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How to encourage independence in ASD children?

(13 Posts)
leiela Fri 13-May-11 14:09:05

Im at my witt’s end, my son go’s to senior school next year (which we are not sure yet that is a whole other fight) but im utterly exasperated.

For the 3rd time this week he came home last night without his lunch box and I feel as though normal every day tasks don’t register as being important… I know kids are forgetful but he’s costing me a fortune, 3 forgotten lunchbox’s and the 2 spare’s I gave him are now ‘lost’ this week alone.

He’s 11 and I’ve been told that he’s on the asperger’s end of the scale but im really struggling to instill any sort of independence. I don’t know it just seemed easier when he was younger you “expect” young kids to need a lot of help but now he’s getting old im expecting him to need less and less help from his mum and it just doesn’t seem to happen.

Every day I have virtually instruct him task by task. Get dressed, brush teeth , have breakfast otherwise he doesn’t move “ARGH!” We have a real problem with his teeth at the moment every morning and every night I have to TELL him to go and clean them, then when he’s done I go and check and 99% of the time I have to tell him to do them again because I sware he didn’t even make it to the bathroom. Im not sure whats happening he sware’s blind he clean’s them but when I check I can literally see the plaque on them. The only way they get clean is if I actually stand over him while he does it.

The light bulb moment was a few week’s ago he ran upto me with chocolate on his hands asking me what to do… I know it’s silly but I just felt so low.. if an 11 year old boy can’t work out one his own what to do with mucky hands how on earth is he suppose to navigate senior school??

This morning I literally broke down, I took him on a bus to school to get him used to it. Seeing as in September he’s going to have to start doing it for himself.

I gave him the money and a piece of paper with the stop written on it so he could ask the driver himself. We walked down the road and by the time we’d arrived at the bus stop he’d lost both. I gave him more money told him where he was getting off just as the bus arrived on we hopped.

He spent the whole journey looking terrified and overwhelmed (we haven’t done bus’s since he was little because he used to scream and cry every time I took him on one) literally in tears the whole way, I just can’t bare it. if a bus journey with his mum is that traumatic how the hell am I supposed to expect him to manage it on his own in 4 months??! Especially if he ends up at his “allocated school” which will involve 2 bus journeys and a change in between.

I feel so selfish…. I just feel like im failing him at every turn. I cant get him into a good school, I didn’t get him extra support he clearly needs.

I guess it’s just hit me in the past couple of week’s that a lot of the things I do for him aren’t really normal for an 11 year old. Things I never even considered mentioning to the doctor’s when they saw him… I guess I just didn’t realise that helping an 11 year old to clean his teeth WASN’T normal. I just took it for granted because I’d always done it. Honestly im at the point now where i don't know what is normal for an 11 year old anyone i always felt he wasn't "that" bad but now im having doubts.

EllenJaneisnotmyname Fri 13-May-11 14:25:06

Hi leiela. I'm with you on this one. My DS is 11 with ASD and going to secondary school in Sept. I'm lucky that his brother goes to the same school so will go with him on the bus. Does he have any 'friends' or other children going to the same school that he can travel with? Even someone like an older child who could keep an eye on him for the journey?

My DS does have a Statement so I think a lot of the transition stuff gets done quite well. In my area they have volunteers who accompany children on the bus for the first few weeks. It would be worth talking to the SENCo at his new school to see if they have any ideas.

I assume from your post that he doesn't have a Statement. I know it's too late for Sept but it would still be worth starting the process of getting one off now. Leaving it until Sept would delay getting help. Would his primary support you? He'll be leaving them in July but they could help you get the ball rolling. Even if they are not supportive, you can request Statutory Assessment yourself, there are standard letters on the ipsea website.

It does sound like he's going to need some extra help, at least with the transition. The SENCo at the new school is the first person to talk to. Either through his primary school or directly, yourself, if they aren't helpful. Make an appointment to discuss your DS and his needs, explain to them just as you have to us.

My DS is having some extra transition visits of about an hour at a time where he can see his new school during a school day, meet some of the staff, go through what will happen on the first day in September, take some photos of his form room, dining hall etc. They have been very nice. HTH

zzzzz Fri 13-May-11 14:43:39

What a lovely Mum you sound. I can see why you are worried, but it doesn't mean you can't help and succeed in getting him ready for school. So far in his life you have been his main helper, his crutch if you like, to help him through the day and the tasks he needs to do. When he was smaller this was entirely appropriate but now he is older it seems less so.

What you need to do is find ways of replacing yourself. [ok that sounds a bit extreme but you get my drift?] It is likely that you are going to have to help him find 'Mum' replacing strategies for the moment but he may well learn to find his own workarounds in time.

Lets think about the teeth cleaning. What about those disclosing tablets that you chew to show the plaque. If he used one each evening and brushed till it was gone you have a way both of checking he has done it [get a calender and stick one to each day] and making sure he actually brushes. If he will use one an electric toothbrush will help the whole process and there are even ones with a timer to help keep you brushing for the correct amount of time.

I personally think the bus sounds like a HUGE step, but if you can break it down into little skills, and practice each tiny step till he is confident then you will both feel less stressed about it. What would he do if the bus was canceled or late? If he is going to have to carry money for the bus then he will need a wallet/money belt and if he can't remember where he is going then he will need it either written on his bag or water bottle or pencil case or something.

On the lunch box side of things what about a brown paper bag that he can just bin at the end of lunch then you don't have to worry about him losing it and you can also write stuff on the side like 'Dad's picking you up' or 'swimming after school' etc to keep it fresh in his mind.

He obviously needs more help than the average child but that doesn't have to mean you and he can't win in the end. The more support you can provide the safer he will feel, but the aim of all that support should be that he does it unaided eventually.

leiela Fri 13-May-11 16:49:56

I've spoken to CAHMS today and they've said there is no longer any support available for ASD children since the goverment cut's.. unless he becomes a mental health issue??? quite what that means im not sure i got the impression see ment unless he started having behavioural issues or got depressed!?!

Honestly i feel like we've been chugging along "coping" the best way we can with his issues without really facing them. I certainly haven't been giving it my all in regards to teaching him how to deal with the rest of the world mostly because i didn't realise i needed to do things differently with him ... he needs helping clean his teeth so mummy helps him...it keeps life simple but I can't go like this till he's 50 for goodness sake...

My son needs help, teaching the things normal kids pick up naturally and I have no idea how to help him. Honestly i didn't even realise he hadn't picked up these things till i started reading this site i relate to so much to what the other parents have written it's quite shocking when the lightbulb comes on and you actually sit down and realise all the things to take for granted ARNT normal.

He's a practically a teenager but in all honestly realise now he's less indepentant and capable in many ways as the average 4 year old.

I feel very lost and overwhelmed.

How is it that there is NO support?! How is this right or fair?!

sazale Fri 12-Aug-11 09:13:20

I've just joined mumsnet after doing a search and finding this thread. leiela, I can totally relate to what you are saying. My daughter is coming up 13 and about to start year 8 in mainstream. We are going the diagnosis process and she's been on school action plus since March. She is like a toddler in a teens body apart from her academic ability. CAMHS suspect Aspergers/SPD/Dyspraxia/Semantic Pramatic Disorder and she's just got an appointment with pead to rule out prader willi!! I used to say what ever she had was mild but now I think it's not. Its not that she's got worse, she's just not changed from being toddler which at nearly 13 is more noticeable. School have put some provisions in place but they are all to enable her to progress academically which I no longer feel is important. What is the point in her attaining academically if she's not going to use it because she can't even wipe her own backside properly!! Have you had any support since you posted? Sending you hugs x

dolfrog Fri 12-Aug-11 14:20:14

leiela

I have Auditory Processing Disorder (APD), which is a life long disability, no cure and need a carer, so obviously my first carers were my parents, and now my DW is now my carer. My care needs are not going to go away, I have good and bad days. On a good day i can cope with life quite well, on really bad days it can be very traumatic. So you need may be to find your DS preferred method of communication, as processing speech could be a problem, it is for me and our three DS. We have had to learn to adapt to each others needs and explain to others what each of our communication and other support needs are. It is life long and we will always need for others to understand our differences.

sazale some issues which some view as quite easy may require full time life long support, but we all need to find areas where we can achieve, and if we can achieve in academic areas this will be an area of positive progress. For some there will always be a support need, and in early life this is provided by our parents, who will have explain our issues to our future partners in adulthood, alternative support providers.

I have to live with my disability 24/7 and i will always need others to understand my needs to help me cope, i can develop various coping strategies but stress can prevent me being able to access my coping strategies when i need them so the carers very important role is to reduce or eliminate potential causes of stress, when means understanding the causes of my disability and the problems it can pose.

StarlightMcKenzie Fri 12-Aug-11 15:14:12

He needs a statement and almost certainly visual prompts/supports which hopefully over time can be faded.

Could you give him ONE task that he has to do independently with huge motivation built in. Velcro a small picture of a tooth brush on the wall by the sink and when he has brushed his teeth he can take it off the wall and bring it to you for exchange for his very favourite thing ATM.

You will have to go with him and show him what to do limiting the words and gesturing. Withdraw your support gradually so that eventually you just have to say 'brush your teeth' or show him a matching picture and he'll know that in a minute he'll get to do his favourite thing.

When he manages this 3 times independently, you can add something to the wall I.e wash your face, and add it to the strip of pictures you show him. When he has filled his strip in order he gets his prize.

Vinniesbisqwits Fri 12-Aug-11 15:21:36

its support you need so i think you need a moderator to help you with possible staementing issues and a dx to see if its not sa but ASD and if there are any further issues as dolfrog says APD or anything else.
. look for a support group in your area as they will know whats available to you and PP will also know and this will go a long way to help you de-stress knowing theres others who have been where you are now.

some dcs as dolfrog says will need help and support all their lives in certain areas but this does not mean they cant/wont live full lives with partners dcs of their own and hobbies and jobs but they may need assistance to do so

my dc is nearly 12 and woouldnt atm be able to catch a bus alone, is it possible he could go by taxi you can tell them hes SN and they will send a regular he will recognise and if you apply for DLA you may be able to then afford that or their may be a local council or SS bus that could take him if they understood the extent of his SN

in the meantime take everything as the others say in small steps try going to the bus stop everyday for a time then getting on few days later doing that gettin off at the right place speaking to the driver ect,

you may also find its best to do the same with most things do it in steps not just expect him to do it straight off
then praise each step.
its quite common the hygene esp teeth dcs as /asd and probable some of the others just dont really worry/care if they smell or teeth look yellow my dc wouldnt get dressed at all if i didnt warn him someone might be comming to visit in a min (he hurry's then) but the teeth he really has a sensory issue with, he even says it actually hurts and he hates the noise in his head when brushing bless

sazale Fri 12-Aug-11 16:52:47

Thanks for your reply. I've just re-read my post and it didn't come accross too well! I didn't mean that academic wasn't important but that I felt life skills would be better concentrated on at the moment. It's amazing that she's acheived so well and that's down to her developing amazing coping strategies! The sensory OT we've just had initial chat with believes she has auditory issues and would probably benefit from a smaller school. I'm so glad to hear positives as at times it can seem so dark. Thankyou x

Ineedalife Fri 12-Aug-11 17:14:14

For getting ready for school I would recommend a visual time table, we use one for Dd3, each step eg, get dressed, go to the toilet, have breakfast, is written on a strip of lanminated card and velcroed on to a felt board. As she does the step she takes it off the board and puts it in an envelope.

She was 8 when we introduced it and is academically very able, I thought she would refuse to use it but she loves it and is now able to get ready for school independently.

When Dd1 started secondary we colour coded her books a different colour for each day, it helped her to get the right books to school on the right day.

I know how worrying it is when they start getting the bus to school, if there is really no alternative you need to do lots more practices.
Dd1 did get the wrong bus once, but the driver realised she had a different uniform to all the other kids and asked her if she was on the right bus[great driver]. She got off at the next stop and rang me at work and I had to guide her through what to do. She did get to school, quite frazzled but she did get there.

fingers crossed for you and your Dssmile.

Marne Sat 13-Aug-11 18:57:37

Someone just showed me this and thought maybe the school (and you at home) could use something similar so your ds has a check list of what he needs to remember??

I have many ASD traits (no dx) and my memory is auful, my dh often has to write me lists so i remember what i have to do throughout the day and i often use sticky noted to remind myself to do things.

coff33pot Sat 13-Aug-11 22:11:49

I have made them myself and laminated them. Its cheap to do.

Made one as a "jobs" list for DS listing his maths, literacy, reading etc with tick boxes. Also a Fun Time check list with playtime, dinner, carpet time, PE etc. Then a BONUS check list for the TA...........with things like "I was polite", "I said sorry", "I didnt run away today" "I was nice to a friend". The TA would tick and praise. At the end of the day DS can add up how many ticks he got. It was reviewed before dinner and a sticker was awarded, if he hadnt done so well then it was pointed out that he still had the afternoon to try and earn another sticker (he had two chances) 6 stickers and he gets a dip into a "good behaviour lucky dip" (bought a load of bits and wrapped them up for the school.

At the moment it is working smile

coff33pot Sat 13-Aug-11 22:12:48

Was going to put that we do similar at home for "jobs" ie getting dressed........

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