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and am jealous when I hear about kids who had longer without oxygen being unaffected or just mildly. Its not fair and I'm feeling the not fairness lots today. DD should be coming camping with me not staying with dh as its too hard in a tent. She's 4. She should be paddling and playing with sticks. It hurts
riven. as you say - its just not fair. thats the end of it. don't want to write any 'oh but she's still lovely' stuff because I know you know all that. you're allowed days to just be finding it crap. hang in there.
In my ds's case, we have no idea at all what 'caused' his difficulties: oxygen starvation, genes, brain malformation, environmental?? We will never know. When my ds was at SN nursery, I could see clearly that he was the most severely affected out of them all and that the other kids made steady progress, whereas my ds made little. It's so hard when they are unable to do so little for themselves . I do worry about the future as my ds continues to grow, he will be taller than me one day.
how old is your lad Manny? I find myself jealous of other disabilities ffs, friend of mine has a lad with spina bifida. He cant walk but can use his hands and talk and his brain is fine. With old sourpuss type feelings its like he's practically normal! I think its cos I have to go away. Taking ds2 camping. He needs this and needs his mum too but I hate leaving dd. I want us all to go. And people will be there with their toddlers and my heart will ache
ds is 5yrs old but has the size and weight of a 7yr old. I kind of understand what you mean about comparing with other disabilities. My friend's ds has a set of problems that are totally unlike my ds's...yet, I sometimes think, 'at least she always knows where he is' (her ds doesn't walk or crawl, whereas all our doors have to be locked - you get the picture) and 'he's asleep by 7pm every night?' and 'she gets much more respite than I ever will because of his physical and medical needs' and so it goes on. I do have these conversations with my friend and we just agree that each set of problems has its own challenges and that you just get used to what you've got.
Any kind of SN comes with its own set of issues but it is hard when your child makes little CONSISTENT progress, I know.
you know hat off to you riven....it is extremely hard. Can you SS to get more help. Its not just your dd needs it it is yours and your dh. Get a carers assessment done by SS you can request it.....they can find places that may be able to cater for holidays for all the family! Maybe you need to start shouting at them and saying you are stressed and can't cope....as you are (don't take it wrong way you need more support and arn't getting any). Those who don't complain or say anything don't get nought sadly....which is often the most needy....sadly. start moaning to us a bit more and we will all give you the confidence to speak up and be heard and get what yoour dd and family needs.
My heart aches for you all. I don't want to sound crap nad trite but i work with many very severely disabled people (kids and adults ) and i have to tell you that many of them are living full and happy and maningful independent lives with the right sort of support. It can be done and i see the proof every day in my work.
I know MD, I have friends with severe CP who live indepandantly with carers. And I do get 12 hours respite a week. Its just I am grieving for the little girl dd should have been. I know it will pass. I wish I could hear her voice. The threads where non-SN people are freaking cos their child isn't talking at 1 make me sad cos I'll never hear dd's voice. And taking het to pre-school and watching the other 4yo's come running out and talking about their morning makes me very sad right now.
Totally understand - I think maybe summer is harder? (or does that sound ridiculous? I just mean mainstream children are running about, going places and doing loads of physical stuff.....)
Riven, like you i wondered what ds voice was like and i know you are just starting out on the sinemet but i am convinced once the dose is increased you WILL see changes in C, i told you before of the small changes in ds but the latest one, literally in the last few weeks is a few words..
"duce" (juice) "diece" (piece/sandwich) "ka" (car) "chay" (chair) "dad" (bit of a scunner as im a single parent)
and a few other sounds which he says over and over but i havent worked out yet!
keeps saying "drat" not sure if its supposed to be "that" or just a reflection on his situation
spoke to the SALT at his school and she said its very common to start words with a D as its easier and that lots of children with cp are severely delayed in their speech, ironically the communication people have just agreed to ask for funding for an eye tracker!
I know it may be impossible but there any way we can get you two out into the countryside together? What about if you and dh had extra help and came camping with us? Or used our big tent? probably no way but worth a thought?
I don't think dd will speak. At 4 she has no babble or recognisable speech sounds, just open mouth vocalisations. Starting sinemet when I get back. Shew' still having twitches so we#ve upped her keppra. Darent start a new drug until her epielpsy is under control. I hate epilepsy more than CP.
ds never babbled or made speech sounds before the sinemet either tho, so dont give up hope yet, it took him over a year of being on it tho, think he was up to 100mg of Levodopa a day before the sounds came and they have increased as the dosage increased, i know everyones different but hopefully it will be the same for you
cool, some hope then. She clearly understands labguage and vocalises often and appropriately but if you ask her to 'say yes' she struggles to get the sound out. Same with reaching, if you ask her, the whole initiation is an issue. She's starting on 5mg (have to dissolve the stupid tablets in water), going up to 10mg in 2 weeks. Her paed did say if he didn't see a quick result he didn't want to keep it going But I will tell him your story although he might claim your ds would have started words anyhow.
Riven, I'm also sending you <<hugs>> as this post made me very sad for you and your DD. I hope that the new meds will help, and also that you get some R&R and have a nice trip with DS2. (Speaking as one of those who's kids does talk, if not properly. Can't imagine what it must be like if they can't say a word! Heart goes out to you all).
riven, it was about a good few months before we noticed ANY changes but as it didnt seem to be having any side effects we stayed with it slowly increasing the dose till we got results the first thing we noticed was that before when he would reach for something his arm would jerk and shake and end up behind his ear instead of infront of him and after a few months on sinemet that got better until now it doesnt happen at all, this has probably been the most positive and useful thing for ds that the sinemet has given him.
dont let the paed take the easy way out and say it isnt working, stick with it if you can, as i KNOW its the sinemet thats working for ds as when he is ill or in one of his non eating phases the dystonic symptoms come back and his arms are all shaky and jerky again until we ramp him back up to his usual level of levodopa.
Nat there are various eye pointing devices on the market, the older ones use a dot stuck on the forehead or a laser pointer type thing at the side of the head which are only any use if you can purposefully move your head, which ds cant.
the newer ones pick up the reflection of light in the eye so you only need be able to move your eyes, the screen is usually symbol based and the user has to look at a symbol for a certain length of time to "select" it, basically its like using a mouse with your eyes. they can have various environmental functions added like playing music, switching on lights etc and can also browse the internet etc
the best and most expensive model (around £11,000) is the mytobii, this is the one ds has tried a few times
Riven she is still so young. dd took ages to get yes and no. but now her no is very clear. she can do mum but calls dh by his first name as it is easier to say. don't give up hope.
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