Something that I know I see a great deal on Elizabeth’s IEP are the words:
These words are used to describe the skills and topics that are being focused on. Not quite mastered, not quite done.
Somehow those words have become the ones that are used over and over again.
I used to feel a bit sad or resigned seeing them. Because I know how hard she is working to master skills. So to see those words meant that skill was simply being added to the list of things she couldn't quite yet do.
But over the years, I have come to know that those words and Dyspraxia go hand in hand.
That skills once taught, need the rust kicked off of them if they are not used in a while.
It is really something that will be a part of Elizabeth’s life. Period.
Something else that is always a part of our lives is the need to educate/inform those who will be working with Elizabeth. To help them understand her, her needs and get how she “works”.
I am proud and excited by her success at college last year. She is in a college certificate program for students with special needs. She absolutely loved her first year there and really did amazing.
It was a bit of a learning curve at the start.
Since this was new territory for me, I was unsure of how best to proceed in this advocacy. It got done but maybe not quite as well as years before.
So now that this new school year is upon us.
- To do the advocating.
- To do the educating.
- To do all you need to help everyone understand your child.
So with lessons learned from last year, this year, we did things a little bit differently:
Elizabeth wrote a letter to the coach/buddies (the college students who are with her on campus) to help them hear from her about her disorders and what she needs from them.
I wrote a letter to the buddies to tell about Elizabeth and how her disorders affect her days.
I also gave websites for them to learn more about the disorders as well as our contact information.
Elizabeth and I also provided a communication sheet that is reflective of her age and skills.
Here is an example of the communication sheet we used when Elizabeth was in high school. And here is an example of the communication sheet we use now that Elizabeth is in college.
I share this with you because the new school year is upon us. There will be new teachers and support staff with your child. And in my opinion, it is critical that everyone is on the same page as soon as the year starts.
Then everyone will know how best to support and work with your child… from day one.
I would be happy to share more about our communication letters, please just let me know.
While many things will be new this year, “working on” and advocacy will probably be the constants in your life with your special needs child.
And here we go!
I wish everyone a calm start to the year.
Michele Gianetti is a mom of three, registered nurse, and published author ("I Believe in You," "Emily's Sister"). She writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.