My triplets were getting to be of school age at that ‘ripe old age’ of three. The time when children first leave the proverbial nest and safety of home and snacks and naps and familiar toys and are supposed to enter preschool. In planning for it, we had their very first IEP meeting with the Early Childhood team. This is the day that I would hear most moms DREAD. The IEP always seemed like the very worst day, the scariest day, the day that you had to fight like you hadn’t fought before. You weren’t just a mommy, you now needed to be an advocate – the assumed dynamic of the one meeting where the educational staff wanted to provide the least, yet you wanted to achieve the most for your child.
At our first IEP meeting, we took Benjamin with us because of course, I was the only one I trusted to care for him. He was fragile and complicated, and I was protective. And the team didn’t seem to mind that Benjamin was there. He just sat in my lap and on my knee up at the table while we talked about him. He belonged there.
My fear. My anxiety. It was all taken away within the first few moments. They had already met Benjamin and reviewed his files from Early Intervention (he had been in various therapies since he was 6 months old). The team was warm, welcoming and extremely nice – more comfortable than I thought it might be. Not at all what I was expecting based on my misinformed notion. And the best part ... they told us pretty quickly they wanted to put Benjamin in a blended classroom where he could interact with typical peers.
He could make friends and play with others, and they felt he would only grow from getting that exposure and interaction so young. PLUS, it would benefit the other young kids as well – they would be exposed to a child with a visible disability.
It turns out his preschool teacher was at that first meeting. There were so many people at the table, I wasn’t sure who they all were or what purpose they served. But at the end, she says she was sitting there and “couldn’t wait to get her hands on him”. They brought in a beanbag chair and positioned him and interacted with him and accepted him.
I cried. I was happy and relieved. And somewhat ashamed.
The part I’m most ashamed about is that I ‘assumed’ they would put my Benjamin in the Life Skills class. You know, the one where they put the most severe kids? The kids that are in wheelchairs and have communication devices. The kids that need assistance for everything. The kids that most likely will never live independently. At that moment, they knew better than his own mother what he was capable of. I felt I had failed him as a mommy and an advocate.
That one year he was in preschool, he grew, he developed, he learned language and shapes and colors and letters. He could answer questions with his communication tools and make choices. It was evident he was learning and he was capable. He proved to me exactly what he could do.
Benjamin isn’t the only one that grew from the IEP and Early Childhood process. I learned so much as well. I learned to never underestimate the power of the spirit and the mind. I learned to trust in others, even if you have to let go just a bit. I learned that others will see past a disability and believe in the person if only given a chance.
My Benjamin didn’t have the opportunity to continue to grow and develop and learn as much as his brother and sister. And that’s okay. I’m so thankful we had the time we had. I’ve accepted that he served his time here and I know he fulfilled his purpose.
Out of our loss and grief, we are able to support other families with kids like our Ben. We proudly work through Ben Smiles Memorial Foundation, giving toys and devices and spreading smiles in his name. And I’m excited about what the future holds for the Ben’s Adventures book series, adventure books about a little boy in a wheelchair. Ben shows us that ALL kids can play and dream, despite any disability. And my Ben will continue to shine brightly even though he’s gone.
I’m happy I’m still able to share him with others – his smile, his beauty, his spirit and his hope.
I have chosen to dedicate this next book to the Early Childhood educators. They love our kids, accept them as they are, want them to succeed and do their best for them every day all year long.
To find out more about Ben’s Adventures, click here to visit the Kickstarter campaign page.