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.

Dottee we are currently going through the process of coming to terms with the fact that my youngest has cerebral palsy. It was something that I had known deep inside since he was about 7 months old, just on instinct I think, but dh has been trying v hard to look upon him as just a laid back liitle soul, so it has been a tremendous shock for him and he is devastated. Not that it makes any difference to how much we love him , but because we love him so much, and can envisage the cruel remarks from other people that he will undoubtedly encounter through his life, and the frustration he will feel (and is already starting to) when he is unable to do something his peers can do without a second thought.

He is a beautiful happy and clever little boy, and it breaks our hearts to see him sitting there as though his legs belong to someone else, or reentering a room to see him fallen on his face waiting quietly for someone to help him - not even crying. He has had a long hard life in his 16 months so far, premature, jaundice, urine infection, failure to thrive, allergies to dairy, soya and wheat, developing a squint, having to wear glasses, hearing tests, and not being able to sit, roll, crawl or walk, so obviously this news is so hard to deal with right now. I am aware of welfare benefits and other practical side such as charities and organisations, because i have dealt with those before with another child (she had multiple problems at birth too, heart, hydrocephalus, dev delay), which she has thankfully managed to virtually overcome, but they don't fulfill the emotional side that we all need support for do they.

Dh and I are in the unfortunate position of living in a town with no family anywhere near, and no real friends. Those living here we have told have had to stop themselves running at top speed in the other direction. Mil lives abroad and my mother is dead, brothers and sisters scattered all over, as are our real friends. So it's just us as it's always been, which is a bit of a strain at the moment although I know it will improve. Dh needs some time to come to terms with this ,and i understand the feelings he is going through because i went through them myself many months ago when i was being told not to worry about my son. He isn't one for showing his feelings but this time he can't hide them and for some strange reason he thinks it is weak to cry! Don't ask me why, i think its the best thing he could do personally ,and have told him so.

You are right about everything paling into insignificance though. We have many other things that need attending to right now (not least 3 other kids) , including an imminent house move, but all our energy has just disappeared! I know it will return but it's going to take time.

This last few days have been the most stressful since my mum died 3 years ago, so it's been a big release to bang it all down here. Thank you for starting this thread!

Lou33, it almost breaks my heart to read your message. You clearly love your son dearly and I am sure that he returns that love in the little things that he does to please you. I've got nothing useful to say to you because I can't even begin to imagine what it must be like in your situation.

Perhaps your DH would benefit from speaking to other dads in the same position through a support group. I think a lot of men hide their feelings and find it difficult to talk about their fears and worries but unfortunately it is often the mums who have to cope with the day to day problems whilst coming to terms with the situation themselves. I hope things become a little easier for the whole family and that you are given all the help available when you need it most. Thinking of you. P

dottee and lou33,
Like PamT, I was crying reading your messages. I also have nothing useful to add in the sense that I have never (up till now) had to face your difficulties, but I send you lots of love. You seem very brave and loving parents, as, I am sure, are your children. xxx

I would like to echo what PamT and Oxocube have already said. I was also welling up reading your posts.
I have a nephew who is severely autistic, so have some second hand knowledge of what you must be going through.
Some time after the initial shock of diagnosis, his parents found support groups such a huge comfort. They then felt able to grab any help they could, to not only help their son, but also the rest of their family.
I hope you find the support and care you want.
Thinking of you,
Jessixx

I too am sad to read your news, Lou, and yet I felt there was a sense of purpose and resolve in your message. Whatever problems your little son has, he's lucky to have you as his mother.

Hi Lou (and others)

I'm so glad you've joined in. We're somewhat further down the line than you as my daughter's now approaching puberty (with very delayed speech and language - what a nightmare!);-).

Reading what's going on in your family, you must be under strain. The only bit of preaching I'm going to do is give your hubby space to sort his head out and find time (if you can) for you two alone. You find yourself having to see that many people and do so many things, you can easily forget you're a couple. I talk through experience - I'm now divorced from my childrens' dad. Right that's enough of the soap-box!

Thanks to the others for joining in. I intended this thread to be enlightening and educational to those who have not had first hand experience of the subject. Things don't have to be doom and gloom. My 'special child'(not for much longer) has 'guts' and ended up on 'The Rack' at Camelot the other week - the more nerve racking the better! If people accept her for who she is, she will be OK but I fear over the prejudice she will no doubt encounter during her life. She does have opinions but expresses them in unconventional and sometimes anti-social ways (God forbid if we have to wait at McDonald's for her cheeseburger and she hasn't quite grasped the idea that once food as been ordered in a restaurant, it has to be cooked!) But she's a ten year old that doesn't care who's watching when she gives me a sloppy kiss and a cuddle, who gratefully accepts a cheap and cheerful toy rather than demanding I spend a fortune on what's currently a la mode, who laughs and giggles when I've found a piece of playground equipment which is suitable for her and says thank-you and bye-bye to strangers (some words she does know).

I have not sat on my laurels either. I'm a very pro-active mum and strong on (dis)ability rights. I'm involved in SCOPE and I'm a governor at my daughter's school. We have moved house within the last year due to my partner's employment and now live 45 miles away from my mum and friends (I'm an only child) so I realise how lonely it can be going somewhere new (especially if you can't work because you have got a child with special needs - you can't get paid childcare for love nor money!!!) (*Within the first sixth months of being here, I'd already met the local Director of Education and the 'education budget setter' and said my two-penneth about Special Educational Needs and the lack of funding, as I met them at a Governors' seminar.) But life goes on and you'll get by. Going back to that infamous party Lou, that happens all the time. Just try not to hit anyone LOL!!! You'll get stronger whether you like it or not.

Lou,

I hope you don't mind me asking but how did you find out your son had C.B. and what were the symptoms (if that is the right word). I hope you don't think I am being ignorant but I am asking for the right reasons.

The only reason I ask is that my third child has just failed her 8 month development check and is being referred. They said they think she is "on the wonk" (H.V. words, not mine) but when I check her spine, etc. I think she looks straight.

She is so happy and cheerful all of the time, it makes me wonder if she is living in her own little world.

Thank you all so much for your really kind messages. It's amazing how strangers can often be more therapeutic than those supposedly close to you.

Bumblelion I don't mind you asking at all. I guess from about 7 months i always knew there was something wrong with my son. Having had 3 other children my first also born with multiple problems I had experience of what he should be doing, allowing for prematurity and varying rates of development of course.

He has always seemed , well, sickly. He struggled to breast feed and finally rejected that option at 16 weeks. When he had his development check up at 8 months he obviously had no strength in him to even try and sit up, and couldn't lift his head when on his tummy. He also failed his hearing test. Hv being as they are, they have to allow him another chance to "pass" so he was retested after about 8 weeks (they forgot him) after i called to force an appointment because the waiting is so frustrating. He failed his hearing again, so referred him to an audiology unit, where he finally managed to pass at the fourth attempt. Interestingly enough (though not surprisingly in this area) they didn't really pick up on his lack of motor skills.

He developed an obvious squint at 9 months, so off I went again to ask to be referred, which didn't make them v happy because they said he didnt have one (which was why his eye was looking at his nose !). Again they "forgot" to refer, but persistance on my half finally got a referral and he now wears glasses.

After developing an allergy to wheat (alongside his dairy and soya one) I got an appointment with a consultant so managed to convince her to get him into a multi disciplinary assessment, despite being told the usual "all children develop at different rates". By the time he was seen in March, he was 13 months old. He couldn't sit, roll, crawl or walk, doesn't talk as such, only babble really. He has sight problems and has had a few fits along the way. He is globally developmentally delayed, but his main problems are gross motor. He doesn't seem as if he is in his own world, as we do interract all the time, he has anticipation, can understand jokes we play on him, and join in the games we start. Basically his main problem is in his legs, they look like they belong to someone else! His spine is straight , although I do look sometime and think I can see a slight scoliosis. Cerebral palsy is not a mental condition. A part of his brain has not developed properly, and depending on which part that is will depend on the type of cp. Children with cp are usually of equal intelligence to those without it.

I don't know if the consultant would have told us that he had cp unless i pushed her for it. Apparently they like to use the term developmental delay because cp scares parents, she said! Personally I feel "delay" suggests this is only a temporary thing, whereas cp is permanent.

I really hope you get the quality of help you deserve, don't be intimidated by the doctors and push for whatever you feel is right. My son has been seen by these people since he was 8 months old and only now am I starting to feel we are getting the proper level of care for him. Having said that I do feel extremely let down by the availability of services here. He has had 2 physio sessions since he was 8 months old with another due today (he's 16 months now) and we don't have a health visitor due to noone wanting to work here i guess! So we see an agency one each time, which makes it hard to have any relationship or continuation of care, and this is also the same with the physiotherapists.

Don't know if this helps you at all, but you must go with your instincts, you know your child best of all. Good luck with your appointment.

Lou, I don't know whereabouts in the country you live, but your story about the level of services available is a familiar one. I have a friend with a child with CP, and he and his wife have to fight for everything for him - it seems to be a constant battle to even get what he's entitled to.

Bumblelion
C.P. (Cerebral Palsy) comes in numerous forms and it's hard to catagorise because it depends what part of the brain is affected. And there are lots of causes, for example, premature births and the starvation of oxygen to the brain at birth. (I have been told that my daughter's C.P. was caused by a stroke prior to birth.) If you want to find out more, go to www.scope.org.uk

Don't panic and instantly think that your child's got C.P. because she's failed the assessment. It's good that they are referring her and checking things out. It may be a false alarm. If there is a medical concern, at least the ball will start rolling.

Imagine yourself as having a few too many! You want to put your foot forward but it doesn't respond. Somehow the message won't travel. That is a way to imagine C.P. when it affects people physically. Then it can affect other brain processes (if it has damaged that area) - in my daughter it has affected her ability to process speech (she can say simple words and phrases but can't string a sentence together). It doesn't have to affect the person's intelligence (a friend's son is taking a degree in IT at University although he does need support with life skills). And contrary to the media no-one 'suffers' from C.P. It doesn't hurt!

Lou - I agree with you about being pushy. The services both medical and educational are underfunded and you find yourself fighting for whatever you can get. And I had to ask whether my child had C.P. She was diagnosed at 7 months but they only told me when I asked them at going on for 12 months. There is a trend not to 'label' these days but you do need to know when going through the red-tape of the benefits system (as you know).

Thats a very good desription of cp dottee.

I found out from my consultant that my son had cp over the phone. We were not due to be seen by her again until the end of August, and as I was getting increasingly concerned (and convinced) about him having cp I insisted I was called back. After confirming my worries she went on to say that most doctors now are reluctant to use the term cerebral palsy because it scares parents, so they use the term developmental delay. In my mind that suggests that my son's condition is only a temporary thing that will disappear eventually, which of course cp is not. I got the impression she would have discussed this with me in August but i feel quite rightly that it was too long to wait. Incidentally my son had another physio appointment today, and when I mentioned that we had been given a diagnosis of cp she acted like she had known for a long time. In a way I am glad because had she totally disagreed we would have been torn as to what way to follow, and it makes me feel less like a mum with munchausens by proxy! We have also organised an emergency appointment to see the consultant tomorrow afternoon.

Azzie I live in south beds, but when we lived in west london with my oldest daughter we were almost spoiled in the level of care she received, so I guess everything else has seemed shoddy. We got weekly home visits for physio and speech therapy, portage (the physio here has never even heard of it), hydrotherapy every week, respite care, the list could go on. So on finding my son now needs even more help than my daughter did it's very depressing to see what is on offer locally. We are moving to Surrey so I am hoping that there will be something better available.

All I can say for anyone else about to enter this snake pit is do not ever be worried that you are asking for too much. Nothing will be offered unless you specifically ask for it ime, because unfortunately whatever is said, budgets seem to be the most important factor in the nhs nowadays.

My brother has severe learning difficulties, he is now 27 but has the mind of a 7 year old. My sister gave birth to a Downs Syndrome child 8 months ago. I have met myself lots of 'special' children through my brother. And they are special. My brother will go up and hug anyone, there are no reservations to him. He gives unconditional love, which I have seen with all of these children. I do believe that they are put on this earth for a reason, that they are angels if you like, sent here to teach us about love. They teach us to look beyond physical or mental imperfections, to look at the wider picture. They give so freely, it really is a joy to be with them.

Special children are given to special parents, to be a mother of an angel is quite a task! But that is how I see it. I know it is hard and there are lots of hurdles along the way, but these children more than make up for it with their love and affection that rivals any other.

Lou33, I wish I could give you a great big hug, and your son too! I wish you all the very best and all the other mums who have special children. Please don't look at it as a curse but a blessing. These children have so much to give!

Rhubarb , thank you for your support. I tend to agree with you. My sister has a teenage Down's Syndrome boy, I have my youngest who has cp and had another child with hydrocephalus and heart problems, so I too have had access to many children with different needs. I came to the conclusion many years ago that all children are born as individuals, they can all do somethings better than others. Some excel at gymnastics, some don't, some read early and some don't. My son will probably not walk as well as others but he will be really good at something else. At the same time it is still necessary to grieve for what they may not have, but it shouldn't stop anyone giving all their love should it?! He's still perfect to me because he is mine and the love I have for my children will always be unconditional.

My very special dd who is 4 has been through so much in her short life,born at 32 wks,then got gbs meningitis at 14 days,as a result she got hydrocephalus she had to have a shunt fitted at 4 months and as result of surgery her brain was damaged and now has hemiplegia.She is blind in one eye but despite all of this i wouldnt want her any other way, i have quite alot of negative comments when i say that but as far as im concerned she is who she is so why would i want that to change.I agree that doctors should tell parents exactly what is wrong with their child because then you can learn how to help your child the right way. After dd had meningitis we were told her ventricles were "enlarged" and she needed an operation straight away so we were transfered to a neuro unit where we waited knowing nothing, it was only when a nurse came to book dd in that she told us that dd had hydrocephalus, she thought the doctors had told us, i had never even heard of this condition and then she left.Needless to say we were distraught, it was only when i happened to find a magazine on the ward from the charity "LINK" that i understood what was wrong with dd and what operation she was going to have. I suppose i sort of understand why doctors keep this sort of information to themselves, but personally i find it so much easier copeing with dds "problems" if i know all i can .And i totally agree with you haveing to fight for everything from benefits to statements and funding for a schhol to help your child, thankfully dd has recently got her statement of special needs and the school(mainstream) will now get all the extra money to employ 2 people to care for her and for all adaptions in the school.It took me a long time to accept that my darling little baby was so differant to all the other babys, and that she will allways be differant but in my eyes she is the most precious(SP?) and special little girl and i will never want her to change.

Ariel, Lou and Dottee, I was deeply touched by your strength of character and your obvious deep love for your children, I feel ashamed for the times I moan about my son when I should be so thankful for his health. I hope you all continue to get the support and backup you need - your children are very lucky to have you as parents. xxx

I have a 15 month old daughter with Down's Syndrome - and boy is she cute! :-) (see for yourself at www.fasterpage.com/katarina )It was a very very big shock finding out at the age of 24 that my newborn has DS and a serious heart defect- but the heart was fixed, we adjusted to the DS and life goes on fine. We're a very happy family and extremely proud of our two girls.
I do feel sad at times - Katarina is not very mobile yet and the low muscle tone is really holding her back. At this age my older child was dashing about - Katarina still isn't crawling (we're close though) and it can be painful to see ordinary children of the same age and facing the fact that many things will always be harder for.
I'm also very worried that she might get bullied at school or just not invited to other children's parties etc. because the parents are judgmental and do not realise that first and foremost she is a little kid who wants to be happy, have friends and learn new things, just like everybody else.

And then of course having to deal with people's well-meaning comments can be a bit tiring as well at times - stuff like 'you must be such a strong person' or 'I don't know how you do it', which makes it sound like having Katarina is some kind of awful affliction are not exactly appropriate. Far from it - Katarina is usually very good-natured, she's reaching her milestones just like other babies - only a little bit later, is great at entertaining herself and is in fact quite the dream baby to look after. She's just learned to say 'nonono' and shake her head though so I don't know how much longer the peace will last!

We really do enjoy having her just as much as we love having Hannah, our 3 year old, and had in fact considered adopting another child with Down's Syndrome (we have now decided that we've got our hands full enough as it is).

Hannah loves her little sister and from all that I've heard siblings of children with DS tend to grow up to become very kind, considerate and tolerant people. I would never consider Katarina to be a burden to any of us and I am sure she will bring us as much joy and stress as Hannah during the teenage years.

Both my children are healthy and happy, and I am content with that.

2under2, Not having a child with special needs, I am guilty of admiring the strength and devotion that parents like you have. I know that you love your children in the same way as I love mine but I can't help being one of those annoying people who do admire you for the way you cope. I also agree with Rhubarb's comments that these are special children who are given to special parents. Please don't be so hard on people like me, you really do work harder both physically and emotionally when you have a child with special needs and I suppose I would learn to do the same if I was in that position but as I'm not, I can only admire those who do.

To all of you with 'special'children who have written here , it was like reading what I would/should have written myself. My DD was born at 29 wks ( I also have a 7 yr old daughter born at 32 weeks but she is'fine'and we were told within 48 hrs that there was problem with the brain scan. We were in denial , and to be honest, far more concerned with him being able to breathe with the ventilator. I read about all these problems and delays people have had with diagnosis and in that way I feel lucky. My son has a brilliant physio and paed and started physio at 4 wks old (we're in Brighton)

That said its still very difficult, as a mother I feel responsible for his condition. I had a dreadful pregnancy and bled all the way along, they feel it was one of thes bleeds that did the damage around 24/25 wks. He is doing very well at the moment and has started 'walking' with a severe limp in the past couple of wks at 21 months. This has been a very emotional time as we were told he may not walk and we've also got some heavy family stuff on the go ........

All of you who mention how your husbands are having/had a hard time - I totally agree. Mine has buried his head, doesn't communicate, and thinks if he ignores it , it'll go away. But being selfish, that doesn't help me so thats why this site is so great.

I am immensely proud of my baby, he's had a lot of fighting to do in his short life so far - he has a very weak chest and is often hospitalised. Sorry I'm waffling - hard to shut me up on the subject of my special boy - just wanted really to say thank you to everyone whose been honest enough to write previously. MABS

PamT & others - I recognise what you say about offering 'sympathetic' comments to parents with children with special needs. I am in the perhaps somewhat unusual position in that my DS was born with a serious medical condition which could(& in fact was) be successfully corrected at 6 months. So for 6 months we had to live with those sorts of comments & feedback - however, in my opionion, it is much better for people to say something, if sometimes a little crass, than nothing - ie: pretending an obvious problem does not exist (which some people did!!) - it's a bit like when someone dies & people say nothing - I appreciated the comments people made and the knowledge that they were thinking about us.

Sorry if this is rambling, perhaps I would feel differently if I had to live with a life long issue.

Did anyone see the Jasper Carrott situation comedy a few months ago 'All about me'? I thought it was brilliant and enlightening about having someone with special needs within the family group.

I loved the 'normality' portrayed by the family and the fact that the BBC had cast an actor with disabilities.

I'm mentioning this to anyone who is feeling 'sympathy' and doesn't know quite what to say. If you're out and about in South Yorkshire these summer holidays and you see a mum having problems in trying to persuade her disabled 10 year old daughter that sitting in the car all day is not acceptable and there is fun to be had out there, it may be us. And then when 'we' start moving, 'we' may get clumsy, bump into people, make silly noises, start pretend crying or saying 'hurt' - oh that one's wonderful in the middle of a supermarket because people turn round thinking what is that cruel woman doing to that poor child when it's my dd objecting to being there and wanting to return to the comfort of her video!

How can you help us? Talk to us. Encourage your children to accept us (and not to stare please) Offer practical help if we're stuck, but don't be taken aback if we say we're OK (that's called 'empowerment' and it's what people with disabilities strive for). If you work in anything to do with children, include the needs of all children. Make playgrounds accessible to all.

Brilliant Dottee - hear, hear to all you've said and I can say that - I have a disabled child too.... MABS

Trouble is how do you get kids not to stare? Speaking as one who is very familiar with disabilities, I find kids will stare at almost anything anyway. When my dd first saw a woman in a wheelchair she said "lady in pram!", luckily the woman had a sense of humour. And if she sees someone lurching and shouting, she does stare - just as she will if she sees someone doing something normal like jogging. A sense of humour is a must, especially around kids. Very often they will point and say "What is that man doing?" or "Why is that girl all bent over?" and as a parent you have to explain to them as best you can. Disabled people should not take offence at this, what else are we supposed to do?

But I do agree that talking to people does help. And if I do see you Dottee, I will say hello and treat your little girl just as any other little girl

'Staring' etc. will always occur but I feel society can do a lot more to be kinder to the individual. I feel schools could do a lot more. It's suprising how many families are affected by disability and how many people become carers not just to children but to older people of course. Yet the subject seems to remain taboo.

The media could do a lot more too. It was great to see a programme like 'All about me' because the main theme wasn't disability but they included a (severely) disabled actor. There is a debate on the youreable web-site at the moment over why there wasn't a disabled candidate in 'Big Brother'. TV and films can bring issues to light so much (remember 'Rain Man' and 'My Left Foot'?)

Yes, it is hard not to stare. Even I find it difficult sometimes (and then I could kick myself) - I've worked at my daughter's school and dealt with many aspects of disability thus acting 'normal' but then on the off-chance I'm caught out. Then I snap out of it and smile, say 'Hi' etc. (To me that's a sort of invitation to 'inclusion'

And my daughter stares! But then I say to the person in question, 'Hi, etc...'

Some one I've met on our estate almost had me in tears the other week. We met on a walk and she unintentionally didn't know about my daughter because she's always inside when my friend is passing. 'Hello what's your name?' the lady (N)said. I explained about my d's speech problems but N replied 'I'm glad to meet you (name)' and then turned to her daughters, who were staring' and introduced them. She then went on to say to everyone how nice it was for all of us to be out and explained to her daughters in front of us all how 'special' my daughter is. I didn't have to say a word. It is one of the most nicest things anyone has said and it came out so natural.

I've been thinking a lot about this recently, having a ds with an enquiring mind and sharp eyes who notices and asks about anybody he sees who looks different. The challenge for me is to stop him from staring (because after all, nobody likes to be stared at) without giving him the feeling that the disability is something to be ashamed of. He is at a lovely age at the moment where he doesn't yet have any prejudices, so accepts that some people have trouble walking or don't learn things quite like others just the same as some people can run faster than others or have different coloured skin like his friend at nursery. (I know that's a simplistic view, but he is only 4.) I really want his attitude to continue like this.

Good afternoon to all

Well my daughter's been off school for two days now and I take it all back (possibly temporarily but fingers crossed). We attempted Meadowhall yesterday (compulsory because we had to take something back which was bought on a day when she wasn't with us) but all went well. And most people were very friendly, helpful etc. ... I say most ... do other mums (of all catagories of children) have problems with 'child-free grannies' thinking they own the place; that is the sixty-somethings walking four abreast and expecting every man and his dog to step aside! :-)

And then we went to see Stuart Little 2 today. We got the 'special seats' which is good because my dd decides without fail to play musical-less chairs every visit to the flicks. A cinema employee pointed out where the lift was without me asking and everyone gave us space in the loos.

Everything was going fine until I've opened my e-mails to find my partner's been made redundant today. He's got two months more work then a lump-sum but life's never ever straight forward is it?