Hi lillym-
One of my daughters is developmentally disabled. She was a preemie with congenital heart defects/lung issues. She spent first three years of her life in hospital.
Anyway, against ALL odds, she is alive and has shed all of the 'technology' that kept her alive those first years.
She is 15...yet remains the size (and developmental age) of a 5 year old. Puberty has not 'hit' her yet. I worry about menstruation...she has a fear of blood...and although I was preparing her for this some years ago (when her twin got her period)...shannon never got hers.
I have considered the pill for her to 'lighten' her flow...if and when she menstruates. ANY SURGERY for her is risky because of her heart issues...so I will have to weigh this issue very carefully. It is strange and surreal though...because I feel so lucky...and blessed...to have had her here this many years that I would be challenged to even consider these things for her.
I will 'apply' for guardianship in the next years...and I do not imagine she will ever be in a group home setting. She will live with me...and if something happens to me...she will live (probably on a rotating schedule) with her sibs. Truth be told...they will FIGHT to have her with them...lol...(hence a rotating schedule of some kind)
I know some parents with 'higher functioning' kids have opted for a surgical route.
I also know of one 15 year old, in the self contained SPED class...now in foster care, who has a baby 7 months old.
It is a hard decision...and one that each family with a 'special' kiddo comes to terms with in their own way.
Best Luck!
michele/cat