Forums Forums General Forums A - Z Lifestyle Anyone on here with autistic children

You should join Steves mailing list, hes the one that keeps me up to date with anything thats happening for our kiddies (clubs, respites, etc). Give me a shout if you want his email addie and don't have it already.

I know exactly what you mean misty, my little boy is now 5 and he is obsessed with Little Big Planet and Sackboy's his best friend we use it as a reward with him for achievements. If he eats all of his dinner, he has 30mins and so on. Its worked well for us so far.

My 17yr old used to have the most horrendous meltdowns..he used to have about 7-10 a day.
We could never stop them and everyone else in the house would get injured. In the end, we made his bedroom into a huge soft area, full of beanbags, cushions, low lighting lamps, loads of fiddle toys, etc. Its helped loads...as soon as he gets home from college (did this when he was at school as well), he'll just go and chill in his soft corner for a couple of hours and reflects (process's) on the day and then hes fine.
Do you think a soft corner could be something that might work with her? the goal is thats its just somewhere where she could have her meltdown and you would know she can't hurt herself there.
My little boy has a safespace, which is an absolute godsend...

am surprised GP/pead gave you phenergan for her...have a look at melatonin, its meant to be alot more effective for our kiddies.

try sure start childrens centres as well they run a drop in centre on fridays in brassey gardens birkenhead on a friday afternoons for help and information .try your local centre they might be able to help .

I don't think the dr will give the melatonin for her until she has a full diagnosis as she is still going through it! Might ask the pead when she is there in Oct! I dont think it works as she is very restless through the night when she takes it i makes her sleep but her being restless i dont think its right! She has slept through 5 times in 3 years and two of those times was phenergan!

hi mistybluered your daughter sounds like mine used to be she took ages getting out of nappies we knew she could do it she was just being stubborn. she has hypersensitivity hates her head & ears being touched, ive been bitten & kicked trying to brush her hair & she'll only hug on her terms. She's not on medication she sleeps at night once we get her to bed its difficult getting her up in the mornings on schooldays but she's up early weekends & holidays. After our meeting with Steve he said we were doing most stuff right we have easy days then we have hard days but we get through,the next big step weve got is secondry school Im worried about how she'll cope but her brothers will be there & hopefully some of her friends will be in her class.

hi there i have a 4 year old daughter who is in process of being dignosed with asd and adhd now also, she has been on melotonin now for about 5 months and it is a godsend as she just didnt want to sleep attal, it has been up to the 2 tabs now one of which is the slow release as she has started to wake up at 3am refreshed, i am not members of any groups yet as she is not fully diagnosed so dont get much in teh way of support, i have met steve and am on his mailing list and find some of his emails very useful, i am stuck in limbo at the mo as she not dianosed so dont any thing in the way of help as am jsut being told no one can help till she is dianosed so me and her dad are coping alone, it can be hard at times eapacilly when she has blow outs as she is getting more and more violent now but we dealing with it well just about lol, trying to brush her hair is murder, but reading above it is a sensory thing which no one told us about either, she absolute loves being in water in pools and swimming when we were on holiday, she is still in main stream school and am hoping she will get to stay there as they deal with special needs in the school in other diff forms aswell as autism.

hi mamabear we were in the same situation my daughter only just got diagnosed in april,after having 5 other kids Iknew she was different not at first though, although she was late walking talking potty training she used to have long hair but as she's got older she got worse with the hairbrushing so she has it short.my daughter also loves swimming & being in water, she loves going to haven for holidays although her brothers aren't as keen anymore. The school she goes to have been great they are very supportive.were on Steves mailing list but my daughter just goes to the computer club which she loves going to it is tough at times but im glad someone started this topic because it does help to talk to other people in the same situation.

Think i will get on to the pead this morning to see about the other form of medicine instead of phenegan as her doctor doesn't really want to give it her for some reason and i don't like this phenegan as she is restless all night! i find her meltdown are getting worse as she gets older and stronger! She also loves swimming but it takes two people to get her in the bath and washing her hair is a nightmare! she ends up with rats tails in her hair as it is a fight to brush and as for getting it cut short she wont go the hairdresses and she won't let me do it either!

I know the hair is a nightmare I put the shampoo on & let her wash it she's started brushing it herself but she does'nt do that good a job so its still a battle trying to finish it off. She's not to bad at the hairdressers although you can see she's not keen.I never realised how hard it was till I had to fill in a D L A form that makes you realise how difficult it can be & filling it in you have to base it on the worse day you can have. I was mentally tired after doing mine & it took about 2 hours.

Ask for a referral to Occupatonal therapy so they can do a sensory profile test. It would help alot in terms of getting a diagnosis plus what is effective in being desensitized.
My youngest was so hypersensitive to textures/clothes mainly, it was horrendous getting him changed. We now only use the same textures ie cotton and its helped loads. We also use a therapy peanut ball (its like a big gym ball but peanut shaped) that has knobly bits on it and that has helped so much in making his legs alot less sensitive to textures (we tried to get t-shirt material pants but they're so thin, not ideal during winter!) and he can now wear tracksuit bottoms without being highly distressed and uncomfortable.
Using similar tactics can also help with a sensitive scalp (hairbrushing).
I'm in the middle of a Sensory Intergration course so I can pass on alot of addies on how to learn more about it all.

SPD - Sensory processing difficulties is still relatively new in this country, as an effective therapy. The sad thing, is once they are diagnosed with SPD, the NHS don't offer any therapies to help our kiddies manage with day to day difficulties. That was why i started on a course. But if you can get a SPD diagnoses, theres so much schools can do to ensure our kiddies are in a great environment that can adapt and accommodate our kiddies needs to ensure they do stay in m/s education.

with the hairbrushing I saw an ad last year for the tangle teaser hairbrush it has helped a bit also using a hair conditioning spray,I also found wilkinsons own shampoo is really good,it doesn't stop the struggle of the hair but it helps.

Just thought I'd mention that we had a bad experience with anti-tangle shampoos, it caused a lot of hairloss in our daughter, not obvious dropping out but it went a lot thinner with regular use and came back when we stopped using it. Apparently it doesn't happen to everybody but worth keeping an eye out for.

I only use it once a week & my daughter has got thick hair but will keep a check on it thanks DD

Resently bought the tangle teaser brush your talking about and she wont let me use it on her as its a change of brushes i use it on my other daughter instead! I find the tangle spray makes the hair greasy so try not to touch it!

My 3 year old son has been diagnosed with autism and we had to battle and battle to get a diagnosis. We still have nightmares about those dla forms but our portage worker helped us fill those in. The melt-downs are hard to deal with, the worst thing being in public when you get the disapproving "control your brat" look off people! He is in Ellary park now and in the short time he has been there he has come on a great deal.

Yeah, i totally know what you mean as I'm sure the other parents do too.
strangers are always quick to judge and cast out their dissaproving looks, what they don't realise is that our kiddies are very hypersensitive to the world around them, people around them and they are fully aware that people are staring at them, which makes them even more anxious, panicky, stressed, hysterical...its a no win situation, heartbreakingly so for us.

I went and viewed Ellery Park when i was looking at schools for my little one, its an amazing school Sir . I hope your little boy continues to flourish under their guidance