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]

@Ell17 it's been lovely to read how your boy is doing. You sound like you've done so well by him, you should be proud of yourself. He's lucky to have you as an advocate. I hope the diagnosis has helped you. I know I am looking forward to having one, it will feel like one milestone we can actually meet as it's on our terms!

(Also I noticed you mentioned his name. Perhaps consider asking MN to remove it to protect your anonymity).

@bpr187 I'm running out of time now as the kids are waking up. Let me know if I can help in any other way. Well done for getting help early. I didn't until 12 months because the HV was very chilled, and I wish now I'd spoken up sooner. No harm can come of early intervention.

@sushinushii

Thank you! I hope you’re keeping well and get some answers soon. A more in depth genetic study sounds the way to go.
I always forget about not putting his name in so thank you....it just comes naturally when typing!

@sushinushii

How old is your oldest child now? That’s another thing that’s on my mind as well as million other things. I always wanted a close gap between children and now I’m thinking I should wait to know what’s going on before I consider it but it could take years. I just feel like everything is crumbling around me. It’s really hard to be focus and be brave.

Do you recommend any interventions in particular? You didn’t/don’t suspect autism at all do you?

@Ell17
Yes before lockdown we went to loads of classes and he did use to cry more than other babies there but it was more from waking up when we got there and he was grouchy about that. I don’t feel like he gets over stimulated by sounds etc infact he likes loud music, noises, lights etc. He’s more sensory seeking.
With regards to worries of autism my main concerns are:

• lack of eye contact (only when laying on his back)
• no social smiles
• fixates on objects particularly square shaped e.g

photoframes.

• does like a scratching thing with his hands a lot
• doesn’t recognise me and my husband E.g doesn’t notice when we enter or leave the room
• struggling to wean
• delayed on all milestones

I’ve done a video call with an ABA therapist she’s given me some things to do with him but because he doesn’t look at me at all it’s just so hard. It would be much better if I could see someone face to face just so I know what I’m doing. I’m going to do another one this week. I just need to remember it’s going to take a long time and patience is key! X

@Bpr187

Does he respond particularly well to music/singing? Also, what’s the hand scratching you mentioned?

My son LOVES any music, singing, nursery rhymes, books, in particular Hairy Mclary and Mr Tumble. He loves noise, and lights - the hyposensitivity side we did explore and tried to explore Sensory Processing Disorder via private OT but they said he was too young for a diagnosis, presenting as a 12-18 month old. I think he has it, as it comes part and parcel with syndrome. In particular the mouthing and eating of inedible things like stones, dirt, feathers, grass etc whatever he can get his hands on!! We’ve been warned this is like mild PICA. Extreme PICA is the biting and digesting of clothing and furniture. I pray he doesn’t get that bad.

It is hard not to be face to face with professionals. Consistency is key - it’s disheartening when you don’t see any progress but you just need to power through x

@bpr187 my oldest is coming up to 2 and a half. The age gap is lovely but hard work, especially right now during lockdown! Our second was a surprise, which really threw me, as we hadn't had the genetic results back from our first and it just doubled the worry. Ideally we would have waited until we knew what was going on with our first, but it is how it is. Fortunately so far our second seems very different, it's actually remarkable, and has made me realise i missed early warning signs with dd1. But hindsight is a wonderful thing isn't it!

@Ell17

Yes he loves music and singing.. he scratches his head a lot.. and when he plays with his keyboard he sort of scratches it rather than presses the buttons it if that makes sense. When he’s breastfeeding he scratches my side with his hand.

@sushinushii
That’s interesting, I don’t think I would have noticed anything if he was smiling. I know that sounds silly but I just wouldn’t have ever thought anything was wrong. I feel like I’ve gone from being super laid back to the most neurotic person ever. If I do ever have another child I think it will be a totally different experience with pregnancy and birth. I think I’ll be worried through it all now instead of relaxed.

How is your oldest doing now? Is she verbal? What concerns did you have about her at 6 months? Xx

@Bpr187 I know exactly what you mean. I was totally laid back, had an easy pregnant and never worried. DD was an easy baby and we were both very chilled, but now I realise that she was too chilled - but being my first I didn't realise. Like you I went from being easy going to very neurotic, so I can completely understand that. I still feel like that now if I'm honest, I think about what's going on all the time, and despite my second being very different I still worry about her all the time too. It sucks. I can understand how you already feel you might not be relaxed second time. I hope you can get some answers with regards your son, and that that might help.

My oldest is doing really well, but still has gdd. She walks but her low muscle tone is still an obstacle and I expect it always will be (although hearing what @Ell17 said about her son's low tone makes me feel more positive). She's behind in all areas though, communication and understanding especially. We've been under the paed since she was just over 1, but there's nothing obviously wrong so it's just a case of waiting, and we're not due to see the paed again until the end of this year. I find it frustrating because I know there's something going on, I just don't know what, but family seem to think she'll be fine and is just taking her time. It's like they aren't listening to what we're saying.

At 6 months she wasn't sitting up, rolling over, couldn't do tummy time. She also didn't reach for or grasp toys, or play with them when given to her. She just wasn't as interested in things as she should have been. She was very placid and easy going, never made a fuss. I just thought that's the way she was. She also clenched her fists quite a lot and kept her legs straight and locked, if that makes sense. She was very responsive, smiling and laughing, great eye contact, so I didn't worry about anything else really. I wish I'd just spoken to the HV or something, but everyone (and everything I read) just said babies do things at different times, so I just assumed she was going at her own pace. Although there's not really much that could have been done, I suppose.

Xx

Also like your son, she really struggled to wean. Even now she's funny with textures, although she's come a long way and now eats well. Food was tricky until she was over one tbh, but now I suppose I'd just say she's a bit fussy, but nothing major x

Sorry I feel I'm being a bit sporadic with my responses! Re interventions, has anyone spoken to you about portage?

@sushinushii
“ wasn't sitting up, rolling over, couldn't do tummy time. She also didn't reach for or grasp toys, or play with them when given to her. She just wasn't as interested in things as she should have been. She also clenched her fists quite a lot and kept her legs straight and locked”
This is basically exactly like my son and everyone keeps telling me the same things, he’s just lazy, he will do it etc and to be honest if he was smiling and more interactive then I wouldn’t be worrying about it but because he’s so away with the fairies it worries me a lot. The only differences to what you’ve described are he doesn’t smile much only at random objects although he will laugh if I tickle him or swing him around also he’s not placid he’s quite highly strung and always has been, I can’t just leave him chill for 5 he wants me to carry him around or be laying on my constantly. He doesn’t like sitting in his rocking chair unless it’s in front of the TV and only for 20 max until he starts grumbling. I don’t like him in front of the TV though so I only do it once a day.

Yes I’ve been in touch with portage, the woman said I can call her any time as their services are closed at present but she said that the paediatrician and multidisciplinary team will refer to them once they’ve decided what their plan is. I’m hoping to hear by the end of the week as they’re discussing him tomorrow (I feel happy and sad about it - such a weird feeling) x

My gut says that it's good he wants to be with you, that he needs you and wants your attention. He placidity (?!) Really worried me, it just didn't feel right. Being needy feels more normal to me. But best defer to the experts on that one!

Portage really helped us. Her understanding and ability to play really came on. And I got a 40 minute break each week when she was being entertained and learning. It taught me how to play with her too, in a way that helped her and without me expecting too much. I hope it works for you too.

Let us know how tomorrow goes, if you feel comfortable? I'll be thinking of you x

*her placidity

@sushinushii

Yeah it’s definitely a positive that he wants/likes attention but what worries me his lack of awareness. I really don’t think he knows the difference between me, my husband, my mother etc. He’s the same with everyone when being passed around he’s none the wiser who he’s with. Until he’s looking for boob then he will cry and cry until I’m holding him but he doesn’t “look” for me.

I’ve been in touch with portage they’re going to contact me once they’ve been contacted by the paed team and once they’re back open but she’s told me I can ring her whenever I want for advice which is lovely of her. How old was your daughter when you started portage? I’m just worried that the weeks are going by and nothing is happening because of the lockdown. I know I’m doing stuff with him but like I told @Ell17 I just need some face to face support. X

@Bpr187

I would add that my son didn’t recognise us or show that he wanted us until about last summer. So nearly 2.5. I know it’s not nice to think of. Even now he doesn’t fully register when he sees my mum, and she sees him a lot as I work evenings in a pharmacy and it crosses over with husbands work. Like you said, they’re kind of in their own works. Similar to @sushinushii my boy was so chilled and calm as a baby that I thought “great!!” - you could leave him to get on with things, he would entertain himself etc. I guess slight difference is my son used to play with toys, roll/catch a ball, play with cars, etc but now he seems to have lost those skills. I would say toys have taken a back seat and he would be happy to just run around our conservatory occasionally looking at books (we have a trampoline, and soft play furniture to keep his sensory side entertained). You might find as your boy gets older that he shows more interest in a certain area x

@Ell17

That part really breaks my heart. When he was really small he would cry hysterically sometimes unless I was holding him and I secretly loved that. I always love the thought of a little “mammys boy” and I have to say it is killing me that he doesn’t look for me etc. I find the placid baby the main difference in most people I speak to.... nearly every thread I’ve read, people have said their baby was quiet, chilled, could be left for ages with no attention. My son isn’t like that in the slightest. Mad how they can present so differently in some ways.

Yes, I’m hoping that as he gets older I’ll have a better sense of what he likes/enjoys. For example I have a singing bear which he loves and when I out that in front of him he will concentrate on it so much he can sit up (little bit wobbly but improving) for nearly 5 minutes just looking at it. If I turn it off he won’t just sit up he starts fidgeting, throwing himself backwards etc.. The same with rolling he has rolled once that’s because he was staring at a light and I moved him so he couldn’t see it so he rolled. I think maybe he can do it if he wants to he just doesn’t most of the time. X