General Chat

As a father of a severly disabled child i feel i need to point out to people who are easy to critisise for relationship of the parents to split up When my son was born he was obviously not right and the doctors knew that something was wrong Right from that moment my relationship changed with my wife At 3 months old he under went open heart surgery and did actually stop breathing 3 times only to be broought back by the doctors treating him but we was told If he was to stop breathing again it would cause ireversable brain damage the powers up above decided he should live because he recovered but was still not right has the brain damage had already been cause beleive me our world fell apart there we was awith a son at had a uncertain future and we had to come to terms with that we went through stages of blaming each other and our other 2 children were caught in the middle although we knew this was upsetting the kids there was always a sense of injustice as to why we should be the ones at suffer the rows continued eventually it led to us seperating still not being able to see past our own inabilitys to see what was wrong councelling didnt help and we decided to go our differant ways I gave up work to care 24/7 for my son while my wife took the other two children and moved on with her life although continueing to have contact with both our son and my other children it seam to work fine we alrealdy knew that my son had been brain damaged and would need 24hour care and i thought i would be better to give him that care something that i have now done for 11 years we was told he would never sit up he would be wheelchair bound for the rest of his life nobody who has never had a disabled child will EVER UNDERSTAND what you go through as parents The loss of not being able to do normal things we all take for granted with opur kids Like Kicking a football So before anyone critises a parent of a disabled child for losing it in relationships PUT YOURSELF in our position Could you cope if it was you ....On a happier note My son is now 12 and in the last 9 months throughs 3 years of hard contanst motivation he has began to walk a few steps yes he is still wheel chair bound and fed by machine overnight but when he smiles at you and puts his arms out for a cuddle All the stress of caring for him go`s out the window ...Theres no books on being a good parent Couples with normal children divorce so please remember the person who has to care for 24/7 sorry for the loong winded reply just wanted to get it off my chest ....WE ARE ONLY HUMAN not ROBOTS --------------------------------------------------------------------------------

I've often asked myself whether I would have been able to cope with a disabled child, and the answer is no I don't think I would.....either with or wothout a partner. So well done to you Stephen

just wanted to say what a lovely caring person you are xx

Stephen how lucky your son is to have a lovely caring Dad like you. God Bless you June xx.

you spot on there Stephen. I totally admire you for what you have done with your son. After all he's your son at the end of the day he's part of you, I know I'd have done the same. love catherine xx

Stephen hats off to you you must be very proud of your son, and you are proof that parents even single parents can look after their children whatever there problems, but then not everyone has the ability to do it and shouldn't be judged if they can't cope with it, its hard enough looking after able bodied children and if you add the disabilities many parents would fall at the first hurdle. I had a friend whos second son is handicapped and know how hard things can get just the simple task of going out is a major job. Well done to you.

Well said Stephen. I don't have disabled children, but my younger brother has Angelmans syndrome, not to different from cerebral palsy, and still needs care 24/7. He is 29 now. I know what my Dad and stepmum went through, and although they managed to stay together, it wasn't easy working through it all. I too notice how quick people are to criticise when one partner cracks and a relationship splits. As you said, parents are only human, not robots.

If all the people in the world had a pinch of your careing and consideration, Compassion for others what a nice place it would be. You are a truely outstanding person and someone any child would be proud to call dad. Don't forget that. God bless sweetheart to you and your family sweetheart. All the best Bubbles

Hi also like your self i have a severly disabled daughter who is nearly 14. My husband left me when she was 2 and he has chosen not to have any contact with her so ever. I am in contact with nanny and his sister though. The days are long sometimes but the nights are even worse. I have since remarried and have a son of 7. The problems of family life are there all the time. Not enough time to do any family things and spend quality time with my son. We are now in a position called transition where we have to make a decision of what to do with Aimee when she leaves school in 4 to 5 years time!! It seems we are being frowned upon as we have decided that it would be better for everybody if she could go into full time care and then I can start to have a life after what would be 19 years of caring. This i must say has been frowned upon from family, friends etc so i feel a deep burden to keep her. Stephen i hold my hat up to you most men walk away and leave us to it. If you need to let off steam at any time pm me. Shirley

Shirley Like i say nobody knows what its like unless you go through it yourself Thank you for the offer of letting of steam but i am really quite a clam anc collective person what winds me up is People who know everything but dont know nothing i am sure you have comew accross them yourself As regards to the leaving school and full time care i am also faced with that and also face problems from members of the family ..my answer is where are they to help when you need it my only respite is 4 hours a Week when i get a local crossroads carer come in as regards things like having holidays or anything like that its a no no .but these are the sort of things we need to have a break away from the dailey routine .like i say i just wish people would think sometimes before they spoke .. Also like to thank everyone who responded to this with your kind comments i didnt post this to get them but its always nice to feel appreciated

You must be doing a great job, Steven, you should be very proud of yourself & your son. You & your wife did what you thought was the right thing for you both. I think that all marriages go through testing times & when there is a disabled child it puts a lot of extra strain on that relationship. I have been in childcare for nearly 40yrs, during that time I have noticed that very strong couples have split after having a disabled child.( even if that child is put into care) There are various reasons for this breakdown of these relationships, couples blame each other or doctors, it is human nature to want someone to blame. Parents are under a lot of stress & tired, because that child needs an extra helping of time. When there are other children involved, it must be very hard to give them the attention they need; there are not enough hours in a day. The news story about the child, who was the subject of a court case, is made more tragic by the fact that doctors felt that the child’s quality of life was never going to improve. It is very rare that the medical profession decide against resuscitation. Personally, I do not think that couple realized how hard it was going to be caring & watching her every day. Like most parents, they already loved that child & the thought of loosing her was too much to bear.

Stephen and Shirley, you both sound very caring courageous people who have done all you can for the good of your handicapped youngsters and whatever you decide in the future, I am sure it will be the right thing for your children and for the rest of the family too. You are entitled to a life too, and I am sure that putting your children in care as they get older and need more from life, will only enhance their lives. They will have more stimulation from being with others like themselves and with carers who are paid to look after them, and it will not be as if you are cutting off from them, you are just widening their view of life, as it would be widened if they were able to do the things able bodied youngsters do. Do not feel guilty, you deserve a break and I wish there were more things like Crossroads to give you more respite care. Maybe you could find respite places in care homes or hospice type places now, so you get a break and they learn to adapt to new conditions gradually. I wish you all the luck in the world. Liz

Stephen, Very well said!!! having a disabled daughter who needs 24/7 care I know the effect it has on your life, marriage,sibling, family and friends. I am what I consider to be one of the lucky few, and have the support of my husband. However I know so many families who have been torn apart due to the stress of raising a disabled child. Please dont get me wrong I myself have had a breakdown and very nearly lost my marriage. No one unless you are in this position can begin to understand what it is like.I admire you for your speaking out, It takes a very strong person to take on the responsibility of raising such a child alone. But also a very strong person to admit they can no longer cope, and have to let go.

What a caring and loving dad you are. God bless you and your son. Mary in Spain

Stephen bless you and all carers like you I have seen my Bil and family cope with a disable child for 32 yrs as they are now in there 70s a decision had to be made for her future it was decided to look for a care home and get her settled in just in case the worst happened to one of them they had no help in the early years and still have her home at weekends she is wheel chair bound and has to be lifted every where such hard work that is unseen by most people so once again bless you and take care xxxHowie

My heart goes out to all you special people having special needs children. It can't be easy like you say it is 24/7. My friend has a special needs child and having seen all the hard work and heartache I really have nothing but admiration for them. What hits me about it if our family has a bad day I know the next day will be better. You don't have that because you know you are going to go through the same things and challenges each day. There is never a day off for you. I hope people realise just how special you all are. xx

Stephen, you one in a billion! All parents are stars but when you have a child who needs extra time and attention for the things most parents take for granted, it makes you even more special. I've worked on childrens wards and the number of people that will critise families for leaving their child alone on the wards is amasing. The majority of the children that are left, partically over night, either have disabilities, have long term illness or have siblings with one of these. The staff on the wards I worked on use to me mindful that having a child was stressful enough and would suggest to all parents to take a break but they would almost take parents who had children with longterm illness or disabilities to the parents room and make them a drink whilst promising to stay with the child and come back to get the parent if anything changes or if the child wakes up.

Your son is truly blessed to have such a special father like you.

I have two brain damaged children (well they are 15 and 17 now). Their dad had his own problems and I left him. I have brought them up on my own (the main help that I have had is from my now 13 year old daughter).I don't find the boys difficult BUT I do find other peoples attitudes difficult to cope with. When my eldest was 5 I was told that he would never 'do anything'. I ignored the 'experts' and kept going. I have been dragged through the courts and sent on courses and even had my son locked up in a boarding school. Now my son is HAPPY!!! He has a school place and is looking forward to college and there is even a chance that he may get a JOB!!I still have to watch him like a hawk though as he will always do 'odd' things (he managed to blow the mains fuse at 2 am, not sure quite how), though I can now sleep in a bed and not across the front door. The experts wrote him off and every day I am glad that I didn't. My 15 year old sadly became too violent (broke a metal bar over me and tried to strangle me), so he is now in foster care, where it takes 2 or 3 adults to care/control him. Any parent has a very hard job.

When I was pregnant with my second child I was given the news that he could very likely suffer from Downs Syndrome. There was never a doubt in my mind that I would keep him, but I know that my partner was unsure of the strain that it would put on not only our marriage but also our other child. Fortunately for us - that child is now a very full of life 23 month old toddler. Had he been downs im sure that he would still be full of life but would our family have survived - i honestly dont know. To Stephen and all the other parents of disabled children - i salute you and thank god that in this day and age there are people around who still care enough about their children. You hear enough stories about bad parenting - this is a case of very positive parenting and you should all be very proud. Lorraine