I think about this a great deal. Who does It help if Nate gets a diagnosis. He is already labelled "special needs/ additional needs" " oxygen dependent" "home ventilated" these are ok labels, factual and practical. But my worry has always been that you grow into a label. That expectations of a labelled person change, usually lower and the label becomes an excuse/ cop out for not reacting to problems. Teachers notoriously have low expectations of children who are labelled trouble makers, I try to do the opposite but sometimes they do " live up to their name"
misconceptions are rife, why bother pushing the autistic child who has behaviour issues for example. The "slut" will never escape the stigma and be judged forever. So with these points in mind I sometimes don't mind not having a label/ diagnosis for Nate.
Not having a diagnosis means we live in limbo not knowing what the future holds but it also means that for the present we escape comments like " he will never..." " thats because of..." my worry is he will cease to be an individual and become confined by the walls of the syndrome. Will expectations lower? Will physio be considered pointless? Will opinions change? This is all brought on by the opinions of the drs when he had rsv before Xmas. If he had schinzel- Gideon disease they did not want to take extreme measures to save his life. Then to a lesser degree is what my friend goes through everyday with her gorgeous little boy. She is so incredibly frustrated that no one seems to see past the fact he has downs syndrome.
Professionals use his syndrome as an explanation for absolutely everything. Heaven forbid
anything should be to do with the fact he's a 2 year old mischief maker with his own personality. Or just that he's a child. And we will not mention the person who came over to
her the other day to tell he it was " terrible what had happened to her son" !
This is a rambley rant really. But just think about your expectations sometimes and why you have them. Don't judge what you don't understand and if all else fails keep an open mind
Dominic is undiagnosed, but it doesn't stop the assumptions, always negative, because of the wheelchair. Medics generally see it, decide he's a 'muscle kid' and then everything always get the degenerative/worst case senario tag even if there is no evidence to back it up. I recently wrote my take on being undiagnosed too. You made me think though, perhaps the assumptions will just get worse.
ReplyDeleteOur professionals are the opposite at the mo, very careful what they say, reluctant to make any suggestions for the future. Which, strangely, I find easier to deal with. For now! Your blog is amazing. I totally see where your coming from in the undiagnosed post. Think I'm having a head in the sand period of time! X
ReplyDelete