Almost 1 year old delayed in all areas of development - any experiences?

[wowolucy]

Wondering if anybody else has experienced this & what the outcome was, how things went etc

My beautiful LB turns one next week! (Where did the time go!)
He isn’t hitting any of his milestones- he was 5 weeks prem, however, he still can’t roll, sit or stand, he can wriggle but that’s about it. we’ve done tons of tummy time etc since birth, he also very much favours one side of his body, always turns his head one way (his head control is still quite poor)

He doesn’t reach for toys, won’t pick things up and hold them, weaning isn’t going very well either as he won’t feed himself and if there’s too much texture in puréed foods he gets very upset, arches his back, refuses to open his mouth and projectile vomits (this has been this way since the beginning of his weaning journey and hasn’t improved).

He has a squint, and won’t maintain eye contact at all, doesn’t follow me or my voice, won’t track toys with his eyes either

(to put it simply, he very much reminds me of what his older brother was like at 4 months old)

The health visitor came to do his 12 month check a few weeks ago, (I did seek advice from HV and GP a number of times since December but was told to wait for the check) and has said he is delayed in all areas of development, he’s been referred to physio & community paediatrics (just waiting for an app now, referrals accepted just a wait list) and still waiting to hear on vision and hearing tests. He’s also been referred to Portage and had his first session, which ended in lots of tears after being overwhelmed, he fell asleep but really loved the fibre optic light thing that they brought along (he loves lights!).

he’s a happy little guy, he loves the dancing fruit on the tv, Mickey Mouse and loves being tickled, But of course I’m worrying, I just want him to thrive and enjoy the world around him!
curious if anybody else’s little one’s were like this and what to expect at different appointments, thanks for reading :)

I e not experienced an overall being behind but didn't want you to go unanswered @wowolucy

I'm glad that they've finally made those referrals for him and u hope you get someone along soon who has experience

@CadyEastman Thank you! Hoping I can find somebody in the same boat, so worried about him, but also so proud of him still, he’s come so far from being in his little incubator 🥹xx

Another bump for you- I also don't have experience but I can empathise so much with the worry. Its great you're starting to get intervention and from all I've read there is a lot they can do to help little ones develop the skills they need! He sounds like a lovely fella and that he is indeed enjoying the world around him already. It sounds he had a rough start (and you with him as well!). Hopefully someone knowledgeable will pick this up!

@StrawberryFields2023 Thank you! He’s such a little delight I can’t wait to see him being able to do things & play with his older brother etc 🥹🫶

Also no firsthand experience, but if you repost in one of the Special Needs sections, you might have more luck finding posters who do have that experience.

@skkyelark Thank you I didn’t think of doing this!

Just some advice

1. take him to the GP and assess bubba for torticollis. A neck condition that makes babies prefer one side and affects movement, gait, vision and a myriad of other things. It CAN be corrected so don’t worry too much.
2. request GP for a referral to see Gastrointestinal Paediatrician regarding feeding issue could possibly have mild acid reflux
3. at 12 months you also byway of your HV request eye screening/ test for bubba

hope everything works out x

Thank you!
A little update!

He has had the first initial eye check; they think something isn’t right, he didn’t respond to any of the picture cards they used and was only interested in the ceiling light. We’re waiting for a consultant app for them to look behind his eyes etc, (hoping the wait isn’t too long) but for the time being, lots of black and white contrasting things to try and get his eyes focusing

he’s had a swallowing assessment, and they’ve said he’s got an unsafe swallow, so we’ve got a 6 week plan of strictly only super smooth purées & then a review, possibly an xray to see if he’s inhaling any solids

we’re waiting for an appointment with community paediatrics, we have portage sessions weekly and I’m waiting to hear back on some other things too.

i feel like we’re on such a rollercoaster at the moment, he’s been wriggling and rolling more recently with lots of encouragement but i feel like I’m so desperate for him to be doing more and it’s almost a guilty feeling? I just can’t wait for the days to come for him to be playing with his older sibling! I’m sure we will get there, whatever is ahead he will have his mummy by his side always. But I just feel a little lost and clueless at times.

will update again in a month or two on how he’s doing x

Hi,

Hope you and you little one are doing well.

My eldest showed delays in most aspects of his development at 12 months. He was not fully sitting unaided and could not crawl or stand. His play was very repetitive, mostly spinning toys or pressing the same button over and over.

He had no communication and showed no understanding of verbal language. Didn't respond to his name etc.

He didn't wave, point or clap.

He also had a squint in one eye. We struggled to get an accurate assessment of his vision or hearing as he became quite upset.

Following a blood test he was diagnosed with fragile X syndrome at around 20 months. (This is pretty rare so will not likely be the outcome for your little one)

He is now 4 and is doing great! He is a happy loving wee boy who loves running around with his football and playing on the swings. He is non verbal but is making good progress with signs and picture communication. He definitely understands more than he let's on!

Life looks a bit different to how we imagined but would change it for anything.

The best advice I can offer is trust yourself, you know them best! Take everything at their pace and accept any early intervention you can. (This will look different depending on where you are in the country) We went to child development centre once a week from around 18 months-3 years and he had access to an early nursery placement from age 2 for two afternoons a week.

I hope this helps x

Hey OP @wowolucy - I know this is old but just wondering how your LO got on in the end?