Support while awaiting paediatric assessment for one-year-old with delays

[Dream133]

my little boy is massively delayed. He’s 1 in a week. He can sit up perfectly but doesn’t bare weight on his legs, doesn’t roll, crawl , can’t feed himself, doesn’t clap wave etc doesn’t engage in play just always looks like he’s in a little world of his own. We got referred to iscan and got accepted for child development service and the doctor also referred him to the pediactric which they agreed he needed to be seen by the hospital team but it’s a 21 week waiting list. Also a 5 month waiting list for the child development service. Is there anything I can do in the mean time or a way I can sort of self refer him to physio therapy to try get him moving. I’m overly concerned and the waiting is draining. 😭

Call the physio service and ask them to confirm their referral criteria, they don't tend to intervene until 18 months for not walking but they should be willing to tell you exactly when they can accept a referral.
Have a look on your council website to see if they have portage services in your area.
Communication skills wise, this charity is excellent for advice https://progress-checker.speechandlanguage.org.uk/

Physio when they see them should give specific advice and exercises to work on but otherwise most other NHS services will be simple advice and no direct therapy so you sadly won't get as much support as you perhaps hope but you can very much learn things for communication and other delays yourself before you re even seen by anyone.

@1995SENNDMUM as far as I am aware portage is the child development service we have already been referred too which is a 5 month waiting list where they will come to the house and assess him through play? I’ve spoken the health visitor today she said can’t refer him to physio as he’s to young but can for OT. But I ain’t getting anywhere at the moment.

Yes portage sometimes has different names so that sounds like it's that. Honestly and I hate doing this, when you do get there physio will be more personalized help but every other service is quite likely going to tell you developmental advice that other people could already tell you or you could find yourself online, sadly the starting point with developmental delays is them assuming you need to be taught basics which of course it doesn't sound like you do at all. For example speech therapy would start as "have you tried simplifying instructions, reading more etc" all things that a good parent would have already thought of before asking for help, you might then get something more advanced suggested but even then it can be quite limited amounts of sessions.

So 100% get the referrals as that as they ll allow you to but don't doubt that you can make a difference without the professionals input as it would mostly be down to you apart from nursery/childminders being involved.

Great advice from 1995, as always

The only other thing I’d add is coming on over to the SN section. There’s SN Chat and SN Children which you might find useful.

You will probably want to start the EHC assessment process so that the ECHP will be in place when you’re selecting schools.

You probably should apply for DLA too as there can be a waiting list for this usually.

Has your HV told you if there are any groups for DC with delays locally? These might be useful

@1995SENNDMUM thank you for your advice. I just don’t know what else I can do. I really do all I can to help him but he just refuses. I’m just really worried there is something serious wrong and he’s not getting seen to fast enough x

@TinyMouseTheatre hi thank you! Sorry to sound stupid but what is dla for please? X

Also @TinyMouseTheatre ive had no recommendations on groups for him. I’ve just had the “wait and see” he might eventually catch up. “ he could just be slow” “cant be bothered” “ just don’t want to do it” all that! So frustrating. I take him to local play groups to interact and socialise with others but he absolutely hates it. Xx

The wait and see approach can be frustrating but you’ve had your referral to Physio and Iscan and it’s frustrating waiting, but you’ve will get seen.

Please do follow 1995’s suggestions of what to do next.

And you can talk to your HV and ask her if there are any local groups for DC who have delays. We’re quite lucking in that we have a playgroup and a charity run Nursery.

DLA is Disability Living Allowance. It’s based in need rather than diagnosis so you don’t have to wait.

There is some more information about DLA in this link

@TinyMouseTheatre i agree. hopefully won’t be for much longer 🤞I will give the HV a call first thing Monday to see if there’s any group out there in my area also as I would love to take him 💙 I will look into it thank you very much for all your advice xxx

@TinyMouseTheatre I have just had a quick look online regarding dla. But it says I need to provide proof that it will last for a further 6 months. But how would I provide that if the HV is saying a wait and see approach. I’m a bit confused xx

I’m not an expert on DLA at all but I think that you’ve been referred to iscan should be proof enough although you’re probably best asking specifically about DLA in the SN section

Thank you so much x

Your proof for that is you’re waiting to see the development team and the paediatrician.
Being referred is your proof.
When you fill out the DLA form, you really must give worst case scenario examples. It feels awful to write such things, but it is what they need to see.
So not “he sometimes needs help with XYZ” but “I have to help him with XYZ as he cannot yet do it on his own”.