We saw the paed today.....

[dietstartstmoz]

Hi all,
I have posted before about DS2 and his ASD traits. We had our first paed appt today, she agreed there were concerns and ASD traits and said she would make a referral to autism support. She also agreed to blood tests for allergies (he has a disgnosed peanut allergy already) and other things (poss toddler diarrhoea) so checking milk, wheat, coelic tests and fragile x as well. Poor DS had 5 vials of blood taken.

While we are in the corridor putting coats on she went back in to a room for another blood form, and came out and said the senior paed had said DS was too young for a referral to Autism support, he is 3.4, and that they would see us again in 4 months and if we still have concerns then, they would refer us. Have come away feeling very unsettled by this.

He is starting to receive support from the early years specialist service who will give nursery strategies, will keep in regular contact with us, we have speech therapy groups starting in 3 weeks and a hearing test due soon, so lots of support is starting,
But, our next paed appt is 22nd June (I have phoned the hosp), and DS should be starting MS school in sept. I'm just stressing that he may not make sufficient progress by then, may end up getting a dx at some point and will be starting MS school without support. He is not toilet trained, problems with communication, poor eye contact, can't attempt dressing, undressing yet.
The early years support will liaise with school and i will also request a meeting with school head and senco in the spring to explain about his issues, and where he is then, but just wanted something definate for him for starting school. he's going to be the youngest in the year anyway but he's still showing as 18months in some areas of Early years framework.

Just need to stress for a while....

You get a statement based on need, not on dx.

So apply for a statement now based on his symptoms.

Yes, request a statutory assessment right away. Then they'll all take notice for sure.

Also, there is something to be said for applying before he gets the intervention etc. because no-one can put in any counter-arguments to yours if they haven't yet seen him.

I'd push again for a referral to see autism support to get a diagnosis. I'm surprised she said that 3.4 is too young to even refer . My ds was this age exactly when he was diagnosed, and I think many parents' dc on this board were even younger. All the children with asd I know in rl were younger than 3 (some nearer 2).

Anyway, in the meantime I second applying for a statement anyway. And researching forms of therapy/behavioural intervention and start helping him yourself.

In some ways your situation is the reverse of mine - ds was diagnosed in September, but we've had nothing in the way of support! We have a dx but no help, so the fact that you're having help (speech therapy etc) without a dx is actually pretty good!

Thanks everyone, didn't realise we could request a statutory assessment ourselves. Have looked at IPSEA website and have spoken to DH and we will do it. So will be coming back here to ask for more help. Will look at it early next week and do our letter next week, as we are very concerned about support for DS in September. Thanks everyone, feel a bit better now. Also forgot to put in earlier post that the paed felt DS1 was not ASD, and didn't have particular concerns, felt he was displaying typical behaviour of a 5 yr old boy, so now we will also write to Ds1 teacher and ask for him to be put onto School action on SEN register, or ask what extra support they will put in place and regular reviews.

Local experience here was that portage / early years support was better quality and much more frequent than autism support. Some autism support will only take kids with diagnosis. The council should have scheme for 1:1 outside of statementing eg we got 75% of nursery hours with 1:1 out of a funding stream for early action plus. So you may be able to get some 1:1 in place now. The sen officer or early support person should be able to tell you. Get the written policy may be on council website. Still go for statement but see if you can get some 1:1 now

zzzzzzzz, I considered that actually. But thing thing about ASD is that the unstructured learning that happens in nursery I think can mean it is a hard environment to learn in.

My ds is in Nursery now, but if anything I would prefer him to have been put up a year and maybe do reception or year 1 twice instead.

I agree with above poster. It is much better for dc that are experiencing difficulties,to start school later-giving them a chance to catch-up at a more relaxed pace.
If your ds is showing 18months in some areas-hes not ready for full-time school. Would you expect an 18month old to be able to sit and follow instructions for 6hrs a day? No, it would be unrealistic, but if your ds goes to school, there will be some expectation of him being able to do this.
Consider another year at nursery where he can learn more social and emotional skills, or perhaps a split placement between school and nursery. Good Luck.

Regarding the age thing, My son is currently on the waiting list for be assessed for asd. He is due to be seen in July. We were recently seen by a new paed and when I mentioned this she asked if it had definitely been done. I said yes I had letter confirming and she said good as there had very recently been a change in policy and they were refusing to accept new referrals for children of a certain age as the waiting lists were just too long.
I can't remember though what the ages were but my son is 3.8. I don't know if this was just our area or a national thing, but it may be worth asking why he's too young and what the age is?

zzzzz, I bow to your experience. My eldest, ASD is in nursery now and is all over the shop.

Perhaps it is just wishful thinking to think he'll do better in reception.

I shouldn't really have mentioned Year 1 though. I have been told that it is a tough year.

I would send a letter or email to the Paed you saw saying, very nicely, that you were a bit alarmed by the change in decision and why. Your earlier post outlines it all very well. Even if you go for Statutory Assessment, there is no harm in having a paper trail and keeping the Paed on side, they can be very useful when it comes to Statementing. She did a bit of a Columbo on you didn't she?!

Thanks everyone, yes ZZZZZ you are spot on, I just wants DS2 to be happy in school, he is happy in nursery generally but the staff find him hard work (as do we!). I have spoken to Parent Partnership this morning, someone will contact me back next week and will support us with gathering evidence to make an application for a statutory assessment. All professionals agree he has autistic traits, and delayed development so hopefully we can get a strong case together. I will write to the paed we saw and ask again, as yes she did do a 'columbo' on us, and it was too quick for us to take it all in. We don't get seen again by a paed until the end of june, and then they will refer to autism service, if they feel he is still a cause for concern. I will pursue things further with early years support service also, as we have a keyworker from that and DS2 is School action plus at the moment. I am very anxious about the move to reception in sept, which is a different school, new staff, new kids, he won't know anyone, he doesn't interact with other kids, make eye contact and is not toilet trained and may not be by then, and cannot sit still, makes strange noises and shrieks, and cannot dress or undress himself. He is going to need a lot of support!!

dietstarts

You need to make the statement request yourself asap. As such a document can take 6 months upwards to set up time is of the essense here.

The initial letter for the LEA does not have to be pages and pages in length (also they won't read it all!). IPSEA's website has model letters you can use/

I would also try and get a far earlier referral from Autism Support as well.

School action plus is all fine and dandy in theory but it can fall down because it is not legally binding. Only a statement is legally binding.

Some Parent Partnerships are better than others, many of them work hand in glove with the LEA in question (my particular PP works out of the same part of the building) and are not therefore completely impartial. I would therefore suggest you have a look at IPSEA's website and seek independent advice from such organisations too like IPSEA and SOS;SEN to name but two. Both can be helpful with regards to the statementing process and they are importantly, completely independent of LEAs.

You are your child's best - and only - advocate.

You need your request in before Feb as a statement takes a MINIMUM of 6 months.

Just an update. DS2 has been observed by his specialist early years support worker and she has written a report, will do IEP for nursery. We are still waiting for blood test results for food intolerances (could be the end of nxt wk)we had our first speech therapy group today, just observations but another next week then we get stategies for home and nursery. The support worker wants to see how DS gets on with his progress over the next few weeks. If he has not made sufficient progress by end March she will support us with the statementing process. She said even if we get a statement he is unlikely to get 1-2-1 support, and would not get many hrs support as he is 'not too bad'. Not sure what to do? I know the consensus will be apply asap, but I'm having a bad day today, feeling quite upset after speech therapy group, don't know why. Don't know if to speak to school SENCO to see what help he would get, if statement not in place, what to expect-she probably wouldn't tell me anyway. Can't think straight today. Very anxious about school, don't know if we would even be considered now for a stat assessment as have looked on LEA website and they didn't give the impression of encouraging the process, am worried if we get turned down then we can't re-apply for 6 months, is this correct? Don't have enough paper evidence at the moment to support a stat assessment. Think i'll give parent partnership a call. Sorry, waffling-V stressed today and don't feel strong enough to do all this.