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Any advice from ASD/ADHD mums please

(35 Posts)
tiredmummyneedswineandsleep Thu 16-Sep-10 19:51:30

Hi I am mum to DS 3.1. Consultant thinks he is on the Autistic Spectrum and has ADHD- I agree but although he has written to pre-school to say he should be treated as if he has a diagnosis he hasn't officially been diagnosed.
I am a single mum and he doesn't see his dad any more who is a bully- police and solicitor etc were involved.
I am at my wits end with him. I adore him but I'm struggling to cope. He is literally on the go from minute he gets up to min he falls asleep. Right now he's kicking he bedroom walls. He constantly climbs, is violent to me- headbutts, kicks, hits, slaps and laughs as he does so. I try hard to take him to nice places but he seems to ruin it e.g running off, screaming. When I take him to soft play he just wants to take the ride on toys up into the soft play bit eg ball pits, up slides etc which obviously isnt allowed but I just cant get it into him not to. He runs all round place crashing into peeople etc..
I don't seem to get a minutes peace. By the time he is asleep i'm too knackered to do anything. There's no one to really have him if I want a break as my parents are quite elderly and not in good health. He is at nursery when I'm at work and they wanted 1:1 but there's no funding in LEA.
I am so low and tired that I often wish I could go to sleep and never wake up.
Consultant asked health visitor to refer me for Webster Stratton parenting course but there are none in area.
Does anyone have any day to day survival tips or advice please? I am at my wits end. I am sick of it all. Whenever we do go anywhere I feel stressed by him and am fed up of people having a go at me/him because of his behaviour. I do love DS to bits just don't like his behaviour at times but realise he can't really help it.

Lougle Thu 16-Sep-10 20:04:31

DD1 has a brain malformation, which gives her ADHD traits (and some ASD ones) but she has no official diagnosis of it.

Things that have helped us:

-Melatonin liquid for sleep - we know that no matter how hard she has been in the day, she WILL be asleep by 7pm, so we will have at least the evening with her asleep, and then the night seems easier.

-We have stair gates everywhere (kitchen, porch, top and bottom of stairs, her bedroom) so she can't get access to dangerous places easily.

-We have bolts on our bedroom door, her bedroom door and her younger sister's bedroom door, so that when the homestart lady comes, if she takes her to the bathroom DD1 can't escape into a bedroom and wreck it.

-We have an electromagnetic door lock on our internal front door so that she can't escape the house, because she can climb over the stair gate in the porch if she gets something to climb on, and we are near a main road.

-We have acrylic glass sheeting lining our bannisters so that she can't climb the bannisters (she has no sense of danger and ataxia, so loses balance easily), and a hardboard sheet lining the bottom stair gate on the stairs, so that she can't use it to 'vault' her leg over the bannister from there.

-We have no plants, ornaments, or any other trinkets at a low level.

-We mount shelving very high up on the wall, so that she can't reach anything (this isn't working so well since a growth spurt and realising she can climb on a chair onto a table.... you get the drift).

-We have to give her constant supervision and can't allow her to play in her bedroom because she is likely to injure herself sad sorry, that won't be what you want to hear.

-We adapt. For example, when we see the paed consultant, we walk into his office, and lock the door behind us grin.

Sympathies. It is such hard work. No matter how much you think you have it covered, they discover something new, reach a bit higher, it is simply exhausting.

RE. the 1:1, that is frankly rubbish - name your LEA and I will find you a document that proves it - almost every LEA will have some mechanism for releasing funding at Early Years Action Plus - you are being spun a yarn.

ouryve Thu 16-Sep-10 20:07:36

Wine and sleep work well, though the first one only in moderation for me!

Going out and about with DS1 at that age, I always used a harness with him because he was so unpredictable. We did keep our actual outings simple and have, over the years, trained him to cope well with certain places. Even now, at almost 7, we pay for it when we go anywhere new, even though he's verbal and can be primed.

Try to keep interactions with him at as low an arousal level as possible. That is easier said than done, but I find that days when I'm rattled just get worse and worse because we're firing off each other. Of course, along with the calm, you need to be consistent. Far more so than with a NT child.

As far as nursery is concerned, you need to apply for statutory assessment for a statement for him. Tough shit to the LEA if someone's claiming there's no funding. He has a right to an education and if his needs can't be met without 1:1 and other support, then they need to stump up for it. There's plenty of people here far more experienced than I am with stubborn LEAs who won't cough up. I'm sure they'll be here soon.

It's not usually the done thing on MN, but [hugs] anyhow. I'd also offer [chocolate] and [wine] but we're all out of that blush.

tiredmummyneedswineandsleep Thu 16-Sep-10 20:17:10

thanks so much its so good to talk to people who understand as feel so isolated in real life. LEA is Gloucestershire.

want2sleep Thu 16-Sep-10 20:17:41

this reminds me of ds before ABA, it calms ds (tires him basically) and one day I keep ds on go all day out burning off as much energy as possible. Needs watching 24/7 due to chokes on objects and fluids...drank bleach once
The ABA is a full time job even though I just run it now not a tutor(unless sickness etc).
I'm on my own and no support, dad did a runner from ds and it is tough....somedays as long as house is clean/dinner done I just veg on sofa...however worse for you as your ds has adhd also ds only has add.

Ds loves wii in the night....we do it together and can be fun and burn off energy.

But ABA was my life line to be honest to calm and help ds.

tiredmummyneedswineandsleep Thu 16-Sep-10 20:23:13

want2sleep what's aba please.

want2sleep Thu 16-Sep-10 20:29:24

oh sorry its applied behaviour anaylsis a method of teaching that breaks everything down so the child can learn a new skill....teaching ds to sit at a table and do a puzzle was the first thing ds learned and I was like WOW...ds was 2.10 then and used to run up and down all day, spinning and screaming (was non verbal) ABA is structured and gives child routine they often need. It is well I think it is best treatment for autism. Google it or type it in search here loads here

want2sleep Thu 16-Sep-10 20:33:58

there is ukyap consultants not far from you...they do LOVAAS 'strict' ABA. ds needed this though back then and it is those early years on LOVAAS ABA that helped. DS aba now more lose and as much community based as possible.

Diet helped too removing gluten and dairy, stims and poos got better.

c0rns1lk Thu 16-Sep-10 20:36:14

where did you get melatonin from Lougle?

tiredmummyneedswineandsleep Thu 16-Sep-10 20:37:58

thanks haven't heard of either will do some research. DS has very runny poos was your ds same until you removed gluten and dairy? how do you ensure he gets calcium?

jjones Thu 16-Sep-10 20:42:29

You could be talking about ds3 4.3, he has asd, ld and adhd. Sorry to say but webster stratten is no good for parents of children with additional need, it is a generic course. Is there any support groups or carers centre in your area they may be able to help with finding somewhere suitable to tax him, they could help you get some direct payments or respite. I have found my local support group a god send.
Regarding the nursery, contact parent partnership to see if they can help.
I know exactly how you feel, they are so full of energy it is crazy.

tiredmummyneedswineandsleep Thu 16-Sep-10 20:43:02

thanks lougle. have locks on kitchen and ds bedroom door. have a small tv/dvd combi screwed to wall as ds broke the last telly huge 90s style one he pushed it over!

jjones Thu 16-Sep-10 20:43:57

We got melatonin from the paed for ds3 as well which is a must.

tiredmummyneedswineandsleep Thu 16-Sep-10 20:46:37

hi how do I contact parent partnership? yes the amount of energy is crazy- wish i had some. did you get 1:1 for your ds?

tiredmummyneedswineandsleep Thu 16-Sep-10 20:49:01

how old do thy have to be for melatonin? how long does it make them sleep for? are there side effects?

want2sleep Thu 16-Sep-10 20:49:11

ds used to poo 25+ times a day. If I where you at this point contact Sunderland Centre they do urine test to see if your ds needs to be on gluten free diet...basically gluten turns to heroin in his brain type symptoms 'off head laughing red ears/cheeks then spaced out when comes down after laughing for 2-3 hours running round.

Its about £60 and done via post. Then casein can be stopped to see if it makes a difference (makes ds have absence type episodes of not responding and upset stomach)

tiredmummyneedswineandsleep Thu 16-Sep-10 20:54:09

that is ds to a tee. behaviourwise. more like 2-5 poos but always loose. thanks

Lougle Thu 16-Sep-10 20:56:41

Here is the guidance on Early Years SEN Funding in Gloucestershire.

They need to fill in a form, after identifying that his needs cannot be made from within the setting.

If he is in need of 1:1, that is what he needs. Full stop.

Melatonin usually gets prescribed by a Consultant Paediatrician. Some GPs will prescribe, but it is unlicensed so they very rarely will (or should).

c0rns1lk Thu 16-Sep-10 21:04:34

Will a psych do it?

jjones Thu 16-Sep-10 23:24:08

Parent partnership is [ here] and every LA has to have one. Yes ds had 1:1 at nursery. Speak to your sons paed about getting some melatonin as it will give you some peace at night at least. I found that ds was worse before it as I think most of the time he was over tired as well as everything else. Good luck.

jjones Thu 16-Sep-10 23:25:11

sorry here is the link for parent partnership.

HumaKhan Thu 18-Nov-10 14:14:04

Dear want2sleep, my son, who is 2 years 9 months is undergoing diagnosis for Autism . We're considering UK YAP, just wanted to ask how was/is your experience with them? Thank you.

zzzzz Thu 18-Nov-10 18:00:05

My son is 5, he is much more verbal now which helps. You sound so tired, and I know that feeling. The truth for us is that things are not so very different than with any other child [I have 4 others] just more extreme in every way, and the sleeplessness is gruelling. In my case things have improved massively year on year. I try to do what every other mother would do just in a much more prescriptive way. So what has helped
Sleep, assuming nothing is actually bothering your child in the night [ie it's warm dry and quiet], he needs to be physically tired and have eaten well to get a good nights sleep. Ignore everything else just focus on these 2 things. Getting tired [we got a trampoline which is a huge boon both for exercise and for calming, all that rythmic jumping helps and it also allows me to do washing etc], he can ride a bike now and will go on a slide happily for some time, swimming lessons have been a huge jump and the staff at our local swimming pool are fantastic and truly inclusive. When I said sone of the other mothers might be put out that he took more time, they said "Well there are always private lessons if they don't like it. These lessons are for all comers". I could have kissed them. You will be able to gauge how much exercise is is needed because it will suddenly start working! Though it was way more than I thought! Food can be more difficult if you have eating issues but start with what he likes and try to beef it up a bit [mine likes pasta, so I grind up the most ridiculous things to add to that] Anyway stuff him silly and then see if he sleeps. If you can win that one you are half way there. I should add that we have a bath before bedtime and a video [I know so trashy mother but what can I say it works and we are doing our best!]
As for the going out and melt downs it is hard and in some ways that gets more difficult because although mine is calmer I can't strap him in the pushchair any more. We go out a lot as otherwise he looses the knack, exercise helps with that too.
Read books it helps to see where youare heading. Do not despair, we all have our 4am horrors, but these children are different, not less, and also although development is out of step with age they DO develop. Keep a diary of where you are and look back every couple of months you will be amazed at the tiny steps forward. I think the hardest part is feeling so isolated. I found reading books by autistic authors very helpful and self help less so [Send in the idiot, Emergence] also listening to Temple Grandin on utube.

Triggles Thu 18-Nov-10 19:36:47

tiredmummy - we're in Gloucestershire, too. I've been advised to contact parent partnership as well recently regarding our 4yo DS2. Reading Lougle's post above about all the safety stuff they have, DH & I were nodding as we saw them - we have almost all the same! I'm planning on calling parent partnership tomorrow. There is an ASD support group (IIRC) that meets in Gloucester once a month - I'm looking at going next month. There's this: com_content&task=view&id=56&Itemid=68#Glos
and this:
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depending on where you are in Gloucestershire. Hope that helps.

Lougle - electromagnetic lock?? This sounds interesting - where did you get this?

tiredmummyneedswineandsleep Thu 18-Nov-10 19:52:29

ds started swimming lessons tonight, special needs ones with 2 older boys who i think may also be asd. it went well so far so am hoping it helps.
HumaKhan i haven't heard of uk yap. who are they? i hope you get all the right support at this time. what stage are you at with regards to appointments?

triggles, is that at the spring centre?i go there. i will be my 3rd meeting. the staff and facilities are fab. ds loves it, they look after him whilst the meets on. would be lovely to meet you!

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