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#554004 - 31st Jul 2011 11:36am Anyone on here with autistic children
mistybluered Offline
Enthusiast

Registered: 13th Sep 2010
Posts: 178
Loc: Tranmere
My dear 3 year old is just starting the stages of going through the tests for autisum! Called in the health visitor when she was 2 and she tried to say it was excessive temper tantrums and i knew there was more to it than that! So i had to push and push it through my dr, and now something is getting done I have washed my hands with the health visitor now because the testing could of started 12 months ago!

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#554007 - 31st Jul 2011 11:40am Re: Anyone on here with autistic children [Re: mistybluered]
Softy_Southerner Offline

Forum Guardian

Registered: 2nd May 2008
Posts: 4090
Loc: Back in Devon
There are several groups on Face Book which may be a good starting point
Good Luck
x

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#554033 - 31st Jul 2011 12:39pm Re: Anyone on here with autistic children [Re: mistybluered]
mistybluered Offline
Enthusiast

Registered: 13th Sep 2010
Posts: 178
Loc: Tranmere
thanks will take a look

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#554076 - 31st Jul 2011 2:46pm Re: Anyone on here with autistic children [Re: mistybluered]
Snickas Offline

Forum Addict

Registered: 6th Jul 2011
Posts: 1175
Loc: Wallasey
Hi

I have 2 autistic boys, ones 17yrs old and my little one is now 5yrs old. J (my little one) went under assessment having Speech and Language assessment when he was 2 & 1/2yrs old as he was non verbal & echolalic. We then went onto being referred to SESS (Special Education Support Service - consists of specialists with the Early Intervention Teams, ie portage, portex (ASD Specialists), education psychologists and peadiatrics). And then a further referral to OT due to his (lack of) co-ordination skills and hypermobility. (they helped with equipments)

He was eventually officially diagnosed when he was 3 & 1/2 yrs old, and is now attending a specialist school (which is an amazing school).

If theres someway I can help you with advice, please don't hesitate to pm me smile
Theres also a forum that I try to help alot on called ASDfriendly its a support group for parents/carers, from diagnoses to helping on the education side of things (getting statements etc.)


Edited by Snickas (31st Jul 2011 2:46pm)

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#554089 - 31st Jul 2011 3:05pm Re: Anyone on here with autistic children [Re: Snickas]
SUExx Offline
Forum Addict

Registered: 4th Jan 2009
Posts: 1701
Loc: new ferry/bebington
[quote=Snickas]

He was eventually officially diagnosed when he was 3 & 1/2 yrs old, and is now attending a specialist school (which is an amazing school).


Which school is that, my sister has two autistic boys who go to hayfield in upton. They are aged nearly 8 and one of 10.

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#554093 - 31st Jul 2011 3:13pm Re: Anyone on here with autistic children [Re: mistybluered]
Snickas Offline

Forum Addict

Registered: 6th Jul 2011
Posts: 1175
Loc: Wallasey
Yeah he goes to Hayfield.
And my other son goes West Kirby Residential school as a day student.

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#554135 - 31st Jul 2011 4:24pm Re: Anyone on here with autistic children [Re: mistybluered]
mistybluered Offline
Enthusiast

Registered: 13th Sep 2010
Posts: 178
Loc: Tranmere
My daugther doesn't have speech problems but she is being sent to speech and language. She is a tippy toe walker, and has hypersensitivity to all senses and for the love of trying she is still in nappies and she is 4 in october! she also has milk,egg and wheat allergy. She is in foundation 1 in christchurch primary school at the moment.A new health visitor and staff nurse has got involved now and there getting the autistic society involved and are doing team around the child, portage are getting involved when she returns to school in september

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#554156 - 31st Jul 2011 5:03pm Re: Anyone on here with autistic children [Re: mistybluered]
Snickas Offline

Forum Addict

Registered: 6th Jul 2011
Posts: 1175
Loc: Wallasey
Originally Posted By: mistybluered
My daugther doesn't have speech problems but she is being sent to speech and language. She is a tippy toe walker, and has hypersensitivity to all senses and for the love of trying she is still in nappies and she is 4 in october! she also has milk,egg and wheat allergy. She is in foundation 1 in christchurch primary school at the moment.A new health visitor and staff nurse has got involved now and there getting the autistic society involved and are doing team around the child, portage are getting involved when she returns to school in september


My little boy has Sensory Intergration Disorder, which sounds familiar to your daughters hypersensitivity to all senses. Theres a really good site all about it Here - Sensory Processing Disorder (its american because UK hasn't quite caught up in terms of SPD yet, as in there is no therapy on the NHS for it yet, but OT can diagnose it as ours did but couldn't do the therapy) . We had to get a safespace installed for J's bedroom because of the levels of his SPD.
He was also in nappies until this time last year (was 4 & 1/2 then). He just took to it, in his own time, with no pressure from us. Its so hard, I know I felt under pressure to get him toilet trained asap especially in nursery because the peers in his class were all toilet trained...but given his own time to do it and he eventually did.
Wirrals Autistic Society are great! They keep us in the loop of any clubs etc going. They also do a parent course called Early Bird, which was a tremendous help for us. We learnt to use PECS (picture exchange cards/communication) there.
TAC meeting should help you alot, when we had ours, J's pead came (as well as everyone else involved in J's case) and once it was confirmed everyone had the same opinions that he was on the ASD scale, he was diagnosed and then it was decided we were all in support of a statement to get J into Hayfield.

It sounds like you have the right people involved. Our portage was an amazing help to us, very supportive, hope yours is too smile
Have you heard about MACS? Merseyside Autistic Childrens Society? They hire Adventureland (New Brighton) and Europa Pools exclusively for Autistic children and their families? We go every month, I can pass you on some dates and contact details if you want smile

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#554185 - 31st Jul 2011 6:11pm Re: Anyone on here with autistic children [Re: Snickas]
mistybluered Offline
Enthusiast

Registered: 13th Sep 2010
Posts: 178
Loc: Tranmere
yes please! we found out our daughter loves the baths when we went on holiday this year but can't take here at the mo as its free swim because of the holidays and she can't cope with the noise!

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#554191 - 31st Jul 2011 6:45pm Re: Anyone on here with autistic children [Re: mistybluered]
Snickas Offline

Forum Addict

Registered: 6th Jul 2011
Posts: 1175
Loc: Wallasey
Oh I know exactly what you mean! J could/would never be able to manage/cope with all the noise and splashings any other time. My other son would never go again if he saw anyone looking in his direction! But he loves it just as much as his little brother smile
You'll love the MACs sessions

MACS
Royal Standard House
334, New Chester Rd
Birkenhead
Wirral
CH42 1LE

Telephone
Office: (0151) 644 1191
Mobile: 07546233694

Or just come along to one of the meets, next Adventureland session is 6th August from 6pm-8pm (mine love it there, they can just run and bounce for 2hrs non stop and not have to queue to go on anything!). They do it every 1st Staurday of ever month and it costs 1.50 per child.
Next Europa Pool session is 14th & 28th August, they do these every 2nd & 4th Sunday of every month. From 6.30 - 7.30pm but the cafe stays open til 8pm so you can grab a cuppa (or chips for the kids). It costs 1 per person (swimmers & non-swimmers).

To join MACs properly (first session isn't a problem as they know and understand that its dependent of the kids and you can get details etc) its 15 a year for the whole family. When you consider how much it would normally cost to get in Europa and adventureland....
They also do trips throughtout the year as well. We went to Rhyl's Suncenter on Thursday (exclusive to just MACs members) and we went to Chester Zoo in Easter hols and they only charged 15 per family and that included coaches as well!!!

forgot to say, MACs is a parent ran charity, so they are wonderfully supportive and they just know what its like smile


Edited by Snickas (31st Jul 2011 6:46pm)

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#554198 - 31st Jul 2011 7:17pm Re: Anyone on here with autistic children [Re: mistybluered]
mistybluered Offline
Enthusiast

Registered: 13th Sep 2010
Posts: 178
Loc: Tranmere
Thanks very much Snickas you have been very helpful! just looking on the asd site now about help with filling dla forms! it is such a scary form to fill in and its been sitting there for a week and a half as i tried the welfare right would help and phoned up and they said no! will read up on it on the asd site and see if i can make any sense of it lol!

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#554207 - 31st Jul 2011 7:47pm Re: Anyone on here with autistic children [Re: mistybluered]
dizdazdoz Offline

Wise One

Registered: 17th Jan 2010
Posts: 866
Loc: Here
Originally Posted By: mistybluered
Thanks very much Snickas you have been very helpful! just looking on the asd site now about help with filling dla forms! it is such a scary form to fill in and its been sitting there for a week and a half as i tried the welfare right would help and phoned up and they said no! will read up on it on the asd site and see if i can make any sense of it lol!


If poss try and get in touch with the resource place in New Ferry, it's not called that really but unsure of proper name, it's opposite Port Sunlight Legion and they are brilliant with DDLA forms and will go to any appeals with you. I will try and pm you the number for them later as they do the form by appointment only but well worth it and it's no charge. They helped with our daughter's autism dla claim about 8 months ago.

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#554209 - 31st Jul 2011 7:52pm Re: Anyone on here with autistic children [Re: mistybluered]
Snickas Offline

Forum Addict

Registered: 6th Jul 2011
Posts: 1175
Loc: Wallasey
DLA forms, what a nightmare You have my every sympathies, i'm still traumatised from doing J's frown
Cerebra do a guide book that helps so much when filling in childrens DLA forms. The link to the pdf format is here . Its a great guide that helps you to word it and explain it all so well.

Just tell them the honest truth of how much hard work it is, of every littlest thing, the more info you give them, the better. Even give a complete breakdown of getting up in the mornings to finally getting them into school...I know here, every item of clothing has to be negotiated, 20mins to get a sock on, another 20mins for the next one and so on...

If you get really stuck on a question, give me a shout, I might be able to help (have been filling them in for over 13yrs now).

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#565078 - 19th Aug 2011 4:50pm Re: Anyone on here with autistic children [Re: Snickas]
starakita Online   content

Forum Addict

Registered: 1st Oct 2009
Posts: 2169
Loc: between heaven & hell
my 10 year old daughter was diagnosed with asd in April,she's in a mainstream school but she gets a lot of help.I was told by another mum who has an autistic son in the same school to claim for dla although not everyone gets it first time round,I was lucky I got mine through the other day.Filling the form in was mentally tiring & some of it was repetetive but filling it in made me realise the time it takes in looking after my daughter.we had a meeting with Steve Vasey from wirral autistic society & he was a great help.My daughter loves computers so she now goes to a computer club run by the society in Bromborough which she loves going to.
_________________________
no1s gonna keep me from u

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#578950 - 9th Sep 2011 12:09am Re: Anyone on here with autistic children [Re: mistybluered]
mistybluered Offline
Enthusiast

Registered: 13th Sep 2010
Posts: 178
Loc: Tranmere
Hi Starakita, i have met Steve Vasey the other week in the dropin centre he is a very nice man!My daughter is 4 next month and she only plays with consoles or computers as she needs things that are mentally challenging she won't play with any other toys! It is hard work my daughter has bad major melt downs that i find hard to cope with as she wont be cuddled out of a melt down you have to let it burn itself out! also her sleeping is terrible too so dont think that helps with the melt downs! she has been on phenergan the dr perscribed but not much good at all!

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