Someone has posted in a Williams Group about just finding out about their child’s diagnosis and wanted some suggestions on what to do ‘next’. I typed out this list and thought it would be good to share on this blog.
1) Join the WSF. Its about £10 minimum but it will be the best investment you can make in your child.
2) Write everything down – Questions to Docs, answers back, queries you have, things you notice, feeling you feel, everything. Have those notes will help you. (Phones have note apps – use that as a start).
3) Try not to panic. Its really hard to not panic but do try.
4) Talk to your friends and family. You don’t have to go through this alone.
5) Other Williams’ parents are really helpful and friendly (we’ve found!). There is always someone either just ahead of you and can offer advice and then you’ll get to the point where you feel you can offer advice to others.
6) Understand Williams is a spectrum and what that means.
7) Take all the help offered
8) Demand all the help available (from the councils to the NHS)
9) Talk to your significant other (if you have one) as it is easy to feel like you are dealing with this alone.
10) Try to focus on the here and now. The future isn’t known but today, and this moment, you’ve got a lovely child who thinks the world of you. Let future you worry about the future and let today you enjoy the present.
I struggle with 10 everyday. But I do try to do it.
Oh…. and actually, trust your gut. I can’t prove why, but always trust your gut if something doesn’t feel right.