Had first referral...now wait for a year?

[uglycoyote1]

Posted previously about being referred to community paediatrics after DD had a high score in her social emotional questionnaire at 27 month check up.

We went today and met the paed who talked with us and then did the GL Schedule of Growing Skills assessment. She scored highly in most areas other than hearing and speech which were scored at 24 months and social skills at 18 months. He then made it sound like because of this she isn't really far enough behind for us to go further at the moment and also said they won't diagnose until after age 3 anyway. We now have a year to wait before we will go back again.

Did anyone else have a wait like this and what was the outcome? I guess it's possible that her social skills are just delayed slightly and that she will catch up and there won't be anything, but I still have a list of worries that I don't really know what to do about!

Think my biggest concern is biting which is becoming more frequent. It seems like a sensory urge - she will lunge at whoever (or sometimes whatever) is nearest. Does anyone have any recommendations of how we address this best as we've tried various things and it seems to be escalating rather than getting better?

For the biting, ave you tried chew toys? This sort of thing - also check prices from other outlets.
www.cheapdisabilityaids.co.uk/special-needs-chew-toys-36-c.asp

Here’s the section from Understanding your child’s sensory signals

We used the book teeth are not for biting. Otherwise all you can do is watch like a hawk, redirect and wait for the phase to pass.

We had quite a long wait for diagnosis though we were seen close to every 6 months. I think from memory our first appointment was fairly soon after the 27 month check, and then about every 6 months from there until she was diagnosed just around her 4th birthday (there was a longer gap before that one I think - so it was only 3 or 4 visits in total). Her delays were also mainly social (plus a bit of gross motor).

I didn't mind waiting for diagnosis but it would have been really helpful to have some parenting advice in the meantime.

If your main concerns are social and sensory I'd really recommend the "Chirp Speech Therapy" YouTube videos. She has much broader stuff than just speech, including a set of videos on sensory needs and also stuff on social-emotional skills etc. I don't agree with everything she says but I think there is a lot of useful content there and lots of ideas so you can cherry pick what you think will work for you.
www.youtube.com/user/ChirpSpecialNeeds

If you look for my old posts I've gone on ad nauseam about stuff we did with DD while we were waiting (we hired an ABA advisor which I don't necessarily recommend as I'm not fully bought into ABA but they did have some good ideas while we were waiting). Let me know if you can't find them or want to ask anything! If it's at all reassuring DD is doing really well at 5 and a very happy kid.

In terms of emotional support (because being in limbo is kind of horrible and much worse than actually having a diagnosis IME) I really recommend the "Nurturing Neurodiversity" Facebook Group, which is full of parents with concerns but not yet at diagnosis. If you look up the same phrase on YouTube you'll find Faye's videos and you can see if you think it's for you. Although her son is pre-verbal and my daughter was very verbal so the detail of our situations were very different, I still think the videos are good for all children with social/communication delays (which DD did have) and I wish these videos or something like them had existed when we were waiting for Dx.

I think I will order one of those chew toys to redirect her and will maybe get the book as well as she likes a story so maybe she will listen more to that than to me telling her.

Thanks @LightTripper. As you say, I was expecting a bit of a wait but it's the fact that in the meantime I don't really know what is best to do that's leaving me worried. I will look up your posts and have a look at those videos as well and that Facebook page sounds good. Think you're right - I do just feel like I'm limbo now, although in a way I feel relieved because yesterday confirmed that there are areas in which she is behind, and I've suspected that for a while now. It's just hard when other people around me are saying they think she's totally fine when they don't really see everything that goes on, if that makes sense!