I had the wonderful privilege of attending the WSA Williams Syndrome Convention in Columbus Ohio last week. As the ambassador for Canadian families, I connected with friends made in years’ past and made new friendships with fellow Canadians and with parents and individuals with Williams Syndrome from all over the US.
Attending a big gathering of Williams Syndrome families is exceptionally rewarding. The information presented is invaluable, even if it is a little overwhelming. And the tactics, strategies and trial and error shared by other parents give a real, honest, uplifting and sometimes heartbreaking look into the lives of those who’ve walked this path before you.
Dr. Mervis says it, then she says it and then she says it again. Kids with Williams Syndrome who are taught to read with phonics and only phonics learn to read. Those who aren’t, don’t. I’ll be bringing this up again and again as we enter school this year as reading is big on our list for Alma’s future.
but I’m a bit of a fire cracker, so for me, the important part was know your rights, and use them, not your ragey feelings to make your valid points. As I encounter resistance time and again with my instance on an inclusive education with appropriate support, I am gathering all the laws, policies and support I can to ensure I am seen as someone who is advocated for my daughters rights, not just another “know-it-all-parent trying to bend the system for her special snowflake.”
This is one of the only medical questions I was curious about at the conference. Alma has been well (knock on wood) for the most part, but every now and again I feel like she’s smiling through something. I stopped at the “Doctor is In” table and paid my 5 cents to speak to the wonderful Marty Levinson M.D. about this and he said it was something to be aware of. I’ll keep my guard up and will insist for a little extra investigation next time… so we don’t find ourselves in the ruptured ear drum after infection situation again.
And, ensure the teacher won’t let her ‘cute’ her way out of hard work. I asked Dr. Mervis what I should look for in a teacher and if she had any advice for pre-K teachers of children with Williams Syndrome and that’s what she told me. Our children should be held to high standards. They will respond well to kindness. And they are always trying to duck responsibility and if the teacher lets them, they’ll never achieve their full potential.
This was probably the lesson that has given me the most to think about. While I have a few thoughts that I bring up time and again, I haven’t gone through the process of discussing Alma’s future with my husband and writing down our vision for her in the next few years, for the rest of her school years and for her adult life. As part of the discussion about this vision during an advocacy session, there was some great advice about using it in meetings like IEP meetings to gauge whether the suggestions made by committee were pushing enough. The suggested line was “how are we going to achieve our families vision for our child’s future if she doesn’t have access to _________?” Again, it takes the onus off the ragey parent and ensures the conversation stays centred around meeting and exceeding potential. Love it.
There is also a robust breakfast and a family friendly dinner. These three drinks come in handy after you spend 8 hours concentrating on all the ways you can help your child (and all the other children) reach full potential. You may want to consider staying at one the next time you travel with children.
I look forward to welcoming families from all over North America at the Canadian Association for Williams Syndrome National Conference in Toronto next summer. Although I had to sit out the last 2 sessions due to information overload, I am already filled with questions and am eager to listen and learn from Williams Syndrome experts from all over Canada and the US – parents and professionals alike.