Wait time from Community Pediatrician Appointment to further Assessment appointment?

[Snacks4days]

Hi all!

My 23 month old boy just got seen by the community pediatrician this morning because he does not respond to his name (hearing checked and all fine), says very limited words (nana for banana and star) and completely non-verbal around anyone that isn't parents, doesnt understand or follow simple directions, and doesn't make eye contact with anyone outside parents at home (pointed out by pediatrician today, we hadnt noticed previously).

Anyway, the outcome was she said he is MASSIVELY delayed developmentally (she used that exact phrasing and emphasis on the word massively) and she was going to put through a referral to our local children's development centre for further assessment. She then warned us that there is "a bit of a wait list" and "not to expect to hear anything for a while", so I am just curious how long of a wait list are we talking? We waited 3 months for this appointment (which we were surprised we managed to get so soon). Are we looking at 6 months?

My boy is starting nursery in January as well so hopefully he gets some support via there

It depends where you live. There isn’t a set amount of time. It could be longer than 6 months.

As well as a referral to the CDC, has DS been referred to SALT and OT (and physio if relevant)? If you have Portage in your area and they support DC who attend nursery, it is worth a referral to them too.

You can also look at requesting an EHCNA. On their website, IPSEA has a model letter you can use. An EHCP will ensure DS gets the support he needs.

Have you spoken to the nursery about DS’s additional needs?

Wow! I'm just impressed that someone picked this up at 23 months! He's more advanced than 4 of the children in our reception cohort.

The wait will depend on the area. You ought to get a letter about it, and these normally outline typical wait times.

Practically, see if you can get a SALT referral through your paediatrician, health visitor or GP, as the waiting list once he's at nursery might be significant.

@Thisismynewusernamedoyoulikeit I’m not sure you can judge that based on the limited information in the OP. The OP mentions just a couple of points but nothing in relation to other areas of development other than the paed described her DS as massively behind.

Thank you for your reply!

So SALT has a self referral system where I live and they did see him at 18 months when me and his dad first noticed he wasn't responding to his name, wasn't talking other than babbling, wasn't pointing and wasn't understanding/following simple directions (give that to me, sit there ect). They did a 20 minute assessment and said DS was displaying traits of ASD and ADHD and was delayed in his play development, but they couldn't do anything with him until he was 2 so I have to contact them again next month...

Portage is aware of DS but has a 6 month wait list for their assessment here and they accepted his referral 2 months ago so 4 months to-go with access to that support.

Paeds noted DS is showing delays in his movement that we weren't even aware of (she said he's moving very much like a train stuck on fixed tracks and isn't correcting his trajectory to account for objects like he should. Which makes sense considering he is the most clumsy child I have ever met!) So physio will be involved in his further assessments but no access to them until then I assume. Same with OT. All accessed via the CDC.

He is starting a very good nursery in Jan who when we told paeds he was going there said that was a very good choice and she was going to write to them to get the ball rolling and make them aware of her findings and what's going on. We have already spoken to them so they are kind of aware but probably not to the extent of which he is.

Request an EHCNA yourself. Using IPSEA’s model letter. The benefit of an EHCNA is it can include assessments from SALT, physio and OT without sitting on the normal waiting lists. And an EHCP can include ongoing therapy in excess of what is otherwise typically available on the NHS.

Has DS had his eyes and hearing tested?

I will do that, thank you for the advice.

As for his hearing and eyesight, hearing has been tested as well as they could on a 23 month old who cannot stand still for the life of him and it all came back fine; eyesight hasn't been tested just because he hasn't displayed any issues with sight. He sees tiny things dropped on the floor from miles away and runs over grabs whatever it is and straight in the mouth haha

With what the paed said about DS’s physical development and you posting about DS being clumsy, it is worth requesting a referral to the hospital to have DS’s sight tested. Hospitals are generally better at testing young DC with additional needs. It may be fine, but it is worth covering all bases.

DS is always falling over and is basically struggling to stop when he runs and generally tripping over his own feet (he loves to tippytoe walk). Paed noticed during our appointment that he wasn't avoiding things, he would just bump into them and drag his body along whatever is in his way (I.e when walking past the cabinet in the room, he essentially shoulder checked it but instead of moving more to the side once he bumped into it to avoid it, he just continued walking while his side of his body drags along it so he didn't move from his planned pathway.) It's kind of hard to explain but his issue doesn't seem to be that he doesn't see the objects more that he is so engrossed in his own little world they don't even come up on his radar?

How would an eyesight test even work for someone like him who is essentially non-verbal and doesn't follow any directions nor follow your finger when pointing at something?

A specialist paediatric ophthalmology team would be able to assess DS’s vision (which goes beyond ‘just’ seeing things) even though he is non-verbal, self directed and can’t follow a point. It’s not like an eye test you or I may have. They may put drops in his eyes to be able to examine his eyes better.