Developmetal Delay

[808state]

Hi

Was wondering if anyone else out there has a child with a "mild" form of developmental delay?. Our son was diagnosed with this (and a degree of speech and language delay) at 2.5 years. DS is now 5 and is doing well at school and is liked by his peers who see him as no different from anyone else.

Still feel guilt about all this but emotionally speaking I feel better these days. It's taken a long time though to walk through the dark valley.

Good recent news that I've had is that after 14 months of fighting we've now got a statement for DS so he will get extra support in Year 1 (his concentration is the main problem now).

He is also a very faddy eater although this is slowly improving.

Congratulations on winning the fight for a statement. Try not to feel guilty - easier said than done, I know!

My ds1 (nearly 4yrs old) has high-functioning autism and had/has a speech/language delay. He started talking at about 3 and still has speech therapy.

Just re-read that and it looks as though I mean "Don't feel guilty about the statement"!!! Must pre-view posts in future...

Why do you feel guilty? I'm sure you will get support on this board.

The SN board is a great place to visit. It's the perfect place to have a rant or a cry and people ALWAYS understand why the little things are so important. And then of course there are the wise oracles who always seem to know of the perfect website or book to answer your questions.

What do you feel guilty about? I feel guilty every day that I'm not doing "enough" whatever enough may be- although davros made a good post about that recently (ds1 is 5 and non-verbal autistic btw). I think that guilt goes with children, and it goes in triple helpings with SN children (especially as the pros can be so dammed insensitive!)

Welcome to the board anyway- and faddy eater? We have one too

Jimjams, you are so right. I could have written exactly the same re the guilt.

glad you feel better 808state. My daughter has moderate global delay and I feel as though things are slowly getting better, she is 4 now. The level of my acceptance of her problems has grew rather than her being super forward now iykwim. I have just got used to the way things are and are going to be.

My friend on the other hand had a child with 'mild' delays and she still feels guilty now about not giving her the right support, she is 6. She is doing well at school but still sometimes needs 'extra help'. She unessasarily blames herself like we all do.

Dino - I go over the same things too, especially the 'not noticing' something was 'different' about my sn child. I think that must be quite common when its your/our first child.

hmmmmmmm I didnt mean that to sound like me and dinosaur had a child together!

Fio - And there was I thinking I'd missed a bit of SN gossip!

I can definitely relate to the feeling of thinking that I should be doing more for ds1. I think part of it goes back to those well-meaning comments people made pre-diagnosis of "You should talk to him more" or "You should make sure he mixes with other children more."

My youngest DD (aged 2 yrs 7 months) has global development delay in gross and fine motor skills and speech. This was picked up when she was 9 months old. She has been going to nursery twice a week since last October and she is progressing wonderfully (although still not speaking - has a few odd words and comprehends wonderfully but just can't communicate). Her fine and gross motor skills have come on too, now walking, running, jumping (to a certain extent), stands on one leg.

The specialists have been unable to find any underlying cause for her "development delay" but we are currently awaitings results of her dna and chromosone test (blood tests carried out the day before Christmas Eve) and she also had a MRI scan and pituitary gland check back in March for which we are still awaiting the results.

She has portage once a fortnight (her needs are not that great - other children have a greater need of portage - so they tell me!!) and sees a SALT - to be honest, she is not much help either. My portage worker has starting preparing the statement of special needs in preparation for when my dd starts mainstream nursery (next September 2005). She has said that if she has caught up and doesn't need the funding, then it is no problem, but if she needs extra help at least the funding will be in place to start with.

My youngest DD is loving, sociable, friendly, outgoing - just "young" for her age.

Hi everyone,

Thank you all so much for your messages - they mean a great deal to me. I do not feel so alone now.

I have felt a lot of guilt in the past because I felt, rightly or not, that I was the cause for his delays (I had similar problems as a child). I would very, very much like to know what actually caused this delay to happen but that will remain unknown so I try not to dwell on it anymore.

Bumblelion - am glad to read that your daughter is making such good progress.
I know exactly where you're coming from when you talk about her "being young for her age" and "motor skills" (these were an issue with DS as well; particularly fine motor). BTW we were never given MRI scans or any such tests; just given these diagnoses. I have heard of this term "portage" also but this was never mentioned to me either!. DS attended a "developmental playgroup" at 2.5 years of age alongside going to preschool and that did him wonders in terms of making progress.
He is now 5 and is getting a statement (after much fighting!), I sincerely hope the help that you require for your DD is more forthcoming than it was for us even though we were fully supported by school amongst others like the ed pysch.

My best wishes to you and your families

808State - Luckily I have never had to fight for any help for my DD. My Health Visitor referred us to the development clinic at the local hospital and it is through the development paediatric department that she has been referred for portage, occupational therapy, physiotherapy (no good for her - she is too flexible - double jointed in all her limbs), various scans (bone scan, spine scan, MRI scan but this is more to do with the fact that she used to have a "funny shaped head" and we were referred to Great Ormond Street).

Because we were referred to Great Ormond Street (no longer wish to see us as she doesn't have what they thought she had), they are still going down the route of trying to find out what exactly is wrong with her.

I am a bit like you - at first I blamed myself - went through a horrible pregnancy in that me and my husband (now ex) were in the process of separating and I was rather stressed, upset most of the time.

I feel that as long as DD can develop as much as she is able to (if that makes sense - I just want her to reach her full potential) then I will be happy.

bumblelion - what did they think she had? just wondering because your dd sounds like mine did and they thoughtshe had retts, which she didnt. Just wondered what they thought?

Fio2, they thought she had synostosis which is where the plates in the head fuse too early. She had a "funny shaped" head from about 4 months of age, my doctor told me it was nothing to worry out and it was only when she failed her 9 month check that they picked up on her funny shaped head. Did skull x-ray (which couldn't rule out synostosis) and spine x-ray as my health visitor thought she was "wonky" (her words, not mine). Her spine x-ray came out fine (found out since she is double jointed/loose limbed in all her joints and that is why she looked "wonky". Because the skull x-ray couldn't say one way or another whether she had synostosis she was referred to Great Ormond Street. We were referred to the cranio-facial department at GOSH and the doctor we saw was wonderful. Said that she categorically did NOT have synostosis - her funny shaped head (flat at one side on back, protruding on opposite forehead) was caused by her sleeping too much (up to 20 hours a day at 8 months).

Because Syn. can cause other problems, along with the appointment at GOSH we were referred to the eye hospital (which we are still under). Her right eye lid (the side of the slight "swelling" - if that is the right word) very slightly covers part of her eye - not enough to notice, but still there all the same - looks a bit like a droopy eye lid but saying that it is slowly improving with age.

Still not found out cause of delayed development - they are now looking at brain activity - she was deprived of oxygen at birth slightly (could have been 10 seconds or 10 minutes) - can't remember time scale, was a "blue" baby, had to be suctioned. They gave her to me to "bring round", then took her off me (after what? period of time) and brought her round themselves. Couldn't keep her body temperature up and was a "twitchy baby".

she does sound like my daughter, I must say. My daughter has loose/double jointed limbs called hypermobilty and hypotonia-low muscle tone. She had a funny shaped head which is now officially mild microcephaly which means she has a small brain/head. We had all those scans aswell but nothing was found, well only that her brain was perfectly formed but smaller than usual. She is under the eye hospital aswell for a squint and long sightedness.

I also had a bad birth with her and she had a 'dusky' episode following the birth. We personally think this is what has caused our daughters subsequent problems but answers do seem hard to find! Our dd is doing well though and your dd seems to be doing brilliantly

Fio2, they both sound very alike, in everything. I note from one of your posts that your DD is 4, my DD is just 2.5 so I am sure she will improve more and more as time goes by - she has come on so much in the last year, and even more in the last 6 months, and every day/week/month sees her accomplishing new skills - co-ordination and dexterity being her latest - building tower of bricks, picking up small objects, etc.

The one biggest concern I have at the moment is her (lack of) speech - only about 5 discernible words (discernible to me anyway), no two-words together although she has started making singing noises.

I suppose I just feel that her biggest "delay" is the speech - everything else she is behind in, but not to so much an extent.

yes speech is my dd's main concern now, she is not even classed as physically disabled now as far as the education system is concerned. Are you using makaton? I know our daughter has found this very useful. there is a book and stuff you can buy on ww.makaton.co.uk, just google it. They soon pick it up. Our dd has started using pecs aswell, but this is early days as far as pecs is concerned. i am glad your dd is making such progress, its lovely