Global Developmental Delay Help please ?

[TUTS1]

Hiya
My story is my son who is 4.8 years old in reception has been having great difficulty with his speech and understanding. ( Has been assessed at 2 years ) . At nursery everyone thought it would come it just didnt . He then went on to have special nursery time lessons with speech therapists in a small group of under 5 people with at least 3 therapists per lesson he did this for a long time 3 days a week with very little success . He is now at school with some but not great improvement . I am in the process of getting him statemented and was warned learning difficulty would be the outcome . He also has fine motor skill problems ( Aged 3 years ) and his concentration is not great either . On the other hand he is v sociable plays well with other children and fits in in class The Paediatrician has come back with GDD ? I have read up what it means and quite honestly it doesnt really seem to mean a lot ?
Is this just something you get given before the learning disability or autism is assessed ? Or do some people have this and do they get over it ? I havent heard of anyone who has never talked . Lots who were delayed ? Im very confused and really im worried about what the future holds for my son I guess I want answers . Im sure noone can give me that but any exsperience anyone has had I would be v interested to hear about it .

GDD just means 'delayed in two or more areas of development.' Until they ascertain the cause of the delay, you'll be stuck with that. When he goes to school, he may well be given a 'learning difficulties' label instead.

I can't remember now whether DD1 (8.0) has officially 'moderate learning difficulties' or 'moderate learning disability'. She's the same girl either way.

HI - My son is three and was given this label before his autism diagnosis with learning disability. Hoping you can get some answers soon.

Your ds sounds like my ds who is 4.5 but assessed at 2 yr old level and in reception part time. He has recently got a statement for 20 hours. Like yours he is very sociable and he just seems to attract other children. Like you I am after answers. Previously told he had moderate global developmental delay now ed psych talks in terms of learning disability. As I understand it gdd is the label given upto about the age of 4 or 5 when it is unsure whether 'they will grow out of it' or if it is due to some other underlying health issue such as hearing problems or specific learning difficulty such as ASD. I have found very little useful info on the net, it's nice to hear from someone in the same boat. Has your ds undergone any testing, genetics or MRI to attribute a cause?

Hi, I have a similar little boy, he just turned 4. As others said, GDD is a descriptive term, which later changes to learning disability/autism or various combinations.

I dislike the 'delay' bit so much, since it implies our chikdren will 'catch up', so I just use learning disability if I'm explaining it.

My ds had genetic testing, nerve conduction studies, MRI, lumbal puncture - all came clear, no 'reason' for his 'delay'.

Around 50% of children with LD there is no known cause, but if there was no birth trauma/ infection/ accident, genetic condition is suspected - we are now part of Deciphering Developmental Disorders genetic study.

It's very difficult not to know what the future holds :(. I hope everything goes well for your boy, it's great he is getting statement.

What others said.... I would treat it as asd and pursue intervention and diagnosis.

Babiki- where did you get the lumbar puncture done? Did they test for Folate deficiencies?

Salondon - in GOSH. No idea about Folane - will check out the report.

DD was diagnosed with GDD at age 3. We were told she was 'educationally subnormal' and that she would be unlikely to go to a mainstream school.

By age 8 she was within the 'normal' range of development in most areas.

At 9, her speech is still a little immature and her large motor skills aren't brilliant, but she is about middle of her (mainstream) class in her academic subjects and has no social communication difficulties. Her brother has ASD and I don't see any traits in her.

I'm trying to think back to what DD was like at Reception age. She did speak at home, but not in full sentences yet. She didn't speak at school for the first few weeks but then gained in confidence. She had been discharged from physio but went to gym club to improve her coordination.

Please don't think I'm criticising other posts but what you are describing doesn't sound like autism to me .it is possible to have learning difficulty without autism and the sociability doesn't sound like suits to me .i could be wrong thougj

Sorry like it to me stupid autocorrect

I must say that I agree with autumn. Gdd/learning difficulty does not always accompany ASD. Sometimes I think it's the level of development that the child with gdd is at that means they can be wrongly construed as having ASD. Ie my 4 year old is currently displaying the single mindedness, inflexibility and meltdowns that you might more often see in a 2 year old

Thanks for all your messages its so nice to hear from people in similar situations :) He has had a genetic blood test and urine sample but was only on Mon so no results yet . Thankyou for telling me all your stories and letting me know your thoughts . I am definately going to do everything to pursue whats wrong so that my son can get the best help available to him . It doesnt help that I live in London and everything is massive waiting lists . Speech Therapy is almost non existant . Was lucky he got the time he did with them . They arent doing anything else with him at the moment . Once the new year starts I will be making lots of calls get everything moving a bit faster. Thanks again :)

My dd2 goes to a spsch in London she is in the nursery as she is 4.2 they have lots of speech therapy etc I don't know how you feel about sp sch but it might be something to consider good luck

Agree with the posts saying that learning difficulty/gdd doesn't = asd.

Ds (3.5) has gdd, health issues and low muscle tone, it is thought he has a genetic condition.

Unfortunately finding the cause of delays can take a loooong time, there are many people with learning difficulties who haven't got a diagnosis at all. The most important thing is to focus on what support your ds needs now, and ensure that you are able to access support in the future (ie statementing).

Hiya , I think going to stick with school he is at for the minute . But I may look into speech schools im not sure if there is one close to me I will have a look Thankyou .
Thanks for all your support and kind words .

I guess the future will be what it will be but its horrid to just have to wait I would just like an answer :(
I will try and put my energy into getting the best support rather than worrying .Thanks everyone xxxx

Did they give you an idea of how long the genetic tests would take?

I remember bluechick's test results came back in 3 weeks but there are slightly different tests they can do.

We're all here if you need us and lots of us have had the experience of waiting for results. Please just come back and talk if you need to.

Tuts another thought do any sp Schs in your area hAve an outreach team they can be really helpful

Hiya Yes they said about 5 weeks wait for results . Horrid im so impatient as well lol :(
Autumnmum Actually the Senco asked me to fill a form out yesterday which was for someone from the local special school to come over and give them advise and information I guess thats what you mean ?

Thanks so much all the support means a lot I really apprciate it :)

Off out with the Mums tonight I have not said too much just speech delay as v obvious I dont know if best not to talk about it or be up front . What do you think or how have you all dealt with it ? I think I will stay away from the conversation and play it down if get asked .Its hard I want to be friends they all seem v nice . But I dont want my son being talked about or given namings that are wrong etc xxxx

Tuts I tend to be a bit feeble and say dd2 is slow talking it's easier now as if I mention the school she's at people know it's a sp sch stick around everyone on here is lovely

Can I ask how your children are doing now - 2 years on? My ds GDD delayed and in reception at school. No real progress made according to the teacher, he has 1:1 full time. Just curious about the future as school are asking about sending ds to special school. I'm not sure whether we should persevere in ms ( he is happy there)

My daughter was diagnosed with severe learning difficulties aged 3. She was assessed for autism at 5 and it changed to ASD. The learning difficulties were dropped and although she is autistic, she is at least of average intelligence although still has speech delay.

Her progress today is a far cry from the gloom and doom speech we were given by her paed 4 years ago. She is thriving in mainstream.

Hi, I was one of the original posters and my ds has in educational terms made very little progress. A little better attention, sometimes sits for carpet time just started counting to 3, can recognise letters a and s (sometimes), not toilet trained. Considering he has 20 hrs 1:1 in a small supportive rural school it's not much but he is still very sociable, generally loves school (once I get him in). However, the question as to whether he should be ms or ss is really playing on my mind at the moment. He is really sociable but his actual friends to be honest are a small group of nursery children (he is a yr 2) who he works with for small group work. However, to watch him in the playground he just seems to fit in. We have good local ss but it just seemed so generic, and I fear that he'd miss the school he's in now, lots of the class he would join in ss are asd. Feels like I need to decide between social or educational provision. I might be completely wrong and he can get both in one setting but it just feels like an overwhelming decision to make.

Thank you for replying I really appreciate it, where ds has no diagnosis the future seems really unclear.
It's such a difficult decision to make isn't it?
I understand there's a possibility that our children can be enrolled for both ss and ms school ? That could be an option?

It feels completely on our shoulders and you get all kinds of different advice. Hey Ho, we can only do what we feel is right at the time I guess .

Hello @Hedgyhoggy how is your son doing now? I am in a similar situation. Took my daughter to the paediatric, we were told she has gdd

@Sabu1234 Hi Hedgyhoggy here (changed names). I don't know how helpful knowing how my ds is doing because all children with a gdd diagnosis are very different. However, I do know that I wanted to know as many peoples experiences as possible when he was younger. Ds moved to a special School at 9 after a year where he was very unhappy in mainstream (in hindsight I should have sent him earlier). He really enjoyed his new school and really grew in confidence. At 11 he can just about count to 10, and just about write his name. His attention span is still very short and he has lots of sensory issues around going to the toilet. He does however make all his needs known, his speech has come on really well and has a great sense of humour. He can be very challenging at times and is extremely demand avoidant. He has started special secondary school this September but is completely refusing to go, getting very distraught. He has been referred for autism assessment now. I would say that out of all the gdd children I have met who have gone on to have a learning disability diagnosis that he is at the more challenging end. I should (and sometimes do) be struggling with him being at home but Im actually enjoying it. He's very loving, he makes me laugh everyday! How old is your dd?