A thread for those with dc with severe/ very low fuctioning ASD?

[TheHouseMistress]

Would anyone be interested?
I know Autism/ Aspergers posts are in the majority on this board but I genuinely find it very difficult to 'fit' in anywhere.
Such a massive spectrum.. Ds is a joy, has developed well over the last couple of years but remains severely autistic, he has the associated sld still on p scales at 10 has huge behavioural problems but we would'nt be without him :)
Fancy sharing ideas and a bit of support????

Well that phone call to the doctors was pretty useless, receptionist has put a request into the doctor but she said it's unlikely as he hasn't been seen for a while. Not much chance of getting him in there either

DS1 has got a lot better at taking medications in the last 6 months. We used to have to do things like syringe and squirt whilst trying to hold his mouth shut iyswim, or try and mix it in yoghurt (never really worked). Or if a capsule I would open, mix with juice and then try and use a straw to get as much of it as possible

How idiotic not to prescribe suppositories if it worked before. I'd write a letter of complaint to the practice manager maryellen copied to GP and PCT (are they still in charge???). After 10 years in the autism game (ds1 12 now) I have found that rather than arguing a quick emailed or written complaint to the correct person has more effect.

Thats true housemistress. Mary you could contact PALS

To those of you whose GP surgeries are refusing repeats of suppositories...a visit to A&E ususally gets a repeat done pretty damn quick! Failing that a call to the OOH GP service - they will ususally do a script to pick up if you expain

HTH

Oh, and def complain to PALs and the PCT about this...its dreadful

saintly am I picking up some irony here?

Thanks so much for the advice saintly and becaroo. Tbh I have been living in fear of ds getting a high temp for quite a while now and it's great to think that there might be other ways to go about securing some suppositories. I argued that there must be some provision for those who can't take the medicine by mouth but the GP kept trotting out the advice you would give for an nt child (distract him, mix it in with juice/ yoghurt etc) things that have no hope of working with my asd ds. God, he is so rigid about food he would detect any tampering from 50metres away!

I slunk out of the surgery in the end as I felt ashamed that we couldn't get essential medicine into a 4 year old boy, especially as the GP just wasn't buying the fact that it was utterly impossible. I suppose it must be hard to imagine if you haven't been there. We have an nt 2 yr old who hates taking medicine but through negotiation/ bribery it doesn't take long for him to capitulate. Completely different kettle of fish!!

Will send that email.

bakelite, i find i often use services etc designed for those with LD rather than autsim specific, most of our ASD clubs & services are suited more to those with HFA.
So of course you fit in here. :)

maryellen your GP sounds crap. I used to try injecting medicines into the middle of cakes, ds1 would sniff and nibble until he presented me with the medicine soaked middle and skipped off with a tummy full on medicine free cake . I really would complain.

Baketlite - agree with dontremember - I check whether something is set up for SLD's - if it is we'll give it a go. If it's for 'autism' then I don't usually bother as I assume it will be inaccessible for ds1.

Oh and maryellen - when I asked for help with food rigidity (ds1 was eating no meat, fish, fruit or veg) I was told to use a star chart and stickers. FFS. It was early days and I didn't complain (I would now). I did tell the person dishing out the advice (and NHS dietician) that a) he hated stckers on his clothes and b) he had no understanding of a star chart but she ignored me.

School eventually sorted eating out.

maryellen Well, another thing I would do would be next time your son has a high temp get the GP out on a home visit and get him to administer the meds.

That should get you a suppository script fairly quickly and should stop him denying access to them in future.

Hi, I am friends with saintlyjimjams and our two are similar in lots of ways so i will join as well :o I have a dd, 12, who has SLD, autism, physical issues (scoliosis, increased/decreased tone, incontinence etc) and epilepsy

she is off ill atm and I am climbing the walls. She had a bbrief perios of being well this afternoon and wrecked the house

bakelitebelle, I have just read your post.. maybe we could have our own quiche

next time your son has a high temp get the GP out on a home visit and get him to administer the meds

Now that is a great idea. In fact that's exactly what I'm going to do. It's just so insulting to stand there being lectured re the financial pressures on the nhs and how they can't afford to cater for mothers who can't manage to get something as simple as calpol into a small child. By someone who hasn't got a fucking clue. Like I just can't be arsed to really try.

Without seeing it for themselves they'll never get that we're not talking about a child who protests. We're talking about a significantly disabled child who is angry and terrified beyond description and will fight with every fibre and sinew of his being to keep his mouth closed, let alone swallow any of the liquid. And he'll keep it up for as long as it takes. Grrrr

And while I'm in angry mode...I really wouldn't like to be the next person who advises me to use a sticker chart

But as an aside it's fab to hear that school were able to help with your ds's eating issues, saintly. Gives me hope!

DS has autism and he is pretty severe.

A lot is his behaviour, he self harms and has a lovely bruise on his forehead from hitting a table at school. He hits others, broken eye socket, split lip and broken nose, knocked out and black eyes. i'm not sure if I should be thankful that they were seperate incidents or not.
Still in nappies at almost 13
Non-verbal but does sign
Severly underweight but no-one is bothered as he eats like a horse

But he is lovely and we adore him. Yes he is hard work and our lives have changed immensely to cope with his autism.

School were brilliant. It took a year plus. Of tiny mouthfuls (they started with a quarter of a crisp dipped in baked bean sauce). Honestly ds1 eats anything now. We're still slightly mesmerised by it!

You do find as they grow they treat you less like idiots Mary Ellen. By the time ds1 was 8 and had 5 people holding him down in an attempt to x ray they'd stopped suggesting star charts

Debs - why is he underweight? Does he have gut problems?

Maryellen when ds broke his leg the nurse asked if he had calpol, which he hadn't but he was in pain so he needed something. Nurse told me if he's in pain he'll take it. NO he tried to walk away from the meds and got almost hysterical. In the end they squirted diazapan(sp) up his nose. he didn't like it but he soon calmed down.

We have loads of useless advice. He self harms...tell him not to do it. He has smashed another door down...tell him not to do it. He has smashed a radiator off the wall...tell him not to do it.
I can't 'tell' ds anything he just doesn't get it

Saintly probably but no-one seems bothered. He does poo on an average of 4 times a day. we are slowly working out the GAPS diet so hope that may help

GAPS sounds a good idea. Are you eating lots of beetroot?

what is a gaps diet?

don't worry debs, ss want me to go ona parenting course 9even though my children are 12, 10 and 4, disabled one 12) because I can't cope on my own in the holidays. Strangely though i need to go ona parenting course for people with NT children i think they understand less than i do

Was the book helpful debs ?? x

maryellen I hope you dont think I was being facetious? I really would do that next time, honestly.

I am afraid I developed zero tolerance for complete strangers -HCPs, teachers, SENcos etc - telling me what will or wont work for my dc.

We also have had loads of good advice off the proffesionals .We were given a new pead last month and when she read that DS only eats 3 different foods she said "have you offered him other things" and when i said he only sleeps 4 hours a night she said to tell him santa only comes to boys who sleep well [hmmm].Dont think we will be seeing this one again,shes as much use as a chocolate fireguard.

I do like the way jimjams hasn't acknowledged I am her friend :o