Having a child with phys. dis. and/or learning difficulties

[dottee]

When you find out that things are 'not quite right' with your child, other matters pale into insignificance. Whereas you may have not considered the implications about becoming a carer before, the reality of having to cope come what may hits you like a lead balloon. You suddenly are thrust into the world of various therapists, doctors and other professionals who are all very capable of their jobs but, usually, the one thing you are devoid of is someone with empathy.

You'll ask, 'why MY child?', 'what did I do wrong?' 'what's going to happen in the future?' and if you've got as far down the line as me, 'what will happen when I've gone?' There are charities and groups out there but you may not feel like contacting them yet.

One thing you'll need to know (and I wasn't told about until three years down the line - despite meeting a social worker at the time of my daughter's diagnosis) is information regarding welfare benefits and other practical advice.

And then you may just want to talk if you are having a bad day and want the reassurance that you are not alone. I hope I have started this thread especially for you. Feel free to join in.

Oh sorry to hear your bad news Dottee What line of work is your DP in?

Glad you managed Meadowhall OK. I shop there and know what you mean about the grannies. I even find it a problem without DS if I dash there in my lunchhour and have very little time but inevitably errands at shops at opposite ends of the place.

Sorry to hear about redundancy, but pleased to hear you had a successful day out

Thanks for your condolences Bozza and Mabs.

He's actually in Internet Development (currently a Webmaster). So you see all that glistens is not gold in this new technology age as this is the second time in 18 months.

He's just asked me how I've remained so calm. Going back to having a child with learning difficulties etc., you acquire a much higher coping level whether you want it or not.

I'm looking on the brightside - at least the two months notice means I won't have another one at home to look after during the summer hols (hee-hee)

Ds has already announced he's 'bored' of the summer holidays (affected by the weather I think). I was apprehensive about dd if you remember? She's hardly given me any hassle at all (bless her!). How's everyone else coping?

Hi everyone again

I've got to tell you about a 'numpty woman' today waiting in the queue at Gullivers Kingdom today. My dd wears an AFO splint on her right leg to basically stop her wobbling over as she tends to 'over-correct'. 'What's that on that girl's leg grandma? said the little girl. Smiling, I turned to give her a friendly but honest explanation when the daft old * replied. 'it's because she's been silly and fallen over and hurt herself'. I looked her in the eye and said, 'no actually - special needs.' Ho-hum!

Damn well said Dottee - oh why don't people think before they open their mouth.

I was in ELC today with 22 month ds(he has CP) and another Mum of a toddler said 'Shouldn't he be doing more at his age' I could have killed her .......

How's your dp doing ?

dottee - what's your opion of Gullivers Kingdonm (is that the Milton Keynes) - I really fancy visiting but another classmate's mum said it was rather tatty with weed infested boats...was she being a snob and what were the queues like???

Helen I live nearby to Gullivers Land (yes it is in MK) and i rather like it. It's only for up to about age 13 so there are no gangs of obnoxious teenagers swearing next to you, and if you are over a metre tall then all the rides are rideable. Children under 90cm are free but can only go on certain rides. My two youngest are hoping to go there this weekend with their gran (flying in for a visit) so I may be able to tell you more next week!

As for the point about thinking before speaking - argh! We had a removals estimator round the other day, and he saw my son who is 18 months flopped on the sofa. When he asked how old he was he said he expected he was into everything like his grandson, and so i said no he is a bit delayed. Of course that wasn't enough so he asked some more, so I told him he had CP. First he looked completely aghast, like he was going to catch something if he got too close, then said what a pity it was because he looked "normal", so you would never know would you, poor little thing! Dh and I sat there expecting him to say "ooh he doesn't look like a Spaz does he?". Needless to say he hasn't got our business!

I bet you wanted to smack him Lou33 - well done for being restrained . How is your ds doing .. any movement at all? Take care

Helenmc - the one we went to is at Matlock bath in Derbyshire and I did send them an e-mail of complaint last night. The bins were overflowing and were infested by wasps. We had great difficulty in finding somewhere to eat our packed lunch because the previously split food hadn't been cleaned up and bearing in mind dd isn't fully mobile, we had to take this into account. As for the ladies loos when we were coming out, they were disgusting - paper everywhere (fortunately not much else). I feel they didn't have enough staff on. Something else, the park is on a steep incline and this is not mentioned on the web-site or on leaflets. Had we known about the steepness we wouldn't have bothered. There are disabled loos at the bottom, middle and top of the hill but there is no way an electric wheelchair could manoevre about the park. Rides are not accessible either. Because of the mention of the disabled loos on the leaflet, I felt we were mislead into the park being more accessible than it is. I mentioned to Gullivers Kingdom in the e-mail that it would have been more helpful to be honest because they don't have much leeway to make the park more accessible due to the actual location (it was my first visit to Matlock so I was unaware as to how hilly it was).

MABS thanks for asking about dp - he's driving me nuts! We had words last night. I told him I wasn't up to looking after three children! He's put in for a few jobs but no interviews yet. He's got his compulsory letter though and the dreaded date is 20 Sept. I'm trying to stand by my man but it's hard when he's moping around the house all the time! The children go on holiday with their dad tomorrow and I'm having a 'me week' - I think I deserve it!

Thanks for asking Mabs, he had another physio session yesterday and it went really well, no tears which is really unusual for him. He's now able to turn himself round in a circle if we put him on his tummy but nothing else yet. His top half is fine, just the bottom half thats the problem. I'm sure he'll get there eventually though.

My dd is 4 she has hydrocephalus, left hemiplegia she is blind in one eye and her development is very delayed, she wears a AFO splint and the commets i get from other people really do get on my nerves, i mean what gives people the right to think they can make such rude comments and its not just stangers, i have not long had a new baby he is now 6 months old my mil made a comment a while back that infuriated (sp) me she said " im bet your glad you have a normal baby now" needless to say i had a rather rude comment i made to her.

Gosh, you've had some shocking comments! I think our absolute pearler was when dd (8 weeks at the time) was in intensive care after her heart op. She had crashed in my arms, had to be resucitated and then her lungs collapsed, all in one day... when I got home in the evening, rather worn out as you can imagine, I got a phone call from my 30 yr old cousin. He was just busy going on about what a crap day had and how everything is getting to him (he's very woeful), the only thing he said about dd (knowing full well she'd just had heart surgery and that there were complications) was that he's surprised we now have a 'mongol' in the family and how she's the first 'mongoloid' one etc. AAARGH! I've not spoken to him since and still feel like punching him.

2under2 - give him a bloody good slap from me too.

2under2 I'm stunned. Can I get in the queue to give him a slap too?

I think he should be in the 'slapping' thread. If this is a queue then count me in! What a t**r!

I know this is quite an old discussion but I am new to mumsnet. My daughter is almost six months old and was born with complete atrial ventricular septal defect. Basically she had no central wall in her heart and a faulty valve. We brought her home from hospital with a nasal gastric tube. It was interesting the range of comments we got - from some mothers who would share their nasal gastric tube story to the silly mature lady at Tesco who said 'errrr what is that going into her nose?' I pretended not to hear her as I could not be bothered dealing with her ignorance.

Like 2under2 my daughter also had down syndrome and we have had all the comments under the sun. People admiring our 'strength etc' Telling me that only special parents have children like my dd. I thought anyone could have a child like my dd. My husband and I do not think there is anything amazing or special about us. We are a family and we do family things. DD's heart defect has been corrected by two open heart surgeries and medication and curretnly her heart is doing really well. Developmentally we need to wait and see. So far so good. However we are lucky to have access to a number of services. Althought whether that is from me being a very proactive ( pushy) mother or not - I am not sure.

I did find however - as I read a number of you also that being proactive ( pushy) was important when it came to dealing with the medical profession. When my daughter was in hospital - had I not been so pushy she would have quietly gone into respiratory arrest - she was not a moany baby and she was having difficulty breathing and very low oxygen satuaration. The nurse thought it was ok - I did not. Suffice to say she ended up in ICU twice after that - and finally I put my foot down and said she was not leaving until everything was sorted.

We found out for sure about three days after my daughter was born that she had down syndrome and while it is not as poor as over the phone. My husband and I were taken into a corridor in the special care baby unit and the letter confirming the diagnosis was shoved under my nose and then my dd's folder was closed. I had to tell my husband when we got back to my hospital room.

I guess as time goes on - the extra care my daughter will need will become more apparent. I am encouraged by the strength and positive outlook of the parents here.

to 2under2 I amr eading your daughter's story and her hospital stay reads almost like our hospital stay!!! Chest drains, and oh so lovely MONOGEN!!!!! We however we fortuante enough not to have to take dd home on oxygen. Wow I am not sure I would have coped. The hospital stay almost did me in!

2under2 your cousin what??? I thought I'd had crass comments (ds1 is autistic) but please. I do get the impression that some parents of "normally developing" children don't think our children matter so much. i took issue with someone who was talking about a friend who had an autistic child "but she still loves him". Of course she does he's her child. I also hate being told I must be a special parent- it always seems a bit smug to me- but I do know what lou means about it being better if something is said that is wrong, rather than not saying anything at all.For example after telling a university friend about ds1's autism she sent an email saying how sorry she was and how he "used to be" lovely!! Then went on to all the special parents stuff. Whilst it was badly worded I did appreciate the fact that she had said something. Half my antenatal group still haven't even mentioned ds1's problems. I remember one of them rang me (we've since moved) at a time when I had told her he was under assessment. She talked for 20 minutes about her daughter's ballet classes and didn't ask once about ds1. I've also had to listen to how worried they are over so and so's speech becuase he can't (at the age of 3) pronounce s and f correctly. ds1 can't say anything comprehensible. I just feel like shouting "look I'm sure this is a worry- but worng audience- or at least do me the favour of actually asking after ds1`!!".

Talking about the fight for services- after 2 years I've met a wonderful NHSspeech therapist this morning. She is brilliant. Now I'm just praying she doesn't get moved!! Have you come across "mothers from hell"- it's an american group of mothers of special needs kids fighting for service. I haven't got a link but they are on the web....

I think all dh's have a hard time coming to terms with it. When I first started suspecting autism (around 18 monthish) I used to hide my autism books under the bed as dh would go mad when he saw me reading them. He's accepted it now and is very helpful (my cousin who's son had similar problems always says she is amazed at how well he's accepted it), but he still doesn't like telling people becuase of their reactions. He says he loves DS1 and if you tell people he's autistic they kind of imagine him beong a certain way when he isn't like that at all.

Hi everyone

Just thought I'd update you all about our lives!

We came home from our first session of surgery last Friday and since then my dd has needed near as dammit 24 hours attention. Cerebral Palsy (right sided hemipegia) has caused my dd's right ankle to throw itself outwards and without her AFO splint, she's been walking on the outer edge of her foot for the last two years or so. The ligament on the inside of her lower leg has tightened (spactisity) where the outer ligament has loosened.

Her op last week involved the tight ligament being loosened by being snipped in various places and has a pot on. Whilst under anaestetic, the doctor did more snipping than planned so although it was envisaged she would be partially weightbearing after the op., she is now non-weightbearing for six weeks! Aaarrrrggghhhh! I'm now a 24 hour nurse and minder as well hs being a mum to another, partner, homemaker and general dogsbody!

She is now sat up in bed (which I'm sat on the edge of) in what has temporarily been transformed from a dining room to a sideward! It's a good job we've got a tele/video in here (yes I know - instant electronic cbildminder but as needs must!)

Dd is off to dad's house next week for four nights (same routine there) so I'm looking forward to my break. It's likely dd will need more surgery in 6 - 9 months time as the damage caused by the tightening of the ligament is more extensive than initially thought. Next time it will be on the bone

It's made me realise that although I have a child with phys. dis/learning difficulties, she fortunately is at normal times relatively mobile and we can live a near to normal existance. Presently, I'm having to sleep apart from my partner and cannot start a long project (as I am having to check on her all the time - she wants to get out of bed and cannot understand with her learning difficulties that she has to stay in bed with her leg up!) If she were permanently in this position then respite care etc. would be in place.

Another thing I've noticed is the difference of attitude of the public in general when they see a wheelchair user approaching. My dd doesn't normally attract attention (or assistance) until she tries to talk or displays challenging behaviour for example. That's when the 'staring ' starts. But the wheelchair is a tool that warns people in advance that someone 'different' is approaching. Parents of autistic children will know how what I'm talking about because their children do not obviously appear 'different' until they display non-conforming behaviour, which unfortunately, some people find difficult to accept.

So thanks for reading. Looking at some of your messages, your children are still quite young whereas my dd is 11. I was looking at some photos of her aged 4 and she managed with Piedro boots to walk quite straight then she needed an AFO splint. As time's gone, nature as interfered and she's needed medical intervention. Not to worry though - it's under control I'll let you know whether my mental state is in a few weeks time!

Hi, trying to word what I want to say is very hard so I'm sorry if this comes out odd!
My Son was born at the end of 2011 and for the first year everything seemed fine.
Then his voice seemed to stop, his everyday words got less and less and he often seemed not to be there. We started to go toddler groups and talked non stop to him.
To cut out some time at the 2 year check up I got the ball rolling to get help and at present we are called this 'learning and communication difficulties'.
As He was breast fed I have been trying for the last few months to stop all breast feeding, at first we just had his night time one but his constant melt downs through the day for it are really hard. He sleeps with me and the only advice we have had were 1, controlled crying- fitted stair gate and tryed for 8 weeks ( 8 weeks of never ending crying at the stair gate, very nearly killed me!) and 2, sneaking from the bed to the floor and then to the hall (3 weeks and would wake as soon as he knew you had gone- cue never ending crying). It is slowly griding me down and his requests for more breast in the night has got to the point where he will scratch, punch, kick and last night he head butted me in the eye- lovely black eye :-(.
I have no idea what to do, any advice would be fantastic.
Thank you x