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 Sushinushii,

One handed walking sounds fantastic!! Go you guys
I'll keep you posted. Speak soon and take care x

Wow - it sounds like you've done so well with him and he's communicating in his own way which is great!
Can I ask what's pecs and acc? I've been taking my son to makaton signing classes for almost 2 years and he only signs "more". It's getting to the point where I'm likely to stop going, not because lack of progress but because his behaviour is disrupting the whole session for the rest of the kids.

How did you know whether to send your boy to normal or special nursery? I'm thinking special nursery but my mum is saying one to one at mainstream nursery - I just don't know!! I really want Portage to tell me but haven't heard about referral yet.

We're thinking he is along the lines of ASD too - he is showing a lot of autistic traits but not so much the common ones like; hating food and textures, and obsessing over things. He's the opposite of both of those.

I really appreciate your insight into this

Pecs stands for Picture exchange communication system. This is very commonly used with non verbal children. In its basic form it is exchanging picture cards for an but has a number of phases which increases it's functionality. For example if your ds wants chocolate buttons he would have to hand you that card. It progresses to making i want sentences and using sentences strips etc. Might he worth a google, my son started with this. He never took to makaton at all.

Aac - augmentative assistive communication - this is an umbrella term for lots of communication methods. So many options available from communication boards, podd books and high tech aac like what my son uses. All things that are good to be aware of. Have you been assessed by speech and language yet?

I went to both a special school and a mainstream school with a nursery attached. Knew instantly that the place for him was the special school. He would have only last a year tops anyway in mainstream. Follow your gut, you know your child best. I'd visit both and ask lots of questions. I'd start looking into an ehcp now, plenty of information if you go to google and find the sossen or ipsea websites. My portage worker actually came to visit the schools with me.

Autism is so different for everyone. Portage will be a big help as they do a lot of observations. Ask them about groups also, most portage centres have them.

Your more than welcome. 😁

That should be exchanging picture cards for an item!

Hi there,

My 2.5 yo DS also has GDD. He has DiGeorge Syndrome, also known by the catchy title 22q11.2 deletion syndrome.

He has had issues with low muscle tone and didn't sit up until he was about 13 months. He started walking at 21 months and runs everywhere now

He is non-verbal too and his only sign is 'more'. We have tried so hard to get him into signing but he just hasn't picked it up. I think this is because he doesn't instinctively 'mirror' and so we have to teach him using 'hand over hand' instead.

He is in mainstream nursery and has been since 11 months, but doesn't have a 1-1 yet. We had Portage for about 9 months and then got discharged as he had made a lot of progress. He is still delayed over all, especially with communication, but he didn't meet their criteria any more. I am still absolutely gutted about losing the support TBH.

The developmental paediatrician says we are 'not going down the autism road' just yet. Which I think means that, while he does display some ASD traits, there is not enough to make that diagnosis just yet. My gut feeling is that we will end up with a diagnosis of LDs rather than ASD, but who knows?

We have found a private speech and language therapist and hoping to move forwards with PECS or visuals as I think we really need to find a functional method of communication for him. The longer we leave it the more frustrated he will become.

It is hard work, and difficult to explain to people, especially when they try to brush it off by saying 'he'll get there in the end'. They don't understand that he is missing out now and that actually he might never catch up

He is our awesome little dude, and is pretty happy most of the time. Crap at sleeping but good at making us laugh 💕

Mintplum - thank you for explaining
We've been introduced to the picture cards by speech therapist but only so he can chose which song for us to sing I.e Wheels on the bus or Twinkle Twinkle. He's not even pointing so we're starting off at the very easy end.
Speech therapist report just says he's severely delayed in all areas. And said don't expect speech any time soon :( (not helpful language but those were her exact words!)
I'm visiting a special needs nursery in Sept for a stay and play session so that's a good place to start I guess.
X

Hello Heartbaby,

Good to hear from you - your boy sounds similar to mine in the way of signing. He also doesn't copy or mirror us. So the fact he can sign "more" is good tbh although he's recently stopped doing it! He starts and stops things and goes through stages.

The ASD thing is a shot in the dark honestly because he ticks about 50% of the boxes.
I've just come across Sensory Processing Disorder and he ticks all the boxes for the Hyposensitivity side - meaning he is sensory seeking. I cannot believe how well it describes him!! So i think if the genetic tests come back normal then I'll be leading with this at next paediatrician appointment.

Sounds like your boy has made great progress - regression is a part of GDD and it's just a worry if you don't have support for those stages too with Portage etc. You have to push for so much on your own. Hard work for sure! I feel like I'm back in a management job with all the phone calls, emails and appointments I have to deal with! xx

Hi Ell17

Yes please do keep me updated on your pushchair hunt, thanks for that! Epilepsy is difficult but I tend to almost forget about his condition when his seizures are controlled by medicine, and our DS has not seemed too bothered by them so far (we do our best not to think about what would happen if the meds stop working!). I think the epilepsy and GDD are both symptoms of his underlying genetic condition, which he was diagnosed with following a 9 month wait for results last year, but even then the results were somewhat inconclusive - we were told to come back in a few years when they may have more research available on his variant. Some ASD signs too here as well as the speech delay but who knows - we're starting PECS too next week with DS' speech therapist so crossing fingers he makes some progress with that. I suppose I just feel grateful that we do at least live in a day and age where there is medicine and therapy to make our little one's struggle a little easier (even if we do have to fight for every block of sessions with the local authority and the private therapist we occasionally use in between costs a bomb!) X

Also sushinushii I absolutely know what you mean about only now being able to talk about it - I think I've only just been able to stop grieving for the son I thought I had and start to enjoy DS for who he is. The down side of that is a lot of friends irl don't know what we've been going through and perhaps because of this have been less understanding of the way we parent than they would have been otherwise. But then we also dont want to be the downers at every social gathering talking about the difficulties we've had! Feels like a catch 22 sometimes! X

Hi Infradoug,

We got the pushchair!! Start to finish it took one week for it to arrive! I was so shocked. I cried down the phone to lovely lady at TwinsUK because it's our first minor victory through this journey. So we're now the proud owners of a Special Tomato EIO

Sounds like you're managing your sons Epilepsy well and he's on the right meds. Over the last couple of days I've looked into Sensory Processing Disorder and my son fits the bill for all areas of the hyposensitivity side of it! It's actually uncanny going through the list how much it fits him. So now I'm leaning towards this over ASD. I'm aware it can co-occurs with conditions like ADHD and ASD but for now I'm just focusing on this. We have been told to seek a private OT because the NHS in our area doesn't fund OT's who specialise in sensory disorder. I guess if my sons DLA is approved this can go towards the cost. They can suggest a "sensory diet" that can get him into the right state to pay attention and learn. All new to this so constantly a learning curve!! Any experience with this??
The traits are: Very high tolerance to pain, constantly bumping into things, also moving/fidgeting, very physical and strong, mouths everything.
So in short he is sensory seeking constantly x

Also Infradoug - good luck with PECS. We have them for songs, and speech therapist had taken photos of snack items and some play items. Just waiting for them to arrive. I've had to learn that what I'm teaching him is not so he can speak but so he can at least communicate in some way. It's a difficult way to start thinking, but I've put him saying any words to the back of my mind and have accepted he is non-verbal.....for now. There's always hope! Xx

Great to hear you got your pushchair!! I thought one week turnarounds just didn't happen in the world of special needs ;) Looked up the Special Tomato and it looks lovely, and probably something we will need to start thinking about ourselves. Sensory Processing Disorder sounds very familiar here too - checked out a few articles online and there seemed to be some useful tips out there, particularly about using a white noise machine at night. DS' attention span has always been very short - on the advice of his consultant, we have been trying to increase this by focusing on activities together and through attending a music group (every time he wonders off, we bring him back to the circle) but to be honest I'm not sure my sanity can take much more of that! X

Infradoug, I hear you!! We go to signing group every Fri morning and DS is the only one wondering round the room trying to get in the bin or taking the fire extinguisher off the wall!! It's one I dread but keep going anyway for him.
We've had white noise in his room from when he was a baby, he still has it now and it does work. He associates that and pitch black room as sleep time. So apart from sleep regressions when he was younger, we haven't had any issues with his sleep.
DS has incredibly short attention span too, but he has made progress recently with trying to point and eye contact engagement. Onwards and upwards.....

@Ell17 @sushinushii @Infradoug

Hi all,

I know that this thread has gone quiet but I just came across it as I have concerns about my 7.5 month old. He is delayed in all areas. I know he’s still young but I just have a gut feeling there is something wrong. We’ve been referred to a paed and waiting to hear. He’s displaying many many autistic traits, he seems in his own world most of the time :( he doesn’t look at me or acknowledge people at all he mostly stares at objects. He doesn’t smile at people either. He’s also struggling with weaning and gags at everything that isn’t smooth and even then he still gags sometimes, he’s breastfed so just prefers milk and the comfort of it. They are my main autism concerns.

The fact he’s delayed in gross and motor skills, not sitting up, not rolling, struggles to grasp, not reaching makes me think GDD.

Just wondering how all your children are doing now? Any advice? I’m so upset and just feel so devastated and lonely about it all x

Hi @Bpr187,

Firstly welcome, and I’m glad you found this thread from last year!
I would say that you have done so well to raise your concerns early on about your little boy. Is he your first? The paediatrician may well say that he has Global Development Delay, but I must stress this isn’t the be all and end all. It is not a diagnosis, just an umbrella term (although I don’t want to play it down either because it is daunting) to describe the current status of your boy. It is a tough pill to swallow but it’s great that you’re getting the referral in early. They can then refer onto SLT (speech and language therapy) who can help with gag reflexes and swallow, and physio to help him physically. Autism is too early to say but I understand totally why you would have that concern - I think the youngest they would diagnose is 2 years old. How was your birth, any complications?
I would add on the milestones that my son didn’t sit up unaided until 9.5 months and now at 3 he has very little hypotonia (low muscle tone), physio said just in his fingers. So your little guy may just take his time at this.

Without worrying you, or making your mind race....we’ve had a diagnosis since I last posted on here. In Oct last year after genetic testing, my son was diagnosed with Phelan-McDermid Syndrome. It’s a very rare chromosome disorder - approx 1 in 3.3 million worldwide effected. The symptoms of the syndrome are also widely vast. Fast forward to Dec last year and we found out that it was not inherited from myself or my husband. Fast forward again to March this year, and we now have an autism diagnosis alongside PMS.
He is a fantastic little boy who is a joy to be around.
One piece of advice I would give, is to accept and enjoy your son as he is, day by day. Don’t look too far into the future. It’s a waiting game, and given current world circumstances, you may be waiting a little longer for answers. You will adjust. I know it’s difficult and frustrating not knowing. But just sit positively in the fact that you’re doing something now at 7.5 months, you’ve got the ball rolling, that is fantastic. A lot of parents bury their heads and ignore signs, and they’re kids are flagged up with difficulties at school, by which time it’s very late for intervention etc.
Don’t feel you’re alone. X

Hi Bpr

I'm so sorry to hear that, I can totally understand how upset you feel. I now have a baby too so can't reply right now, but should be able to later.

@Ell17

Aww thank you so much for your reply so quickly. That is the only positive right now really that it’s been flagged up early. He’s being discussed in a multidisciplinary meeting tomorrow and they’re going to let me know what the next step is. He can sit up for a few minutes but if he starts looking around too much he loses his balance and falls over but he is improving. He will not roll though. I think it’s mainly because he has no interest in anything to roll towards if that makes sense.

Wow, 1 in 3 million that’s unbelievable. I’m trying to shut off from every other child I see and stop comparing. There are SO many babies around me at the moment and the same age it’s so so hard and it’s absolutely breaking my heart every day. I just think WHY. I’m blaming myself constantly, I went to 6 weddings last year whilst pregnant and had a couple of cider shandy’s at each one and I just keep beating myself up that that’s what’s wrong. I’m not even a big drinker, never drink at home etc. It was just one of those “oh a cider shandy is fine”.

Yes he’s my first, had lovely birth and pregnancy (although now I am studying every single second of it looking for possible causes). I’m almost convinced it’s autism though. I’ve never thought about anything like this before or ever thought my child would have it, we have no history in my family which is why I’m torturing myself over the cause (and of course I don’t even know what it is yet).

Did you do any intervention with your son that you think has helped? Particularly with social skills? My son hardly looks at me and he never smiles it’s just so upsetting😢 xx

@sushinushii aww congratulations to you! That would be great if you find some spare time thank you x

@Bpr187

Congrats!!! @sushinushii

I was exactly the same as you - comparing to all other children! As soon as he got GDD confirmed last July I stopped comparing. In fact, a weight was lifted. You know the term they’re using a lot in the news at the mo RE Coronavirus - the “new normal”? That’s pretty much how I felt last year....this is our new normal. It takes a lot of adjustment, talking with partner/friends/family/professionals.
Also, I had a small glass of Prosecco at 6 weeks pregnant (at a wedding), and then a low percent beer at Xmas, oh and a glass of wine the night before I thought I was going to be induced! I blamed his delays on that initially - but I can tell you now, you shouldn’t blame yourself at all.

I was taking my boy to baby signing from 6 months and I had all these babies around me able to sign at like 8/9/10 months old. It made me feel helpless I’ll be honest. DS signed his first sigh at 18 months! 1 year after first going, every week. It was the sign for “more”. He has since regressed (Part of his syndrome), and has lost ability to clap, wave, etc. He is non-verbal.
The intervention we’ve had, and believe me it’s been a lot, has helped me more than him. It’s helped me understand how to work with him 1:1 etc. It’s helped change my thought process for example; I kept imagining waking up to hear his first word. Then I changed my thinking to, just helping him to communicate in any way possible. Additionally, as with his syndrome, we now know it’s very unlikely he will ever speak, but we continue to try. DS is severely delayed cognitively, so we need a lot more years of intervention to see any progress. He is (fingers crossed) starting SEN nursery in Sept with a 1:1 support so I’m hoping to see progress from then onwards.
One thing I would say, is DS's eye contact has improved a lot and he is very cuddly and affectionate. This has only come on in the last 6-9 months. I, like you, breasted for 11 months and received no attention from him, he didn’t care if I’d left the room, he wasn’t bothered if we were there or not. One OT once described myself and my husband as “pawns in his world, no his parents”.......great bit of advice!
X

[Edited by MNHQ to remove RL names]

@Ell17

Ye I’m trying hard to not compare it’s just so hard especially as he’s so young so I get my friends telling me what their kids are doing now and asking if he is doing this that and the other and it just makes me feel sick :(

I guess in time it will get a bit better or at least I’m hoping because I’m really struggling at the moment. A few people have to said to me to forget the alcohol thing as most people will have that glass or the odd beer here and there.
I would always try even when people say he will never do this that she the other because you just never know. I’ve also read so many threads saying that Professionals had said their child would never walk, talk etc and that they’d got to a certain age and were doing all those things. So there is always hope!!
What age was your son when you thought something was wrong? Did he ever smile at you?

P.s can’t believe that OT - just how you’d want to be described :(
Xx

@Bpr187

You are soooooo right! Our little munchkins will always surprise us when we least expect it. If you feel comfortable talking to your friends about the paediatrician referral then tell them - it may make them realise what you’re going through and they can support you through it. My friends now ask “what’s Elliot getting up to now?” Or they wait for me to tell them about him. In the beginning I got a lot of “has he said anything yet?” Or “are his sounds improving?” - now those questions never come up which is good.

I started the referral to speech and language around 12-15 months. Up until a year I couldn’t see anything wrong. He was always happy, smiley, content. Even now he doesn’t have tantrums or meltdowns because he doesn’t register emotion or have the capacity to process scenarios. I got the ball rolling after the 1 year health check because he wasn’t babbling at all. A lot of sound were made with his mouth closed.

Going back to the labour - he was born with shoulder dystocia - basically came out like superman with one arm down by his side and one arm up above his head. It was a forcep delivery. So in the beginning stages of referral we even had a midwife round to go through the birth to see if there was a loss of oxygen at any point. There wasn’t thankfully! He had a great APGAR score too. So we could at least rule that out.

You have to be his biggest supporter, his advocate, his warrior and just from talking to you briefly I can tell you will be all those things. Be pushy, be consistent, record everything, and follow your instincts x

Everyone was telling me “he’s a boy he will catch up, my son was like they so lazy, he’s fine there’s nothing wrong” so you do question yourself. Now almost two months after mentioning my concerns, they agree that they can see what I’m talking about. They’re still very optimistic that he will be fine and catch up and I have days where I think it will all be fine but then other days I am just so down thinking life is going to be so so different and difficult to the one I imagined.

It’s interesting that you didn’t notice anything in your son up until 1 year old. Some threads I’ve read have said they didn’t notice at first but looking back there were signs. I just think everything he’s doing screams autism at me and the delays go with it. Just because the social element of autism and that is so obvious in him and the delayed milestones come with autism it seems. I just can’t believe he’s showing signs so early. I hope that doesn’t mean more severe. This lockdown isn’t helping because all the intervention available is closed. One thing I read about baby’s who appear passive is they don’t communicate any needs so hungry if they’re awake etc they just lay there but my son is more highly strung, he cries when he wakes up, when he wants me or hungry etc. So that is classed as communication?

Awwww your poor baby, isn’t that a broken shoulder? Sounds like he had an outing! The fact I had a straightforward pregnancy and birth bothers me now because I think it must have been something I did. I hope that feeling goes away soon😭

@Bpr187

Luckily his shoulder wasn’t broken - they only break if they can’t get the baby out quickly. He was a bit bruised but ok.
I would say my pregnancy was great, and I weirdly enjoyed the birth, I always say it was a great experience. Only now though are we talking about trying for another. Once you get answers the fear behind everything else will disappear.

Your son is definitely communicating by getting his needs and wants across. Have you tried baby signing/sensory classes?
Remember autism has such a broad spectrum. My son for example is unusually cuddly, touchy with people he doesn’t know, he doesn’t mind change in routine, makes great eye contact. But....he walks on tiptoes, is overly sensory so hypo-sensitive, creates repetitive patterns and routes in different surroundings, he stims when he’s excited, and is non-verbal. I wouldn’t say he typically fits the stereotype of autism when you think about it.

If you want to get ball rolling for interventions now, can you suggest video appointments/assessments? We’ve had two video appointments in the last couple of weeks. All his appointments/scans have either been cancelled or moved to July. Pretty much rule this year out unfortunately x

@Bpr187

Sorry forgot to add - looking back In his first year, the only thing that stood out to me was people commenting saying he always looks tired or ill. I couldn’t see it myself and it was normally after a 2 hour nap! Fast forward and he has slight physical traits of the syndrome which is slightly sunken eyes, almost like dark patches under the eyes. Basically how I look on a daily basis
He crawled at 11 months and walked at 13 months so things moved quickly on the physical front, and I wasn’t expecting any words before 12 months anyway x

@Bpr187 I don't know where to start. Well done for posting! It's brave, it took me ages. And did you find it frustrating how little there is out there on gdd?

Firstly I want to say how terrible I found the constant comparisons between children hitting milestones. My DD didn't hit any, and it almost killed me. Like you I first noticed she was different around 6mknths when she didn't sit (sat at 9 months), and then she was late for every milestone after that. With hindsight, and now having had a second who is now 6 months, there were other wanting signs too, but as a ftm I just didn't notice them. Everyone saying "they all get there in the end" didn't really help either. I would say that if you find a group or activity hard, for your mental health or just general well-being, don't force yourself to go. Do something different or find a different circle. It's important for you.

GDD sucks because, like Ell said, it's really a holding term not a diagnosis. It could take a while to figure out what's going on. We are still none the wiser, as genetic tests came back clear, although the paed did mention possibly doing more in depth ones layer this year if need be, or an MRI. However I suspect some kind of mild learning disability or sensory processing issue. Unfortunately it's a wait and see game, and I have found that very very hard to deal with.