Blog round-up: Undiagnosed Children's Day
To mark Undiagnosed Children's Day on 29 April, we've gathered some of our bloggers' posts on the heartache, frustration and joy that comes with having a child with an undiagnosed syndrome
The Long Chain looks back over the changes and challenges of the past year, and says things are bigger, better, and bolder:
"The year has seen big rewards: developmental 'inchstones' of the kind that mean so much for children without a prognosis. Benjamin is more interactive. He loves to go to nursery, and he's slowly learning that he now has a little sister."
In a lovely post, Complicated Gorgeousness looks at the problematic language surrounding SEN and describes what life is like with her 'backward lad':
"It is average and normal, annoying and frustrating. It is glorious and magical. It is all the small successful steps, so hard won that they feel like lottery wins. It is living only in the moment."
"You long for that first word, to hear your child's voice and to have a conversation. Not being able to speak isn't the same as not having anything to say after all. You can feel your child's frustration at not being able to tell you what they want or what is wrong. It's heartbreaking."
As Alex Grows Up says what 'undiagnosed' means to her is uncertainty:
"You question yourself. Is it really as bad as everyone seems to think it could be? With no diagnosis perhaps my child will just catch up in time? Does everyone think I'm making this up?"
Are You Kiddingney describes the transition from undiagnosed to diagnosed, and says that a label does not mean the end to uncertainty:
"We still have to say; Yes he has Russell Silver Syndrome. Yes he has Congenital Nephrotic Syndrome. We don't know what it means apart from he's currently writing what it means. And yes, that's equal parts exhilarating and fucking terrifying."
If you've written a post for Undiagnosed Children's Day, do add it to the linky below, and for more information on what the day means, visit SWAN UK's website.