An award

 It's been many years since I have written a post. I really don't know what to write anymore. Dan would be 17, a junior in high school. Shelby is nearing the end of 5th grade.  Time marches on.

A couple of months ago, I was nominated for a Founder's Day PTA Award. These awards provide a way for each PTA to recognize a volunteer and a staff person for going above and beyond. Tonight was the award ceremony.

The friend who nominated me gave a short speech. My acceptance speech was probably the longest speech of the night.  I've copied it below - but this isn't what I said. I will update the post with the video once I have it. 

This speech was for Dan. It was for Shelby. It is for every kid who has special needs. Parents - I see you, I support you. 

Speech:

I am honored to receive this honorary membership. My experience was special needs started over 20 years ago with my stepson who was placed in a self-contained middle school special education class. While we knew his academic struggles were behavior related, we were powerless to have him moved into general education classes.

5 years later our son was born with significant Medical issues, and we were dropped back into the world of special needs, this time for medical reasons. Over the course of the five years of our son's life, we learned everything we could about his disease and we educated hundreds of physicians, physician assistants, other medical personnel, as well as providers such as occupational therapy, speech therapy, and physical therapy.

It was during these 5 years I realized that parents did not have information available to them to support their children in the way they needed to be supported. Information about what resources were available, what departments to contact, how to obtain information, how to access services, who to turn to when you needed help, all of these things were passed down family to family. There was no one repository of all this information, there was no checklist of things to do. Social media didn't exist.

So my first goal became to learn everything I could about rare diseases, because that is what we were dealing with with our son. Typical therapies did not help, so we had to advocate well outside the normal box a strategies to access things that we thought would provide him with the best life he could have.

My second goal was to connect families of those special needs together, to provide one place where families could share their knowledge with each other. I started a special needs group for parents back on Meetup, many years ago. It started with parents that I had met, locally, in my attempts to obtain services and supports for our son.

After he died from his rare disease I poured my heart into this group. I moved it from Meetup to Facebook, right now this group has over a thousand members and covers an area from the Canadian border down to about Poughkeepsie from Massachusetts / Vermont to about Johnstown. And every day there are questions about how to obtain evaluations for children, how to obtain an IEP, how to access services, where to access services, what providers are available for certain needs. There are parents who respond with their experiences and it provides a community of support for all of us.

About 5 years ago our daughter entered Charlton Heights. It was quickly evident that she had some special needs as well although not Medical needs. With the assistance of Kathy, who was one of the occupational therapists we had with Dan our son, so we have known her many years, we identified her issues and obtained help to get our daughter the services she needed. Just this week we started planning for her transition to Middle School, and what supports she will have going with her, including what they look like, who will help her, where she can turn for assistance.

When most people think of special needs they think of wheelchairs or canes for those who are blind or seeing eye dogs. More and more special needs are the neuro diverse needs of many of the kids. Autism, adhd, trauma responses, obsessive compulsive disorders, speech issues, anxiety, all of these are special needs, and all of them can affect learning.

If you have kids in the buildings I bet you there is at least one student that sits next to your child who has some sort of special need or accommodation. Sometimes it's as simple as having a map, or labeled folders, or a touch strip on their computer that they can rub. Or they may be allowed to stand up and stretch and move around. Or they see a social worker for help with social skills or they see someone to help them with organization, keeping things organized in there notebooks in their binders in their lockers.

Having a child with special needs is a full-time job on top of the full-time job of being a parent and any sort of employment. It's finding that program that's going to give them a typical experience but that is not with typical kids. It's panicking when the school calls because you don't know if your kids behavior has escalated out of control. It's the small victories, getting a gold star in the agenda for having a good day.

When I saw that the district was starting a SEPTA, I knew I had to be there. I knew I had to advocate for all of the kids that are currently in the district that needs support, and for all the kids to follow. I knew I needed to be there to educate others on what it means to have a child with special needs. I knew I needed to be there to ensure that activities were inclusive of all, it's important of his many different challenges as possible.

You don't know what you don't know, and if you don't have experience with special needs, you don't know the challenges and the joys we have. I am honored to receive this membership and I will continue to advocate for my child and all the other children in the district, to have as normal an experience as possible, to not be identified as someone was special needs, but instead to be identified as a peer, as a friend. Maybe I'll take a moment to recognize the differences we all have, and to think about how we can support each other, as parents as friends as educators. Thank you.

Video:  about 5 minutes https://youtu.be/zJaY0M2SL0s?si=Bvr3ZoNTl_TYDnjg