Please help me - severe development delays

[Bex268]

Hi there, thank you for opening this to begin with. I’d appreciate any words of support and any advice. My little boy is almost 22 months and he was born 2 weeks before the big lockdown.

At this age there are certain milestones he still hasn’t hit:
No clapping waving or pointing.
No speech - a little bit of babbling.
He doesn’t roleplay.
He doesn’t know how to use basic objects like combs a phone etc - doesn’t mimic what they’re for like others his age.
He doesn’t play with a lot of toys how they’re intended.
Little eye contact with others.

Nursery expressed concerns some months ago. He’s had three hearing assessments, all come back with he can definitely hear but that they are now considering to put him under a GA to see if there’s something going on with frequencies he can hear. He has been referred to SaLT and is awaiting his first appointment.

Okay, so, I’ve done all the negatives, all the things I’m worried about and reminded to worry about from other sources, such as nursery and social media and our health visitor.

The positives: he’s just lovely, me and my husband absolutely adore him. He loves music, dancing with us, waving his arms in the air to his favourite songs, he loves being tickled, chased, going for walks, bright lights, being in the bath. He’s a fabulous sleeper, rarely has tantrums and we love him in our life in every way. He enriches it. We don’t have a hard time with him.

But I sit alone worrying sometimes that I’m missing something massive. HV once suggested autism but I’m getting more concerned about global learning difficulties and that I’ve let him down. It’s just the three of us, we have no outside help so it’s something I have or haven’t done 😭.

I feel like this after baby groups or meeting up with friends with toddlers. My beautiful, inside and out, toddler is not the same as them.

I don’t want to worry but I also don’t want to let him down 😭.

I think you are right to be looking into things, but it won't be anything you've done or haven't done – please don't worry about that.

If it were my child, I think I'd want him to see a developmental paediatrician, to look at the whole child (not just hearing or speech and language). Your HV or GP should be able to refer you, I think. If you go through the relevant ASQ for his age and it shows areas of concern, that can help make a case for a referral. I'd probably do the 20 and the 22 month ones, if he's not quite 22 months yet –you can find copies online that include the scoring sheet at the back.

I have also heard excellent things about the Portage service, but I think availability depends on your area.

@skkyelark thank you for your response. I did ask for a referral to a paediatrician but it was refused after our HV said that they would not take my concerns seriously as he was under 2 😔. Maybe I need to go private but I’m not sure how expensive that would be.

@Bex268 my daughter was similar at that age. I actually spoke with the GP when she was 18 months as she wasn’t walking either (although started a few weeks after typically!!). Was impossible at the time to get hold of the HV (still is to be honest ☹️). We were referred to the child development team and are still under them. So I think it’s worth having a chat with your GP with a list of your concerns. X

Hi @Bex268!

My son is 2y4m & I had concerns similar to your own since he turned 1. We luckily enough had a very supportive HV who referred us to both S&L & the paediatrician before he turned 2 so I would push back with your HV on this as they most definitely do refer before 2. Although services are stretched and there are waiting lists unfortunately. The paediatrician will likely not diagnose your child at this age but they can refer to all the relevant services & schedule reviews. My son also had his hearing tested under GA & I have found this useful as it proved hearing wasn’t an issue so the professionals took our concerns seriously.

My son is also in nursery and the biggest help has been inclusion & intervention who work with the nursery so I would recommend speaking to your nursery to see if this service is available in your area.

Although I do not know if my son is neurotypical or not, he has made so much progress in the past 6 months with speech & communication, his understanding & meeting milestones I didn’t see happening before. Like you he brings us so much joy & seeing him progress (even on his own timeline) is wonderful.

Please don’t think you’ve let your son down, he is who he is & will do things in his own time. I know it’s hard not to worry :( there’s lots of speech therapists and groups on social media where you can get ideas for play therapy or even just find other parents with the same worries which I’ve found useful! X

@Lemongrass1 thank you for responding. How is your daughter getting along now?

@Duran31 thanks so much for your lovely post. It’s so worrying, isn’t it.

I’m going to try the HV again this afternoon and tell her my concerns are becoming more and more apparent and that I’d really like that referral to a paediatrician. When she came out to visit me in my home, after speaking to nursery, she said she expected to make a referral there and then buy she didn’t think they’d take their concerns seriously as he looked so happy and playful and didn’t seem to be having any major issues.

I wish I had been more worried at the time.

I’m so scared 😭

@Bex268 our DD is now 32 months. Her development was pretty static until
about 3 months ago. Unfortunately our local HV service is almost non existent (we have been waiting since Oct to be allocated a HV as our previous one retired- I chased every week for 6 weeks and finally gave up) so I’ve had to do a lot of my own research - maybe some of what I did helped and maybe it was coincidence but she’s improved a lot since the early intervention we have done at home. So we did very intensive play with her, I chose something she really enjoyed which was nursery rhymes (she started singing before her first words). I turned the TV off as we had fallen into having it on quite a lot as it was the only thing she seemed interested in, and constantly played with her (following her lead on what she was interested in). Lots of interactive nursery rhymes with gestures and interactive play like row row row your boat etc and really exaggerated my voice and singing to gain her interest. Basically I bounced around like a childrens TV presenter for a few weeks. Following this I noticed that her eye contact massively improved (she wants to make eye contact whereas before she would actively avoid it) and her interest to engage/ play with us and has progressively improved since then. Previously she has no interest in engaging with us unless she wanted a snack/ drink etc.. She is still delayed with her speech but has started to use some gestures (pointing, clapping, waving etc - still inconsistent but gradually improving) and is starting to communicate with words. We have also started private speech and language and her therapist has noticed a week on week improvement. She is now showing much more interest in other adults and children and can now do some imaginative play. Although she is still behind her peers we can see a massive difference to how she was before. The child development team do think she has autism and she is on a waitlist for a formal diagnosis.

Like PP says, please don’t think you’ve let your DS down. It’s quite the opposite as you are aware there are some delays in his development and are highlighting them. Being faced with uncertainty is hard so it’s only natural to feel anxious and stressed. He is still very young though so there is still massive scope for him to develop- just maybe at a different pace to some of his peers. X

How’s is he doing now ? My DD and I are on the same boat

Sorry meant” she “

DD is now 5. She was diagnosed with ASD age 3 and has come on so much since I last posted. She went to a specialist nursery and is now in a specialist base attached to a mainstream school and they have both been amazing for her. We can now have a basic conversation and she understands so much more. Her speech has really come on in the last year. Lots more imaginative play now and she’s started to play with other children in the last few months ❤️ It was so difficult when she was younger wondering how/ if she would progress but it’s amazing how much she’s changed since she was 2. How old is your DD, how is she doing now? X

Bless her and you .. I am so happy to hear that she is doing well . Thank you so much for replying to my post . My DD is 18 months and she can say up to 70 words and link very simple sentences together , fab sleeper and eater and imitates everything. She can point , clap and wave . I am slightly concerned that she is not overly social with other kids , she looks for them but nothing more . She is a bit of a toe walker and a bit mouthy ( no biting or hitting ) . She still likes to put her toys in her mouth but not stuff she finds outside . She doesn’t have meltdowns ( a bit stroppy if she doesn’t get her way but doesn’t last more that a few seconds) . I am a first time mum and don’t know what to expect. ❤️