Will I ever get over the fact my son is disabled?

[Richard1974]

Hi,

My son is 6 months old and basically spends 99% of the time asleep and is fed through a tube. We haven't had a diagnosis yet, but it is obviously something serious.

As parents we discussed the issue of if the baby had a disablilty during pregnancy will would abort it due to us having 2 children already and the time taken away from them if all our attention was focused on the disabled child.

But now we are here in that situation, and I feel my life is over.
The children do have limited time with us now because of this.
It's been a nightmare already and I'm dreading the coming years as he gets older.
But also I go through periods where I don't want to be seen with him, and resent him. What sort of dad does that make me.

My mood has changed and I'm just feel the life we had will never be as happy as it once was.

Supposed to be going on holiday to Florida next year, and normally would be very excited about it, but I'm actually not looking forward to that either.

Rich.

This is tricky to respond to as a parent with a child with a disability who is now 9, because like my other children, he is my world and I feel my life is much improved with him in it.

Does a baby that spends 99% of his time asleep really take up all of your time, or is it your worry and misery that does this?

A baby when you have two children is tough, regardless. What 'something serious;' is being considered?

I think what you've got here is a grief reaction. Grieving for the life you had and also the life you expected to have with a new baby added to the family.

It's very difficult when you have no diagnosis. Eons ago my first child was born with something affecting his development but no-one managed to diagnose him in his lifetime. He started off seeming to be ok but then missed some milestones and then went sort of backwards. People kept offering up different possibilities, some of which were conditions where he would just regress and lose the few skills he had and either die, or what seemed to me worse, continue to live like a baby but with a body that would grow up. At those times I thought he'd just be better off dead, and sooner rather than later if that's all he had to look forward to. And there was a possibility of the condition being genetic so, even if we felt we could cope with more children, then it might just be too risky to try. It was a horrible time.

In our case he did start to improve a little and most obvious genetic causes were ruled out. He was, in fact, a lovely boy but just when we started to see that he could have a reasonable quality of life he got an overwhelming infection and died. It was devastating. But it would also have been devastating if he'd died when everything seemed at the bleakest too but I can understand why I saw that as possibly the best option at that time.

Six months isn't really very long to come to terms with your situation. If, like me, you're a planner then not being able to have some idea of what the future might hold is a major stress factor. Try not to look too far ahead just yet. Over the years I have stopped trying to be happy but just celebrate any little pockets of happiness as they come along even when they come along at times when all other aspects of my life are dreadful.

I think dads take it worse than mums for some reason, and very often cannot cope with this and divorce. The fact that you are posting here for me indicate that you are about to bounce back. Please hang in there, you need time to grief and make sense of it all. Try to enjoy your other children as much as you can.

I agree this is a grief reaction. I found out my beautiful boy (3) had something akin to ASD about 6 months ago. Obviously nowhere near as life debilitating as being asleep 99% of the time but upsetting nonetheless as the life I had planned for him seemed to have been torn away. I wrote loads of letters to myself talking about how we would both be better off dead (to leave DH and my 2 girls to live without this), how I could just run the car off the road one day with him and me in it and it would be over. He's my life, I love him more than anything. He brings so much joy to all of us, what was I thinking. It just wasn't how I'd planned it going and I was grieving. Very naturally, given the situation you are in, you are grieving too. I agree you shouldn't try to look too far ahead. You need to keep living through it, keep grabbing for happiness where you can etc. I think it makes you a very caring dad/human being who cares deeply about your little boy and your other children but who is naturally and in the best way you know how coming to terms with your life changes. If you didn't care you wouldn't resent him, you'd just leave him to to it. Be kind to yourself and your partner, you are going through more than most people can even imagine.

It's grief.

It's limbo.

You don't have a diagnosis, you can't move forward. You are staring into the unknown. You don't know what us likely to happen or why.

I'm there. We have no diagnosis yet. We have some pieces of a puzzle. We just don't know how they all go together.

Thanks for all the replies.

I do love him but I'm finding it very hard. Especially when we are out, and all I see are other babies the same age....

I have avoided baby groups for months as I cannot face other babies the same age. Is there special needs support in your area (ask HV maybe?)

In truth you never get over it, just as you never get over the death of a loved one. But you do learn to accept you won't get over it and you can have a good life alongside your grief, with respite from the unfairness in little moments.

When you don't know what lies ahead you pour your very worst fears into the void, but little by little as you get information you will form a plan and it will bring meaning and at times joy.

I cannot now imagine a life without my ds. He's more disabled than many, but not as disabled as some, but it isn't always the severity that makes life difficult or easy. It is acceptance, determination, getting on with it, and unfortunately having resources, whether that is money, time, close family, resilience, friends, ability to get best out of professionals etc.

no
you won't ever get over it.
you will grieve and feel hurt and angry.
but one day you will find a new place.
a place that is different . one that you never expected to be, but where your child ad your family will be accepted.
your other children will accept it as the norm and... things will be different.|
but you will have a lot of people in your corner x

I agree with all that has been said about the grieving aspect to this. It's a massive shock to you, and I would think seems particularly bleak and hopeless as you don't yet have a diagnosis. As, in some ways, even though The diagnosis is hard (facing the fact that this is actually reality), it might also help you prepare for what might lie ahead.

My ds has autism, which doesn't really come with a clear pathway for the future but firstly, many other conditions may have much clearer indications of what is likely to be the development pattern. And secondly, those expectations will may well be totally exceeded by your ds in any case

But it is so early on for you and your family. Just take it easy on yourselves. Give yourselves time to just get your head round it and go through whatever emotions you feel atm - they are all normal.

This is grief. I've been through it as will most people on this board. I thought awful things and struggled for a long time to think that our family life could be OK with a disabled child. At times I felt very very distant land alienated from my child, it caused incredible stress for our marriage and I was very low. But I feel I am now starting to come out the other side into a new normal. I don't think you ever fully get over it - I still get upset looking at other children of the same age sometimes as they are light years apart. But I am SO proud of my son and now I can see him for the amazing little person he is. Allow yourself time to come to terms with it all. Nobody signs up for this but it will be ok :)

I think the way you are feeling is very normal in these circumstances. Don't feel bad for feeling that way,

My son has high functioning autism and it sounds like he has less problems than your DS - however. I was really depressed for about a year after he was diagnosed. I'd wake up in the morning and immediately be filled with dread thinking about his future.

I used to feel sad walking by other boys his age who looked to social and thinking how did we end up being the unlucky ones.

I've gradually come to terms with it. I still feel sad occasionally but most of the time we have a happy

It will pass.
You are in the grief stage... for what should have been, and what is not. It is awful.
When my DS2 (fourth and final baby) was 6 months old I begged for him to be adopted, sure my life was over, that I couldn't be the parent he needed...someone who could love the floppy unresponsive, non smiley , non moving child. Luckily no one listened to me.

He's now a young man of nearly 19. Autism, learning disabilities, some physical disabilities. His life isn't like his siblings... he goes to special needs clubs, will always be at home with us. But he is ok. We are OK. He became the hub of the family wheel.. he had the most attention but his siblings thrived. More than thrived.. one is now a doctor, one a learning disability nurse and one a support worker for adults with learning disability.... they became compassionate , fabulous people because of him.

Have I got over it? No. Never. Every so often the UNFAIRNESS of his disability slaps me round the face.. he should be at university, or learning to drive, meeting girls (or boys) being independent. He's not and never will be, and some days that hurts. But it hurts ME not him and not his siblings who love him fiercely.

Adjusting to the new normal takes time.. a lot of time. You don't have to accept it, or be happy about it, but honestly, how you are feeling now is OK..it is normal , not wrong, or shocking. It just IS. And oh so gradually it will pass.

I didn't cope at all well when I found out DS had autism (I knew at 15 months). I had some very dark thoughts, including that I didn't want him any more. I became very severely depressed and I think I wasn't quite right for about a year. The second year I gradually came to terms with it and now two years on I think I have made my peace with it. I will never get over it but I can now accept it and be happy (most of the time). I can't imagine my life without DS now and love him fiercely.

One suggestion - if you are not coping, please consider anti-depressants to get you through this difficult time. They made a world of difference to me.

Thanks for the advice.
I just feel no interest in anything anymore.
The family is suffering by it but I can't stop how I feel. The life I had planned is gone. And I can't get over it.
Yes I feel angry, yes I feel I've been cheated. Yes I feel selfish.

It's exactly how I dreaded it to be.
My partner is holding things together, but only just. But she'll reach a point where she can't deal with me anymore.
I'm not showing our other two children nearly enough attention because of what's happening.
My partner had to give up her full time job because of this as well.

Just a nightmare...

I would second the use of anti depressants. I have never really got over it. I feel sad about our situation quite often, but in many respects you do adjust and I don't feel the same sharp grief that I felt at the time.

I also would recommend anti depressants. Please speak to your gp.
I battled on for too long during the first year of my daughters life. I felt a lot like you describe.
I Should have gone earlier. The gp was amazing - she told me antidepressants would not make me feel on top of the world but would level me out and most importantly give me a thicker skin to help deal with what was next thrown our way.

I was embarrassed to need medication as before my dds birth I was a happy go lucky person. But it was the best thing I did, the gp was right, I had a thicker skin and was able to cope day to day with my fears for dd and carry on with day to day life for the rest of my family.

Please go to the doctor and ask for the anti-depressants. If you are anything like I was at the time you will either (a) think they will not work against the sadness you are feeling or (b) (much worse) not even care if they work or not. Regardless, please just try them. I went from suicidal to really quite happy and taking everything in my stride in just a couple of weeks. I took 10mg of Escitalopram (a relatively low dose) and it really worked. It made me happier and much less anxious.

You owe it to your family (and yourself!) to get yourself some help. This is NOT how you will feel forever, honestly. Life will be different; I'm not going to kid you, in some ways it will be worse but it will also be richer in many ways. And you will probably come out the other side a better, kinder and more compassionate human being (I like to think I have).

I really feel for you - I recognise my old self in your posts. Get yourself help. Things will get better.

Well it's a year on and I haven't changed my outlook. Things aren't great at home. I go through periods of serious depression, It feels like I'm mourning his death everyday.
I love him but also don't like being around him as I get upset seeing him the way he is.

My partner basically looks after him as I'm useless, and she is now feeling the strain.

It's as bad is I envisaged it to be.

Things may never be great! However, you do need to do your fair share of childcare, or your partner may sink into depression!

We all have a steep learning curve; because we have landed in a parallel universe, none of us really knew existed!

Take anti depressants, and get counselling if you can! Counselling worked better for me; because somebody gave me advice on ways of dealing with DC!

Sorry that things have not improved for you OP. Did you consult your GP re the depression?

Op I feel like this right now. And I'm a mum. I look at my baby and feel no connection and feel embarrassed. If anyone talks about fucking Welcome to Holland I'll kill them.

I'm so sorry, OP. Have they managed to find any diagnosis?

I get how you feel Richard . My son is 5 now and although he can walk he is mostly non verbal and it's just so desperately sad . There is plenty to be happy about and he really is a super boy but no I will never get over it , never get over the guilt of what my body did to him( I know it wasn't my fault ) . How is your son now ? Do you Have a diagnosis ? We still don't .