caring for our son

Replies

By kerry.

Re: caring for our son
Fri 4 Apr 2008 20:41

hi evelyn,
welcome to carers.
you have been caring for a long time!
was your son ever tested when he was older for anything, like genetic conditions?

I have 2 boys who have condition called fragile x syndrome, but this was only discovered in 1969 i think.
makes them autistic like, hyperactive, learning difficulties, speech probs, behaviour, and all sorts.

must be hard for you, do you get any support?

Kerry

By loopy

Re: caring for our son
Fri 4 Apr 2008 21:05

hello evelyn,
we care for our 16 year old daughter. She is severely autistic and has learning difficulties. We also struggle with the everyday problems that she presents (like her enormous temper tantrums!!) but we cope by having a laugh about things! Its really hard at times though and sometimes all i want to do is cry (sometimes i do!!). we have 2 other kids aswell who dont have any problems (unless you can count being stroppy teenagers as a problem which i am damn sure you can.. ) There is a chat room here on a friday night, feel free to drop in.

By evelyn

Re: caring for our son
Sat 5 Apr 2008 13:07

Hello Evelyn here again,thanks for your replies Iwas amazed at how quickly they came.Amendment first hubby says our son is hyper-active not what i said which means he was all over our town like a rash when he was young and mobile.We went to Great Oemond street with him in the sixty's they said he would just be a Peter Pan and never grow up which i suppose has proved true.Its sorting out the autism from parkinsonism that gets complicated for him as well bye for now

By loopy

Re: caring for our son
Sat 5 Apr 2008 13:18

although its very hard work bringing up a child with such difficulties its also very rewarding i think. I think in a way that it is wonderful that they are like 'peter pan' but also scary at the same time. Wonderful because they are still so child like but scary because they dont have any concept of this big bad dangerous world that we live in.

By lizzie_T

Re: caring for our son
Sun 6 Apr 2008 22:23

What do they mean by Parkinsonism? There are conditions they know nothing about which they lump under that heading. The best people to approach would be the Parkinson Society. They do charge for membership but you may benefit. There are some very unusual things lumped under the heading, but there should be a Parkinson's nurse at your local hospital, and certainly you can get info from the society. Try them and see. I do sympathise with you. Most people say goodbye to their children when they start a life elsewhere, but your care is forever, and that is hard. I care for my elderly husband who has a ''parkinsonsism?'' type problem. I honestly could not imagine having to still care for my children now, who are in their forties. You have my heartfelt prayers for survival.