Global developmental delay

[ndmcleod]

I’m looking to connect with any parents of children who has/had global developmental delay. My 16 month son isn’t meeting communication or social milestones - he isn’t babbling much and so hasn’t formed any use of words at all, such as mama or ta. He can’t gesture so gets very frustrated. He doesn’t play purposefully very much (he likes sensory stuff in short bursts but no playing with cars or putting blocks into shapes or anything). He doesn’t respond to his name and cannot maintain eye contact (although this has improved recently in that he looks and smiles more regularly at me and his dad during day). We are working with a one-to-one to try to develop his play and have been referred to paediatrician. I’m aware of ASD and start to think this will be the answer, but are there other conditions I should be aware of which could be why he is delayed in a few areas? I’m desperate to do whatever I can to support him as much as we can. Thanks.

[Charlie2750 Community friend]

Hello ndmcleod

My son is 32 years old and had the diagnoses of Global Development Delay probably at the same age.I say probably because I cant remember but I thought at the time that a delay (like a train that's late) he will catch up eventually and I didnt know that was a diagnostic name.There is a lot on the old website however my son didnt actually catch up as such.I will tell you what he can do.

He was late talking but he talks a lot now and can have a good conversation .

He was late walking but walks now and had some physio at the special school

He dresses himself but needs pulling together and wears track suit bottoms because he cant do zips or buttons.We also use velcro shoes which at first were hard to come by in adult size.There must be an awful lot of "normal" adults that cant do shoe laces now!

He feeds himself but uses a spoon mostly and because he lacks strenth and coordination in fingers he needs food cut up.Knives and forks must be a very hard manipulative skill to learn.

He does not read or write but can manipulate a sky Q box and record what he wants to watch.

He has no concept of money nor is he "safe" to cross the road on his own.

I might have left a few things out but he is great fun and I enjoy getting out and about on steam trains, and other exciting days out.

It was and is still sometimes hard work and sadly I have got cross with him when finding him unplugging things from elctic sockets when he was smaller and into these things.He has and still occasionally stroked the cat the wrong way but we have 2 lovely cats both of which sit on his lap!

I would like you to bear in mind that what my son is like may not go for your son but I hope I have given you some positive thoughts about the future.

One more thing he had a traumatic birth because the hole in his heart(normally closes at birth) didnt close and he was blue and had to be transferred to a specilist intensive baby care unit some 60 miles away.I prayed for him because I thought he was not going to make it.

I am now 69 and he still lives with us but the future has got to be thought about but you have a long hard journey with a lot of happy times and some worrying times but knowing this will help. Take care .

[Charlie2750 Community friend in reply to Charlie2750]

Sorry I forgot to mention but some friends have suggested my son could be on theAutistic Spectrum but I dismissed that mainly because he may have some signs but I believe a lot of normal people have similar signseg painfully shy people and people that prefer their own company and if you walk along the road and look at all the younger people not many of them will look at you direct they all look down at the ground when walking past.Sorry just a thought.

charlie

[lqrt43]

Hello – and welcome! You will find so many of the parents here have been through this... My heart goes out to you.

My son is 17 now but your post brings back so vividly how it was when he was little. For us, there were so many appointments over the first few years – tests, diagnoses, therapies – sometimes tentative, sometimes certain, sometimes contradictory or flawed. It can be emotionally as well as physically exhausting, trying to work out what it’s supposed to ‘mean’ for your life ahead (as if life with a 16-month old baby isn’t tiring in any case)...

You ask about diagnosis – like you, ours started as global developmental delay. Over time, and as my son grew, his diagnoses became more specific, as doctors considered learning difficulties, autism and others...

But one of my son’s best paediatricians saw it this way: diagnosis can be helpful (for example, if it gets you resources and help), or it can be limiting (too soon, too simplistic). What she said that helped me most was that she saw it as being like a patchwork quilt – up close you may notice various colours – doctors start looking for diagnoses and see them. But, over time, the quilt builds up and, when you stand back, you see that across the whole quilt there is a general ‘colour’ theme – a quilt is mostly blue, or yellow, or purple. And, in the same way, over time she found it becomes clear which is the key diagnosis – a child’s difficulties may be ‘mostly like’ autism or learning difficulties, say, and this will be helpful as a kind of shorthand – it can be the quickest way for other people to understand immediately the type of needs a child has. So a diagnosis could be useful for professionals as they start to arrange for your son to have the right help (and the best schooling, as that time comes closer)...

Some parents don’t get a diagnosis, some get several – but, ultimately (perhaps oddly?), it doesn’t in practice seem to make very much difference. From your post, what comes across to me are two things:

- You are already an expert in your son’s achievements and needs. This is invaluable to him and ultimately more benefit than a diagnosis, which will only ever be a general category and

- You paint a beautiful picture of the three of you having fun - you two as parents playing with your precious son and enjoying family life with him. Whatever happens, this will be the life ahead of you. (And, in my experience, it’s more effective than most therapies.) Family life with a disabled child can be more intense and harder work than the ‘ordinary’ family life we may have expected – but it is a happy, loving family life. The same, only more precious... I wish I’d known this for certain, through all the medical appointments and testing.

I hope you soon get the clarity you’re looking for and that things settle down for you and your family.

[CJCGDD]

Hi, my son is nearly 18 months old and has Global Development Delay, not that that is a diagnosis more of a label. He is delayed in all areas (major motor, minor motor and social/communication). The doctors are still looking for a cause, currently undergoing more detailed genetic testing.

We have been seeing a paediatrician since he was six months old for various things like reflux, possible milk allergy, eczema. He has had one failed MRI, a lumbar puncture and MRI under general anaesthetic up at the Evelina hospital, as well as loads of neurologist appointments.

He’s had bits of physio and occupational therapy, but generally we have to do most of it ourselves at home.

We are not sure about autism at the moment as his other delays mean it’s not very clear. My wife thinks he does, but I’m not so sure.

To say it’s been the hardest time of our lives would be an understatement, but I try to keep as positive as I can. I always try to concentrate on balancing helping him to improve as much as possible but also remember to enjoy actually being with him (although constantly teething since 3 months old makes that difficult as well).

How has your son been with his other milestones? Can he crawl and walk ok?

Sorry I can’t provide any insight into the future, but I just thought I would reply so that you know you aren’t the only one going through something similar thing at the moment.

It definitely feels lonely at times as it seems no one else is going through it. If you wanted to talk about anything feel free to reply. Also, it’s unlikely your local to Kent, but if you are I’d be happy to recommend any of the people we have seen.