Why I'm Grateful for the Team Supporting My Son With Down Syndrome

Wil’s team and I recently sat down together for a follow-up meeting on his behavior plan.

We have experienced bumps in the road with Wil’s behaviors along his journey through the school years. He has displayed what are typical behaviors for individuals his age with Down syndrome, including sitting down obstinately or fleeing the scene when he feels overwhelmed. We’ve been able to work with him through these behaviors with motor breaks, social stories prompting communication, and sometimes it’s just a matter of sitting down with him until he feels back in control of the situation. Now, in Wil’s seventh-grade year, his team and I have decided on the need to create a formal behavior plan. The mix of entering his teen years (he’ll be 13 in February) along with advancing communication and processing gaps between Wil and his typical peers prompted the decision to form a behavior plan.

Wil’s resource room teacher, paraprofessional, teacher consultant, social worker and speech therapist were all present at this follow-up behavior plan meeting. After the initial pleasantries, we got down to business. We created the initial behavior plan about a month prior to this follow-up meeting. The purpose of the follow-up was to discern what aspects of the plan were working, what areas of the plan required more detail, and any other areas of the plan that needed to be re-mapped or removed.

As a whole, we concluded the initial behavior plan that was put into place was working. Of course, this is an ever-evolving process, but at that point, we decided to continue with the current plan with a few added details. I can’t say exactly when, but at some point during the meeting I was overwhelmed with the thought that we were all sitting together, in this room, for Wil. Yes, it is a statement of the obvious. But if you really think about that fact in and of itself, it’s powerful. Of course, things aren’t perfect; you can poke holes in any program or process. But I thought of my mom’s friend’s son. He is my age, almost 50 years old and has Down syndrome. There was no such team for him. It’s hard to believe, at one time, these rights for Wil did not exist.

Wil’s rights are protected under IDEA. IDEA was first known as the Education of Handicapped Children Act, but even that did not pass until 1975. That’s really not so long ago. My mom’s friend’s son was born before this act passed. Bringing her son home from the hospital without institutionalizing him was a highly progressive choice at that time. Most parents at that time  were told their child would be a burden to the entire family — their marriage would surely be strained, siblings would suffer, and the child would not be able to talk, read or write, and possibly not walk. Their child would never leave home. They were told that institutionalizing their child was surely the most humane choice for all involved. My mom’s friend was a pioneer in the fact alone that she chose to take her child home to raise.

These laws are powerful, but as powerful as they are, we are all humans with our own emotions and own ideas working within the guidelines of the laws. A few short weeks before this meeting, I was not able to step back and appreciate the whole of that very fact. Wil’s behaviors had escalated and I was receiving almost daily calls from the school. Getting Wil out of bed every morning was at least a half an hour process, and it was becoming a given that he would completely shut down every day at lunchtime. Whether Wil would get on the bus or not was the question of the day. The tension within me was building as this continued day-after-day-after-day. I knew my son was hurting inside, and his team and I were not able to crack his code. Asking me to step back and appreciate the whole would have been beyond my emotional capabilities at that time.

Fortunately, I was able to step back just enough to realize I was at an emotional breaking point. I knew I was in an emotional place where I could only see one step in front of me and I may be missing a lot of clues that someone from the outside looking in could see. I called Wil’s teacher consultant, Julie. She has known Wil since he was in preschool. Julie also sat in on Wil’s IEP and behavior plan meeting. However, Julie does not work with Wil on a day-to-day basis. She also has a vast knowledge of behaviors and how to work with behaviors. When I called her, I told her where I was emotionally. That I could be missing critical pieces because I could not see outside of where I was. I asked if she could help give me a broader lens. Julie immediately put me at ease, validated my concerns and also helped educate me in these new areas I was navigating with Wil. It was a turning point for me. The tides began to turn. Wil’s behaviors started to fall in line with the plan.

We have not struck gold, though it feels like it right now. There is no perfect plan. But there is a plan that works right now, and this is that plan. After living and learning what I have in the last few weeks, I will revel in each day, or even if it is mere hours, that this plan works. There is no real cracking of the code. But there is always a new discovery. And that discovery takes us two leaps forward after so many backward steps. Wil’s team is taking those steps right along with him no matter which direction they go.

Sitting at the table with Wil’s team at the follow-up meeting, I was able to appreciate that very fact. The fact that Wil is doing well with this behavior plan. The fact that Wil is now getting out of bed easily in the mornings, taking the bus home and not objecting to homework. Wil did have a rough day the Monday after Thanksgiving break, and with the holidays coming up, the variances in schedule will likely cause more bumps in the road. And we know as each full moon approaches, that causes waves in behavior too, not just the tide. This behavior plan is still, and will continue to be a day-to-day process, with many tweaks and turns along the way. But while we are riding a good spell, I am taking advantage of the wide-lensed view.

Each day, month and year I learn more. More about the law. More about human behavior — first and foremost mine! I’m not in a place where I can appreciate the big picture when times are tough. The many detailed pieces that go into the days when Wil is having a rough spell pile up to a level of patience I’m not always sure I have. But I miraculously find my well of patience is dug deeper and deeper with each new experience. Would I ever call it a burden? Not for one hot second. I will always be Wil’s first and biggest advocate. Though each of us on Wil’s team has our own emotional breaking points, we are together for one purpose — the success of Wil Taylor. This is a team of people who love him, support him and want the very best for him. They believe in his future and in his potential — not because a law says so, but because they care.

Today I will focus on that fact. Today I will gather all that I have learned from these past weeks. When the time comes again that I can not see past my next step, I’ll be a little bit stronger, a little bit smarter, and know that though I can’t see it now, there will be a clearing of the clouds. There will again be a time just like this, when I can sit with Wil’s team and feel the deep gravity and gratitude of the moment.