Can I just do a brain dump of ds's annual developmental assessment, please! Also a big honk for ds - who was brilliant!

[hazeyjane]

Ds (2.9) has an annual developmental assessment, it was an hour and a half long and I was so proud of him, because apart from a bit of a meltdown at the end when he was really tired, he did so well.

It was pretty detailed, and she is going to send me the full report, but the overall gist was that, yes he is delayed in all areas (which we know), but in some areas he is showing great improvement. He is severely and significantly delayed in expressive speech, but she was really impressed by his desire to communicate, and agrees that some sort of aac using the ipad would probably work well with him.

When we talked about statementing and primary, she talked a lot about his significant difficulties and said the advice in her report would be a high level of need, for a lot of support, but (in her words) 'no-one gets full time 1-1'. I asked about special school and she said that she thinks ms with a specialist speech & language unit would be better (hmm, as far as I can see, nearest one is about 25 miles away!) I got the impression that (like a lot of other professionals I talk to), she was very ken to push the MS route, although she talked about starting at ms and seeing how he gets on (I would rather get it right first time round really!) It is difficult because she sees ds once a year, it is a tiny snapshot, and she sees nothing of the way he is with other children, and she did the usual thing of brushing off his separation anxiety as just something that all children do (ds's reaction to me leaving has to be seen to be believed!!)

She said his level of tiredness was a big factor with school, as she could see him visibly start to slump, and be unable to hold himself up properly as the appointment went on.

Ds did so well, and apart from the speech he is progressing, and it made me very proud of him. But I feel a bit knackered and overwhelmed by the whole thing.

Thankyou, offload done!!

Yay! I think

and phew.

and

Well done littlehaze! That sounds really encouraging. Amazing how proud they can make you - sometimes dd just fills my heart to bursting. We're just starting to think about schools and statementing too (dd is 2 and 9 months). Mainstream with specialist language sounds ideal, as dd has a mild global delay but severe delays in expressive Lang and gross motor. Don't think we have any round here but great to know they exist.

well done that boy, that was a very long appointment!! Go with your gut re schools, if you want ss then don't let them put you off

School is a couple of years off, but I would definitely press on with the statementing process. As for try MS and see approach, we did that and it was the worst 6 months ever. SS for DS4 has been a god send. The AAC is a good idea, but I'd also push for a teacher for the deaf to be involved not because he has a hearing problem but because he signs as they would be instrumental in getting communication support sorted along side SLT.
Your DS may find MS school very debilitating because of his chest issues as he would be worn out trying to keep up with the pace of normal school. Has that been taken into account by the paed?
Lots to think about.

It does feel a bit weird to be thinking about schools this early, but I just want to know what is out ther, so that when the time comes to apply, and we have more of an idea of how ds is getting on in ms preschool, then we will be as prepared as we can be.

The statementing process, is underway, the developmental paed was on holiday (for 3 months!) when all the reports were being done, so she hasn't been able to do it until now. He has full time 1-1 at preschool.

Interesting what you say about the teacher for the deaf, Sallybear, I will ask his SALT about that.

Also you are right about the chest thing, Sally, there is obviously something else going on there, which we need to get to the bottom of, I will email her about that because she was focusing more on the tiredness from a hypotonia point of view.

Well done to you both for a positive appointment.

I would say a few things that resonated with me...

" 'no-one gets full time 1-1' " We did. With supportive professionals, we got full time 1-1 at preschool AND school without having to stamp our feet and threaten tribunals. It can be done.

Re: the separation anxiety... DD had major issues separating from me at preschool - MAJOR issues. She would scream till she was sick. The physio and OT both felt that this was due to the fact that, due to her physical disability, she felt very vulnerable with the other children around. Now this is a child without delays in any other aspect - she can communicate, she is simply a bit of a wobbly walker. Think how much more vulnerable minihazey must feel...

I was lucky as I was in a position to stay with her every session for a year or more. Now, with 5 months until she starts school, I am JUST able to leave her. She has a fantastic bond with her 1-1 and copes without me. This week is the first week I have left her every day and I have yet to see if she can make it through the whole week without collapsing with exhaustion (she gets much more tired if I'm not there). And, since she normally wakes at 7:30 on a preschool day and it's now 8 and she's still not awake, I think we can safely say she's struggling a little with fatigue!

I would go and visit the MS school with the unit, the SS and the MS school you would choose if he was just going to MS with support. Bear in mind that a 25 mile journey at each end of the day is NOT going to help his fatigue! See where you feel he would best 'fit'. However, of course, he will progress between now and then anyway, so it may be that what feels right for him now might not be the best choice next year, IYSWIM...

Sorry, mammoth post, I will shut up now!

I don't think it's too early to be looking at schools, dd3 started at her ms base just before she was 3, some bases and ss will take from 2.6-3 on a part time basis, depends on what is on offer in your area. Even if you're not planning on changing placements it's worth looking around for statementing purposes the LEA may be looking at transition to a school nursery school soon at your ds' age.

galena, well done your dd!

Thanks Ninja! So proud of her. :)

DS4's SS take them from 2yrs old. Mornings or afternoon sessions like a nursery would do. Cupofteaplease was considering our SS for Bea the month she left us.

well done, Galena's dd It give me hope about ds and his separation anxiety, to hear how well she is doing. You are right about the fatigue, I think that is going to be a huge issue. It also has a big impact when he was ill. The last bout of pneumonia he had kept him off nursery for a whole term, it is difficult to deal with things like the separation when there is a big setback like that.

Fortunately the preschool he is starting at next week (eek) are quite happy for me to come to sessions for as long as it takes. His lovely 1-1 has just been round to deliver a book they have made for him with photos of the staff and what happens through the session.

It did strike me as a little bizarre to say that noone gets full time 1-1 in our area. Especially considering ds will have a full time 1-1 at preschool.

Confusingly, it looks as though the local primary (not the one dds go to) used to have a specialist unit within the school dealing with complex learning needs (I had heard this had been closed!) I will call the school later for a chat. The school with the language unit which is too far away looks absolutely lovely.

Do you ever have moments of stepping outside yourself and seeing things from the outside rather than the inside? I had one of those yesterday, suddenly seeing ds as a little boy with a genetic condition and health problems and learning disabilities, rather than just ds. It was a weird and unsettling feeling. If that just makes me sound insane, please ignore it!

Ds is back to being just ds today, signing helicopter everytime a car goes past and rubbing his tummy and signing for cake every 5 minutes.