Aspergers/ASD support thread

Mandles

Caz,
Yes, agree. It is not your fault. I reckon a lot of it is in the genes. His cousin is autistic(on my husbands side). I have a bit of OCD and so do others in my family do(just found out that that is related but right at the bottom of the list!)

You usually don't have to look to far in your family to see others that may have a touch of the autistic traits. It is quite funny when i look through my family who i thought just had funny ways.I don't think my lad stood a chance!

It is totally just my opinion but that is what i think. So don't worry about it being your fault as it probably nothing to do with you or anything you did. My other kids where actually with me when i discovered the dead body of someone we all loved and were close to.It was really unexpected as it was not by natural causes. I went absoloutly nuts and they were screaming as they saw me hysterical . I also went nuts for a long time after and they were fine and very good children. Yet my other son was not born then and has never experienced anything awful and he is horrendous. So don't you dare blame yourself.
It sounds like there may be something beyond anything that you could have affected, especially if others are agreeing with you that have met him like your HV.

PasturesNew

I had to go to the Doctor's today. Horrible places... really bad for aspies. Luckily it was first appointment of the day so the waiting room was virtually empty and the telly was off (hurrah!, bl00dy tellies!!! grr).

Got sent straight round to the nurses room, but it was a nightmare there. They had speakers playing the radio and about 6 people sat in a narrow corridor - and 5 nurses walking back/forth sorting out their trollies for the day. I sat there with my fingers in my ears, but you feel such a lemon. At my age you know you look peculiar, like "the mad woman that's about to go loopy", but I had to cut out some of the noise. I had noise going on, unfamiliar environment, fear of the unknown/process I was there for, nurses back and forth, chatter, noise... nightmare. I virtually fell into the room when my name was called. Such a relief ... took my mind toally off the fear of the appointment though as I had bigger issues with the noise.

People moving, chatter, noise, tellies, kids playing, lights, radios on .... are all part of my trait issues. These are encountered in many places and you normals probably don't even notice them - you probably think what a lovely spot this is. Try to see these issues from an ASD perspective: if any of them are present, or more than one, it's going to be an issue. People moving, doors opening, phones ringing, the unexpected, music/noise, clatter, chatter.... quiet, still and dark = good.

cazscoob

the problems i had were between me and OH we had been through a rough time and i also had lost my baby nephew. this is why i think i got worried when i was asked these questions!
thanks savvy and your missed on the parents thread come back:D

We have a 6 month old baby and the HV seems to think that we need help asap as the baby will pick up on Charlies trates and copy him? this is one of the main reasons that they are getting him a nursery place. i really am over the moon at your response and advise thank you so much! x

Js_Other_Half

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

Savvy_Sue

cazscoob wrote: »

the problems i had were between me and OH we had been through a rough time and i also had lost my baby nephew. this is why i think i got worried when i was asked these questions!

So blame your DH, if you must blame someone! Although, to be fair, it's not his fault either, so he shouldn't be feeling guilty either.

cazscoob wrote: »

thanks savvy and your missed on the parents thread come back:D

I'm sorry, I daren't, I'm so busy at work, quite tired in the evenings, I just can't spare the time. But just remember, and you can tell them all too, say it loud, say it proud, "I AM DOING A GOOD JOB!"

cazscoob wrote: »

We have a 6 month old baby and the HV seems to think that we need help asap as the baby will pick up on Charlies trates and copy him? this is one of the main reasons that they are getting him a nursery place. i really am over the moon at your response and advise thank you so much! x

It is true that some children do pick up on and copy a sibling's behaviours, especially I guess when they're younger and so don't know and can't be told any better, IYSWIM, but it's not inevitable. So it's great you are getting a nursery place. I'm sure it's been suggested: have you looked into Home-start, and if there's a nearby college offering childcare they often want home placements with young babies / lots of children / children with difficulties / families needing support. See if your HV knows about anything like that.

blue_monkey_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

I have to admit I bought my last lot of EyeQ in eBay - someone has bought some for her child and had one opened and 2 unopened packs so I bought the 2. I got 360 capsules for £16 including the P&P which was a great price. The problem is getting him to take anything but, rather bizarrely, he will put the EyeQ in his mouth and swallow them down as they are quite soft we have the Strawberry Chews. He is on 6 (4200 mg I beleive) a day at the moment, once this 360 is finished he will be on 2 a day. They have to be flavoured chews else he will not take them - you know what I mean!!

cazscoob

i havent thought about home start TBH but i will look into it! at the moment i dont feel that im doing a good job:( but im trying to sort myself out and helping charlie will help me get back on track and manage to say they magic words!
well if you ever have time nip on to say hi! but looks like i may be on here a lot now!(if you will have me:))

the flavoured chews can i have more details please as he is only little and these might be better!

Savvy_Sue

cazscoob, YOU ARE DOING A GOOD JOB!

Say it to yourself, whether you think it's true or not. NO-ONE could love that little boy more than you (even on the days when you're exhausted and he's not particularly lovable). Mutter it under your breath, through your tears, and before you go to sleep.

And we're not picky over here.

blue_monkey_2

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.

softwaremad

We first had DLA when my dd was 3 years old - mobility at that time was issued minimum age of 5 - they dropped that to 3 on my dd 5th birthday (Sod's law or what!) - you will have to stress the 24/7 care in the dla application form - cross out their (How many times a day) bits and put 24/7 reiterate again and again (" almost as much as they do with their boring questions lol") how he has no sense of danger. so you need to one on one supervise him for safety.


its been 10 yrs now since our diagnosis - i had a crappy pregnancy in that my dd biological benefactor was beating the poo out of me and really messing with my mind using mind games and the like - i was a complete cabbage until at 5 mths pregnant i decided that my life wasnt right! i got rid then had to deal with 3 yrs stalking & break ins!

i got stronger and we went through hell me and my little one as at 18mths old hv decided to call in consultant as she wasnt walking. I just thought she was lazy and would in her own time!

Then the hitler consultant accused me of abusing & neglecting my dd. which then put more stress on me. my gut instinct was saying autism even though it meant nothing to me back then. Mrs Hitler said oh no don't be so silly you dont want that as a diagnosis as those children are mostly schizophrenia! she is now head of unit for autism (once again sod's law) hypocritical old moo hope she gets a patient parent who can give her a dose of her own medicine!

we moved health authorities and got a diagnosis straight away - and although it was a bit of a relief - its still a huge thing to grasp. i mean everyone has to take it day by day - dont look too far forward as it can not always be a pleasant picture. As parents of these angels that are really trapped because they are too clever for this world at the stage its at - we have to doggedly fight for everything - we get run down / bang our heads against brick walls repeatedly - after a brief break we come back and keep fighting these muppets with power who should really give us a break and let these children have the help & provision they need to make the most of this world not curtail to ridiculously small budgets.

IMO these people making decisions that will impact our children's and our lives forever need to walk in our shoes for a month before being allowed to take a position - as surely the government wants all people off disability and in work - well in order to work you need an education of some sort - and why is it autistic people are only taught gardening or litter picking - i mean if thats what they want then great - but there is a little something out there "Equal opportunities". They should remember that!

Diagnosis is the beginning of a long journey lol - just breathe deeply and stroll quietly through the minefields. Disability of whatever nature is ignored by those in the know! parents will rule for ever - especially if we stick together and pass on our knowledge.

My DD is hypo sensitive to noise (has a bell on every tooth) she was kicked to hell and back last term in school as they put her in a class with other autistic children unfortunately they are hyper sensitive. Not a good mix but you know LEA's will twist the rules to suit their budgets. They put her there saying it was adequate ("that is all they are having to provide by the way ADEQUATE education") well now the school wants her 1 to 1 - many reports we payed privately for say she doesnt need this high a level of care! but every other child in the class is 1 to 1 so in order to have my dd there she also has to be 1 to 1 - so is this really adequate as they are bending the rules to make a square fit into a circular hole!

God i get so frustrated with the whole thing. am going to write a letter to the incompetents at our lea telling them to stick by their guns - say no to statement changes as they will in essence be shooting themselves in the foot - the school will withdraw my dd's offer of placement and muppet central will have to find somewhere else adequate - as even though a parents input is requested they very rarely agree - its just a formality - i mean after all who knows a child best the parents who care for it 24/7 or the peeps with the unknown degree that have a post as special needs something or other?