The Back to School Experience for the Special Needs Parent

Our daughter Meadhbh started middle school this year. I watched her anticipation build all summer as she fluctuated back-and-forth between excitement and nervousness. I took her back to school shopping (and discovered a whole new world of locker decoration merchandise in Target... rugs, wallpaper, chandeliers...who knew?? ) We went to the open house & orientation nights in August. We practiced her new locker combination about 100 times, walked the corridors to her classes and rigged up a chandelier & lights in her locker. I took pictures of her with her friends in the hallways underneath the middle school sign and definitely caught a strong case of their infectious excitement. Keith & I were over the moon for her and the whole new experience before her.

September 3rd dawned and she got on the 6:50 AM bus in the outfit that she had carefully chosen the night before and headed off on her new middle school adventure. She came bounding home with stories, triumphant that she had found all of her classes, was able to open her locker, liked her teachers etc.

Keith & I attended her back to school night and sat in the general presentation listening to all of the opportunities available to the new 7th graders. We are fortunate to be in a district that is at the cutting edge of technology integration in the classroom and has an excellent music program etc. So many opportunities to take advantage of. We don’t know what decisions Meadhbh will make over the next few years but we know that she has all of the ingredients for success liberally sprinkled into her pot. The world is her oyster, due to her educational opportunities and her ability to take for advantage of those opportunities.

Of course... Keith and I have been through the middle school transition process before. Two years ago we attended the same BTS night and listened to a similar presentation for Ronan. I Cannot stress enough how vastly different the back to school experience is for parents with special needs children. All of the excitement and joy and hopefulness we felt for our daughter stood out in direct contrast to the terror and anxiety and uncertainty we felt when Ronan was entering middle school.

I remember leaving back to school night after rotating through all of Ronan’s classes and running through the hallways to get out of the building. I felt like I was going to suffocate or vomit in the hallway. I was listening to special ed teachers talk about approaching mathematical concepts that Ronan had mastered in 3rd grade and I wanted to scream against what had happened to my son. In our case, Ronan is in this Special Ed setting because of a brain injury. For other friends, it’s because their child was born with genetic issues, is on the autism spectrum, has a neurological disorder, severe learning processing issue or has acquired brain injury from childhood, among other challenges. Whatever the case is, whenever the grief you felt about your child not being on a “normal educational path" started, whether it was birth, or last month, or three years ago, the fear and anxiety and difficulty is the same.

That general Back to school night presentation speaks to the entire special education parent experience. Sitting in the auditorium listening to these talented teachers and staff talk enthusiastically about the opportunities laid in front of our children was vastly different with my mainstream student than it was for Ronan.

When I sat there two years ago I didn’t feel like they were talking to me. I felt like I was in the audience floating on an isolated island looking from a distance at all of the other parents on the mainland. Everything the principal and teachers were saying felt like to was for the other parents. All of the social and extracurricular possibilities were not for my child. The new one-to-one laptop program that was so exciting for the administration and other parents just sparked terror in me...How was my brain injured son going to navigate this? How would I be able to help him with his homework in this new digital world with no textbooks?

I wondered...How will he navigate the hallways? He isn’t ready to ride the bus so how would drop off and pick up go? Was there a key that we could get for the locker so he didn’t have to wrestle with the combination lock? How would we be able to keep track of his homework and class requirements? Would people be nice to him? Would he make any friends? Who would he eat lunch with? What if he wants to buy lunch--could he figure our what to do? Will he be able to balance his tray without dropping it? Many, many things that we take for granted for our mainstream children is an area of concern for the special needs parent.

That night two years ago, I watched other moms and dad‘s enthusiastically buying school t-shirts and sweatshirts for their kids to wear on spirit days & games and I knew that Ronan wouldn’t register the need for them. Ronan is a social outsider since his accident. There would be no sitting with friends at pep rally‘s or attending spirit night with friends or homecoming games etc. Of course we bought the obligatory sweatshirt that he wears on designated days because we get it out for him. I clearly see the difference going through this with my daughter (I’ll take 3 t-shirts for her please… ). She is bursting with pride for her middle school and can’t wait to get to her first football game. I am a parent on both sides, which gives me the perspective to see how much the whole back to school experience, year long parent correspondence, parent meetings etc, are geared toward mainstream children & families.

Now that we are three years out from this, I have learned a few things. I wrote that when I sat in Ronan’s special ed classroom that first time that I had to hold back an internal scream. Of course —screaming was not an option then and it isn't now. Parents of children with disabilities need to take a deep breath, quell our anxiety and face things head-on. There is no time to nurse personal wounds.

**The beginning of the school year marks the beginning of a relentless advocacy that you must have for your child.

After the back-to-school transition in September comes the often enormous presence of the IEP meeting. I have written about this on Ronan‘s team page, and will address it again this year in a more universally relevant way. In Ronan’s case, we have at 2-3 team meetings every year to discuss his challenges and the modifications that need to be put in place. We have learned to ask for things that we need, for instance this year we asked for extra training for him in the digital Canvas program. We are constantly working with his teachers and full-time personal care assistant to develop a consistently effective method for him to find his homework and all of the links that he needs.

But in the beginning we had no idea. We were blessed in his first year of middle school with an amazing case manager who worked tirelessly with us to get the right educational modifications in place for Ronan, but none of us understood all of the many details that would need to be addressed to have his day-to-day go smoothly. I recently talked to another mom whose 7th grade special needs son is experiencing extreme anxiety because he can't open his locker or find his classes...he is late for lunch and classes and dismissal because of this. I was able to advise her to ask for a locker key and give her some strategies for navigation. She should not have to advocate for these things that seem like basic needs to get through the school day, but she does.

Unless you are fortunate enough to have friends that have special needs students who have already transitioned into middle school or high school or even elementary school, we often don’t know what to ask for or what challenges are children will face.

I really looked around me last month to see who the Special Ed parents were in the proverbial “audience” and made an effort to reach out to them. It is important that we support each other as a community. It’s important for those of us who are seasoned in any way to help new parents navigate through this complicated system. Especially with with big transitions like middle school and high school.

We are very blessed to have an excellent school and school district behind us and Ronan and despite that, Keith & I still see the need for us to be constant, relentless advocates. With the brain injury population in particular, there is no one educational model. The needs & deficits of each brain injury child are different and constantly evolving. We often feel like we are the brain injury experts in the room, which can be terrifying considering that our child’s future is in our hands. We need to come to meetings prepared with recommendations from our brain injury therapists, observations and recommendations from our BrainSTEPS case manager and our personal knowledge of Ronan‘s brain and recovery.

I feel fortunate that we have a forum with our foundation to be a voice for the kids & parents in our school systems with brain injury, but their needs to be advocacy and support that is inclusive to all cognitive and physical diversity. There shouldn’t be any parent sitting in the metaphorical back to school audience feeling isolated, alone and afraid. As parents of these amazing, inspirational kids we need to be the voice to speak for ourselves and our children.

For my readers who have special needs students, I hope this blog post resonates with you. We want to hear your experiences and thoughts or ideas about how we can support each other as a community. For our brain injury students & parents, how can we provide more specific support?

For readers with mainstream students, like my other two children, I hope this provides some insight. Maybe at the next back-to-school night or school event, you might look around to find parents that feel that they are on the outside. You can help by making sure that school events that you volunteer for or committees that you sit on are sensitive to the experience of the special-ed parent.

Let’s all work together for inclusiveness and encourage our children to do the same. I promise that Keith & I and all of us connected to Project GreenHeart will be doing our best to give support and raise our voices in advocacy.💚