Mums/dads with disabled children

[lou33]

I'm just looking for reassurance really. As some of you may know ds2 is 2 years old and has spastic diplegia cerebral palsy. He can't sit, crawl on all fours, stand or walk. I know he's disabled, and since we found out last july have been coming to terms with it. The problem is we love him so much his disability often becomes invisible to us, and we carry on in our own lovely bubble having fun with him and his sisters and brother. Then every so often we get a piece of news that "reminds" us just how bad his problems are and I am in tears again. For example he has just been indefinitely awarded the highest rate of DLA, and although I am glad I won't be having to reapply, it means he must have quite severe problems. Yesterday we got his disabled badge for our car in the post, and his little picture looking out from it really upset me. These seem to make it so official, and I'm feeling a bit down. Does that make sense? Does anyone else feel like that or am I just being stupid?

Sorry those links don't work. Try here for local w sussex ndsc groups.

And here for east sussex.

Why can't I put 2 links in the same message?

lou- I think it's normal to wonder whether you could have done anything differently. I was talking to my cousin last week saying if I had known then what I know now I wouldn't have vaccinated/used as many antibiotics/steroids etc etc with ds1. She said there' no point even thinking like that (and there isn't).

She also said that everything happens for a reason, and I think that fatalistic view can be healthy. Whilst I hate all that "special children must have extra special parents" crap (pass me a bucket whilst I throw up) I do think having an autistic child has changed me more than anything else I've ever experienced- and for the better. I have a horrible feeling that without ds1's problems I could have drifted into becoming a hideous judgemental middle class mum (you know what I mean). I think having a disabled child shows you that nothing in life is guaranteed, and makes you appreciate everything so much more. It has provided me with a certain balance. I did once say to dh that if we got through it all OK then it would end up being a positive experience. Just got to get through it now.....

Lou33 Thanx for the kind words. I am just like you I will always wonder why and how. I don't dwell on it anymore as life is too short to constantly be banging your brain.I think this as you say is a part of acceptance but I think it is a part of human nature.Us humans need to know the ifs and buts etc. I am glad I found this thread as there are people out there just like us with the same emotions.

I do know what you mean Jimjams, I see your point.

It seems almost ironic though, that I have had 2 children born with disabilities, when I didn't smoke, drink or take drugs, yet during my pregnancies I have met pregnant drug addicts, heavy drinkers and smokers and all their children suffered no effects from this. While I am glad that they were ok, it makes me want to bang my head against the wall sometimes wondering why it happened to me ( I subscribe to your view about special children and special parents Jimjams btw,we do what we have to because we have to like any other mum would) .

Doormat this is a great place for letting everything out isn't it?

wow lou you are the greatest - thanks

My pleasure, hope they are useful.

Lou33 I am with you all the way girl.Great place.Why should we HAVE to accept why our children are born with a disability? Especially when we have looked after ourselves whilst pregnant.We all have our own opinions but you have struck a chord with me.

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Another that again seems appropriate for here!

Deciding to become a parent is like planning for a holiday of a lifetime and therefore for the best time of your life.....Everthing is going to be perfect!!!!

You are going to Paris!!

You have always wanted to go to there.. You will buy the guide books and learn where are the best places to eat, to visit, what to do and what will happen while you're there. Everything is planned, you are prepared and looking forward to the best experience of your life!!....Its going to be the best holiday anyone ever have had!

The big day arrives and off you go to the airport...A few hours later you land and the Pilot announces you are in

Holland!...HOLLAND?????

You shout, you scream, you cry at the unfairness of it all but there is no mistake... You were meant to be in Paris with the Eiffel Tower,The Louvre, The Champs Elysee but you're not.

It takes time....A long time....But eventually one day you wake up and see that Holland has Tulips, Windmills and that through being there you have met some wonderful people.

Its at that point you realise that although you will always regret not having got to Paris, Holland has its fair share of good points and isn't that bad after all!!

Oh I do know what you mean lou and demented. It is unfair. I can see that especially when you have 2 children with disabilities and you did everything "right". I know quite a few people who have children with 2 totally unrelated disabilities and that's always struck me as particularly cruel. In a way though I'm pleased I did everything right (I knew about ds1's pregnancy from about the day my period was due) as it means I don't have anything to beat myself up with.

Oh and when people bang on about special parents and how well I cope blah blah blah - I always feel like syaing "I wasn't aware that I had a choice". THEY don't see me blubbing away at night. I have also noticed that the people who tend to say that are often the one who say the most ignorant and hurtful things as well!

jimjams you are so right. I hate the words "Oh how do you cope?" I find it so patroninising and also comments like "It must be so hard, etc etc" As any woman out there knows WE CAN COPE with everything that is thrown at us. We may have little setbacks and that is a part of life...I heard a saying years ago "There is always someone worse off than yourself" That is the most truthful thing I have ever heard.LOL to you all

Did you see we have a special need section now? I started a thread there too .

The "I don't know how you cope" really gets me too, for some reason. I cope because I have to, and beacuse noone else will. What am I supposed to do? Send him away? My sister was told to put her son in a home when he was born with downs syndrome 14 years ago, and told he wouldn't even be able to sweep the floor. Shows how much they know, the doctors who said that should be ashamed of themselves. Similarly when dd1 was having all her troubles we were told she could be blind, deaf, and basically a vegetable that we shouldn't bother with (11 years ago). She is none of these, but even if she were, I would have still looked after her because she was mine and my children are loved unconditionally. I don't think thats a special trait in parents with disabled children though, it's just what parents do.

exactly lou and demented. I think that some drs etc don't actually realise that we love our disabled children as much as they love their "normal" children. I always say some people see ds1 as being slightly less than human!

It is true demented about there always being someone worse off. I only have to watch childrens hosspital to see that- that's me blubbing in the sofa.

I'm off to look at our new section.