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?

Lou33 no you are not being stupid and I know what you mean when you say about his little picture-I felt the same about dd's picture for the same disabled badge but I'm still waiting for the said document to arrive.I also know what you mean about little reminders but what I try and focus on is all the positives in life our "special children" bring us, hope you get some support as I know I couldn't cope without dh (my work siuation is intolerable but I am needed to work, luckily only p/t)as we have no immediate family near us.I don't know of any other practical advice I can offer but I can offer a cyber ear to listen if that's any good??
Take care

Lou - I'm so sorry you're feeling like this but i totally understand it. You've been such an inspiration to me , and so helpful with all your knowledge , that I am truly grateful. Your little ones are so lucky to have a mummy like you - but I know that doesn't help YOU really does it. I'm going to be away now for a couple of weeks, but take care of yourself.

By the way , when my ds was granted dla for 4 yrs - i was distraught at him being 'officially' labelled as disabled. We recently applied for the blue badge , but they lost the paperwork - same old, same old.. ??!!

Anyway, spoil yourself if you can , you are allowed to cry you know, talk soon. MABS XXX

Thanks Chatee and Mabs, it's good for me to hear others understand.

Our son brings tremendous happiness and joy to our lives, and I cannot imagine life without him for one second, but sometimes it's as though I am looking at him through another set of eyes, and it makes me so sad. I guess we have just had a lot of reaffirmations of his disability recently , and it brings his problems (rather than him as a person) to the forefront.

Like I said we had the DLA announcement, then the blue badge. Last week his physio said she doubts he will be walking independently by this time next year (when he is supposed to start nursery), so he will probably need a walking frame, but that is assuming he can get his standing balance by then. He can't be dragging himself along the ground surrounded by excited children it would be dangerous. Then that throws up the fact that using a frame could reduce the strength in his legs, because the weight is distributed mainly through the arms, and in turn could end up hindering his future ability to walk.

Today his physio produced a pushalong toy horse for him to sit on, to practice his sitting balance. It's really nice and he loves it, but he looks so weak on it, with legs like Kermit the Frog, just hanging there. It brought more tears to my eyes, as much to do with the fact he was so proud to be on it. Unfortunately he was still slipping off sideways even though it has a special wedging pad to supposedly keep him upright, and I just stood there and thought, this is all a bit too much, why can't we fnd anything he can just have fun on, without having to be constantly holding him/rearranging him etc.

Mabs, I am very flattered you view me in that way! I can't say I see myself like that though, but if I have helped you in even the smallest way then I'm glad.Have a good time away.

Chatee I am in a similar situation really. I do have a sister nearby, but she has 4 children too, so her time is as full as mine. She does have my oldest 2 over for sleepovers from time to time though. In terms of other family support we have none, and no friends locally as we have only been in the area a few months. For services for ds though we have excellent facilities, so at least we aren't fighting battles on that front. Thanks for your offer of an ear I do appreciate it.

Sorry for the ramble !

Lou33- I don't have a disabled child but I work with families that do and I know that this comes up a lot for them. Adjusting emotionally to your child's disability is a really long-term, difficult process, especially when you just don't know what progress he will make and in what sort of timescale. Lots of sympathy and love to you and your family, especially ds. I do echo MABS's thought that you are an inspiration, (as, incidentally, is she and many of the other mums of disabled children who post on here) and I have sometimes recommended this site specifically to parents of disabled children on the basis that you and others are so chock full of brilliant advice and support. xxxxxxxxxxxxxxxxxxxxxx

Makes sense absolutely.
You should see me when I spot a three year old boy paying football with Daddy on the moors. That's me blubbing my way home.

Often it can be other people's reactions as well. For example when he starts screaming about something I don't really notice- that's just his way of communicating as he can't speak- so we just resond appropriately. If we have friends staying they can sometimes act really shocked though and then that reminds me and I feel quite cross with them!

Just to add something I remembered last night. I found a website with useful info as to how they differentiate between certain disabilities etc and I feel this will help you to understand why your ds has been given higher rate indefinetly(I am no good at computers yet so can't attatch the website hear but have a look under
DLAAB Disability Living Allowace and Childhood Mobility
This time last year my dd would not put her feet on the ground, had not started receiving any intervention ie: physio but could just about sit unaided.Nearly one year and a lot of hard work down the line she can walk with the use of a walking frame-maybe not the best solution long term but in the short term it has improved her way of life greatly and her leg muscles are getting stronger by the week. Have you got a "penguin frame" that ds can be strapped into that makes him stand up and put the weight on his feet?? it looks an awful contraption but dd loved hers as it put her on the same height level as her friends and they all used to entertain her-tell you more if you want to know...take care

lou33 I am in a similar position to you and the rest of you other mums out there. When my ds2 was born the doctors told us that he had hours let alone days to live.He survived those hours and days.These then turned to weeks and months where we were told he would not sit, crawl, talk and walk.Now he is nearly 6 years old, he can sit, he can roll around.My point is NEVER give up hope. Our son is treated like the rest of the kids.O.K he is fed by stomach tube and can,t talk and wheelchair bound but so what.Disabled children are the MOST loving kids of all. I think everyone would agree with me on that.My heart breaks alot of the time esp Xmas and birthdays but I am so proud that he has proved the doctors wrong and what a little fighter for life he is. It breaks my heart coz we have no diagnosis.I feel guilty sometimes whether it was something I did through pregnancy but I did everything right. You are not alone.AND we would not change him for the world coz he is so special.

P.S I forgot to add that prepare yourself for more DLA forms in the coming years.Our lad was disabled off for life at 8months old.Two years ago I had to fill it out again. I cried filling those forms out just like you.If you need to bend an ear I am here for you and anyone else.Take care everyone.

Hi Lou33, You knew I find this thread...... Didn't you??? LOL.
I have just recieved DD's dla and we have been awarded higher rate care and mobility for the next 5 years. DS's Dla came in sept 2002 and he has been awarded the same amount, which we got a car with.
At least you haven't got to appeal.....ever!!!
I hate those DLA form.. everything sounds so bad.
look\linkgroups.yahoo.com/group/specialkidsintheuk/here{}

whoops....i'll try again!!!!!!!
look at this

dla forms are awful! Big big big glass of wine needed after filling one out- and just don;t read the bloody thing again- too depressing.

Lou33, I also really understand how you feel. For a while, there are no letters/appointments etc to make you really appreciate your child's disability. I do find "regular" toddler groups difficult, people are always asking for an update and watching dd when they think you're not looking.

Like others, I've found your strength and knowledge on here inspiring and am sorry you felt bad. As MABS said it's only natural. Have you found any internet groups for your ds's condition? There seem to be masses of groups on Yahoo for special needs, I've found one for dd and it's very helpful.

You are all so kind, thank you. You would think I would be used to filling in DLA after having my oldest on it for the last 9 years (although she is now only on the lower rate), but somehow with Rory it feels so much harder. Maybe it is because he is getting the highest rate, and his problems are that much greater than dd ever had.

Chatee we do have a standing frame, is that what you mean? He is strapped into it to strengthen his legs. Haven't really been able to use it though, because first he kept tipping forward and almost banging his head on the footplate (his top half has very weak muscle tone), then when we put him facing the sofa, he managed to push himself away in the frame and then tip forwards (he has strong arms though!!). We didn't have a table at the right height to stand him at, so Remap made one for us, which has only just arrived. Unfortunately it was the engineers first job, and although he did pretty well, he forgot to tell us that the screw in legs have to go in a specific place, or else it becomes uneven. So when we took the legs out to pack it away we couldn't get it balanced again next time. I think we have it just about right now, so he can start using the frame again. We also have a Breezi chair with a pommel, tray and lap belt for him, an adapted bench, which he also keeps falling out of, and a seat for the bath, so he can go in on his own. Yesterday we got his little horse to play on. It just shows the differences between him and his brother and sisters. My heart breaks when I see him watching them playing by the kitchen garden, and he so wants to be up chasing them too, but he's sitting there just watching.

He does go to a mums and toddler group, but it is a regular one, and when I go (dh usually takes him) it does feel like they are trying to look without me noticing, and you can see all the questions going through their minds. I wish they would just ask, beats having to listen to the contents of their kitchen sink cupboard , as though I am supposed to find that even the slightest bit interesting!

I haven't bothered to look for any internet sites for 2 reasons, one being with mumsnet I don't feel I need another, and two being most sites I find are american, and seem to deal with things differently to me.

Thanks again ladies, you have really helped.

Lou33, the site that I letf a link for is for a UK support group. The lady that runs the group lives near London and 99% of the group are from the UK. They are a great bunch and are great at help with DLA, adaptions, appointments etc.

Thanks Mieow I will take a look.

Blimey I had to register with yahoo first, which took about 20 tries at a name, then now I have to wait to get membership to join! Hope it's worth the wait mieow!

Yeah our dd was similar with the standing frame and even managed to undo the eight velcro straps (when she thought I was in the kitchen and not watching her!!!!)but we bought a stand up easel and some paints and that did the trick for quite a while. In the nice days we would stand her outside and got her a battery powered bubble blower for her to use and all the other children would take turns chasing the bubbles as well(provided dd eventually let them have a go on her bubble blower they would keep her entertained for a good hour!!-sanity for me/bad mum whichever)DD goes to a regular toddlers and it was quite difficult at first as we have only lived here for 12 months and no-one knew us and I felt really low that I had left my last toddler group(which I had attended for 5 years and knew lots of friends) before we got all the bad news about dd and felt i couldn't talk to anyone.DD has just started at playschool 2 mornings a week and will have a funded support worker after Easter so I will be able to leave her there and get the chance to a little time at home.That's if DD will stay?????

sorry to interrupt
anyone know how i could contact families with deaf or partially deaf children in west sussex or how i could find out?

Custardo, have you tried Contact a Family ? I think they put you in touch with similar families.

Also just found that the National Deaf Children's Society has a family day coming up in london, details here . Hth.

Also I have a friend who teaches profoundly deaf children , so I have emailed her to see if she knows anywhere. I'll let you know when I get a reply.

Doormat, I found your post very moving. You have had a rollercoaster ride of it for sure. Before we got the diagnosis of cp for ds , the not knowing why, or what it was became almost unbearable. I can't imagine how frustrating it must be for you not knowing. Some people are able to just accept that things are what they are, but not me, the more I know the more I need to know, are you the same, or have you been able to let go the question of why?

I still wonder when the brain damage in ds occured, and if I could have done anything to avoid it, but this seems to be a common feeling, probably part of our road to acceptance.I think it's natural to immediately blame ourselves , but do we ever really accept that it had nothing to do with us deep down? I will always wonder if it was anything I did, as ds's damage occured while he was developing, not from birth or labour.

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Thanks Robinw. How is your mum anyway?

Custardo, here is the reply from my friend.

She should contact the NDCS (National DeafChildren's Society) www.ndcs.org.uk and they will give her details of local support groups 0808 800 8880 is their helpline number

NDCS Regional Officers for South and South East Region

Angela Adams.
Tel: 01296 620666
Text: 01296 620665
Fax: 01296 620666
Email: [email protected]

Geoff Harbor
Family Support Worker
Tel: 01273 390672
Fax: 01273 390672
Email: [email protected]

Brighton, Hove and West Sussex DCS homepage
East Sussex DCS homepage

and/or FYD (Friends of Young Deaf) which organises events etc integrating deaf and hearing youngsters and their families and are affiliated to the NDCS.

Hope this is useful.