My 5 year old child Jeremy was diagnosed with Sensory Integration Disorder this year. Learning to deal with a child with SID has been a challenge. Even more challenging has been teaching his teachers how to work with Jeremy and getting us both to the point where we were bound and determined to help this child who was clearly different. It has been somewhat of a struggle at times, but over the months we've developed into a team. One who works with Jeremy during the day, and me, the mom who parents him in the afternoons, evenings and on the weekends. Now, we share our discoveries with each other. But it wasn't always that way.
We discovered that he might have this disorder one night last summer while going out with some friends to dinner. The lady we dined with is a children's occupational therapist and listened to me and my husband discuss our child and how challenging he is.
She listened intently and didn't make a diagnosis but encouraged us to buy the book "The Out of Sync Child". Even though my husband was clearly skeptical, he went home that night and bought the book on line.
Our lives have been different ever since.
We started reading about SID and realized that we weren't alone. There are literally thousands of other parents who were also suffering without the knowledge or the support like we were. We knew we had a child who was challenging. We just didn't know that it wasn't a personality problem. What we learned, was that it was a difference in the way his brain operated.
There was about a 6 week gap in between the time where we self diagnosed Jeremy because of the book and getting the real evaluation. I would have had him diagnosed the next day but there are so few resources and we had to wait until an opening occurred and we could get into see the Occupational Therapists. During that time, Jeremy was getting in trouble at school every day and I was receiving bad notes home regarding Jeremy.
The notes mostly were about his lack of attention, focus and his constant talking. He was punished daily because he couldn't finish his work on time and was forced to sit out for 10 minutes during the 15-20 minute recess. Many days he was taken out of recess for the whole time and forced to sit on the sidelines while the other kids played or had to sit at a table to finish his work.
Other punishments have been that they took away his crayons for months on end because he broke 2 crayons. He's been sent to the principal's office several times for acting up and many days Jeremy was physically restrained when he had complete melt downs when either Mommy or Daddy left him behind.
Over the past several months we've gotten the diagnosis and have entered occupational therapy once a week. We've noticed remarkable changes in our son, but still know we have a long way to go. One of the hardest things is to know whether the problems are because of discipline, or SID. After reading, speaking with other parents and trying different therapies, I've gotten better at solving the problems.
When dealing with the teachers, I have never taken a "me versus you" approach. I have written notes to the teacher several times a week explaining what I do at home to correct a problem. I threw a complete and nasty fit I must admit when I discovered quite by accident that Jeremy was taken out of recess every day for bad behavior. Activity, running and jumping is the ONE thing that should NEVER be taken away from a kid with SIDS. It's a complete set up for failure. I marched right to the principals office and got a meeting.
Since then, we've scheduled regular meetings to discuss Jeremy and his progress. Our principal saw how completely frustrated, fried and upset I was over the whole thing. She had great wisdom when she told me, "Mary, don't do anything rash. It's going to take some time but lets keep working on it.". Somehow, I got off my personal high horse and listened to her encouraging words. I also opened up and started telling everyone who would listen that my kid had SID. The mothers were sympathetic and started introducing me to OTHER moms who had kids with the same problem.
The frustrating thing is that the other mom's kids didn't have the exact same issues as my kid, yet they were all diagnosed with the same problem. That is when educating yourself is so important. There are so many different characteristics of SID and it's helpful to know that your child's brain is different. And it's helpful for you to help remind the teacher of that as well.
Because I've been open about our struggles, our teacher has been so willing to learn about it too. She is now working with the counselor to arrange some different things in the classroom that will help all of the kids, not just Jeremy. Our counselor has grabbed the bull by the horns and is pushing the teachers to embrace these differences and she's becoming a resource for other counselors at other schools. She's recommending on line resources to parents and has just been a God send to so many of the parents who suffer daily with this issue.
I'd love to say that our issues with the teachers are completely resolved. But, as issues arise, we have to look patiently for a solution to the problem. As recently as 2 weeks ago I went to the principal and showed her Jeremy's journal that they work on every day. He used to be clearly one of the most gifted artists in the class and now is only allowed to work with pencils and is scribbling in frustration. One look at those journals by the counselor and she had him using crayons the next week. I had mentioned this to the teacher in writing a few times via my notes and still she didn't change her mind. It did take me going to the counselor to get a change. Yet, we maintained our solidly good relationship. I know she understands that I'm trying to do the best for my child.
The relationship between the teacher and the parent can absolutely make it or break it for the child. If the teacher hates the parent, then how effective will he really be in dealing with the kid if the child is a complete challenge to everyone? I wish there was a program in every school to help the parents know how to deal with the counselors. It does take patience and wisdom and the knowledge that it's going to be bad for a while, until everyone gets educated and finds a way to work together.
Supporting each other is the first step. I'm now hearing from other mom's who are out there struggling all alone. I encourage them to speak up in their communities and support the other moms, to get educated, to educate their families and to educate their teachers.
One day, Sensory Integration Disorder won't be such a mystery. Every class will have the ability to integrate these challenging children and will be set up with quiet corners, have balls for the kids to sit on, bean bags to lay on during reading time, heavy weights to sit on their laps, gum will be allowed to be chewed for the kids who need something to help them keep quiet, and the other children will understand and accept the differences. Once we educate our own kids how to manage their brains, their bodies and teach them all how they can learn best, then we'll be at a much better place in education.
We have to dream before it can happen. Then, we can get to work together to make it happen!
Mary Gardner, The Charisma Coach! is an executive communications consultant and coach. She's appeared on many national TV shows and travels the country as a trend reporter on local TV stations around the country. Mary is married and has a son with Sensory Integration Disorder and she welcomes other parents to write to her about their children. Her website is http://www.marygardner.com