Kel

Thankyou all It really is good to know that I'm not being a freak!! I'm already calmer with the whole thing - amazing how quick you get over things isn't it?! I'm now focused on our next challenge - and I'm sure when we acheive that there will be another one I'm not sure I will become a regular poster here but it's good to know people are here if I do need a little extra support. <'> <'> <'> <'> To everyone!

Hi all I came to this site a while ago but drifted away after I felt like all I was doing was asking for advice & support & not returning any! I know that sounds strange!! And yet here I am again seeking advice & support!! Just a quick recap on my life - I am a mum of 2 boys aged 6 - ASD (finally diagnosed last week after 4 years of trying!!) and aged 4 - NT. Oh my now where do I start? Ok - Tom just got a diagnosis after 4 years. Everybody who wored with him said he was clearly autistic but the idiot peadiatrician we had doesn't believe in diagnosis before the age of 9! Hello! What about early intervention? Anyway - now he has his diagnosis I feel stranglet hollow. I have fought for thi sfor so long I don't know where to go now. Is it normal to just fold after diagnosis? Everything has changed recently too - I have requested Tom split his time between mainstream school and a specialist autism unit but insisted that his current 1-1 go with him to the autism unit & amazingly they allowed it! We have also just finished a year long university study (PACT - Pre-school Autism Communication Trail) where we traveled a 5 hour round journey once a fortnight. Toms behaivour is up the wall at the moment and he is super intollerant of anyone being anywhere near his space! I know a lot has changed for him recently but I am really finding it hard to cope with everyday things. we made a lot of prgress taking part in PACT & suddenly all the hard work seems to be for nothing. Sorry to babble on - but I'm going to ha ha Also climbing is such a huge problem - Tom broke 3 bones in just over 12 months (Sept 07 L arm - Jun 08 R collar bone - Sept 08 R arm) climbing!! He still climbs like a mountain goat! we are spending every spare penny we have got right now trying to "Tom proof" our home but he still finds ways to climb. We even spent a lo -o - ot of money on a climbong frame for the back garden hoping it would get all the climbing out of his systembut he still preffers the banister!! Wow that is a lot! Thanks to anyone who got to the end of that ramble!! You are a saint!! Anyone who feels similar - HELP!!

Tom was speaking normally at 18 months - then started losing words. By 2 all he would say was numbers - he counted to 15 in English & 12 in Spanish! He started reciting songs in giberish & babble when he was about 3. We did Makaton signing with him and some words did come back, that was 12 months ago. Now at 5 he can say single words to request food / juice etc but will recite entire TV programs or books. Not in nappies but not exactly toilet trained either Like Elun 1 said - I get asked if Tom is speaking yet - I say he talks but doesn't communicate YET! Big inflection on the Yet!! PECs didn't work for us but Makaton did. If you find Elliss' breakthrough you might open the flood gates like we have! Tom is improving with his speech all the time at the moment.

Rq <'> Tom is only 5 so I can still carry him out under my arm!! We used to do a count down - but his school have given us a set of progressional (spelling?) egg timers! We now choose the appropriate one tell him - when time runs out we do this or that - then turn the timer over....... how much time we need dictates which timer we use. Tom is really responds to the timers - except when he is really enjoying something he will try to turn it back over before the sand has run out!!

You don't sound like a moaning minnie! You sound like a mum who doesn't want her son left out. I argued with a mum at Toms' school because every other child in his class got an invite to her daughters bday party & Tom didn't. She told me she didn't think Tom would like to go as he ignors other kids. I said that was beside the point. She invited us & I said no thanks Tom doesn't like that type of party!!

Toms' Senco organises meetings at the end of each term inviting Myself & hubby, head of current class (now reception), Ed psych, speech therapist, portage worker, Paediatrician (who never attends but I think he's a waste of space anyway!!), Toms' ASD pathways worker, Toms' PA and of course herself. I thought this was standard with a child with social / communication / behaviour problems (We have no dx yet!) In mainstream school - Or have I just really got lucky with my choice of schools. I also recieve EVERY report in the post within 2 weeks of assesment & have never been told I couldn't attend an assesment.

Thanks for all the really posative replies to this. In case I did offend anyone ...... I am really proud of Tom & I am not embarassed to tell people he is autistic. When he sat under a table in a cafe rubbing his cheek against a womans fury boots, or when he licked someones arm in the supermarket!! Just saying I am sorry if he offended you - he is autistic - difuses the situation immediatley and made both women in question smile. My issue is that my sister would walk around the entire room telling everyone there - before a situation might arrise - like it is a dirty secret. This makes me really angry. I just don't feel like I should apologise for Tom for who he is. Hope that is a bit clearer Kel xxx

Oh Anne that is classic! I wish I'd come out with it!! Most people are really OK when I say he has autism. Tom licked a womans arm in the super market about 2 months ago - she looked like she was going to kill me till I told her he was autistic. After that she was fine - she was all - don't worry dear. It's the really ignorant people I worry about. I want to scream "Read a ####### book for gods' sake!!!!! Hope I develop thick skin somewhere along the line ........... Kel xxx

Tom is 5 and his paed seems to not have any interest in seeking a Dx. I asked hv at 18 moths for a referral she did nothing! I asked GP at 23 moths - he sent us for hearing tests. We were told that Tom had glue ear - under anaesthetic the surgeon realised there was nothing wrong with his ears!! I put my baby through surgery for nothing! We then had to go back to the gp for a referral to a cdc - we have been there for 3 years & haven't moved on as the paed doesn't believe in Dx before 8! We have an appointment in March where I will insist we see another Dr!!! I Know Tom is on the spectrum. He has had an ADOs assesment and scored 17. If we had a Dx sooner we could have had more support without fighting for it! Kel xxx

My sister & I argue over how I should deal with Toms' behaviour in public. Like when we go to a play group or clinic appointment and Tom is banging a toy against the floor / wall and screaming, or when we have the mother of all tantrums in public where I end up on the floor rocking him & stopping him from hitting himself. My sister would happily walk around the room saying "He is autistic" but I'm not so sure. I have the - This young person has autism ...... - cards from NAS & have used them, but I don't want Tom judged. Tom has had an ADOS assesment & scored 17, which definatley puts him on the spectrum, but we don't have an official Dx & I still feel like a fraud using the cards. I have also come across some really ignorant people... I Quote "What like Rain Man?" "I've seen after Thomas & your son doesn't wear nappies!" "Don't let our son / daughter near that kid he is autistic!" Ignorance like this makes me mad How do the rest of you deal with public reaction as I don't know whether it's best to sign post Tom or have people believe I'm a dreadful Mum & he is a really naughty boy!! Kel xxx

Huge family again - (Catholics ) My brother was the 1st Dx with dyspraxia - since him 8 cousinns have the same Dx. We pushed for the generation above to get tests - 3 aunties Dx dyspraxia - 1 dyspraxia + As. Then we asked my Nan to go through testing and she has Dx. I definatley think there is something hereditory!

My cousin tried to be reffered for possible dyspraxia but couldn't on the NHS. Someone advised her to enroll on a college or uni course as most have Educational Psychologists who are usually better trained at looking for symptoms. She got her referral via the college and they even funded it. She now has a Dx for Dyspraxia with som AS traits. Hope this helps

Wow! Thanks for all the support and warm welcomes everyone. We have a huge amount of support already via community projects and Toms' school - Tom has a statement which provides him a full time PA at school, the school liases with a local special needs school for advice, Tom has a speech therapists and we also attend intense play and speech therapy sessions once a fortnight. The family also has a Portage worker to advise on home life. Everyone involved recognises that Tom needs a lot of help except the paediatrician who is the one man who can get us a refferal for a Dx. Glad to know others have been through the same type of problems - It'll give me the strength to tell the Dr he's wrong when we see him in March!! Thanks again everyone Kel

Just wanted to say hi and introduce myself a little. I'm Kel - I have 2 boys, Tom is 5 and PJ is nearlly 4. We believe that Tom has an ASD but we are finding it really hard to get a referral for a diagnosis - Mainly due to an old fasioned paediatrician who says he will not diagnose until the age of 8. Also as Tom doesn't 'tick all the boxes' this Dr has treated our family quite badly and made me question myself, even though every other person involved in his care are appalled that he has not had a referral. I'm hoping to talk to people going through similar issues to our family and maybe gain / give advice on shared problems and experiences. Thanks for listening Kel xxx