told me how important communication was. I have always had an open line of communication with Cody’s schools, but I didn’t always know how to communicate with them effectively. There are a lot of politics involved with the education system that I might never quite understand. I also wish someone had told me to trust my gut more. I pushed A LOT for things and often was made to feel like I was doing something wrong. It wasn’t silly for me to push for iPad use in 1st grade. Throughout elementary school, I was told that I shouldn’t be thinking about high school yet because there was plenty of time. Well, I wasn’t foolish to think forward instead of focusing on the present moment. I’m glad I was never satisfied with those answers and that I always pushed back.

I think society thinks we should be grateful for what we DO have,

and we shouldn’t ask for more.

Time is moving by very quickly. I often feel like Cody is still that cute giggling kindergartener, but he is fast-approaching adulthood. I think society thinks we should be grateful for what we DO have, and we shouldn’t ask for more. I think schools believe they are being generous for giving our children individualized education. Absolutely, all we are given is helpful. But, we as parents and families of special needs individuals, do not have to accept services that are not acceptable. We can be collaborative, but when we are not satisfied or aren’t allowed to be part of the team, it should be seen as proactive when we push back. Every parent, and professional, should have reasonable expectations, and because our kids are “special” we have the right to ask for more.

We as parents and families of special needs individuals

do not have to accept services that are not acceptable.

Lastly, as a community of parents of special needs children, I think that we need to be more trusting and realize we have support. There is no shame in asking for help or asking someone to listen to you. There is no shame in being overwhelmed, not knowing the answers, and looking for validation. There is no shame in showing up for your child.

Every parent, and professional, should have reasonable expectations,

and because our kids are “special” we have the right to ask for more.

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This post originally appeared on our January/February 2021 Magazine

See How Cody’s Parents Learned How to be His Greatest Advocate…

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