Here some suggested organisations that offer expert advice on SN.

what special need does your child have?........

(64 Posts)
anniebear Thu 25-Nov-04 21:06:41

Have just been looking at the photo's of some of your children, they are all gorgeous!

I just wondered if anyone would like to share what special needs there child has.

Yes, I am nosey!!!!

Just thought it would be nice to know what others have been through and some may find that their child has similar illnesses or needs, especially any new people.

I know that some of you already know one another well.

Apologies if this has been done before?


I shall start!!!............

My Daughter Ellie (a twin) aged 3 had Phneumococcal meningitis when she was 8 months old.

She was critically ill and had to have two Operations on her brain.

She went onto suffer brain damage to the right hand side of her brain, Hydrocephalus and then 8 months later was also diagnosed with a serious form of Epilepsy (Infantile Spasms)

We were told she was be severely brain damaged and disabled, but she is doing really well and is walking, running and stringing up to 5 words (we just need her to sleep now!!!!!!!)

lou33 Thu 25-Nov-04 21:22:10

dd1 was born with 2 heart defects and hydrocepahlua, also had gdd, she's all fine and dandy now, aged 12.5. Ds2 is 3y9m, has cerebral palsy, and is in a wheelchair

Socci Thu 25-Nov-04 21:22:46

Message withdrawn

fairydust Thu 25-Nov-04 21:26:21

dd is 2yrs 8months and has Cerebal Palsy wasn't diagonised until she was 13months old.

Can speak a few words but more seem to apearing just lately.

Has her own way of walking but has lots of accidents as is very clumsy (currently healing a fractured elbow)can't walk very far as her legs aren't strong enough.

Mentally is about 6 / 12 months behind but still manages to smile everyday for us

blossomhill Thu 25-Nov-04 21:28:19

Hi Fairydust Didn't realise you came on here!

Anyway Annie bear my dd has a language disorder and adhd. She is 5 years old and attends a maintstream school with access to a language unit.

Caroline5 Thu 25-Nov-04 21:33:16

dd2 is 3yrs 6mths and has global developmental delay, with no diagnosis. She has just learnt to crawl (even daring to crawl out of the room for the first time recently!), but can't walk yet. She can't talk, but does understand some words we think. She is a happy soul

JaysMum Thu 25-Nov-04 21:51:08

My "wee man" is 8 and has Dx of Semantic-Pragmatic Disorder, ADHD, Dyspraxia, Dyslexiaa, Learning Difficulties and ?ASD(Aspergers).
We are awaiting an appointment with a CP for Aspergers Assessment - although we are fairly confident that this will be his DX.
We removed him from mainstream school and have been offered a placement at the local special school in Sept 05 - in the meantime I am home teaching him and he is coming on in leaps and bounds - apart from his speech which is his main problem.

coppertop Thu 25-Nov-04 21:52:14

Ds1 is 4yrs old and has autism. He was a late talker (about 3yrs old) but apart from a few oddities his language skills are just about the same as his classmates. He has a few sensory problems but seems to have found his own coping mechanisms for these. He's a very happy little boy and loves his mainstream school. He doesn't need a statement yet but it's still a possibility for Yr1.

Ds2 almost certainly has autism. He has seen the Paed and is now just waiting for a full assessment. He is 22 months old. He can say a few words but doesn't use them to communicate yet. He is very active and likes to be moving at all times. His current 'thing' is spinning - either spinning toys or spinning himself. He's a very happy and cheeky little boy who I suspect is at the higher-functioning end of the autistic spectrum.

heartinthecountry Thu 25-Nov-04 21:58:17

Well done for starting this thread anniebear. I had been thinking it would be helpful esp with so many new people.

My dd has Aicardi Syndrome (v. rare genetic condition) which means learning disabilitiy and epilepsy. She is 2, isn't crawling or walking or talking but has a few makaton signs and I think understands quite a lot. She is a lovely sweet natured smiley little soul.

You can read more about her here .

coppertop Thu 25-Nov-04 22:07:27

Quick hijack to say that dd is such a gorgeous little girl, HITC. I think that if I was a mother searching for info and found your story then I would feel every bit as hopeful as you did when you first read about little Erin.

heartinthecountry Thu 25-Nov-04 22:14:33

Thanks CT .

Dingle Thu 25-Nov-04 22:25:49

My dd is just 3 and she has Down Syndrome. No major health problems although she did have a moderate hering loss in her first year which has been OK since then.
She is "hyper mobile" although this is just my interpretation!! and walks with hyper extended knees.(a cross between bambi and the little robots!)and has just been fitted with AFOs.
Doesn't speak much but is becoming very vocal! signs over 150 signs and has just started signing 3 words together.
She is cheeky, bright and a little monster in disguise! (like most 3 yr olds!)
great thread-I do have difficulty remembering who's who!

Thomcat Thu 25-Nov-04 22:30:44

HITC - wow, what wonderful, uplifting, positive wods. I thin you should try and get that printed in a national mag. Aloha, Jakbrown, can you do anything?

She's also amazingly beautiful, truly, truly, truly.

Good thread anniebear.

My daughter is Lottie and will be 3 on 17 Dec 2004 and has Down's syndrome.

misdee Thu 25-Nov-04 22:35:39

HITC, that is a beautiful piece written about a beautiful little girl. I hope your story gives hope to anyone out there who finds out their child is affected. I am close to tears.

eidsvold Thu 25-Nov-04 23:00:43

that is lovely hitc.

I have a 2y 4month old dd with down syndrome, also born with heart defect but heart is just like a normal one after two open heart surgeries at 8 weeks old.

Absolutely lovely, cheeky monkey, wearing me out ( can't believe I want her to walk - she is soo mobile as it is )

a little about us

Dingle Thu 25-Nov-04 23:19:26

eidsvold,,she whispers, I've just become treasurer of a new local DS group, do you think LOADS would help out with info if we need any?

Sorry to hijack!

beccaboo Fri 26-Nov-04 00:06:43

Good idea to start this thread anniebear.

My ds will be 3 on 8th December. We don't have a full diagnosis yet, but he has an ASD we think. He wasn't talking at all age 2, but has caught up a lot now and can string 4-5 words together. He's a happy, affectionate little boy, and full of fun. He goes to a mainstream nursery.

KangaMummy Fri 26-Nov-04 00:50:11

DS2 is 9½ years now

A surviving identical twin. DS1 died aged 5½ hours old

They were born at 27 weeks { + 5 days} gestation

DS1 was 2lb 13oz and DS2 was 2lb 12½ oz



DS2 was in Neo-natal ITU for 3 months on oxygen

He had 2 ages {actual and corrected 3 months apart}

He has recently been diagnosed with:

Dyspraxia, hyper-mobility, weakness in leg muscles, language processing delay.

He also had a fainting and seizure episode in school a couple of weeks ago that is being investigated.

He is a really determined young man and we are really proud of him

eidsvold Fri 26-Nov-04 06:38:54

dingle - have sent you an email

SantaFio2 Fri 26-Nov-04 07:09:43

kangamummy, sorry for the loss of your son {{}}} lovely to hear that ds2 is making good progress though

my dd is 5 and has microcephaly, moderate/sevre global development delay, hypermobility, hypotonia, squint and long sighted

she can walk, run, say single words, some small two word sentaences, signs makaton, uses second stage pecs and is getting on well with her toileting program. She is a very happy bunny! Atennds a SLD/CLD school. Currently having genetic counselling and smith- lemli-opitz syndrome is being tested for but I really dont think it is thast ( so kick me if I am wrong!)

jakbrown Fri 26-Nov-04 07:49:07

HITC, what an amazing story! She is so gorgeous.

As you all probably know by now my daughter Livvy has a diagnosis of classical autism and severe learning difficulties. She is nearly 4. We first realised something wasn't right at 8 months (she had a 'crash' following an ear infection) but thought it was a hearing problem for several months. She blossomed into her autistic self in the second half of her second year (became noticeabley stimmy and lost eye contact). Livvy ahs been doing an ABA programme for a year and a half now and I can't believe the difference. She is starting to use PECS, has a few signs and has learnt cause and effect and is almost pointing (ha!). For Livvy, this is miraculous. But probably the most amazing change is her social interaction. She is so smiley, cuddly and comes up and looks you right in the eyes and gives you hugs. Also, as she now thinks everything is a toy that needs switching on, she presses your mouth with her index finger to 'switch you on' and make you do funny noises! I am so, so proud of her. Feel quite tearful writing this!

chonky Fri 26-Nov-04 08:58:16

Dd is 7 months old and has partial agenesis of the corpus callosum, sight problems (nystagmus, squint & partially sighted), gdd with hypotonia.
Gutted today as we went to see a clinical geneticist last night who has told us that he thinks that her symptoms are part of an autosomal recessive syndrome, and that there may be a chance of 1 in 4 recurrence, so has told us no more kids for the moment He also is testing her for conditions where her muscles just don't have the right biochemistry, so her motor probs may never improve. Am trying to be positive and realising that they're just testing for these things and her probs may not be this at all.

HITC, your daughter is really, really beautiful. All the photos are great, but the one at the top of the page is just stunning.

Kangamummy, so sorry to hear about the loss of your son, but very happy to hear that ds2 is doing so well.

SantaFio2 Fri 26-Nov-04 09:31:03

chonky slos is recessive too, so no more kids for us atm either. If you ever want to chat feel free to CAT me

jakbrown Fri 26-Nov-04 09:40:20

Kangamummy, I'm really sorry to hear about the loss of your son . So glad ds2 is doing well. Chonky and Santafio2, hope you are able to have more children in the future

3mum Fri 26-Nov-04 09:56:43

My DS1 is 6 and has ADHD and aspergers. He attends a mainstream school with one to one help. He has some language difficulties but his speech is reasonably clear.

I can see some of his tendencies in my 3 year old DD (mainly the ADHD and she certainly has some (hopefully fairly mild)speech and language issues) - waiting apprehensively for when she starts school next year

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now