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Formal dx today. Not quite what we thought.

(17 Posts)
jjones Thu 10-Sep-09 21:24:36

Ds3 is 3.3 and his paed came into nursery today to do her final assessments and give a formal dx. Ds has only 1 word 'no' is very self lead and no social skills.
We knew she would say asd but the formal written dx is moderate to severe asd with moderate learning difficulties and possible adhd. She had also referred him to a physio as his 'gait' is off and he is very clumsy and tip toe walks alot.
OMG i knew he had problems but didn't realise how many. The paed said that in her opinion only his gross motor skills are not affected by 'extreme delay' but there is a problem there too.
I felt like I had been smacked in the face.

waitingforgodot Thu 10-Sep-09 21:48:10

Sending a big hug your way. I haven't been through the formal process yet but just wanted to say that it's brilliant you have got him in the system at such an early age. There are so many things that can be done and he is only 3! Remeber these are only labels-he is still your wee boy.

jjones Thu 10-Sep-09 22:54:00

Thank you for your reply.
It was quite hard today as I stayed with him in nursery and realy saw how different he was from the others which was horrible. He loved it but didn't even notice anyone else was there.
I know it is only a label and he is a lovely little boy but it still hurts.

moondog Thu 10-Sep-09 23:11:48

J, I'm sorry you are feeling like this.
It is really hard, but he is little and there is still a lot of time for him to leanr new skills. Sometimes a cold label galvanises the powers that be into action in terms of support and intervention.
I would laso like you to know that a label really does mean nothing anbd a diagnosis is really nothing more than one or more peopel's opinion.It is not set in stone.

To put it in context, I know a lovely young person who has been diagnosed as having a 'severe learning disability'. She reads and writes well, can hold a perfectly normal conversation and has superb social skills. I doubt o meeting her you would detect anything other than extreme shyness.

Go figure as they say. smile

jjones Fri 11-Sep-09 00:23:31

Thanks moondog. I know what you mean about the dx. I think it is just the shock, I will be fine in a day or so. I am glad we have got this now as we are just about to apply for a statement and the nursery said that this will help.

moondog Fri 11-Sep-09 01:55:54

It will. smile
Read the threads on this topic about statemnts.It will help you thnk about how to get a really good one so he gets best possible intervention.

cyberseraphim Fri 11-Sep-09 06:45:17

I think someone else mentioned that 'moderate-severe' means anything that is not obviously high functioning - and that 'mild autism' in prof speak means HFA/Aspergers. So don't read too much into the blunt label. If he has one word now, there will be more so be optimistic about future progress and accept all offers of help. The physio might be a good idea as balance and gait can be important for ASD children.

ohmeohmy Fri 11-Sep-09 07:53:12

always hated assessments when those paeds would slap a label on. Just kept telling myself it served him well that it sounded really bad on paper in terms of getting help in the system. Whatever they call him he is still the boy you love.

vjg13 Fri 11-Sep-09 08:08:49

Expect to be in a state of shock for a while, thinking your child has some difficulties is very different to hearing someone detail it and even harder to read in a report. Once you get into the system you will have lots of appointments and these can be draining so be kind to yourself.

As others have said the positive side is that your child will get earlier help and you have time to get his statement right and choose the right school for him. smile

jjones Sat 12-Sep-09 15:55:07

Thanks for all you advice. I know ds functions about 12 -18 months and after talking to nursery I think the paed is laying it safe and covering all bases. He Is still my gorgeous baby.
I have now arranged to go and view 2 units within mainstream schools and i have already been to see the local sn school which I thought was fab only problem is there are only 6 places for children like ds within key stage 1. I think we are very well provided for in this area, going by what I have read on here. He will get transport as wel so I might go and look at some a little further away in the borough.

moondog Sat 12-Sep-09 17:38:50

That sounds great.Look around, take you time and ask lots f questions.
Often useful to compile a list before yuor visit and take someone with you to jot down the answer while you focus on chatting to stafff and looking around.

vjg13 Sat 12-Sep-09 18:06:12

Look in neighbouring LEAs as well so you really get a feel for what is in your area. If you feel the local special school will best meet his needs don't worry about the number of places there, any shortfall is the LEA's problem and parental choice is the starting point.

sickofsocalledexperts Sat 12-Sep-09 18:25:24

My son had a similar diagnosis at the same age and I agree with all that everyone has said, but I would also start doing some stuff with him yourself like drawing words out of him - eg hold a bag of his fave food just out of reach (crisps, choc) and get him to make an attempt at the word (even "ch" or "c") before he gets them. Then give him lots of praise. Next time try and get a clearer attempt, and so on. It can take ages, but the thing I regret now is that, at a similar age, I was told not to FORCE him to speak, but I look back now and think that was quite quite wrong advice. Speaking is a behaviour, like any other, and if they have the capacity to make the mouth movements necessary for speech (which he has, if he says no) then they can be taught to make other mouth movements (ie talk) in order to get what they want. The risk is with a non-verbal child that you just stop talking to them, whereas in fact you should be labelling things in simple, one word labels all the time. Also, start cracking down on any bad behaviours now, before they get entrenched. You are not being cruel doing this, you are actually being kind in the long term. Good luck!

jjones Sat 12-Sep-09 21:21:02

Sickof I have been doing that ad he has been saying half words which I repeat in full after him, the problems is that 'no' is the only word that has stuck, he has said other words and then stops. Salt has said she thinks he has trouble retaining the words.
Thanks for the advice moondog and vjg I will make a list tomorrow and I do have someone coming with me, my mums friend works for our local parent partnership and she has offered to come with me. I dont want to decide about unit v sn school until I have seen all options. The good thing is ds2 will be starting high school next year so I wont feel any worries about nt sending ds3 to the same school.

sickofsocalledexperts Sun 13-Sep-09 14:16:41

I think eventually the words will stick JJ, as my boy also had only "no" and then "go away" for years, but then started saying more after much much much repetition. It is just that they take so much longer to get into the "hard drive" of my boy's brain, whereas with a nf kid like my DD and some kids I childmind they are in there after a couple of tries.

grumpyoldeeyore Sun 13-Sep-09 16:47:23

My son is 2.10 and got a mod-mod severe asd diagnosis 2 months ago. We were told they could not assess if he had learning problems until he was nearer 4 or 5 due to non compliance with testing and because alot of testing relies on verbal response. Alot of professionals wouldn't have given a diagnosis about IQ as they would say it is too unreliable at 3; so I would not necessarily assume this is accurate. It could be that his ASD and ADHD are interfering with his learning eg his attention span, concentration, compliance etc. It will help you get a statement - we were refused even an assessment for a statement but now he has a more dire diagnosis than expected they are looking at it again. Also often the reports say the worst to help you get the most help, otherwise the LEA won't put in the resources if they think child is HF. At the end of the day they only see a snapshot of your child, don't let that override your own instincts. Children can and do move along the spectrum we have seen alot of progress with our son, in the past 2 months he has turned a corner with speech and become more interactive. It will help you argue that your son needs many hours per week of specialist help rather than an untrained teaching aide for an hour a day etc. As far as the special school goes I would go for it as your child will still get 2-3 years input there even if has to move at KS1. We are trying to get our son into SN nursery on same basis and expect he would have to move to m/s at Yr 1 but I still think that 2-3 years fab input is worth it and they transfer them over to a new placement slowly - often running dual placements for a while so just concentrate on getting the best you can for now. Special schools have kids transferring in and out all the time.

jjones Sun 13-Sep-09 21:54:32

Thanks for the reply grumpy,ds is in a sn nursery but the sn school wont take him until ks1 so he will stay at the nursery until then if the lea agree to him going to that school.
I am hoping we see an improvement in ds's speach as the nursery does hannan and pecs as routine which I think is great. Salt is going into nursery as well so is good.
I agree about the learning difficulties, I dont know how they can test him as he is tottal self directed and can ot talk.

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