The Makaton Charity posted this on their Facebook page today and it immediately hit home with me. You see, my son is one of those undiagnosed children. I didn’t even know that there was a charity who support families of children with SWAN (Syndrome Without A Name). My son is 18 now and it may be a bit late but I can totally relate to families who have a child who has had every possible test to try to find out what is wrong and confirm that it isn’t something only to be told, “Sorry, we don’t know what is wrong. He has a global development delay.”
For us, when our son was 5 we were told that he had Cerebral Palsy. Great! We have a diagnosis. Then, less than 2 years later we moved and, consequently, changed paediatricians who said, “No, it isn’t Cerebral Palsy but whatever it is has similarities to Cerebral Palsy.” So, more tests and an MRI. The reason it isn’t Cerebral Palsy? No brain damage on MRI and muscle tone increased too much. The one diagnosis we have is microcephaly which essentially means “small head” and having microcephaly doesn’t necessarily lead to a learning disability or developmental delay so that doesn’t help either.
We are fortunate that our son has had a Statement of Special Educational Needs since he started school and, even more fortunately, got a place in a special needs school without a diagnosis. Unlike some families, we have never felt isolated or felt the need for support groups as, even though my son is most definitely special, I’ve never felt any more overwhelmed or challenged than other members of my family or friends. In fact, sometimes I think I have it easier!
So, here’s to all those families like mine with an undiagnosed syndrome because we definitely are not invisible, there are lots of us out there.
Why not check out some other blogs about SWAN and Undiagnosed Children’s Awareness Day:
Swan UK – Wear Blue! Wear Pink! http://www.undiagnosed.org.uk/archives/4133
Swan UK – Family stories: Undiagnosed Children’s Awareness Day 2013 blog post link up http://www.undiagnosed.org.uk/family-stories-ucad-2013-blog-post-link-up
Just Bring the Chocolate – Family stories: Undiagnosed Children’s Awareness Day 2013 blog post link up http://www.justbringthechocolate.com/family-stories-ucad-blog-post-link-up/
SWAN UK Facebook page https://www.facebook.com/SWANchildrenUK