Here’s what happens when you persevere, keep searching, keep pushing: You find the right place. You find the right people. You find answers. Sometimes it takes YEARS, but you do find answers when you don’t give up.
You know what else? There is a place for everyone in this world. It doesn’t matter if you have a disability or not, there is a place for every person to fit in, feel happy and comfortable, learn, and grow. Sometimes it takes years to find that fit, but when you do, it’s magic.
I’m hoping we’ve found that for our boy. We started touring therapeutic day schools last week. My boy and I toured two schools, and we have a third one in the upcoming weeks. What I realized when I was thrown into this new experience is that there wouldn’t be a wrong decision. No matter which therapeutic school we picked for our boy, the people there would understand him in a way no one else has, ever. It was just a matter of picking the school that he felt the best in.
During the second school tour, I saw my boy blossom. He asked thoughtful, smart questions. He talked with the director. He lit up when he heard about all the services this school has to help kids like him feel safe, calm and comfortable. He even let a little of his goofy side show.
My boy asked the director if they had a discipline system like at his old school. She said no, they don’t have anything like that. I told my son that he had frequently felt like he was in trouble at his old school because his brain works differently than most kids. For many kids, it’s easy for them to concentrate, learn, follow directions. I said that this school was made just for kids like him, and he won’t get in trouble here for the way his brain works or for having anxiety.
It sort of felt too good to be true. My boy turned to me and, in front of the director, exclaimed, “This is my favorite school so far!” I grinned and said, mine too.
The schools we toured have figured out that in order to engage kids with extreme anxiety, they need to make the school experience as enjoyable as possible. The little things make the biggest impact. For instance, at the school we picked, they have a “taco swing.” My boy loves a good taco swing, that squeezes you as you rock gently. My boy has access to this swing any time he needs it. The director keeps EVERY color of Theraputty in her desk. Every color. For my boy, putty = Heaven. The school has a microwave. My boy can bring soup for lunch and warm it up. At his old school, he rarely ate anything for lunch because he has trouble finding food that appeals to him. Hot lunch didn’t work, cold lunch from home didn’t sound good. Something as simple as having access to a microwave makes a huge difference in a boy’s day.
The school is very small- 26 kids in grades 6 through 12. There are no bells to announce the end of a period. There are no crowds. Most of the students work from home, virtually, on their computers. My boy will have that opportunity also. If he feels too anxious to come to school, he can do his lessons virtually. Our hope is that he can get his body in the school building as many days as possible, because he is a social guy and needs people.
The school has every kind of wiggly chair you can imagine. They have stand up desks. They take movement breaks as needed. They have a point system so my boy can earn treats. They do field trips. They are fun and warm and nurturing, just what my boy needs. My boy needs a little extra TLC, a little warm and fuzzy in his life, and this school does that.
Today was my boy’s first full day of school. He has modified hours because getting up early causes anxiety. So we drove the 45 minutes to get my boy to school by 9:30. He had extreme anxiety, even though yesterday when we came for an hour to sign papers and get his Chromebook, he felt calm and positive. Today he didn’t want to leave the house. He didn’t want to get out of the car at school. He didn’t want to go in the building. He didn’t want to talk to the teachers. He shut down and whimpered repeatedly that he wanted to go home.
But then, the director brought out the Theraputty. She brought one color, and challenged my boy to get it out of the tub, because it’s very stiff. Bam, he was engaged. His smile broke through the clouds of anxiety. He pulled that putty and laughed with the team about how hard it was to get it out of the tub. He asked if he could see the next two colors of putty that are even more stiff, so the director fetched the tubs for my boy. I had stayed for about 20 minutes by that point, and could see that my boy was warming up. So I leaned over, told him I was going to run errands for a little while, then I’d come back and pick him up. He pretty much ignored me, smiled, and kept laughing about the putty.
Bam. They got him.
I remember the IEP meeting last year when we wrote into the plan that my boy should have access to a stand up desk, because when he can move he concentrates better. It wasn’t a big deal, and the teachers were fully on board with that, but they had to think about how that would look in their classroom. They had to do something new to fit my boy’s needs. It’s amazing to know that he is now in a place where he IS the “normal.” Every kid in this school has access to whatever they need. Theraputty? Done. Time with the school pet (an adorable gecko)? Done. Stand up desks? Wiggly chairs? Taco swings? Done. Photography class? They’ll make that work. Art lover? Three different kinds of artsy materials were immediately placed in front of my boy this morning when he was feeling The Worries.
My boy’s teacher just texted me that everything is going well. My boy completed one assignment, helped set up for PE, and is doing well.
What?!? On so many levels— what?!? So first of all, the teacher TEXTED me! She knew I would feel anxiety myself about today, and she put my worries to rest. And second, I am so happy that my boy is doing ok. He is making it work today. He’s conquering his fears about a totally new setting. I’m so proud of him.
My dream has been to find each of my kids a place where they fit. Usually this seems like a task with no end, like I’ll never get it figured out for them. Like I can’t help them get rid of their anxiety and chronic illnesses. Like I don’t know what path to take, like we’ve tried everything, like I don’t know what else to do to help them.
But I think I’ve found the place that will help at least one of my kids. I think I’ve found an answer for at least one of them. It’s not going to be perfect. It’s still messy, stressful. We have a long path ahead of us, and I’m certain there will be bumps. But to know that schools exist that perfectly fit my sweet boy, that is a beautiful realization.
Last week, one of my boy’s friends texted him and asked why he isn’t at school. My boy didn’t know how to respond. So this week, when we knew what new school my boy would be going to, I sat down with my boy and we wrote a letter to his friends. We told them that my boy can’t go to his old school because it is just a little too overwhelming, but that we’re still in the same house and he still wants to be friends, hang out on weekends, get together for birthdays. As we put the letters in the mailbox, and as I drove to our old school to turn in my boy’s iPad and retrieve his Epi Pens, my heart felt heavy. There have been so many emotions with all this. It has been so hard. Sometimes I wish life was as easy for our family as it looks for so many others. I wish I could take for granted every morning when my kids run to the bus stop. I wish that was just normal. I wish I didn’t feel envious of all the Mama’s who toss a, “Have a great day!” Over their shoulders as the front door slams and their child makes his way out to the world without a struggle.
The past month and a half has seemed like a dark, lonely tunnel that we’ll never see the end of. It has been a rotten, miserable, torturous time. After seeing a glimpse of light at the end of that long darkness, I’m almost afraid to hope that the light might stay. So many many times, I think we’re at the end of a darkness only to be suffocated by it, blindsided by it, again. But I’m either resilient or just stupid, because I continue to hang on to hope. I am choosing to trust this light, this new school, and hope that it helps my boy. I try to focus on the fact that my children are unique and need special things, and now I’ve found a special place for my body that fits his needs.
If you struggle long enough, search hard enough, it is possible to find what you’re looking for. Never give up. There is light at the end of the darkness. My boy is proof of that.
