Aspergers/ASD support thread

mspig

sound like good advice, my son also has a problem with baths sometimes its getting him in sometimes its getting him out, he is obsessed with cars and lines them up but with over 200 cars and every time we go out he has to have one.

His eating habits are dreadful though and hes so skinny, he will only have either porridge or wheatabix for breakfast, jam butties and raisens for dinner and 9 out of 10 times he will not eat any tea. he does have apples throughout the day as well but thats it no matter how hard i try to get him to eat.

Lifes difficult though as i also have a two year old who has a completely different disability and has to have infusions with blood plasma each week to keep him alive.

And i have an 11year old going to high school this year, so lifes hectic at the mo.

tilly's_mum

Hi Mspig

My daughter screamed a lot and had mega all day tantrums and the most blood curling scream and it turned out to be a reaction to dairy and gluten - she was getting bad headaches I think. You can have your son tested (a urine test) at the Autism Research Unit in Sunderland http://osiris.sunderland.ac.uk/autism - that is the best test as it is not a normal allergy so to speak but a reaction to the opiods in the food (like morphine). If he has other symptoms such as bowel problems, food craving and limitations (eating loads of toast or drinking pints of milk - my daughter did!) or skins conditions or waxy or red ears - its worth looking into the diet.

Once we got the diet right (you have to be strict and when you have a slip up you know about it for a few days!!) the above symptoms such as bowel problems cleared up and the tantrums eased - still get tantrums but usually can work out the reason why. Sometimes she has them in response to me using the phone or reading so I avoid doing those things around her - just not worth it!!

If you or anybody else reading this tries the diet - follow the advice on the Autism Research Unit website and also pick a time when you are not busy doing something else - the early side effects are quite bad as they are craving the dairy and gluten but its a really good sign its working and they don't last for that long - a few days then your child once feeling better should be calmer etc. My daughter didn't feel pain if she fell over but after coming off gluten she did and was much more with it!!

hooty2001uk

Hi all...
I am a Deputy Home Manager for a home for young adults (18-30) with learning difficulties and severe challenging behaviour majority of our young people we support have Autism or some kind of ADHD, most being non verbal, very non compliant. I dont see it as a job and really really enjoy it.. very rewarding. I am considering about going to uni in september to do a degree in social work... If I can be any assistance to anyone whether it is of advice or anything just ask!!

Andrew x

PasturesNew

Numbers are brilliant. I love numbers

I used to count everything when I was young. I still do in fact, but now I don't tell people about it.

When I was young, for example, I'd count all the roses in the wallpaper of a room if my parents took me anywhere, then as I was leaving the house I'd tell them how many there were. Now I count all sorts of things every day. I know I count bricks and roof tiles. I have an obsession with looking at the detail of houses. I count all trips/journies for mileage. I count all stairs.

I also spend a lot of time thinking mathetmatically about things. And mentally rearranging things for optimal use of space. Car parks with bays marked out, for example; I will count how many spaces there are then mentally run through the other possibilities to see if it could have been done better.

But overall, all numbers are great.
Counting is non-negotiable! In fact, counting = joy.

Savvy_Sue

I remember one of my brothers announcing at the end of a drive home that we'd passed X Christmas trees in people's windows ... and I think one time he told them there were X sheep in a field, which there were but until he told them no-one had bothered to count them, and I think they only did then because they didn't think he could count that high ...

sarah1975uk

Hi everyone i havent posted in a while, its been so manic and hectic here with DS and everything.

Things have gotten worse since my last post, School have tried everything to help DS and now mentioned to me on friday about potentially having to permenantly exclude him because last wednesday he had a major total meltdown episode, resulted in him being put into time out room for about 6 hours, we had to call the GP Social services and they wouldnt come out. he had peaked so much he tried to attack a teacher with a broken paint brush (shes now off sick with the trauma and stress of it all) and i was called into school DS didnt even know it was me and tried to stab me with shanks he had taken out of his shoes. Finally a CAMS Consultant cancelled her clinic and came out to the school and because of the safety of myself my other 2 kids and my DS he was admitted to hospital as a place of safety and respite for me. He was discharged on Friday and social services demanded i take him home said i would be arrested by the police if i didnt so under the agreement of them giving me support for me and DS gave me mobile number of social worker who was on call to come right out to my home should things escelate over the weekend where i couldnt manage it. That social worker came out on Saturday and saw totally what im facing with my DS and an emergancy meeting was called for this morning docs soccial workers school head etc all in attendence with me and its like flamin banging my head a meeting about a meeting no constructive efforts to give my son the help he desperately needs and support for me and the family too. Probelm is diagnosis is like getting blood out of a stone it winds me right up. Even though for years since he was 2 ive had this going on and he will be 10 this year. I stated my case in the lastest meeting today and basically ended up loosing the plot a bit and walked out, member of staff who attended too said i was ok and done really well.

DS school hours have now been cut again where as before this happeend last wednesday he was due to be starting back full time again this week, that has now been scrapped. Its like hes in school for the sake of being in school now not understanding or coping with mainstream life and statement will not be through until about april now so cant access special school until that happends. Really really peed off now and feel like im cracking up and a really crappy mum. All i want is what is best for DS and what he deserves is that too much to ask these text book so called professionals. Now have social services involved CAMS community pediatrician GP and all seem to be saying complex needs developmental delay not just the ASD spectrum/ Aspergers but developmental delay. Poor lamb has regressed even further now speach is babbling and random flapping arms and shuffling has completely knocked me for six its heartbreaking to see let alone cope with daily. Feeling very emotional and dont know what to do for the best.

Snaggles

Oh Sarah, what an awful time you are having. (((hugs)))

I don't really know what to suggest, but I just wanted to say I think you are coping really well. Just keep pestering everyone to get the diagnosis and the help you need. I'm absolutely disgusted that you were threatened with being arrested on top of everything else you are going through. I despair really.

shazrobo

big hugs sarah, i've been in almost the same situation with my sons, daniel was admitted to hospital for his own safety aged 9, both him and his twin were repeatedly excluded from school, daniel was permanently excluded and we had to find another junior school willing to accept a child as violent as him, he had knocked a teacher unconscious.
when it came to meetings about transfers to high schools, i begged for both sons to have places at a special school, was told no
daniel lasted in mainstream high school 3 days, joshua 4 days, they never went back full time they were on an hour a day timetable, and risked been at home permanently, eventually at a multi agency meeting it was finally decided they needed special schools, which they eventually got places. they are 12 now and in year 8, and they are so much more settled in school, at least. daniel got excluded for a couple days a week or so ago, but on the whole staff are better able to cope as they have had the trainin. eg, 3 staff restrained daniel last week, on the event that led to his exclusion.
hope you get something sorted soon, and feel free to pm me any time, i know what you are going through and it is so distressing.

bm, good luck with the housing

sarah1975uk

Snaggles wrote: »

Oh Sarah, what an awful time you are having. (((hugs)))

I don't really know what to suggest, but I just wanted to say I think you are coping really well. Just keep pestering everyone to get the diagnosis and the help you need. I'm absolutely disgusted that you were threatened with being arrested on top of everything else you are going through. I despair really.

Hi ya the point of me being threatened with being arrested. My point of saying i didnt feeel safe taking DS home from hospital as my son had reacted un predictably violent by almost stabbing me and the fact i have his twin sister and younger brother to consider in all of this too. Basically they said if i refused to take him home no matter what the cirucmstances im abandoining him. Flamin ech im putting my heart and sole into my DS in this whole sorry situation so am far from neglecting my son. They said if i didnt take him home they would call the police to bring him to my house and the police would arrest me for abandoning him and neglecting him. What a joke, makes me sick to my stomarch to think of it.

sarah1975uk

shazrobo wrote: »

big hugs sarah, i've been in almost the same situation with my sons, daniel was admitted to hospital for his own safety aged 9, both him and his twin were repeatedly excluded from school, daniel was permanently excluded and we had to find another junior school willing to accept a child as violent as him, he had knocked a teacher unconscious.
when it came to meetings about transfers to high schools, i begged for both sons to have places at a special school, was told no
daniel lasted in mainstream high school 3 days, joshua 4 days, they never went back full time they were on an hour a day timetable, and risked been at home permanently, eventually at a multi agency meeting it was finally decided they needed special schools, which they eventually got places. they are 12 now and in year 8, and they are so much more settled in school, at least. daniel got excluded for a couple days a week or so ago, but on the whole staff are better able to cope as they have had the trainin. eg, 3 staff restrained daniel last week, on the event that led to his exclusion.
hope you get something sorted soon, and feel free to pm me any time, i know what you are going through and it is so distressing.

bm, good luck with the housing

Hi ya so good to speak people who understand here, been feeling so alone and useless. My DS is now on daily review of being in school 845am to 12 Noon one to one support with teaching assistant and teacher in secluded room on his own no peer contact. Ive been forced to be off work now off sick, now not getting paid at all from work, and now because of the constant phone calls calling me to school to deal with my DS i dont even know if i can return to work at all at the moment even part time hours in a new job i have been offered. Still need to pay mortgage and pay bills and support my family and cant do it with all this going on. Im sure they dont even think of the nock on effect spiralling daily. Wonder within their perfect lives they ever consider the whole picture rather than what suits THEIR needs and not that of my family.