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DS just been dx with ASD

(18 Posts)
LithaR Wed 12-Nov-14 21:56:26

Don't know what to do or how to cope. I kind of knew it was coming, but an official diagnosis means I have to face this head on. I have no idea what this all entails, I don't know what to except for school etc.

Unfortunately my ds has been having some new troubles at school the last two days. He's started challenging the teachers and I don't know if it's a sign that his SALT is working or something else. Any advice would be welcome right now, my son is 4 sad

frizzcat Wed 12-Nov-14 22:37:53

Most of us here have been in the same boat.
Take your time, let the news settle in, it doesn't matter if it was expected its still a shock. You will not always feel the way you do right now, it gets better.

The difference between today and yesterday is that you definitely know what you're dealing with. My ds is 10yrs dx ASD, he's in mainstream school, supported and doing well. He's sensitive to noise, has a language delay and struggles socially but he's getting better at it

What's your ds like? In what way is he challenging teachers?
There are lots of really knowledgable people here, this board got me through the aftermath of the dx 4yrs ago and it still does keep me going.

LithaR Wed 12-Nov-14 23:11:06

Well the teacher has told me that he's started saying no to everything. He's had 6 sessions of SALT so I'm kind of kidding myself that it's working and he's now finding his personality.

He's had language delay since he started nursery. And his school recently found he had some physical delays. He's a very bright boy and loves his computers, but I want him to stay in a normal school. I'm scared his challenging behaviour might mean he is forced to go to a 'special' school away from his support network.

I really want the school to work with me because his cousins will all be going to his school, so can be his friends if he ends up isolated. I want him to have the best life possible, and the fact that he is not coping at the moment with his school worries me. sad

MommyToMyLittleStar Thu 13-Nov-14 00:22:53

Hi LithaR,
I don't have any advise, but just wanted to say I am in the same boat.
My DS got diagnosed last month- 2 weeks after his 3rd birthday. He only has a few words which he rarely uses. So his main issue is speech & also he prefers playing alone or alongside than interacting with his peers in nursery.
I am reading up all options available for him- NHS, private & also looking into EHC plan, schools around etc.
I hope your DS does well. I guess having a diagnosis means school will now know he's not misbehaving but has a medical reason for it. Hope things work out for him & what I learnt in the last few days is we parents know them best- so don't let anyone else tell you what he should do etc.

autumnsmum Thu 13-Nov-14 05:04:04

I hope it works out at the mainstream , but my daughter goes to a special school and it's lovely , they do
Lots of activities and she has made lots of progress , hearing the diagnosis is so hard flowers but he is still your boy

Firstnamelastname Thu 13-Nov-14 06:19:44

I found this book - the autism parent's guide to reclaiming your life - very useful

Ineedmorepatience Thu 13-Nov-14 08:04:45

Echo what autumn said, he is still your little boy and now he has a diagnosis the staff at school have a signpost to point them in the right direction to support him.

Had to smile though at a reception teacher worrying about a 4 yr old child saying "No"!! Oh dear wink

OneInEight Thu 13-Nov-14 08:19:18

The teacher needs to learn to phrase her questions so that "no" is not an option. When mine were in Year One this was a problem for their teacher e.g. she asked them if they would like to do a bit more work and, of course, they said "no". I overheard her also saying the same thing at parent's evening to another parent so is probably quite common at this age never mind any ASD.

LithaR Thu 13-Nov-14 08:48:36

I know what you mean about the "no". I was surprised by her reaction and it made me question whether he is in the right school environment.

I had hoped that the school and my ds would benefit from him being there. There are quite a few children in the school with special needs. So maybe they are tired from having to teach so many challenging children.

frizzcat Thu 13-Nov-14 10:04:59

Children aren't sent off to special school as soon as challenging behaviour has been spotted or a dx given. That said, do not be afraid of the word special school as they in the main do a fantastic job and many children flourish where they wouldn't, had they stayed in mainstream.

Special schools are an expensive option for LA's and usually the last option. They will prefer to provide support (ECHP, used to be called a statement). Bear in mind the LA will be supporting your child from the pov of affordability and not what your child needs, hence my cautioning of ruling out a specialist school.

Have you booked a meeting with Senco and maybe the class teacher? Go through each of his behaviours displayed in the classroom. Ask what they can do to support him to modify the behaviour. Ask if he is able to access the school curriculum like his peers? If not then, I would also be looking at applying for the ECHP so your ds has support.
Does he have an IEP?

LithaR Wed 19-Nov-14 11:51:41

Well it's still relatively recent that he got his diagnosis, so the school isn't in full sync yet with what help he needs.

It doesn't help that the old SENCO left so the new one is still finding their feet. At the moment I've been looking into getting a buggy for him, since he will refuse to go to school unless I carry him there and back. Although he's not a chubby boy he carries a lot of weight in his long bones.

My family are cautioning against it since living in a village, it will make him stand out. But surely I have to go with both of our needs. I'm so torn and feel a bit out of my depth trying to figure all this out and come to terms with it all. sad

Frusso Wed 19-Nov-14 12:08:39

Message withdrawn at poster's request.

BlackeyedSusan Thu 20-Nov-14 23:15:02

what is the teacher saying that he is saying no to?

is she saying, "Would you like to put your coat on?" when she really means please put your coat on? if so she is asking for a No! in response

LithaR Fri 21-Nov-14 14:00:07

Well she wont give me examples of why. All she tells me is that he wont take his book out, 'even though he knows to do so'. That I should be firm with him and that I need to work with them to get him behaving.

It all seems to me like they do not understand what his needs are. He can understand basic instructions like 'fetch the book' but wont understand being told that he must remember his book every week on thursday.

I feel so frustrated with it all sad

LithaR Wed 26-Nov-14 23:01:33

I feel so gutted for my ds. His teacher pulled me up today and said he is now banned from outdoor trips to the library.

He had a major meltdown and wouldn't cooperate with the teacher so they have said they will refuse to take him with them from now on.

Feel so gutted sad

OldAntiquity Thu 27-Nov-14 12:16:31

So his teacher has absolutely zero understanding of autism then.

My child isn't at that stage so I don't know what you could do, but don't allow them to frame the issue as a behaviour/poor parenting issue.

And can they refuse to take him? Sure that's not inclusive?

Like I said, I'm clueless, sorry, but the school as it is is not right and you will have to fight, which others can help with.

However, I would say don't rule out special school if it's the right environment. From what I know so far of my 3 year old he would cope in mainstream and I actually think that's a bit of a shame. I think his development would be vastly improved with a few early years in special school with specialist teachers working on the things that are most problematic then to be re-integrated into mainstream. I love special schools, I think they are fabulous, so caring and nurturing. (I've worked with children with special needs and I've also volunteered in an EBD primary).

And use the buggy! No point wearing both of you out just because what other people think. Other people will be thinking things anyway! I say this as someone whose ds1 could walk 6 miles at 3 years old and with a ds2 who can't even do the shortest journeys without a pushchair for refusing. It sucks, thinking about what others think, but my littlest boy is my priority! (and he has a dummy too!)

frizzcat Thu 27-Nov-14 14:36:17

LithaR. This is utter bollocks! Sorry but the red mist has descended.

They can't exclude him from library trips or any other trip especially because he had a meltdown. He had a meltdown because of his condition, therefore it is discriminatory to say that because of this related to his condition outburst, he can't then participate in an activity his NT peers have access to.

You need to by-pass this teacher and make an appointment with the head teacher and the Senco. Write down everything the class teacher has said. Ask how are they going to support your ds? Are they refusing to take him on trips? You need to inform them you will be seeking advice from the LA as the school are not currently being inclusive or showing any signs of supporting him.
Ask them to explain the teachers comments about setting boundaries for your child - which is parent blaming for his condition.
Ask why the teacher can't provide examples of when he is non-compliant.

Sorry have to run, perhaps start another thread about this. Something like "no inclusion or support for ds". Otherwise people that can advise you will miss this issue. flowers

LithaR Sat 29-Nov-14 23:05:16

Thank you so much OldAntiquity and frizzcat, I will take a lot of your suggestions on board.

I think starting a new thread might be best, got his official diagnosis through the post this morning and it's autism.

So have a lot more to go on now, but need a little hand holding I think whilst I fight the school for what my son needs.

The main problem is my son is sensitive to touch, so handholding to him his a major issue sad

All schools want them to hold hands and be friends sad

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