Now that we had a diagnosis, I felt that I had some back-up to explain to people that my son was not just misbehaving. I also had more tools to help him, and I had the reasoning to explain why these things helped him. I still dealt with looks and comments from other people who didn’t understand or know us, but clearly could not take their eyes off us when my son was having a sensory meltdown.
Some of the hardest moments have been when I was asked what his capacity was, or when he covers his ears because of the loud noise and people look at him like he’s walking around with antennae on his head. I do my best not to let them get to me, but it stings.
Someone close to me, who also has a child with sensory issues, was in a store, when her child had a meltdown. A woman in another aisle commented that her child needed to be smacked. This mother responded, “You don’t smack a disorder out of a child!” I loved her response and when I am in that same situation, I think of her and know that I have something to say if someone dares to do the same to us.
Over time, the meltdowns really do happen less frequently, as we all know his triggers, how to calm him and handle the situation. He also is more capable of regulating himself. In the last year, another therapist suggested that he possibly had PDD-NOS. So, we went for another comprehensive evaluation a few weeks ago, which was done at a medical university with 3 doctors.
They assured me that he did not fall on the autism spectrum, and that we were doing everything possible for him. They confirmed the SID and language delay. He’s made so much progress, that his delay is now considered mild. We have also dealt with insurance coverage that doesn’t cover delays and have a stack of bills to show for it. I have been on the front lines at school, as he doesn’t qualify for services or an IEP.
I am in daily contact with my son’s teacher. The teachers and staff at his school already know me. He just started kindergarten a few months ago, and I am thrilled to share that he is thriving. He has been released from OT and has private speech therapy only once a week. He’s reading on a 1st grade level and making friends. We’ve hit some bumps in the road, and no, we are not “cured.” But, my son has made great progress and we celebrate every bit of it.
When you’re faced with something like this, I’ve learned how important it is to embrace it and understand it. You will have to fight for these disorders to be recognized, covered, acknowledged and understood for years to come, so you better know what you’re talking about.
You are your child’s advocate and you are on the front lines in getting them the help they need.
It will never be easy and it will break your heart, but it will make a huge difference in their life. I have and continue to do everything I can to help my son. We have turned our garage into a therapy room with a swing, trampoline, punching bag, balance board, etc. I make obstacle courses for the kids, and they love them. Little do they know, it is also therapeutic. It helps to keep my son’s body regulated.
There is a brushing protocol that you can follow for sensory kids. We call it a massage, and he loves it. We have a weighted blanket and lap pad for him. We call it the Aunt Janie hugs blanket because she made it for him, and that is exactly what it feels like…a nice big hug from his auntie.
We work with him. We read his body language to know what he needs. There are times when he needs to go out and run around. Other times, he needs to swing to calm down. Holidays are overwhelming for him at times, as everyone gets together. Sometimes, we just have to say “No,” as it will be too much for my son. When I am in that situation, I ask myself what is more important: my son’s well-being or going to our 2nd Christmas party. The answer is obvious.
We always tell our kids that we are a family, and we’re on the same team. We even put our hands together and yell, “Team Ellison!” Okay, so we get a little “Brady Bunch” at times, but it is fun, and we love it. We’re silly together. We love and support each other, no matter what. I hope that is something that they truly understand and pass on to their own children.
Any thoughts that you want to share with Maggie? Please leave them in the comments section below!
This is an original World Moms Post by Maggie Ellison. Maggie can be found crafting with her children at home or playing on the beach with them in the low country of South Carolina, USA.
Photo credit to http://media.photobucket.com/image/hands%20together/Sedna_rlc/Smiley/LoL/hands_together.jpg?o=14. This photo is being used within the terms of photobucket.