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Five month old with hypotonia and developmental delay, lack of eye contact and social interaction

7 replies

Worriedmama2four · 16/04/2026 06:34

Please help. I’m super concerned of my 5 month old baby boy. He’s been diagnosed with hypotonia, global developmental delay. I had a normal vaginal delivery for reference.
He doesn’t really make eye contact and if he does it seems like he’s looking at our foreheads. It was difficult to make him smile but that seems like it’s improved. He doesnt really respond to loud noise like he won’t turn his head where the noise is coming from. He loves to stare at the ceiling fan and tv when they’re off. We already got his hearing checked twice and vision checked once. He has a head lag and not rolling, can’t sit up. He just doesn’t seem interested in us or in toys. He will bat at a toy and hold it if placed near his hands. He hates tummy time but I’ve been working very hard with him on it to try and strengthen him. We already started with PT/OT/ST. They rated him really low like 3 to 5 percentiles for gross and fine motor milestones. Speech says he has oral motor dysfunction and said he didn’t have a suck reflex but I thought that became voluntary at 4ish months anyways?

I’m worried about autism or an intellectual disability. He was diagnosed with global developmental delay and the internet says that diagnosis expires at age 5. We seen a neurologist who ordered whole exome sequencing, a genetic test so we’re waiting on those results and he said we may move forward with an MRI after.

Anyone in a similar boat or have experienced with this that is ahead of us. I’m just wondering what to expect.

OP posts:
Sonolanona · 28/04/2026 23:12

I could have written this (many years ago) right down to looking at our foreheads! Hypotonia, visual delays... used to lie there and stare at light bulbs. Poor suck reflex (couldn't breast feed at all)
Lots of tests MRi, genenome sequencing, muscle biopsy etc...none conclusive..lots of things slightly off.. Sat at about 12m, crawled...very late. Got special orthopaedic boots (and later splints) and walked after 2 years old.
'Global developmental delay' was the label.
The good thing is that about 18m his visual maturational delay resolved and he became a very smiley loving toddler (still a floppy one!) Various services became involved..physio, speech, OT and he started nursery with a 1;1 support worker.

That was the early days. He later moved to special school, learned to talk, learned to read and write (still has the writing of a 5 yr old but his spelling is better than mine!) had friends. He was diagnosed with autism at about 7.

He's not got any gcses, he can't drive, he will never marry or likely leave home, but he's not daft. He has disabilities AND abilities (a near photographic memory!) He's also kind, loving, repetitive and one of the nicest people I know. At 18 he was given the chance to be supportedinto employment at a big supermarket...and he's been there 10 years this week! He still can't shave himself or make a sandwhich but can process complicated refunds at work😀

What I'm saying is... prepare for the long haul, but don't get obsessed with trying to figure out how he will be, just prepare to fight for every bit of support to get the best outcomes. I would never have believed that my floppy baby would be the amazing man he is now, and the centre pin of our family (four now adult, children ) I was so scared of the future ..of learning disability and especially of autism,,, and he has both, and neither has made him any less of a wonderful person... though some of his obsessions can get a bit wearing at times😆

Hang in there!!!

TinyMouseTheatre · 29/04/2026 07:30

@Sonolanonayour DS sounds so lovely.

@Worriedmama2fourdo come on over to the SN boards, there are a few MNers whose DC have been diagnosed with GDD in there.

Has your LO been referred to Portage, if it’s available in your area?

I think in your shoes I’d also be applying for DLA, again the helpful MNers on the SN section can talk you through this.

Has the HV also told you about any groups for babies/toddlers with SN or any support groups for you? Around here we’re very lucky to have a SN Nursery although it is run by a charity rather than the Council.

Worriedmama2four · 29/04/2026 11:58

What’s SN board? Also what’s MNers? I actually live in America but was so desperate so I commented on these baby boards as well.

OP posts:
TinyMouseTheatre · 29/04/2026 14:44

Worriedmama2four · 29/04/2026 11:58

What’s SN board? Also what’s MNers? I actually live in America but was so desperate so I commented on these baby boards as well.

It’s absolutely fine to post from America! MN is international Smile

You’ll find the SN Boards further down the list. The posts in there don’t show up in the active threads so you don’t usually get people commenting who haven’t experienced having a baby with delays.

And MNers are just anyone who posts on Mumsnet

Worriedmama2four · 29/04/2026 15:42

Well thank you!! I can’t find it though

OP posts:
Worriedmama2four · 30/04/2026 00:43

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OP posts:
TinyMouseTheatre · 30/04/2026 06:40

Sorry I can’t link to the SN Boards for some reason but it’s fine to ask for help here Smile

DLA is a benefit available in the UK so my advice on that isn’t relevant, sorry, and I’m not sure if you have Pietage in the US?

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