Global Development delay

[Ell17]

Hi, I'm new to Mumsnet - just signed up!
Opening up a conversation about GDD and other undiagnosed conditions - my son is just over 2 - he is non-verbal currently and has multiple delays across gross motor, social, communication, and behavioural areas. Physically he looks fine - he's always been big! Although born at 7lb 2 he has been in 4-5 year old clothes since 18 months! He weighs 18.5kg and is very tall (98.5cm). He is the most wonderful, affectionate, funny little pickle. We were having concerns from 12 months onwards because he wasn't babbling at all.
The current stage we're in is getting a temporary GDD diagnosis while we wait for genetic testing. We have been told he will always be behind his peers through school life, need one to one at nursery, we can claim DLA and he has autistic traits which is common with delays.
Would be great to hear from mums going through this, and mums who have been through this with slightly older kids. Next step for us is touring a special needs school with nursery attached to see if he's well suited.
As you can imagine, this is all a difficult pill to swallow and we have been emotionally drained from learning all of this but remain positive and optimistic 😊

[Edited by MNHQ at OP's request]

Hi there, I'm sure some posters who are in the same boat or who have 'been there' will be along soon to let you know how they coped.

You have mentioned your son's name in your post, that's not a great thing because this is an anonymous forum. Using real names means someone could identify you in real life, mostly that's not an option anyone wants.

Please click the "Report" button above your post (it's top right of each post on my pc screen) and ask MNHQ to remove his name.

By all means invent a name if you find it easier to talk about him

I agree. Report your post and ask MNHQ to remove your ds’s name.

I would also do the same to your post on SN chat.

A friend's child was diagnosed with GDD at around the age of 3. By the age of 5 she was diagnosed Autistic.
The she is now 10 and doing well, with a bit of support in school. I am fairly sure she will go on to lead a normal full adult life, house, job, family.

Hi op you will need some support to understand the system - try www.ipsea.org.uk for education advice because access to special schools requires a document called an Edication health and care plan (EHCP).

Also your local IASS might be useful on this.

Your local authority should have a website with 'local offer' which has links to universal and specialised activities where you might meet people in the same boat.

Finally, try your parent carer forum who are often a wealth of experience and run events .

Thanks all for posting - amended posts so thank you. Appreciate your time spent commenting.

Hi OP, are you still there? My 19 month old DD has was diagnosed with mild global development delay at 13 months. I'm only just about ready to talk about it. Your post triggered something and made me log back in after a long time off Mumsnet. I'll post our story so far if you're still around.

Hello,

Yes still here - I'd love to hear your story. How are you doing with everything? It's a difficult subject to approach. I hope you have the right support around you from family/friends etc. I'm all ears xx

Hi! So we were told that my DD had mild global development delay at 13 months. She was ways very behind with her gross motor, not rolling over much, and not sitting until 9 months. She crawled at 14/15 months and can now pull up, cruise, climb stairs but not yet walk without her walker. She has low muscle tone.

She's behind in social and communication too. Annoyingly were still waiting for her next paediatrician appointment which is due now, 6 months after her first, but might not come until September. She had genetic testing that came back clear, and other than being tall (like us) She looks perfectly normal (although she has very small feet, which no one seems to know anything about!). However, from when all the other babies started sitting up at 6 months I knew something wasn't right. She was always a very chilled out baby, just slept and ate, not much of a fuss. Never really difficult. With hindsight perhaps this should have rung alarm bells, but I didn't think anything of it. From then on she was always behind. Right now she has a few words, a few makaton signs, basic understanding, but doesn't really point, communicate yes or no or understand the more complex demands here peers do.

I find it so terribly frustratingly for her, although she's very lovely as happy as Larry and doesn't think anything of it. Emotionally I think I'm suffering too, not knowing what's going on, not really being able to explain it to people (since her genetic tests came back clear people tend to think she's "fine then"). I tend not to talk about it, which makes it worse I think.

I hate not knowing what the future holds for her. And rather selfishly, I'm just craving the 'normal' child I always thought I'd have. I don't love her any less of course, but I do struggle seeing friends and other kids at groups developing as they should, and my baby being left behind.

Anyway, you're not alone. I've struggled to find many recent threads in GDD so hope this one attracts some others in a similar situation.

Hello,

You have described your situation tremendously well - firstly, never feel selfish for craving a child that you dreamed of or imagined. Everyone has perceptions of how our children might turn out and even though we love them so much (even more after going through this), we still can grieve for the thought of our once existing “normal” lives.

Secondly, explaining it to people is the hardest. Especially when you feel like you’re in limbo with a diagnosis. That’s great her genetic testing came back clear! I would stick with saying mild GDD for now so you’re not overwhelmed with an explanation for people. Before we were told my son had GDD, I would give examples of his behaviours or actions (he possesses a lot of autistic traits) to friends and it would be brushed off as a phase - like eat sand repetitively! - so a part of me is glad to have this temporary diagnosis.

These things might help - and you do unfortunately need to really push for support. It also depends where you live, I live in the south of England:
Early Years Advisory group - group which discusses and support children with developmental needs. It’s an umbrella group which can oversee appointments/referrals etc too.
PORTAGE - another group who come to the house to help, discuss nursery etc.

Does your daughter go to nursery?
We’re at the stage where we need to decide which nursery for next April - we’ve been told he definitely needs one to one at nursery. He’s nearly 2.5 and is entirely non-verbal and does one makaton sign for “more”. I feel much better knowing he will get one to one because someone will need to understand how he communicates which is physically.

Going back to your post - interestingly my son didn’t sit unaided until 9.5 months (he was and is also very tall). But quickly after that he crawled, stood and walked all by 13 months so didn’t think anything of it.
He is now 18.5kg and 98.5cm tall - basically size of a 4/5 year old. Again, because he looks older and has always had a full head of thick brown hair, the expectations from people have always been higher.
My son has also always been easily pleased, chilled out etc. I just thought it was great. Something he really struggles with is he has no attachment to anything/anyone. I breastfed him for 11 months and I when I stopped he did not care one bit which did upset me. But now with hindsight I see why.

I hope this has helped a bit. The next step with us is getting his bloods done for genetic testing. Hopefully you can find your next step and get the support you deserve :)

What a lovely message, thank you. Its nice to actually talk to someone in a similar place as everyone I know seems to have children with no problems, and I've not been brave enough to venture to a special needs playgroup yet - partly because no one has actually told me she has special needs, although clearly she's not on track. It's really hard isn't it? I wish we could just sack off all the appointments and have more time for play dates, I feel a little robed of time to be honest. We have portage too, waiting for them now in fact, but I find them a bit confusing, eg she says she's not that concerned about DD but then when she set DD's targets she referred to her cognitive special needs and physical impairment 🤔. Sounds like something to be concerned about to me!

Anyway I must dash now but have more to add so will be back later x

Yes it is really.....really hard.
I often brain dump on my mum and husband, with various things I've been looking at online - doesn't always help if they don't have warning of what I've looked into/learnt about. Currently it's special pushchairs which are really expensive but my son's feet are touching the wheels of his Silvercross stroller! So need to think ahead. Very overwhelming at times.

I'm going to a 2hr session at a centre near me on Monday that caters for cerebral
palsy, developmental delay and autism - it's been rated outstanding by ofsted and would like to get him into nursery there. This is the first thing I've attended that caters to special needs - I was also considering looking into groups.

Look forward to your next message

Oh good luck! That sounds perfect. All the groups I've seen just say they are for special needs, which seems a bit vague to me?! I think I need to consider one soon, but like I said, finding it hard to make the leap. We're in the south - perhaps groups and support vary regionally.

I chuckled to myself after reading your comment about a thick head of brown hair. My DD has hardly any hair and that's the one thing that makes her look younger! Combined with her abilities, people assume she's younger and can be surprised when I say 19 months. So I guess hair or no hair, it throws people.

Sorry to hear about his lack of attachment. I breast fed until 16 months and I only think she was upset when we stopped because of the routine change, not because she missed me. In fact she's always been good with other people, which made starting nursery and leaving her with family easy, but made it sad for me. Only at 18 months did I sense any kind of detachment concerns, and then only mildly.

Yes she does go to nursery, only one day a week though. The confusing thing is, nursery say she's absolutely fine, no problems, she's apparently on track. I don't know whether to put this down to the fact she only goes one day a week, or should i be alarmed at their incompetence?! It's clear to me she's behind, I mean she wouldn't be having portage or seeing the physio or paediatrician if she wasn't, surely? And she hass the GDD 'diagnosis'. 1:1 care for your DS sounds brilliant, I'm sure he'll thrive. Well done on seeking out the best nursery for him, I'm sure he'll come on lots. What a great start to his educational journey.

Good luck with the blood tests. What I would say is, be prepared for them to take a while. I think ours was 8-10 weeks. We had to chase several times for the results, you know how it is. And also be prepared for them to come back clear, so giving you no answers, although at least it'll be reasuring to know there's no obvious genetic condition of that's the case. Ours came back after I was pregnant again (am now 4.5 months) and it was a very, very anxious time - I'd planned to have a better idea of what was going on with DD before going through it all again! Do you just have the one DS?

Huge congratulations on your pregnancy - I also massively salute you for being pregnant whilst receiving back the genetic tests. It’s something we have considered with DS being our only child, we wanted to try again end of summer but we’re now putting that off until we get results - I feel we (more me) need to be in a better headspace - we’ve been told 3 months to get results and I’m taking him Monday to get bloods so looking at Oct/Nov for results.

You say you’re in the South - me too!!! I agree the special needs classes sound vague. I’m really just hurling myself randomly into things and seeing where I land! Although paediatrician said he’s moderate to severe GDD. So sounds as though he’d fit right in at special needs groups.

Your DD sounds as though she is doing great at nursery, and she’s not quite 2 yet. I think nurseries (hearing from friends’ experiences) get thoroughly involved if there is any issues with development etc so the fact they say she is fine is bloody fantastic!! Her delay as you said, is mild and could be something she easily grows out of. I’ve read in other forums of mums getting negative results from genetic testing and then pushing for MRI scan to see if brain function is correct?

It’s all such a massively confusing time, right?! We were talking about pushchairs again over dinner and I’m not fed up of talking about them.....tomorrow is another day 😊 xx

I might push for an MRI but not seeing the paediatrician for 10 months is hindering progress somewhat! I can't believe waiting lists are so long, even once you're in the system.

I would do anything for her to grow out of her delay, but I need to be realistic. I don't know if that's even possible to be honest. If she's already behind at 19 months, I worry that that's not s good sign. I wish I could just call the paediatrician and ask these questions rather than pondering.

Any more pushchair thoughts? Are you going to go for a special one or just a larger normal one? How are you doing today?

Hey 👋

If I were you I'd call HV, paediatrician or whoever to get answers - you can't wait 10 months for answers to questions you have now. It will put your mind at rest somewhat too.
I know you need to be realistic but I've read lots of stories about kids catching up eventually while having GDD. Yes we've been told my son will always be behind his peers (hard pill to swallow), but I can only hope they may have got that wrong and he will exceed expectations over time.

I'm leaning towards a special pushchair but they look so big and cumbersome! I'm looking into funding somehow (I text a HV), because they're expensive and we haven't been started on DLA path yet.

Big day Monday - session at special needs nursery and bloods being taken for genetic testing. How are you doing?

You're right, we can't wait that long. Thankfully we have an amazing physio who is really responsive and kind and is going to speak to the local team to see if it's a mistake or not.

I like your positivity! I did read the other day that the age of 'maturation' (?!) Is 7, so they have a long time to catch up yet. At least your son will be having 1:1 at nursery which is a brilliant start for him.

Yes I've always thought that about special pushchairs. And there doesn't seem to be much choice? It's a shame some of the 'normal' ones don't accommodate a greater weight, there are plenty of chunky toddlers around!

Good luck for tomorrow, I hope it goes well for you both. Today has been ok for us, she's started playing with some toys she didn't really get a few months ago. It's the little things that can make a day a good one!

Hey,

The session the other day didn't go as planned!!! 🙈
It was all for kids with physical disabilities so non-movers - meaning all the sensory items were small and wires everywhere connecting to sensory buttons - an absolute nightmare for my boy! Quickly realised it wasn't the right setting.
He's had his bloods done for genetic tests do counting down the 8 week wait now.

Put my case forward too for the special pushchair - the charity are going in front of their board today so fingers crossed. Had to be a real pushy parent though to get the paediatrician to write a referral in time - I guess that's our role now as pushy mums in order to get things done!

How you doing? Is your little one still finding some old toys to play with? :) x

Hi OP, hope you don't mind me joining in. I read your first post a few weeks ago but the last few weeks have been so hectic this is the first time I've been able to sit down and think out a proper response! My 2.5 year old son has GDD, epilepsy (since he was around 1 year old) and is almost entirely non-verbal except for one word (I think you can guess it - "more"!) which he uses for everything. He is a very sweet boy but also like your son the size of a 4+ year old and very strong, which can cause him to get into dangerous situations. I feel I don't have much advice to give at this stage - still just beginning to navigate the various issues that have to be faced with a SEN child ourselves including DLA application, finding a suitable nursery etc - but I just wanted to say hi anyway and thanks for posting - its so great to hear of others facing similar challenges. Hope you find the right nursery for your lo, I know what a struggle it can be! Xx

Hi Infradoug,

Thanks for posting, and taking time to sit down and write I totally get! Most of the time it's late evening for me and even then I just want to get into bed and switch off from everything GDD related
Our boys sound very similar in size and age. Epilepsy must be a difficult one for you - is this what's caused the GDD do you know?
Having a big boy you can relate to pushchair issues I imagine? Did you see my previous post of getting funding for a bigger special needs pushchair? I can keep you updated with that progress if you like
Are you going through genetic testing at all?
It's all a whirlwind isn't it! Trying to figure out nursery etc. I just want a professional to tell me which setting is best for him - so I don't put him somewhere and then turn out it's not right! Xx

Hey op,

I'm not sure if you want a perspective from someone who has an older child or not.

My ds was diagnosed with gdd at 18 months, also non verbal. He's now 9. As it often does it was later replaced with a more definitive diagnosis just before his 3rd birthday. This was after the usual genetic testing and waiting and seeing. My son was also a very big toddler (that's only got worse haha).

If theres anything you'd like to know about our experience or have any questions let me know. Happy to share it you think it could be of use.

Hi mintplum,

Thank you so much for commenting - I'd love to hear your story. A couple of questions already from me - is your son still non-verbal? What was the genetic diagnosis in the end? Did you go on to have other children? Sorry didn't mean to ask so many, just lots going through my head at the moment.
I'm hoping to get his genetic results back in the next couple of months and it's all I'm thinking about.

Hey Op, sorry to hear about the nursery mis-match. Does not sound right at all!

Not much of an update here, just plodding along. We think we're getting somewhere with one handed walking.

Good luck with the push chair. Let me know how you get on!
X

Okay so where to begin haha

At 10 months we noticed an issue with ds's development. We where repeatedly brushed off. Ds was late walking (17 months) and didn't even really babble. At 18 months he was diagnosed with gdd. We had genetic testing which took an age to return but came back normal. He was then diagnosed with autism just before his third birthday.

He attended a special school for nursery and stayed at the same special school until a few months ago. (If you intend to apply for special nursery/school you will need an ehcp). Ds is currently out of school but will be starting at an independent special school hopefully in the next few months.

Yes he is still non verbal, but there's a big but to that! He has no verbal speech but his understanding of language vastly improved around 7. He uses an ipad with picture based speech software and can make full sentences to request, reject, some social interaction and actions. So really he may have no verbal speech but he is far better off that some children who do have speech. Not gonna lie it's been a lot of hard work teaching him how to use it! We have lots of friends whose children who where entirely non verbal as toddlers and have mostly normal speech. Everyone is different. What i would say is it is never to early to start with makaton or pecs (anything aac based also). Anything that will reduce frustration. You are going to have to do most of the leg work yourself though unfortunately.

No i decided not to have anymore children. That's just me though, mainly due to my relationship breaking down.

Ask away! Happy to help in some small way if i can!

That was in paragraphs, i promise! Lol