Support/Information sharing thread for parents of children with CP - part 3

[itsnothingoriginal]

So here we are - thread number 3 to provide information and a source of support for parents whose children have been diagnosed (or not yet dx) with Cerebral Palsy.

Welcome to parents finding us for the first time and welcome back to any who have posted before

SHAK, I just read your post and it is just exactly the same thing that I would have wrote. I too feel the frustrations of children who are a year or more younger doing more than my daughter can. I passed it of at the start as she was premature, had development delays and would do things in her own time but in her case it is taking a very long time!! It doesn't help too that she has a twin who has been walking now for over a year. I can't feel that people compare them and think well if one can do things then why can't the other? I too have had all the thoughts of "why is everyone else's child normal and mines not?"

I too am back at work - 4 days a week. I never ever thought I would say this but sometimes it is a break going to work and sitting on my bum in front of a screen. As you say tea breaks and toilet breaks are a luxury!!

As much as I enjoy spending time with the girls, its such hard work. Physically and emotionally. Weekends now I just feel like I am run ragged and go back to work feeling tired because I haven't had a break at home. I definitely couldn't do it 24/7.

Hey Melmo we have the same struggles with OT. It's really hard work for DD2 so she does resist. Home environment is better for us and making the games short also help.

Yip, we don't seem to get much out of our paed - just 6 monthly reviews. I put it down to having a good physio and OT who see us every 3 weeks-ish and are very dynamic and proactive about sending referrals in for us. Leaves the paed with little to do really. I think the paed is more important if you didn't have other specialists involved, or if your specialists weren't being proactive.

Seriously well done in getting the DLA form in - it's a slog to get through, eh! Yes, I got a text from DWP too, but they will follow this up with a formal letter detailing what your dd has been awarded.

Hi Albaba sitting here so so jealous of all this talk of tea breaks lol. I miss my work and being able to pee in peace :)

Thanks everyday its really hard to see them get so tired so quick. Thanks for clearing up my confusion with the paed :)
The forms are hard, its really not nice to point out all her bad points

Albaba I also passed a lot of stuff off as him being premature. I also convinced myself that's all it was, not knowing many other premature babies, I assumed it was fairly normal. Not one physio or doctor/consultant has ever suggested there could be anything else at play.

My DS's 'progress' has also been very, very slow, but he is progressing so that's a positive at least. We dug out the old walker (you know the bog standard v-tech one with the telephone) and he's now able to move the walker about so he can change direction. We put it away when he was about 14 months old after being told it wasn't good to use walkers, that we should get him to cruise the furniture and try and bridge gaps by himself. He couldn't shift direction in it, but he can now. He was rampaging around this morning on that which was lovely to see.

How old is your DC now Albaba? How are they doing? And how premature? DS was born at 30+5.

Also, I've had a quick look at turn2us.org and it seems you can't get the mobility part of DLA until they're 3, does this sound right? DS is 2. Would DS qualify for the 'care' part of it if he's unable to dress himself/clean his teeth etc or is that just within realms of normal for 2? Is DLA the same as carers allowance or is that something different? Just thinking if financially we might be better off if I left work and cared for him myself. DS is with a childminder 3 days a week, which costs us £235 a week. I'm only bringing home 450 before tax and NI each week, so there's not much in it. I also don't get any benefits or pension here.

On phone so this will be a bit brief :). DLA is a benefit belonging to the person with the disability. It's intended to help them. DD2 gets the care part of DLA. You have to explain the difficulties your child has over and above what their peers have. Cerebra guide is a great help in explaining - I'll look it out for you. Unlikely DD2 will qualify for mobility at 3 as she can do some independent walking. She might qualify for the mobility element at 5 depending on her progress/development. Qualifying criteria differs between 3 and 5. Off to find cerebra guide for you. Hang on...

Carers allowance is the benefit for me to be able to be available to provide the care for DD2. I've only just applied (as I've only just finished work) and waiting to hear if it's been approved. Carers allowance is about £62 per week I think.

Shak. My dd is now 2 years and eight months old and was born at 33 weeks. She was discharged from neo-natal after 16 days and as far as we were concerned we were taking home a completly normal baby. She has been late in meeting her milestones. She didn't sit until 13 months actual age, 11 months corrected age. HV said she had developmental delays. I wasn't particularly concerned. I thought it just meant she would be slower to do things than full term babies. The HV then said she had a squint in her eye. We were referred to a child development clinic were we have been going ever since for physio! When she first started she couldn't even sit unaided. She has progressed loads but I would say she is about a year behind were she should be. She is a happy child though. She is very clever and takes everything in and remembers it. She knows her numbers and alphabet. She has loads of words and can talk in proper sentences. Her problem is purely physical.

I would strongly advise that you apply for dla. At first I didn't want to apply as I didn't want to think of my dd as having a disability but we waded through the forms and were awarded payment for middle rate care 3 weeks later. It is depressing filling in the forms as you have to paint the worst case scenario of what your child can't do compared to a child of their age.

The mobility part isn't awarded until the child is three. I receive 212 middle rate care per month. I reduced my days to 4 days a week so for me this pretty makes up the shortfall in my wages.

Please feel free to contact me if I can help further. Albaba x.

Can't manage link on phone. Google 'cerebra DLA guide' and it's the top return. X

thank you all so much So Albaba you get the DLA even though you're at work 4 days? I work 4 days too. And presumably you can only get this once you have a proper diagnosis?

Yes I get the dla. I doesn't matter that I work. I have a child who has additional needs over and above a 'normal' child of her age.

As far as I know you don't need to have an official diagnosis to apply. If you see any professionals about your child there is a page were they can make a statement supporting your case. For example our physio wrote a statement for us stating what our dd's difficulties were and how she needed extra help and support over and above what a 'normal' child would need.

I would strongly recommend that you apply. For us it eases the pressure of us just that little bit.

ps Albaba your DD sounds very much like my DS. he is very, very switched on, can count to 10, has many many words and is speaking in three and four word sentences. His only problem is moving about

here's the Cerebra DLA guide :)

www.cerebra.org.uk/sitecollectiondocuments/books/dla_guide.pdf

URGENT

hi all.
I need to hire a specialist pushchair for when we go to peto in 4 weeks time (the brakes on our pram have broken) does anyone know who does this? ???????

or OT is on holiday for 2 weeks and hasn't yet put in the referral to wheelchair services, I still called them but they said they couldn't do anything until they have a referral. I called all thecompanies they gave me and none hire out pushchairs

help help help please help!

I feel quite deflated today and also a bit teary. Am in work and feel if anyone said anything to me the floodgates would open!

We saw a private orthopaedic consultant yesterday regarding our dd age 2 years 8 months. We always thought that she was a level 2 on the gmfcs and our physio who sees her every week also put her at a level 2. We thought also with a level 2 through time you could progress and eventually become a level 1. Is this not the case? He said he would put her at a level 3 and would remain at this level which I was pretty gutted about. In her defence though he only saw her for about 1/2 hour and she became a bit teary and only took a few steps for him in her afos. In her regular physio sessions and our garden she can get herself from sitting to standing and take about 30 unaided steps so she didn't show her full potential to him yesterday! He also talked about future and putting her in to a special needs nursery. I know we get dla for her and its silly but I don't like to think of her having a disability. In my eyes its just taking longer for her to do things. He said she should be ok getting around in a classroom but not for rough surfaces or inclines. He talked about mobility devices like a kaye walker, crutches or even a wheelchair. Gutted again. I thought that once she got properly going she would be ok. Maybe just be a bit slower than other children and maybe be clumsy and have problems with balance. I know children can be cruel and I can't bear the thought of her sticking out and being different.

It doesn't help either that she has a twin sister who has been walking for over a year. I felt blessed when I found out I was having twins now I just feel cheated out of how things should have been. I had countless scans and dopplers so how could this have happened? I placed my trust in the Drs and feel really angry and let down by them. This is going to affect her for the rest of her life and constant appts and worry has already put a strain on my relationship with my dh.

Hi *albaba" sorry you are having a rubbish day. Sometimes everything just looms and smacks you in the face. To give you a positive story, my DD (now 3.9) sounds like she was more behind when she was your DD's age. She couldn't do any unaided steps until she was 3; we were lucky in that once she made that leap it came quite quickly. She still definitely has balance issues and has problems getting from sitting to standing but has surpassed expectations. In terms of nursery, we have been been given every opinion under the sun! She is mainstream nursery and has some 1: help but frankly the most useful thing has the physical layout of the nursery-she can do independant walking but not for distance, so there are lots of things to stumble into if that makes sense, to help catch her balance and cling onto. She has the option to use her Kaye walker outside but is a stubborn wee thing and prefers to do everything herself, even if it means inching along holding fence posts for support! We have never had the GMFCS talk to know a ranking but I'm sure our physio said you can't generally accurately rank until 4/5 yo? Hope tomorrow is brighter xx

haywire sorry I can't help, hopefully someone will be along soon.

Alaba sorry to hear you are having a tough day. I have them too, just as things are going along okay a comment from a 'we'll meaning ' professional knocks you down. I too, don't like to think of my little girl as disabled, I hate the word. She can't walk or crawl yet so she clearly is, but to me she is just dd.
My little girl sounds a lot less able than your dd and there has been no mention of special nursery or school. In fact we are actively being encouraged to place her in the nursery/school dd1 is in. So from your previous posts the is no reason why dd will not be able to attend the same school as her twin.
Like amy said our Physio also said GMFSC is not particularly useful until 5yrs.
With regards to DH, just keep talking, I know my DH is much more matter of fact. But I think that is his way of dealing with things, When I am sad, he is of the opinion that dd is what she is and we have to deal with it, whereas I want to churn it over and over. Just keep talking....
What part of the country are you in? Are you doing any additional therapies/physio?

We have for the last month been doing a new therapy - MAES therapy in London. We had been doin ABM but Felt we had reached the end with that. us choosing MAES came After reading a post from a mum on the scope website. The therapist Jean Pierre is a leading neuro development physio who trains the Bobath physios and odd has really improved since. We are also doing Bowen which all seem to be aiding dd development albeit sooooooooooo slowly x x

Hi. No idea about pushchair hiring sorry.

In respect of levels, a lot of the info is arguably out of date, as it is based on studies pre current interventions. However in theory the children don't change if they are out in the right category. But pre 2 ds was level 1/2. Then because the next assessment was done when he was 2 actual he was assessed at level 3 because he couldn't walk really and certainly not independently, and he also w sits all the time. Then at 3 post botox he was assessed at level 2' and then back at level 2/3 now at 4.

Anyway I personally think he is level 2/3 and even that doesn't mean he will need to be in a wheelchair, but it probably means he will chose to. And we believe he will because a wheelchair will give him more freedom than not having one as he will be far more independent. I do know exactly how you feel, I felt just the same, but then I spoke to adults in wheelchairs with different conditions, and older children, and generally they chose to use the some of the time even if they can walk. Generally they want to play with friends, play sport, be like everyone else and a good wheelchair can allow that.

Also ds is going to a manistream school, and there has never been any suggestion it wouldn't be suitable. He can't walk, he won't catch up, but he has not got the needs for a special school.

Haywire so sorry, I don't have an answer for you either :( we've been on the wheelchair services waiting list for 5 months :(

We've never been given a GMFCS level but I would definitely say DD started out as a 2/3 and is now a 1/2 depending on the day!! She was on the late end of normal for everything but still has issues with balance and fine motor (becoming more apparent that she also has a tremor ).

Kids do notice the difference at school but it's not been much of an issue - DD holds her own mind you and would be extremely rude and cheeky to anyone who might comment on her ability!!

Sorry haywire I would not know either.

Can anyone tell me about a hand splint? We seen dd's OT about a fortnight ago and she suggested we refer her for a hand splint. Does anyone have experience of this? If so can you tell me about it.

OT said its for the web between thumb and finger as she is mostly fisted.

Any info would be great

Hi melmo our DD2 has a hand splint. Ours is a soft fabric that fastens with velcro. The material goes round her wrist and a section comes up across her palm and in-between her thumb and forefinger. We have it because she keeps her thumb tucked into her palm, so it's to bring her thumb out.

However, she refuses to use it. Our OT says refusal is quite common. DD2 just rips it off (only held with velcro after all). I can try to post a pic tomorrow if this would be useful (might try to get DD2 to wear it for a photo 'shoot') :)

Albaba I think you're a couple of years behind where we are now (DD2 has just turned 3) and so much of what you say brings those early days flooding back to me. The darkness of the unknown was so consuming and I was saddened by every therapy session, every medical appointment, every social occasion where I would see her peers etc. I cried every day for months. I still cry relatively frequently, but I feel like I'm coping better.

We're all different and I'm making no assumptions here, but if I could have MY time again, I would take up my lovely GP's offer of a referral to a counsellor for me when she (correctly) suspected I had depression. All I'm saying, is to make time to look after yourself too and to consider if it would be helpful for you to look for RL help through this very tough time.

There is a lovely post on the CP Thread No2 from a young lady with CP who talked about her time at school. I think it might be three quarters of the way though the thread. She talked about how well she was supported by her classmates and what fond memories she had of her school friends and school days, and what a fulfilling and happy life she continues to lead. She appreciated that we all had 'little ones' and that we parents feared for their future, and she swiftly in that lovely post put our minds more at ease. I don't know if I can link direct to that post, but I'll try to look it out.

Hand holding with you Albaba xx

OK if the link-ma-bob doesn't work, it's on page 25 of the CP Thread No 2. Posts were written by BeautifulBabyBoy

www.mumsnet.com/Talk/special_needs/1671211-Support-information-sharing-thread-for-parents-of-children-with-Cerebral-Palsy-Part-2?pg=25

sorry Albaba re-read your post and your dd is about the same age as ours. I hope you get all the support you need and deserve both on here and in RL. It sounds like it's really tough going at the moment xx