Hands Up Everyone

[lou33]

Thanks to Tech we now have a special needs area, so maybe we should all start off by saying which of us have special needs kids and what their disability/syndrome etc is?

I know I've said it so many times, but my youngest child has cerebral palsy, spastic diplegia. He was 2 at the end of February. He has great speech, good fine motor skills,and is extremely gorgeous, but cannot sit up unsupported, stand or walk. He can commando crawl, but only manages a bunny hop if he goes onto all fours before slinking back onto his tummy. His trunk has quite low muscle tone, which makes him flop forwards, and his spasticity makes it hard for him to straighten up again. Wears glasses and has a squint.Used to be allergic to wheat, dairy , soya and disposable nappies, but the wheat one seem to be conquered now. Suffers from extreme shyness in the presence of anyone not in his immediate family, and currently screams his way through an entire physio session each week unless we stop and let him play cars.

He has the funniest sense of humour, I have never heard another child laugh as much, and is obsessively devoted to his daddy. His hobby is watching Gareth Gates singing Spirit in the Sky, and trying to mimic his arm actions (I know all the moves off by heart now too!). Has recently developed a new interest in Justin Timberlake in the Cry Me a River Video, and likes to try and sing along to that too. Am slightly concerned that he loves GG a bit too much, after he recognised him in a 1 inch picture in a newspaper, saw a poster of him at Asda and refused to be moved from it, and thinks the young lad on Eastenders that plays Spencer is him too!

Hi all. Well I'm sure I've bored you all senseless elsewhere. DS1 is autistic. His main problems are with language and speech- especially speech. He probably has verbal dyspraxia so he does speak but only in Martian, and then only if he knows you well. He also has bad fine motor control, although that has improved a lot recently (thank you fish oils).

He is very affectionate, loving, funny- has a great sense of humour. At the moment he likes climbing on to tables- he waits for me to see him then says "get down" and kills himself laughing.

He screams quite a lot- usually from frustration or because he hasn't got another way to communicate when he's fed up. He's a "good boy" though. Hates being told off- and gets really upset if he thinks he's done something wrong- bit over sensitive. His younger brother on the other hand thinks he can do anything as long as he smiles.

How nice to have our own section......

Oh and his "special skill" (for those of you who like Rainman-lol) is music.

Hi all. I have 2 children with CP and a baby 18 months. DS has SD CP and speech delays, DD1 has SD CP, hearing problems, speech delays, difficulties swallowing, and has supected progessive hearing loss, and water-on the brain.
She was born prematurely at 31 weeks and was very ill.
DD2 is fine.

My dd was born 7 weeks premature after an uncomplicated pregnancy until the day before her birth.(She was breech from week 15 all the way).DD was born by emergency c-section and was diagnosed with a dislocated left hip shortly after birth.In Dec 2002 DD was diagnosed with cp diplegia although specialist will confirm if her arms are also affected when she has CT SCAN later this year.
DD spent nearly 3 weeks in special care unit.My dd is now 2 years 7 months and the last last year has seen many changes in her.In April last year she would not even put her feet on the ground-now she is walking around with the use of her rollator(wheels in her language).Lou33 last year my DD could scream all the way through an hours physio-now when H(her physio)comes she looks forward to getting "strong legs" and works for her sticker from H and a small parcel lovingly sent by Nanna and Grandad that arrives the next day-most times the parcel only has a packet of 10p sweets or a colourful hair bobble and the postage costs more but the incentive is there!
DD has great speech and is getting there with fine motor skills and on the recent statementing assessment they were amazed at her vocab and say she has a slightly above average IQ(wow she has been praised for something at last!)
DD recently started a playschool and after Easter I will be able to leave her as they have been given funding and have employed a Support Worker(although dd is adamant that muumy is staying at the moment).DD is very strong willed and I WOULDN'T change her for the world.
Will post more later but Balamory has finished so time's up...we're off to the park..chat later

My ds age 7 years has finally been diagnosed as having DAMP - Defecits In Attention And Motor Perception. It's a combination of ADD and fine motor skill problems. It's taken us 4 years to get some kind of diagnosis. Originally the professionals thought he had autism and he had speech difficulties relating to semantic pragmatic disorder. He may still have this as he is still being assessed by a speech and language therapist. It took us 2 long years of getting him statemented due to him being assessed on the Early years criteria not key stage 1 as he should have been, this held up the statementing process by another 6 months.
The change in my son is incredible. His learning support assistant (who is absolutely wonderful) works with him each morning, totalling 12 hours a week. He has an occupational therapy programme set up. The speech and language therapist has also set up a programme for him to work on. In the last couple of weeks he is learning to read books and his writing has improved due to the occupational therapy.
It has taken us so long to get this far and I am so proud of him. He is a beautiful boy - my friends think he looks like a mini Gareth Gates. The children in his class adore him, and the teachers who come into contact with him. Ds is very affectionate and tells us he loves us everyday. He is incredibly special.

Hello to you all and thanx tech for section. As you know my ds2 is nearly 6.We have no diagnosis. He is wheelchair bound.He can't talk but I have learnt what he needs by his moans.He is fed by stomach tube. He eats little orally. He is also on growth hormone which have made the world of difference to his muscle tone.The doctors have told us his hypothalamus is not working properly.His temperature control is not working properly. We think he has epilepsy but only mild.Despite all the probs we treat him likr the other kids and love him dearly. All he wants is cuddles and he gets plenty of them. Oh he loves school aswell. School has really brought him on.

Hi, my second dd who is nearly 2 has undiagnosed developmental delay in all areas, particularly gross motor skills and language. She has an unusually small head (microcephaly), due to slow brain growth. The cause for this is probably genetic.
She can sit unsupported, but cannot crawl, roll or walk. She has a walking frame to help her stand. She says a couple of words (mama and boo!) and her fine motor skills are quite good. She has a squint and possible hearing loss. She is usually very cheerful and loves cuddles too, and (though I'm biased) is very pretty!!

I thought there were more of us here?

Mieow, thanks for the tip about the support group. Your kids have lovely names btw!

Forgot to ask, do you ever use the chat room?

Caroline do you have growth charts for head circumferance over the age of 2? My friend is trying to track some down. Her daughter has many problems including a small head- it's always been about 2nd centile (she's 75th for height/weight) but she now suspects it may be smaller. She's 6. I think my friend is trying to get to the rroot of her dd's problems and if she has official microcephaly it could be significant. Paed is being unhelpful!

Hi, this is my first time on the board, mu daughter is 10 and hadd strep b meningitis at 2 days old, she now has hemiplegia and had a fit 7 years ago after a battle with the consultant took her off meds 3 years ago and she still has not had a fit but he is adamant she is epileptic saying most hemi kids are. Anyway we got fed up with him and took her to see someone privatly who was brilliant, he said she has adhd this would explain her restlessness and lack of concentration we had thought this ourselves and finally found a consultant who knew what he was talking about. She had now been given meds for this and is like a different child its brilliant no more of the battles with physio or homework or arguing with us or her brother or sister and can sit still for more that 1 minute. Also she is so much happier in herself. thankgod we got a second opinion. I believe parents always know their child best.

Hello Rangers, welcome. I absolutely agree with you about parents knowing best. Well done for sticking to your guns.

Hello everyone, I have only just discovered the new section. As some will know from postings elsewhere, we have a daughter of 3 1/2 and a son of 14 months. Ds is apparently normal, DD has Down Syndrome, which usually means general developmental delay. In dd's case, it manifests itself in general learning difficulties, and glue ear and speech and language delay. DD is now at state nursery part time, has statement of SEN and so a support worker and is getting on well. The most surprising thing we are finding 3 plus years in is that there is a generally low level of understanding about the condition in particular and special needs generally. People are (to our faces at least) interested and well-meaning but even the school staff were surprised for example that she settled in faster than many 'normal' children (whereas we knew her of course, and expected her fantastic social skills to come to the fore (they have)) and I have had trained nurses asking me whether it's 'in the family'. We have broken off one friendship with a family who were openly picking schools based on the numbers of children with special needs enrolled (I know it goes on, it was more the manner they were openly discussing it in front of us before they had even met DD, plus it turned out their children needed remedial reading help, but that is another story!!) but made fantastic new friends who more than compensate. Yes we worry about the future but don't all parents, and we have beautiful, funny, individual kids who we love to bits. Life with a disabled child is different, often harder, but we wouldn't change it for the world.

sinclair- what hideous people- no wonder you broke off the friendship!

just type growth charts for head circumferance into your search engine. thats whatI just did..... I have just discovered that DD1s head is HUGE!!!!!!!!!!!!!! above the 98th percitile

Lou33 there used to be a chat night on sundays but it stopped a few months ago now. If you want to chat, just post a message saying that you're in the chat room....

I told her to do that mieow. She said it didn;t give anything- looks like I'll have to do it for her! Both my ds's heads are massive - ds1 is 95th and ds2 98th. The pead got very excited about ds1's at first- large head is linked to fragile x which can 'cause" autism. But then I told him to measure mine and he discovered mine in massive as well. Fragile X result came back normal. In the repots he got confused though and wrote that dh has a massive head- ha ha ha. Dh was most put out!

the pead. is looking into water on the brain with DD1

The Paeds so often get it wrong; they told us that our son needed grommits as his ears were blocked. When I said "NO" to any unnecessary ops hey presto his ears were unblocked. I also hate the way the docs look at us parents stupid when we spend every waking moment trying to find out about conditions. I think we know more than them sometimes..

we do know more than them doormat. Example 2 years ago I told the pros ds1 had verbal dyspraxia - was told he didn't. Last week was told ds1 has verbal dyspraxia. Now there's a surprise.

I think a lot of doctors feel intimidated by us nowadays, whereas it used to be the other way round. Our generation wants to find out as much information as possible and ask questions, something that just wasn't done years ago. Access to the internet has made it so much easier for us to find out the latest on any subject too, which could in theory mean we are more up to date than the doctor we are seeing, which must be very unnerving for them. It happens less now, but when dd1 was born (she's 11 this week) the docs and nurses were always asking me if I was "one of them" because I was so clued up on her conditions. I think it's my duty to know as much as I can though for my children and my sake.

lou- I remember half way through ds1's first assessment with an autism specialist SALT - when he was just over 2- she suddenly put down her pen and said "what do you do?". I was answering questions in a particular way- so for example she said "does he point out objects of interest" and I said "no but he does have joint attention because blah blah blah".

I think it's so important to be up on your childs condition. I've found that a lot of doctors a good diagnosticians (except of verbal dyspraxia-lol) , but not necessarily up on current treatments.

I remember clearly asked the consaltant at the local hospital if DS had Cerebral Palsy (my cousin has it mildly and it had got me thinking) and was told "NO, he doesn't, don't panic" we were then referred to GOSH and he was basically dignosed with CP within a hour, they had to rule out genitic disorder etc, but they knew that he was brain damaged!!!!!!!!

and then when we saw the consaltant here a few months later he said "so whats been going on with you, young man" to which I blutly said "he has CP" and then the stupid man said "well, I wasn't expecting that one!!!!!!!!!!!!!!!"

Mieow, now you say that I have a vague memory that when ds was about 8-10 months old hid consultant said the very same thing. She was trying to get us out of her room and not being very subtle about it, so was talking over us when we were asking questions, and in the crossover she said "we don't need to worry about cp", which I hadn't even mentioned. We only got his diagnosis when he was 16 months old, and I was asking her on the phone to tell me if he had cp, and if she didn't agree tell me why not? I think I only got it then because she knew we were leaving the area so someone else would have to pay for his treatments.