Aspergers/ASD support thread

cazscoob

thank you so much for being honest softwaremad i know this is going to be a difficult journey and i had a few tears last night. im glad your telling me both of the positives and negatives im going to face as we need to know this!

i will be looking into the vitamins etc but right now we are going to take it day by day. the nursery will be in touch in the next week so this is our first big step. i will keep you all up to date as no doubt ill need more help and advise. the big one is in october when we have the main appointment!

carerof3

Mandles wrote: »

Hello everyone.Hope you are all doing well.
Holidays nearly over..hurrah!

I wanted to ask a question. Its about family credit as my child tax payment has just rocketed. I get carers allowance about £212 monthly and disablility allowance £281( i get high rate care ).
My child tax credit is now a whopping £758 a month. Is this right? I have rung them and they said yes it is right but i know other people that have queried stuff before and they say yes it is right and then later realise that it was wrong and want the money back.I'd rather know now before i spend it.

I know that it could be posted on another board but i thought others on here may know better as some may also get family credit and give a better answer.

I'm sorry I haven't read all the thread to know how many children you have. But as an example, I have one autistic son with high care DLA and one with DLA not high rate care, and when they were both eligible for Child Tax Credit, I got £212 a week. This was the highest CTC as I don't have a job. One has now become an adult and the other will next year, so the CTC is stopping. I now get £100 a week for one.

Hope this helps.

JBD

Hi Caz, it's good to know that your son's difficulties have been picked up on as early intervention can have very good effects. My daughter was officially diagnosed at two and a half although we were pretty sure already that she was autistic. She was a very withdrawn baby with severe developmental delay. Part of the process was being assessed by speech therapist , hearing tests, she also had a blood test to exclude fragile x syndrome. She was referred to an inter departmental !!! essment at the local hospital. Once we received her diagnosis we were assigned a social worker also dd had a keyworker who did home visits and basically used to help DD to play with toys. I also attended 'Good beginnings' which is designed to help you communicate more effectively with your child.

My daughter also was given a place at the child development group [Jigsaws] which is a very small specialised nursery. She now attends a special school. All in all we have been given so much help. It is so sad to hear of other families who are not given this level of care.

Strapped

blue_monkey wrote: »

Yes of course, here is the link: http://www.equazen.co.uk/default.aspx?pid=46&prodgrp=28 When they start on them you have to take 3 x the daily dose to get it into the system, this is why it costs a lot intially. I am going to try it for at least 6 months though.

My DS has been on these for several months now. I think they do make a difference. He also will only eat the strawberry chew ones, not take the oil. Quite expensive but I stock up when they are on 3 for 2 at Tesco or Boots. TG for DLA. (I did also ask the Drs whether they would prescribe them, but that was a no-go apparently, due to them being a food supplement not a medication...although there is some discretion so I may ask again - interested to know whether anyone else has succeeded in getting them on prescription?)

mandy.h_2

Js_Other_Half wrote: »

Fish oils:

I think I've mentioned this before, but Zipvit do fish oils that are cheaper (and same or better quality than EyeQ).

OJ Orange juice £5.99 for 360ml = 8p daily for 900mg EPA + 600 DHA=1500mg omega 3 (1 dose of 5ml)

Equazen £9.99 for 200ml: The intake of Eye Q Liquid is based on Eye Q's 500-mg capsules. One 5-ml teaspoon will give you the same amount of active elements as in two 500-mg capsules of Eye Q. The initial intake of eye q liquid equates to 3 teaspoons for the first 12 weeks, afterwhich a maintenance dose of 1 teaspoon per day is recommended

hi
do they do these in tablet form we currently use eye q tabs

blue_monkey_2

Strapped wrote: »

My DS has been on these for several months now. I think they do make a difference. He also will only eat the strawberry chew ones, not take the oil. Quite expensive but I stock up when they are on 3 for 2 at Tesco or Boots. TG for DLA. (I did also ask the Drs whether they would prescribe them, but that was a no-go apparently, due to them being a food supplement not a medication...although there is some discretion so I may ask again - interested to know whether anyone else has succeeded in getting them on prescription?)

Ooh, I did that too, LOL, got to try. They told me they are not on the recognised list for the NHS medications for them to be prescribed but I find it bizarre they can prescibe a drug that stunts their growth, stops them eating etc.. but not one that may help their concentration!! But yes, I'll try.

blue_monkey_2

Strapped wrote: »

My DS has been on these for several months now. I think they do make a difference. He also will only eat the strawberry chew ones, not take the oil. Quite expensive but I stock up when they are on 3 for 2 at Tesco or Boots. TG for DLA. (I did also ask the Drs whether they would prescribe them, but that was a no-go apparently, due to them being a food supplement not a medication...although there is some discretion so I may ask again - interested to know whether anyone else has succeeded in getting them on prescription?)

I've thought and thought but cannot for the life of me work out what the bold bit means.... anyone?? LOL.

Gers

Haven't trawled through the whole thread <sorry> but I had a brother whom we now recognise as having been high end/achieving Asbergers. Think that my parents had the worst of it (he was born in the 50s and died 2 years ago) and, with hindsight, we all suffered from lack of diagnosis and ignorance. My brother was very sociable witty and engaging - but insufferable, frustrating and a rotten father until his many children were adult enough to not need parenting.

On reflection and with the benefit of 2 years absence I can don my rose tinted glasses and say that I utterly miss him, his foibles and his intellect; I don't miss his annoyances, his idiosyncracies and his total lack of engagement/empathy and connection.

With my experience - take what's on offer, don't expect anything and you won't be disappointed. I wish we had the information and knowlegde available today, if we (as a family) would have had it we'd have 'enjoyed' his presence more whilst it lasted and not felt the frustrations and lack of understanding we felt for many years.

Need to correct 'we' to reflect that I mean our parents. I know that they were extremely hurt and totally baffled by his behaviour as he was their first born. My brother was a very contented child and adult residing in his own place in the world, my parents were a lot less so.

softwaremad

blue_monkey wrote: »

I've thought and thought but cannot for the life of me work out what the bold bit means.... anyone?? LOL.

too good for DLA ???

Strapped

blue_monkey wrote: »

I've thought and thought but cannot for the life of me work out what the bold bit means.... anyone?? LOL.

Thank God for Disibility Living Allowance. Sorry, I thought TG was a standard abbreviation. Teach me to use txt speak.