Significant Developmental Delays Please Advise

[rosie1977]

My DS is 3 and a half now and last month we went to the hospital for yet another appointment to try and find out why our DS is slower than most (i hate to compare) His results came through today and I am heartbroken. Of course I knew something was wrong, i have been saying it since the day he was born. But now i have proof.
He is the loveliest of children but i cant help but worry for his future. Im not sure how i can help my DS further we already spend a good couple of hours a day talking, drawing, shapes, drawing lines etc.

Here are his test results if anyone has any more suggestions on how to help please advise me. He is the youngest of 5.

Chronoligical age 3 years 5 months,
Locomotor 2 years 10 months,
social 2years 4months
hearing and speech 21months
eye hand coordination 2years 10months
practical reasoning - no score
From the above it is clear that little dude has general developmental delay significantly delayed in hearing, speech and social skills. He did not score for practical reasoning scale which is highly influenced by the speech and language scale.

Many thanks in advanced.

OK no knowledge but couldn't read and not post. I am sorry you are going through this. Could there be an underlying hearing problem that would contribute to all the others? Perhaps you've looked into this already but my DS had speech delay because he basically had no hearing. He's now had grommets after a big fight with the hospital and his speech has appeared out of nowhere. I think he probably is a little behind in the other areas you mention (have not had him assessed) but I put that down to the year he spent battling the hearing problem.

Hope someone can help.

Oh what a horrible day you've had :( My dd1 was diagnosed with a form of cerebral palsy when she was just over 12 months adjusted, so I can relate to how sick with worry you must be right now... Has he been given a diagnosis that's a bit more specific than global developmental delay? What has made you think something is wrong since he was first born?
What kind of intervention have the doctors talked about? I'd try and push for referrals to speech, physio and occupational therapists to help with his speech and gross and fine motor skills. I would imagine once he becomes more competent and confident in those departments, his social abilities would automatically improve as well. Sorry I'm probably not being very helpful here as you'd no doubt appreciate more practical ideas, but I do think your son should be entitled to professional help on top of what you're doing with him at home.
I know the sick feeling in your gut is probably over-powering right now, but it does get better and you will feel more positive once you've acclimatised to the test results and proper intervention is set up. Sending you a big hug!

Where abouts to you live? Pm me if you prefer.

rosie, post on the sn board as well. there are loads of people with littlies with no specific dx. and lots of people whose dcs have gdd.

it does get easier.

dd2 was gdd from birth and dx cp at 2.

Sorry that I have no advice, but I just wanted to offer you a big virtual hug as I imagine you're feeling pretty low. Just keep loving him as much as you do and keep on at the doctor/hospital for specialist care and I'm sure there'll be lots that can be done to help him on the path to a bright and happy future. xxx

Thanks everyone we are in Scarborough and have to travel to Hull and Leeds as well as Scarborough for his various hospital appointments.
I dont know why I felt something was wrong when he was born it was just instinct. He was always asleep, i would have to wake him to feed him, he eats well now but he went a whole year between 1 and 2 of not growing and now he is 3 and a half he is a great massive 86cm tall.

The various consultants have mentioned his curved pinky finger and his small head size and have all said its significant but they are yet to diagnose. Added with his developmemental delayed my gut feeling is something associated with Autism but i have to admit thats just my feeling after research done on the internet.
He will be going to speech therapy as soon as the appointment comes through but im guessing I will have to contact HV to make them get a move on.
Im sure DS can hear me but once again we are waiting for an appointment for a hearing test (everything we have done seems to take so long).

He is having genetic tests done but they take a year due to the waiting list.
So far we have 5 different consultants and hopefully 3 therapists to help him.
Many thanks for all your replies i am going to contact the health visitor to try and get some movement on the speech therapist and the hearing tests.
Time for a cuppa I just found out he starts school in September. He is so short he can barely sit at the tables as it is lol. Not funny but i cant cry no more.
Thank you everyone.

Oh and please what is the sn board. Not too good with these abbrevaitions. I feel dumb lol

special needs board

rosie there is a thread on the SN board for parents of children trying to get a diagnosis. I can't link to it right now but if you look on the SN board you'll see it on the first page. Lots of us all going through the same thing. My DS is only 10 months but is significantly delayed and the specialists suspect genetic syndrome of some kind - as yet undiagnosed and going through testing.

Does your DS have physio, speech and language therapy and occupational therapy? If not your health visitor should be able to get him referred. Bless him with the school desks . Are you happy with the school he'll be starting at? If you want advice re statements etc the SN board is the place to be.

thank you will go check it out. DS has hijacked my knee for his nap as usual. i will miss his snores and the sleepy dribbles.

His school are brilliant and i know they will support us as a family as well as DS when he starts. Nursery teacher made copies of the letter and immediately contacted special needs teacher at school.

So sorry about the problems with your son. Yes a mum knows when something is wrong. Not all mums get a diagnosis so early on though. I can't say that he will definitely catch up but your input will make a lot of difference. Enjoy him. He will make up for it in so many ways.

Hi Rosie. Your son sounds v like mine,who is also 3.5yrs, has Global Development Delay, bent pinkies & is small at around 86cm-spooky hey! Some professionals wanted to do an ADOS test as he had some traits that are common with autism,but we have not gone down this route as we believe a lot is down to his delays.

We have not got a diagnosis,despite genetic testing. We have now taken the view that we don't need a diagnosis,we need to help him based on the 'symptoms' we see.

So we attend a child development centre (we are in SW) where we see physio, SALT, Music therapist, and best of all an OT. The waiting lists for all of these were epic! Ot has been fantastic & I would push for your son to see an ot with experience in Sensory Processing/Integration. We also do riding & swimming for strength.

Communication wise we use lots of visual tools like pictures & Makaton signs (mr tumble rocks!).

Our son has made fantastic progress but its a long slow road & I really do
understand how hard it is. I found the book 'small steps forward' by Susan heyward (i think) v useful.

Also check out Portage - v useful esp in helping you access other services.

Sorry for the epic post!

Sorry,forgot to add, we also do the Snowdrop Programme (run by Andrew brereton-they have a website). Cannot recommend highly enough.

OP, you last posted in Feb 2012, have you had a diagnosis yet? Any news?

Oh grrr,that'll teach me to read the date!

You've got me wondering now. I wonder if she's got another thread. 3.5 years of disabilities including physical problems, without a diagnosis is not right at all.

Yes,hopefully OP is further along than she was in Feb, best wishes OP if you do see this!

achillea it's not right having to wait so long for diagnosis but unfortunately it is really common!!

op if you come back to the thread i hope your ds is doing well and you are getting some support for him

i'm in the same situation with one of mine too