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

[anniebear]

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!!!!!!!)

[Blu]

DS, 3.5, has Fibula Hemmimelia - absence of a fibula (the bone behind the shin), with associated discrepancies such as talipes-like foot, small foot, 4 toes and his left leg is sinificantly shoreter than the other.

He has had very succesful surgery which has enabled him to put his foot flat to the floor, and now manages to walk really well in Piedro boots with a lift, and uses a night splint.

We are in a 'coasting' period atm, with little disruption to his or our lives. But as he grows, he will need bone-lengthening surgery, perhaps twice, which is very very daunting - our fingers are crossed in hope that his short leg will contnue to grwo at the same rate as the other, as if the discrepancy increases, we will have to consider a prosthetic leg.

For now, his complete laqck of fear, and his spirit for life make me feel quite a charlatan on these boards, every time he zooms to the top of the 'big boys' climbing frame. Spiderman has a lot to answer for!

[aloha]

HTC, can I just pop in to say how exceptionally beautiful your daughter is, and I can totally understand why you say she is bright - her expressions are so intense and perceptive.
What a gorgeous girl.
Jakbrown, I also write for You and remember your story. I can very clearly remember what Livvy looks like because I showed her picture to dh and we talked about how lovely she was.

[Eulalia]

Thanks for starting this anniebear as sometimes even though we chat a lot we don't always know everything about each other.

My ds is 5 and has autism although it is fairly mild and he goes to a mainstream school with support. He has a language disorder and is waiting for speech and language therapy.

Oh yes and he also has joint hypermobility and wears splints for his feet and ankles at school.

[anniebear]

Just thought I would add our web page about Ellie

I have done it before but back in the summer.

Apologies, it really needs updating, someting I keep meaning to do!!

Sorry, you will have to copy and paste unless some clever person can do a link (please??!!!!!)

mysite.wanadoo-members.co.uk/EllieOurSpecialGirl


Thanks

[Eulalia]

heartinthecountry - just read your lovely story, very beautiful. I love your daughter's name.

And yes you are right we aren't all saints!

[luckymum]

My dd has complex congenital heart disease, affecting her left coronary artery, 3 valves and her pulmonary artery. Prior to her dx she had two heart attacks. She also has a leg length discrepancy caused by an embolism post surgery. She battles on to get the most from life and came home from school last night to tell me that she is swimming in the school gala next week >

HITC - your dd is gorgeous. Kanga - I too am sorry for your loss, your ds sounds like a star and I hope you get some answers on the seizure soon.

[meea]

Ds2 is 2 years 7 months and has gdd we still don't have a dx as to why.
He can walk but falls easily.
He has problems with expressive & receptive language he also has problems with sounds.So he is really struggling to communicate .
He is roughly a year to 6 months behind in his development.

[pixiefish]

annibear's ellie here it is for you anniebear- gorgeous little girl

[dinosaur]

My DS1 is five years old and was diagnosed as being on the autistic spectrum when he was three. Like Coppertop's DS1, he was a late talker but his language skills are now on a par with his peer group although he does sound a bit odd. He is doing well in mainstream school without a statement at the moment, so much so that most of the time I feel like a bit of a fraud on this board now. He does still have some sensory issues and difficulties with practical things - at the moment it's using the loos at school!

My DS2 was born with talipes and was treated very successfully using teh Ponseti method, so I always keep an eye out for any other parents of children with talipes.

[Blu]

Go, LuckyDaughter, Go! So pleased to hear that, Luckymum

[SantaFio2]

thanks jakbrown! I have got another ds though so i suppose I should be grateful that I have two beautiful children. Tbh I didnt want any more children before they told me dd's problems could be recessive suppose there is a difference between not wanting any more children and being told you cant (or it will reoccur) iykwim (this is what my counsellor FF told me anyway )

[anniebear]

Thanbks Pixiefish!!

Anniebear

[milge]

My dd is 2yr 1mo,the elder of b/g twins, ds is developmentally normal. Like a lot of kids on here, got a dx of global delay, about 12 months physcially, and 15-18m mentally. She is just cruising now, and am confident she will walk unaided by the time she is 3. She has hypermobility, hypotonia and macrocephaly. She communicates using her own basic sign language, and has got an unofficial dx of being on the AS, which will be formalised on thursday when she sees the autism consultant. She doesn't appear to understand anything we say, and doesn't respond to her name. She loves boucing, on the springs of the sofa, on swings, and on her trampoline. She will bounce for hours if she is left alone. She has periods of absence, where she just lies on the floor with her fingers in her eyes and doesn't "come to" for about 20 mins.
Loved the link about hic's dd, its too easy to focus on their problems and forget that they are people too, not just conditions...

[pixel]

My ds is 4.5 and has autism and severe learning difficulties. He is non-verbal, still in nappies and has various sensory issues. He is also cheeky, funny, loving and sweet-natured. Oh, and extremely handsome!

[onlyjoking9329]

i have twin girls aged 10 both have autism and learning disabilities, they were DX at 4 years 4 months, my son is seven, he was DX at 2 years six months with autism, so we had three DX in 14 months.

[Jimjams]

DS1 is autistic. At 2 he was diagnosed with mild language delay and we were told that he "definitely isn't autistic." At 5 and a half he is still non-verbal and is clearly fairly severely autistic. He's currently in mainstream but will be going full time to an SLD/PMLD school from January.

[onlyjoking9329]

glad to see you got a place for him Jimjams, i am sure he will be happy there, keep us posted.

[blossomhill]

Being my usual nosy self jimjams but what does PMLD mean??? I know it's XX learning difficulties!!! Thanks

[jakbrown]

Profound And Multiple Learning Difficulties, I believe, Blossom

[blossomhill]

Thanks Jakbrown xxx

[jakbrown]

ps Pixel, our children sound like soulmates!!!
Wait until they get together in the unit (they will be the same year if Dd gets a place)...
He sounds like such a sweetie

[Saker]

Ds2 doesn't have a diagnosis but has global develomental delay. He is aged three and language is assessed at 28m, and motor skills at 18-24m. He has difficulties processing information and with motor planning.

[mieow]

DS has spastic diplegia CP and DD1 has SD CP, speech and language delays, learning difficulties, and behaviour issues

[rivers]

My DD was born at 26 weeks (weighing 1lb 11oz). Due to a floppy airway she has a tracheostomy and is fed via gastrostomy. She communicates through Makaton and is meeting most of her physical milestones. Wonderful, strong little girl who has battled so much in the first few years of her life but remains so happy!

[Posey]

I don't normally post on the special needs boards because I really don't ever think I could add anything useful, but this thread caught my eye. I really still can't add anything useful, but the messages were uplifting in many instances and the photos adorable.
Thank you for sharing them.