Global developmental delay

[Thatsmoneyhoney]

Hi all.

I am desperately looking for advice. We have adopted a little boy who is now 15 months old. He's absolutely gorgeous and we love him to pieces. He's so happy ans extremely cute.
He was 4months old when he joined our family and although he was very young, all seemed to be going well with his development. I started getting concerned when he was 8 months old and still not rolling or sitting. For months all we got from GP and HV was that boys tend to be slower than girls and to just see how he developed in time. As time went on, I continued to press for a referal to paediatrician because I knew in my gut something wasn't right. We were finally taken seriously when I insisted the HV came to do an assessment on him. He was 12 months at the time and the HV confirmed he was delayed in all areas by around 6 months.
He was finally seen by the community paediatrician last month where she diagnosed him with global developmental delay and he has also had genetic testing done as she thinks he may have Downs syndrome.
He is 15 months old and is severely delayed in all areas. He is not sitting without support nor is he crawling or anywhere near walking. He hasn't started to babble yet and he has no understanding. He is like a 5month old baby still.
I guess what I want to know is, has anyone else had children go through a similar thing and their kids have caught up.
How severe can global developmental delay be? Everything I read just seems so vague. It's hard to get an answer from any doctor. I guess without his blood results, it's hard to know.
Thanks all.

I think being adopted may make some difference to development, but I don't know whether that might make it more or less likely that he may catch up.

Global development delay is a huge range. It could be that he will suddenly start improving, or if he stays at one year behind, at this point it looks huge, when he's fifteen it will make far less difference, or unfortunately it could be that he'll get further and further behind. I'm not sure even doctors can say this.

Down's syndrome often can be guessed at by features, I'm sure you know the facial ones, but there's others like only having one crease across the palm (although that isn't a given-I have a friend who has that).
However there are multiple other development delay genetic causes that aren't Down's, so I'd guess they're checking for others too.

Things I'd ask the paediatrician about is things like:
Muscle tone. Is he floppy? Hypermobile? Tight muscles? What can you do to help? Swimming is often a good one, but are there exercises you can do.
Have you checked (as much as you can at that age) hearing/sight etc. If he's not hearing then he will be later talking. And not hearing can be glue ear which isn't permanent.
What else can you do to help? The doctor may say it's a wait and see, or they might put him on the list for speech therapy (may sound silly now, but there can be a huge waiting list).

How is his eating? If he eats poorly does he struggle with lumps? Again that can be down to muscle tone. Can he get a piece of bread in his mouth when he's holding it? (not all children try to do that, so don't worry). Does he open his mouth at the right time when you bring a spoon near?
Things like that show a little understanding and memory.

But whatever happens he's still your darling little boy and it's tough waiting to find out, but well done for pushing for answers.

Hi @MargaretThursday. I should have said he's had a hearing test. That was all fine. The paediatrician said he was floppy at his assessment.
He has started physio therapy and is soon to start speech therapy too so hopefuly he will start to improve soon.
He has some physical traits of downs syndrome such as the singular crease across the palm. A very large fontanelle which is still open. Low set ears and a fold in the neck. He also has a misshapen head but that has improved as he's grown.
He struggles with lumpy food but does eat purees and he will open his mouth when he sees the spoon but sometimes will take a few seconds.
He is very happy and he laughs alot. He's such a lovely little boy. We just want the best for him. We just want him to have the best life ❤️

If he has low muscle tone then that will effect both mobility and speaking. But if he's eating purees and opening his mouth then I'd see that as a positive. He's got enough muscle tone to swallow and opening his mouth shows understanding and ability to do so.

Blowing bubbles is something is often great for helping their speech and muscle tone of the mouth. Very few children can do that at under 18 months, (often even at 2yo they struggle) but you could do some blowing bubbles with him, so it's something he's familiar with and may then start giving it a go as he gets older, which is good.

Happy and laughing is lovely. That's better than almost anything. It means he's secure in your love and that is the best thing ever for any baby.

My dd is 18 and she has a couple of friends who have global development delay. They're all different, but they are absolutely great and you wouldn't believe how much they've achieved compared to how they were when younger. I will also add that between them (and my dd) they seem to have more than their fair share of mischief over the years, but it's nice mischief, if that makes sense!

Unfortunately you are asking a kind of 'how long is a piece of string' question.
My DD2 went into care at 11 months and was also classified as having GDD we adopted her at 2.5. She improved a fair bit but has always been at the 'lower end' of 'normal' (normal is a very very wide range). If the pandemic hadn't hit she was expected to pass most GCSEs. (Unfortunately it did hit and destroyed her).
The worrying thing for you is you have been giving input since 4 months old and from what you have said the gap seems to be widening not staying the same or closing.
You may find the SN Chat board and the adoption board helpful.

I adopted my son at 18 months and the LA medical advisor had referred him for GDD. At 18 months he could sit independently and used rolling to get around, but no speech, standing, walking, crawling etc.
He is now nearly 9. He is in mainstream school with 1:1 support. He is generally about 2 years behind where he should be academically. He tries hard but still hasn't learnt to swim or ride a bike. He is endlessly curious and very friendly.
There were 2 resources which were v helpful to us in the early years. Firstly Portage - which is sadly not available in all LAs. We used to have weekly group sessions and fortnightly 1:1s. The group sessions were a great way of meeting other parents of children with additional needs and we all celebrated our children's achievements together.
My son has had genetic testing which hasn't revealed any answers. They are sure something will be identified one day as he has a number of medical conditions too. The charity SWAN - Syndromes without a name is a great source of support whilst you live with so much uncertainty.