Nursery Issues already!- Advice needed-Please

[kyz1981]

Hi after searching for 6 months, visiting and speaking to various 'I finally found one that my Son may settle into- they were really helpful and said all the right things.

My Son is 2 and is being assessed for ASD, this was only confirmed last week on his 2nd birthday as 2 appears to be the youngest you can get an assessment in our area. He is quite complex due to sensory issues also.

He gets easily over stimulated in different environments and will climb, run and not generally not respond to anything verbal- kind of bouncing off the walls- doing his own thing - feeling out the boundary's. They then took him outside to the play area ( I did tell them that outside he is even worse because of all the wind/sun different sounds etc he goes in to overdrive and he did not stop.

I informed the Nursery several times of his needs before he stsarted and what I struggle with and they were fine with it, I also believed that the nursery would put things in place off there own back.

As part of his ASD assessment his Pead will visit him in nursery without me - we agreed at the meeting that this would be in about 12 weeks as it would give him time to have settled and there is a waiting list for assessments.The Manager has now said this is to long to wait for her girls?! so I am not sure what I am supposed to do as I was under the belief that Nursery could sort it out out help for him.

It really got my back up that one of the leaders in my sons room had worked with an autistic child before and told me within 5 minutes of meeting my son that he did not look autistic ?!?! I wanted to ask her exactly what should an autistic child look like but did not want to annoy her so early on! ( we have only just been told this week that it was probably an ASD after a 9 months of jumping from ASD, to hearing to complex Language problem now back to ASD) So I am very much still emotional and stressed about it all.

What should I do/ say to the Nursery I am very new to all this professional/LA/NHS as everything we have done for our son previously has been paid for by us as he was to young to have qualified for special autism specific NHS/SLT/OT intervention.

Thanks to all who have got to the bottom of this, and for any advice.

Your LEA is responsible (legally, morally the nursery!) for SN/SEN issues within nursery provision. I would give them a ring now and speak to their early years SENco explain what Nursery has said and ask them to contact the nursery and liaise with them on your behalf.
Do you have a portage worker?

I'm so sorry this is happening but be rest assured it isn't you, this is fairly usual experience.

Nurseries tend to have an 'yes, yes, leave it all up to us, we are professionals in the field of childrearing, any problems YOU are having is probably because you are doing it wrong' kind of attitude.

I would get as much as you possibly can in writing from the nursery about them not coping and then put in a request for a statutory assessment. Try and get the dx appointment brought forward if you can too.

Sorry, meant to say, the request for statutory assessment doesn't mean I think he needs a statement, just that I have found this is the quickest way to make people pay attention to his needs.

Kyz you can apply for statutory assesment for statement of special needs yourself, have a look at Ipsea for sample letter. This will be a legal document which the nursery and then school will have to adhere to. Don't let them fob you off by saing he is too young - that's not what the law says. Look up and download Sen code of practice, you will find the article 4.32 I think or somewhere close, if the child has got complex and severe needs after second birthday it is possible... I can send you the letter I sent recently for my ds. As part of the process educational psychologist will see your ds. As for nursery, have you seen their Sen policy? They should listen to your concerns and act accordingly... Is he getting 1-1? If you use coping strategies at home, they should use the same ones. If 1-1 is question of funding they could apply for inclusion funding. Sorry it's all difficult and awful fight, I'm at the start of it as well. Don't believe what Senco tells you, but check everything for yourself in sen code of practice.

Thanks It was his first settling in session yesterday for 1 hr, He is fine if left to self directed play is very inderpendant and will move around toys with ease and sit next to other children for short periods if they are doing something that interests him, as long as they don't touch him or his special things (at the moment its NG manky fuzzy felt), he has very little understanding language and this is the main problem- wont respond to most things and climbs every where- doesn't answer to his name 85% of the time and does not follow directions - although one in a routine he will copy if it suits him.

He has a private SI OT that we pay for and Private SLT, he will be getting SLT, OT, Physio and ED psychologist as part of the assessment for ASD. His Pead is also referring me to Early Birds.( so I may see if I can take one of his nursery people there as at lease it will break down the view that all Autistic children lash out and melt down all the time) - I may also see if My OT can explain things about my son in one of her sessions as they think they know about sensory things but they have not got a bloody clue, I think they think I am mad.

He is cognitively within low/normal range I believe - ie can copy things he sees done, however my SLT thinks that if he was not shown he would struggle. However I am not sure he would qualify as severe - more moderate.

My Main worry is I will get turned down for SA as he is not on the action programs yet - so I am going to ask them today what they intend to do and If they can't do anything then I will go a bit bananas at them, as they informed me they had already informed the LEA, the pead is writing to the LEA and the nursery and I have provided them with everything possible and given them two months before he went near there to ask questions/contact stuff. I am just sooo pissed off already its unreal.

X Thanks - I soo needed that Support and Advice this morning X

Support varies from area to area but you should be able to get (or at least get on the list) for the following without a diagnosis:

1. You can self refer for NHS SALT and ask SALT to go into nursery and explain about his communication difficulties / set up a programme for nursery
2. The LA will employ some sort of early years specialist teacher or outreach teacher (perhaps from a special school). It should say on the council website. Self refer yourself to this person and ask them to go into nursery asap as nursery requesting immediate help. The nursery can also contact this teacher / service but do it yourself so you know its been done and confirm in writing so you can show chronology of when help was requested (useful if you apply for a statement to show any delay)
3. The council may also have a scheme for nurseries to apply for extra funding for 1:1 without a statement (this should not stop you applying for a statement but should be quicker). My LA funded 1:1 up to 75% of DS nursery hours without a statement. The nursery could then give my son 1:1.
4. There should be an Area Senco the nursery can contact who can advise on the help available and provide the funding forms etc.
5. There should be an autism outreach service. in some areas children suspected of asd will be seen in others you need a diagnosis - they should go into nursery and do training, give advice, set up programmes. Again see council website.
6. Self refer to an educational psychologist. If you get a statutory assessment this will happen anyway but it does not hurt to self refer and get on the waiting list.
7. There may be somewhere the nursery can access symbols to use for communication eg communication in print or boardmaker at a library or childrens centre, or they can get free symbols online eg sparkle box. The nursery can start supporting speech with symbols or signs to give instructions eg do a first / then approach or a choice board. You can make your own at mrsriley.com and take a whole batch of useful symbols into nursery.

If your OT / SALT can go in and advise great, but NHS ones should be prepared to go in also. I bought this book and sent it in to nursery. Hanen books (It take two to talk or more than words) are better but this is very non threatening, written by NAS and council and has some of the basics of what a nursery can do. Its very similar to the Earlybird course. I would also say though that my DS did not really engage with nursery until he was nearer 4 - partly because the provision he got from LA and SALT was terrible and partly because he was not interested / developmentally ready - so you may have to resign yourself to nursery being a sitting service rather than an education. Also prepare yourself that the intervention from NHS and LA, once it arrives, is probably likely to be woefully inadequate and piss poor compared to the private provision you have already sorted yourself. Hence why getting on the statementing marathon as soon as possible is sensible

I agree with what people say about the Area SENCO's. Every setting can access them.

It is up to the nursery to know what to do, they have to have a person nominated as SENCO and that person should ring the LA SENCO or Advisor and start getting some training a support to enable them to support your DS.

As far as a member of staff saying that your Ds doesnt "look" like he has autism, that is one of the most ridiculous statements I have ever heard, firstly she is not anywhere near qualified to diagnose your child and second she should be spending time observing him and finding out about his difficulties not making rash judgments about him.

Your sons SALT might be able to provide some symbols and or training for the staff.

The nursery should definitely not be waiting for the paed to go in to nursery they need to be proactive and seek out support.

Keep coming on here for help and support and good luck

Thanks so Much, I have contacted the LA SENCO and she is happy to visit the nursery- all I need to do is give the nursery permission to talk without outside agencies in writing - and then hopefully I can get some support for him.

Bucks is apparently quite bad for supporting ASD or so I have heard so not been given any outreach the only thing they have offered me is Early bird course.

The NHS Salt is beyond a joke in this area - I am led to believe that all the good SLT are leaving but I am happy to pay for his OT and SLT to go in and give advice.

They are insisting he wears shoes/slippers indoors (health and safety) which I am hoping that he will manage- we have started body brushing with his OT and this is helping with that- so I am hoping the nursery will carry that on as it needs to be done every two hours.

The Room leader was different today and seemed more receptive to listen and work with him so I tried to explain some of the areas we are working on at home so they can continue.

I Have brought that book - so thanks so much- but I will see what the SENCO L/A advises first as I don't want to get shot down by them thinking I have diagnosed my son without it being made official yet- he may not even get a dx although I am pretty certain he has all the traits in one form or the other but some are quite subtle and you would not notice them unless you know what you are looking for.

Thanks so much for taking the time to read and reply- It has turned my day around and I feel much happier now I have a plan.

If you're paying for private support, have you investigated ABA?

I am really interested in ABA but no nothing about it really ( and how much it costs) and don't want to start something if I am still doubting whether he has an ASD, at times as although he appears to have most of the traits he is interested in other children, he goes up and stands next to them and will speak jargon interspersed with NG words Mainly Ninky Nonk and pinky ponk, and will follow and engage if playing chase or rough and tumble but does not like to be touched - if he is touched he will just remove the hand and carry on but if they persist he will get upset and cry until someone rescues him or they let go. I think he understands more than he lets on as he had a doll today and when I asked him where the dolls head was he touched the Dolls head - but had not responded to anything else we asked him in the nursery- he also seems more responsive when laying down looking up- it just all has to be on his terms. his OT says he defiantly has a social communication disorder and she can't say if that falls on the spectrum or not and his Private OT says that his Language delay receptive and expressive put with other behaviors, strongly suggests that he is on the spectrum, but without a firm diagnosis I would feel like a fraud. But I am very interested to learn more about ABA and the things it can help with.

If you search these boards there is heaps of information. Costs are pretty variable depending on how you set things up.

we started ABA for severe language delay ASD diagnosis came later. It's a fabulous technique regardless of diagnosis/no diagnosis/NT-ness or not.

Thanks funnily enough my DH sent me a link all about ABA from work,

We are Very interested just need to work out how it can work for us/ around us and as family and find a cost effective way of getting the therapy without us bankrupting ourselves in the process.

This site and all of you wonderful people have been so helpful - its really really appreciated :-)

I do think that if you get the "he doesn't look like he has ASD" comment from the nursery worker again, I suggest a calm response of "well, I'd suggest we leave the diagnosis to a medical professional and just focus on meeting his needs until then." You need to politely but firmly make it clear that you will not put up with people undermining the situation in that way. If it continues, then you report it to the nursery manager, stating that this is very unprofessional behaviour with a reminder that they are not qualified to make that determination.

Thanks I will keep that in mind- It really annoys me that people will so freely talk rubbish without having a clue about what they are saying x

Most of us got someone in to show us and did it ourselves before brining in tutors/volunteers etc. There is a real mix of options but don't let anyone tell you you have to do it for x number of hours or make you sign up to contracts in advance.

Hi kyz1981
Just wanted to say hello and a few things. My son is nearly 4, he was diagnosed on the week of his third birthday with ASD (though we knew ourselves a long time before).

In our area we have nursery provision of 1 to 3 staff ratio for children with special needs without needing a statement. He is in an inclusive nursery so the staff are very experienced with asd and he's in a room with about 15 children, 5 of which have special needs. I don't know if this is an option in your area?

We are just about to start applying for a statement in preperation for school next year.

I start the Early bird course on Tuesday.

Hi. I can't add to the other points but your comment about your son engaging when lying down. There was a similar story in this book:
www.amazon.co.uk/gp/aw/d/1843106086/ref=mp_s_a_1?pi=SL75&qid=1347816270&sr=8-1
It gives different exercises for engaging and then extending that to other activities. All slow stuff, but it might be useful.

Thanks so much- That's a really good idea about getting someone in to talk to us and show us how it works first hand as I find it all such a mind field of information.

There is a special needs nursery in our area but it is full with a waiting list and is about an hours drive away - we are pretty rural.

I have changed his days to the two quietest sessions available and I am paying my OT to go in and give them training and they are trying to find out if I can sign a disclaimer as to DS not wearing socks or shoes.

The Nursery I am at is ok I think , the staff are enthusiastic which is great but not sure how long that will last :S.

Thanks so much for the Book I will add it to my list of ones to get and read, Ds has always been more responsive after spinning/swinging too, we used to spin him round before wiping his mouth with a baby wipe when he was a baby- he could not stand having his mouth wiped then, thankfully a lot better with that now.

Does it ever get easier ?- The people staring and stuff - i have to pick my DD up from Nursery and have to carry DS who is screaming kicking and generally trying to do anything to get down off me ,whilst gathering up my DD's stuff and trying to make small talk - I hate it and I feel more watched as the nursery knows DS has special needs, I can just feel everyone's eyes boring into my head and feel like I am under FBI investigation and being judged constantly, whilst I am also trying to hold it together remain calm and trying to not give them all a mouthful about if they think they can do it better then to please feel free (RANT)! ( can't put him down because he would run off and when picked up again he would scream even more- go floppy and throw his head back - a lot more disturbing to see than that a screaming child). x

I'm still at the same stage as you re other people. I find it unbelievably difficult to deal with. I tend to get upset, my brain switches off and then afterwards I get angry with myself for not saying anything.
I have lost 'friends' over Autism and I have completely amazed at just how ignorant and judgemental people can be.
Other people with older children with ASD i've met have said that yes it does get easier but it takes a while to build up that resistance to it all.
Matthews nursery is inclusive so you would think those parents with children there without special needs would be understanding. But oh no, sometimes I feel like we are aliens sitting amongst them in the waiting room. The only parents who ever speak to me or even smile are other parents with special needs children.
I had a horrible trip on a ferry on saturday where my son was sick as it was rough. This old woman started shouting to everyone, its not his fault he's special needs over and over. Then another child came over to look at his Ipad, her mum kept saying to her 'don't get too close to him he might kick you'. Should have said i'll kick you myself in a minute!!
Sorry had a bit of a rant there but I do find it very very difficult too.