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what would you do ?

(22 Posts)
boocha Thu 31-Jul-08 14:28:10

My ds has just turned five and will be going into year1 in sept (one of youngest which doesnt help).He was dx'd early last year with specific language impairment,He was assessed over a few months for asd by speech therapists,ed phych and others within the chid development centre and eventually they decided that even though he did display some asd traits not enough at a young age (3)for asd dx.
We were more than happy with this dx (in denial) and to be honest during the assessment process looking back I think we did withold some behaviours, stupidly I know.

We have never had any problems with funding for statement, never even had to ask, and ds has 16 hours 1 to 1 in school, a speech therapist comes into school every week for 1.5 hours and also a speialist teacher comes in weekly for an hour to work with him.

His progress in school is ok,behaviour is very good is well liked but no special friend, speech is coming on, academically he is poor and has no interest whatsoever in reading writing, hoping this will come!
He also had terrible glue ear and had tonsils + adanoids removed, gromits inserted a year ago.Wehave noticed big difference since the op.

Anyway the whole point of this post is that his sometimes quirky/strange behaviour as he is getting older is much more noticable, he is obsessed with disney/dreamworks/pixar and in conversations with others he just rambles about what he wants to talk about and doesnt listen .The summer holidays bring it all to the fore we live in a culdesac and he is now playing out with big sister, the other day he was walking about with his trousers round his ankles, he cant ride his bike with stablisers and getting him to eat is a nightmare, there are lots of other niggles too.
However he is a delight, frustrating at times,huge worry,love of my life little boy!! Do I go back to development centre like they said I could in future and get the asd dx that I know they will give him.Or do I leave him be? What difference will a dx make? He has statement speech therapy etc, does he need the official diagnosis?
He is making great improvements daily but I have a feeling that his quirkiness is him and always will be.
What would you do?
TIA

boocha Thu 31-Jul-08 14:31:15

To add, also his level of understanding is very poor and a lot of stuff just goes completely over his head.

Tclanger Thu 31-Jul-08 14:54:37

Message withdrawn at poster's request.

ChopsTheDuck Thu 31-Jul-08 15:04:39

Do you think he might benefit from OT?

If he has other issues too, the other problems you are talking about aren't really going to help and might become more apparent over the next few years.

Is there anyway of looking to meet these other needs without the asd diagnosis?

My ds has a dx of dyspraxia. The idea is that in a few years they would decide if he needed the asd diagnosis as well, as his symptoms would be more noticeable then. I'm also hoping to avoid it, so I know how you feel.

ChopsTheDuck Thu 31-Jul-08 15:06:32

sorry, I mean the other problems arent going to be helped

boocha Thu 31-Jul-08 15:06:51

Thanks tclanger for your reply,
Your ds sounds alot like mine, think speaking to his salt is a very good idea as even though she writes in his book every week and I know specifically what they are working on, it would be interesting to hear her thoughts on the asd aspect. Although something tells me she might not be too forthcoming on commenting. (they dont like to be quoted at a later date!)
Its hard to know what to do.

boocha Thu 31-Jul-08 15:11:08

Chops, OT was mentioned at his last review, and headmaster looked into it , then told us we would have to go through gp for referal. Do you think he would benefit?
How old is your ds?
Trying hard not to stick head in sand.

Tclanger Thu 31-Jul-08 15:15:39

Message withdrawn at poster's request.

ChopsTheDuck Thu 31-Jul-08 15:17:39

my ds is 6 now. We've been waiting for ot for the past 2 years. We were referred by a physio who said he was too good for physio but would benefit from OT. I don't know too much about it yet, but initial assessment will be in a fortnight.

I've also found that quirky behaviour has improved a lot over the past few years, but he still is very odd, but I think of him as dyspraxic with autistic tendancies rather than autistic and hope to avoid the autism label which I feel is going to hinder more than help him.

I really would go and ask about OT, or whatever help they are prepared to give but tell them that you want to wait before labelling him with anything else, because you probably will see a bit improvement over the next few years, and I can understand why you don't want him weighed down with another label.

Tclanger Thu 31-Jul-08 15:22:10

Message withdrawn at poster's request.

boocha Thu 31-Jul-08 15:30:34

Tclanger, I will take a look at your blog, thanks for your replies.
chops, I will see gp about OT, as you say, any help they are prepared to give should be taken.
Tbh honest I think I am erring on the side of leaving him a while longer before going back to go through all the assessments again which are very stressful, I know dh certainly wants to leave him be for a while as he has made big improvements over the last year.
Yes the tought of another label makes me feel sick but I want to be realistic.

boocha Thu 31-Jul-08 15:42:52

Tclanger,
How do I know though if the intervention is fully meeting his needs?, yes there are improvements but apart from a meeting every 6 months at school with senco etc where they tell us he is coming on ok, how can I judge?

Tclanger Thu 31-Jul-08 17:15:05

Message withdrawn at poster's request.

Tclanger Thu 31-Jul-08 17:17:37

Message withdrawn at poster's request.

boocha Thu 31-Jul-08 19:23:31

Tclanger
We were "pushed" initially to send our ds to a school in another town with a speech and language unit and after much soul searching and alot of tears decided to send him to our local mainstream school where our dd attends, tbh they have been fantastic,ok so he isnt academically meeting targets but what did we hope for in his reception year?
Well we hoped that he would interact with other children, line up at appropriate times,dress and undress himself for pe, toilet himself,sit when told,write his name and most of all just enjoy school. Do you know what? he does all of these thing perfectly!Ok, its not been easy and weve had hiccups along the way, but its all relative because prior to starting reception I would never have thought it possible.
I really do believe that the support he is receiving is working. I get very frustrated with his lack of interest with reading and writing but school tell me that there is no use battling with him about it,in school he does try so what more can I ask? Socially at least he is coming on in leaps and bounds, children dont get very much sense from him in conversation but he is very approachable and always is smiling.
The headmaster at ds school is also the senco and has a son himself on the spectrum so I do feel in that respect that we are at least listened to.
Dss TA is great and he runs in every day. So I suppose Ive answered my own question! Is the intervention in place meeting his needs? Yes?
Ive rang his salt today who is calling me back to chat tomorrow, I feel I really need to talk to her about the whole asd thing.
I really appreciate you responding to my post, and feel that writing everything down has given me some perspective, I do feel that I need to lighten up a little and give my ds the credit he deserves.I also need to acknowledge that the targets that are set academically in school are not going to have any bearing for us. It is very hard to get my head around this as dd is the complete opposite and has always been a reade/writer.
I suppose Im not the most laid back of people and I'm finding my ds problems so frustrating.
We are all learning from him in other ways I suppose?

boocha Thu 31-Jul-08 19:27:50

Forgot to say your ds sounds as though he has made fantastic progress, I was reading on your blog about him now asking "why" questions.
I cant wait for that!

nikos Thu 31-Jul-08 20:14:49

Your ds sounds like he is doing great so I can completely understand your not wanting to have another label. But there might be certain learning strategies that are specifically for ASD which might help your son perform better (although maybe he is getting these already). I'm thinking things like visual aids etc.
It should be possible to get some of these things through the SALT I would have thought without going through the formal dx.

Tclanger Thu 31-Jul-08 20:28:09

Message withdrawn at poster's request.

BriocheDoree Fri 01-Aug-08 07:53:24

Just wanted to say hi to Boocha. My DD also has some kind of communication disorder and she's pretty tough to live with at times, though an absolute adorable sweetheart (when she's not trying to sit on her baby brother). I'm also struggling with whether to push for a formal diagnosis as it might open the door to more help (we also pay for private SALT and don't get much else, although we have some referrals coming up in September).
TC, that's fantastic about your son asking "why" questions. One of the things I'm finding quite tough at the minute is that most of my friends who have children DD's age (4) are always talking about how frustrating it is that their DCs won't shut up, always asking questions, etc. Makes you want to grind your teeth!!

TotalChaos Fri 01-Aug-08 09:32:37

Hi Boocha. My DS is 4.4 and has a language delay and supposedly is "probably not" on the spectrum, but nobody is prepared to absolutely rule it out at this stage. Since your boy is happy at school and he's getting plenty of 1-1 support I can see why you are having qualms about getting him assessed again. Like TClanger says, if he did have the DX he would probably get some extra support e.g. from visiting autism outreach services advising school and you could do some NAS courses. Btw if you feel that your boy needs a lot of extra care over and above the typical child his age, he might be eligible for DLA, I don't know if you are aware of this.

Tclanger Fri 01-Aug-08 13:17:58

Message withdrawn at poster's request.

boocha Fri 01-Aug-08 14:00:27

Hi Brochedoree + totalchaos
We recently applied for and were awarded dla at the middle rate, the form is a nightmare to fill in but the extra money is great. We really struggled with the whole "disability" aspect but at the end of the day ds does take more looking after than an average 5 year old.
It has taken me a long time to stop comparing ds to other children his age because it isnt fair to him or us and it just gets you down.
I suppose he'll get there in his own time.
Amazing tclanger that just last october a meaningful conversation wasnt possible!

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