Aspergers/ASD support thread

laverne_2

Mandles wrote: »

Can i ask how many of your kids with aspergers etc are able to do homework? My child is 5 and needs to zone out after a day at school , after 6 hours of constant stimuli. He sometimes does not talk for ages when he gets home as he gets in a bit of a trance or just has to chill in a quiet room for ages. I am getting to made feel like i am not a very good parent as "all the other parents fill in their childs reading diary all the time", and i don't. I feel so angry as i feel like i am being told off . The thing is that when he is mentally able (and when i am mentally able to be honest , as home life is hard with him ) ,i do do reading etc with him. I also said that it is hard as he just refuses and she said that she knows but they manage it at school!!!! I have written a note now saying that i took offence with this comment as they have him in the day and i know that it is a million times harder after he has had a full day to get him to do anything.
I feel so upset and angry. I liked this teacher too.

Also, if it says that he needs speech therapy twice a year in his statement and the school never do this where do i go from there? ..if they want to criticise me then they better be living up to what they are supposed to be doing.

My son is 6 and has autism. He very rarely reads his book after school so we started getting up 10 minutes earlier and reading after the morning routine, before we left for school. I found that he was much more enthusiastic and eager to read at the start of the day. If I find that he is struggling or not wanting to read he will sometimes agree to us both reading alternate pages. If this doesn't work then i will read to him and hopefully he will follow the words on the page with his finger (although sometimes he will just do his own thing while i feel like i'm reading to a brick wall!). I normally write a quick note in his diary eg, 'a lovely shared reading session with mum today' or 'refused to read today but enjoyed following the words on the page whilst being read to'.

It took us a while to get into this routine and we do have mornings when there just isn't enough time and the book doesn't even come out of the bag! Thankfully his teacher is very understanding and can see that we are trying to get him to do his homework when he doesn't want to do it. Hth

Mandles

laverne wrote: »

My son is 6 and has autism. He very rarely reads his book after school so we started getting up 10 minutes earlier and reading after the morning routine, before we left for school. I found that he was much more enthusiastic and eager to read at the start of the day. If I find that he is struggling or not wanting to read he will sometimes agree to us both reading alternate pages. If this doesn't work then i will read to him and hopefully he will follow the words on the page with his finger (although sometimes he will just do his own thing while i feel like i'm reading to a brick wall!). I normally write a quick note in his diary eg, 'a lovely shared reading session with mum today' or 'refused to read today but enjoyed following the words on the page whilst being read to'.

It took us a while to get into this routine and we do have mornings when there just isn't enough time and the book doesn't even come out of the bag! Thankfully his teacher is very understanding and can see that we are trying to get him to do his homework when he doesn't want to do it. Hth

Yeah, i have done that sometimes but mornings are hectic enough and i don't want to commit myself to saying i will do it in the mornings. I feel extremely angry at lack of understanding and the feeling that i am being told off for not doing my homework , when they have no clue what homelife is like with him. e.g last night up with him 4 times and he was up at 6.am and we all feel like the walking dead this morning now as he wakes up everyone! The last thing i want to do right now is fill out that b****y book!

Maybeanotherday

Hello I urgently need advice form someone who understands this field???
My daughter has been going through services for the past 2 1/2 years with ? autism and learning delay.
She had a nhs peditrition and was on melotonin for sleep, she's been seen by an educational psychologist who believed it was a problem with bonding that caused her behaviour, she was also seen briefly in school by a psychologist as the peditrition asked for an autistic assessment, the psychologist went to school and reported back that she could give eye contact so would not go through the autism assessment???

Anyway more time down the line and feeling stuck without any answers I approached NAS and they gave me the contact details for a private consultant, myself and my husband debated this for a while, couldn't afford to pay the money so borrowed it after feeling trapped.
The private consultant assessed for autism and dyspraxia but concluded she has aspergers...
SO TODAY I was booked in to see the peditrition and she told me my daughter is no longer her responsability but the private consultants, I explained that I couldn't keep paying for her care and that he couldn't prescribe the melotonin... basically she wasn't interested, and just warned me that the transition to high school may be difficult and to prepare for it and nothing....:eek::mad:

My daughter has run out of meolotonin and tonight is still up, and no doubt will be like this for the night:(
Luckily the GP has said he will prescribe for me and was speechless as to why this has happened...

So what now, in my situation what would you do?

Indie_Kid

Talk to your daughters' GP?

Dainty1976

I'd go back to the service where she originally got her diagnosis and speak to her case manager/care co-ordinator (or whatever term they use for the person who managed the whole process back then).

Speak to that person and hopefully they'll be able to step in on your behalf. Sounds like you could do with your GP referring her back to them anyways, as a means to getting this sorted.

Otherwise, all I can think of is to contact your local Parent Partnership organisation, they will most likely have experience and/or contacts who can help you with this!

Or contact the consultant peadiatricians secretary, explain the situation to them and see what she suggests. I have always found the consultants secretaries to be very helpful!

Hope that helps!

diable

I believe you are being palmed off so keep at it, you have to tell them what you need and what you want. I will as my GF as she works as a bank worker for the NAS and works with an Autistic guy who has 24/7 care in the community. Give me a few days and maybe send me a PM to remind me.

sleepless_saver

I think your problem is to do with the relationship between private and NHS care. If you have sought private care (or diagnostics) for a condition, getting back into NHS care can be a problem (particularly if the private diagnosis is not the same as the NHS one and if the staff concerned have strong views about private care).

You should check with your local trust what their policy is, and what your rights are, before you try approaching the pediatrician again. You might need a fresh referral from your GP, possibly to a different pediatrician. You might want to contact the Patients Association (0845 608 4455) for advice first.

BubblyMumbles

I would contact social services as well, getting a social worker involved might not be a bad thing.

esmf73

No advice except to stay strong and fight for what you believe you need. Loads of Hugs coming your way ((((((((((hugs)))))))))) x

JC9297

The NHS paediatrician does not have to act on the private diagnosis but they cannot say your not the NHS's responsibility now because you sought a private assessment. I would go back to your GP and keep pushing for an NHS assessment, one problem is who will do this- it varies from paediatrician, psychologist, educational psychologist, developmental assessment centre. A general paediatrician probably is not the right person, more likely a psychologist although the psychologist who saw her is no expert if she thinks making eye contact means cannot be autistic! How old is your daughter?