Struggling with ASD son and desperate for words of advice

[KateWharf]

Hi, sorry for the long post, but I'm really struggling and am looking for any words of wisdom/advice from other parents with an ASD child.

I'm a single parent with a son who's 3. Lately I've been finding it harder and harder to look after him. I'm permanently exhausted, very stressed, and sometimes feel I can't cope.

I love my son to bits. He's verbal, bright and can be so lovely. But day to day things are so hard. He's often irritable and I feel like I'm treading on egg-shells, trying not to set him off - while at the same time not letting him get away with bad behaviour. He's very controlling, and I find this very hard. Perhaps the hardest thing is that he hardly ever plays by himself. He seems to need me to play with him all the time. I find this absolutely exhausting, to the point I'm barely able to cope. I spend loads of time with him, but occasionally I need to do other things - like make his tea, or put some washing out. When I'm doing anything like this, he'll usually just run around screeching or trying to get me to play games with him. He hates the television and won't watch any TV programmes or DVDs. So I can't even put him in front of the TV if I need a break. It feels relentless.

During term time he's at nursery for half the day, so it's just about manageable. But now the holidays are here - and, although I feel awful admitting this, I'm just dreading them. I have no idea what I'm going to do with him every day. He doesn't play with toys much, and when he plays with me quite often he either gets irritated or the game only lasts a very short time (eg we might go into the garden to throw balls, but after a minute he's bored with that - leaving me with another 12 hours of the day to fill!) I don't have any family who can support me, or look after my little boy for even a few hours.

Sometimes we go on playdates, but they don't work very well. My son doesn't play with other children at all, and will rarely play with toys, so he wants my attention, and I feel torn between talking to the friend we've gone round to see and playing with my son. It seems impossible to entertain him - for example, he's not particularly excited by playgrounds - I have to persuade him to do things, like suggest he goes on the slide! He doesn't enjoy going to the library.

I'm sorry for such a long message. I feel I'm always moaning, and hate myself for it. But I wondered if anyone else is in a similar position, and how you cope. Any advice or tips would be very welcome.

Thank you so much to anyone who can help.

Hi Kate :)

First thing I would do? dont be sorry for the long message and dont hate yourself. You have a busy child with a busy agenda (putting it mildly )

To make it easier on the meal cooking I would for the hols cook big and freeze easy ready meals. cottage pies, fish pies, stews etc. Then make lunches easy make up sandwiches for yourselfs before you go bed and refridgerate. If you do 2 lunch boxes you can make it a plan that your ds chooses and packs his own for the next day as something to do together. If you decided its too stressy and you want to take him out then at least you have a mobile lunch to take with you for a kind of picnic.

Keep things in the fridge like carrot sticks, packets of raisins and easy snack stuff for day time. FORGET the housework and do the dishes when he is asleep. Not being funny but I have a tendancy for lazy days when the weather is good and we buy party paper plates for lunches/snacks and have it in the garden and chuck them away!

I always got DS involved in the housework from small and so he loves hoovering, dusting with me (I give him a pack baby wipes and off he goes). Sunday roast means he is in charge of peeling the potatoes and carrots with a peeler. Might sound silly but it means he is still doing something with you.

Best of all resign yourself that its going to be busy and you are not goinig to change that so plan a routine for yourself each day and stick with it.

When DS was small it was always bathtime in bubbles and then I actually sat in the loo with a hot coffee and a magazine and that was my quiet moment so I do sympathise :)

Also build a holiday calendar between you ie play time, breakfast, lunch, going out, cooking lesson etc and stick with it.

He may screech and scream for a bit because he isnt used to it happening and also his routine is out of sync due to the nursery mornings stopping so its going to throw him out and he will expect you to fill it.

But maybe if you stick with it and ignore the demands he may get used to the timetable by the end of the hols and you can use it over his school time also :)

Thanks so much for your replies coff33pot. I've got a visual schedule and, like you suggest, I'm going to make a plan of the things we'll be doing each day - including time for him to play by himself!

You're probably right, I should do more in the evening (eg make sandwiches) but I feel so utterly exhausted by the time my son goes to bed that I hardly feel capable of anything. I know that sounds really pathetic, but it's like any energy has been drained out of me. I tend to tidy up a bit, maybe do a bit of cleaning, briefly plan what we'll do the next day, make something to eat, watch a bit of TV or look at Mumsnet, then go to bed before 10.

I might try the lunch box idea and also dusting with baby wipes - thanks!

Hello
I don't have that much advice, although a lot of respect for you - it must be exhausting.

Some idea though - swimming? Gets my kids exhausted and I can probably get them in to bed quicker :)
Does he enjoy walks or are they tricky?

I always find that if I can get them physically exhausted then they are more settled at home.
And yes make a list of things to do - however small (throwing a balloon around, hand painting, making jewellery from pasta) then when you are pulling your hair out and can't think anymore you don't have to as there will be something to do from your list.

Take one day at a time :)

Hi, PrinceRogersNelson, thanks for your reply.

I always make a list of activities - have done since my son was quite young. However, it's now a bit trickier as he doesn't want to do lots of the activities I suggest! If I try to insist, he's irritable and cross and I think - what on earth is the point in trying to force him to, eg, throw a balloon around if he doesn't want to? But if I don't suggest stuff, he'll do the same few, repetitive things, always involving me. There doesn't seem to be a happy medium!

I agree about the physical exhaustion thing. I'll definitely take him swimming some days, and we also do walks - we go out every day - but nothing seems to wear him out!

Do you have a trampoline? You can usually pick one up on ebay, even the small indoor ones with a handle can be good to keep amused for a while. Or you can try family fund, cerebra etc

I can only say it does get easier, their attention span does get better and 3-4 is probably the hardest bit.

Do you have homestart where you are (volunteers) who could give you a break. Or you could apply for a social care assessment for you as a carer / your child to access leisure activities. It can take a while and usually at 3 they say its not that different to the level of supervision of any other child and are reluctant to give any help, but even if you get a few hours it is usually then possible to build up from there.

If you have a local carers charity they sometimes have a baby sitting service. They may also know of leisure activities - which won't be less exhausting but at least you may be among others in the same boat.

Otherwise I just stuck DS in a buggy and walked. It was still not a rest for me but actually walking was easier than being at home so it was less exhausting.

A cycle trailer can also be good. I just found it was often easier to be out than in.

My other boys at that age used to love pulling all the cushions off the sofa and getting all the pillows and just completely covering the living room floor and running up and down the sofa and jumping over all the cushions. If you can 'create' your own soft play area then although its messy that might keep him amused.

Hi Agnes, yes, we have one of those little trampolines. He'll go on it sometimes - but only if I either sing or count while he's on it. Otherwise he's not interested.

I agree that it's often easier to be out than in. I worry that if I put DS in a buggy he won't be getting any exercise, so usually we both walk. But we walk round our local area so often that it can get a bit boring!

I'll see if I can find enough cushions/pillows to try the soft play idea - he might like that. I'll also look into Homestart. But I have to admit I'd feel really embarrassed asking for help - I'm a SAHM with only one child, so I have no idea why I find it so hard to cope, when many other mums have a job and several children to look after.

Hi Kate, I really sympthise, no wonder you're exhausted. I am a teacher in special education as well as having two young kids so can imagine a bit what you're going through. You sound such a great mother trying to keep him happy and stimulated all the time, no wonder you feel too wiped out to do much once your time is your own.

Visual timetable such a good idea so he feels more secure in the less structured days. The short tolerance of activities is the hardest thing to manage so maybe whenever he tries something new/less popular, he's rewarded by a return to one of his favourite activities? Could you use an egg timer for him to try to play by himself, eg building bricks into a certain thing like a building/spaceship etc for 3 mins while you get cup of tea, build up to 5 mins, 7 mins etc - ideas could be playdough, drawing with felt tips (give him specific ideas of what to draw if necessary), mosaic pieces, simple puzzles - get him used to playing by himself in short steps with lots of praise for whatever he achieves.

Outside is great, would he be interested in riding a scooter? My 4 year old will go anywhere on hers!

Shame about playdates as would make such a difference for you as well as him. Not sure what to suggest, would taking him to a softplay area with other children give you time to chat while he explored or is he clingy to you? Or maybe a visit to somewhere specific (farm park etc) where other kids would also get a lot of parent interaction and you could share it? Gets pricey though with that sort of entertainment, so not ideal for regular playdates.

Will keep thinking!

hi,
firstly would like to say I know exactly what you mean about the exhaustion. I'm a single mum to a 4 year old ASD son who sounds remarkably similar to yours.I really feel for you as it can be so isolating and tiring. We can't do playdates etc.. either.
Is there anyway your son would be interested in an IPAD or similar tablet? We bought a 2nd hand IPAD off a neighbour and it's been fantastic. There are some brilliant apps and games and it is one thing that'll usually keeps DS occupied when I have stuff to do.
Hopefully the warmer weather will last for a while now as parks, outdoors etc.. are great.
Visual timetsables with lots of advance warnings about change etc.. are great too.
My heart goes out to you as I found three the hardest stage and got very depressed.
Do you have a local special needs centre you can attend? ours has been a godsend for us both.

beatofthedrum, thanks for your kind words. It made me cry when you said I sound like a great mother, as I feel so rubbish, and no one ever tells me I'm doing a good job - in fact no one ever says anything positive to me at all.

We tried using egg timers for a while, and maybe I'll reintroduce that. I'm always trying to encourage him to play by himself, but usually without much success (eg I put out some little jigsaws for him yesterday, and he grudgingly did them, but in a grumpy way - so it wasn't much fun for either of us). He has a scooter - but recently when I've taken him out on it, he just wants to walk after a minute or so. We go to soft play sometimes, but, you've guessed it, he doesn't play by himself at all. I look jealously at other mums having a coffee and a chat, while I'm always on the soft play equipment with my son. He just doesn't seem to have the motivation to play by himself at all.

tiredmummy, I empathise with your name! I'm considering getting an ipad. I've put a few games on my phone, and I'll see how he gets on with them (I don't want him to be glued to my phone all the time, but if he'll do it by himself for 5 minutes, it's better than nothing). We'll definitely go to parks, etc, this week, but even there he seems at a bit of a loss over what to do. I don't think there are any special needs centres round here, but I'll have a look and see if I can find anything.

Thanks again to everyone who's replied, I really appreciate it.

What sort of outside support do you have and do you do any sort of 'training' with him?

Mine both have autism and they had a home visiting teacher 3 times a week at that age, and it was really helpful in terms of helping with skills like turn taking, listening, and all that and I was able to watch and learn how to do it too, which I did and was able to build on.

Have you read up on all the different types of what do they call them? interventions? From ABA to sonrise?

I spent so much time on the floor doing different things, trying to engage them. Even things like facial expressions. "Happy Face" "Sad Face" "Angry Face"...

All the stuff that nt children just seem to absorb, but ours need a structured programme to learn.

There is no shame in asking for help! Nobody expects you to just know how to deal with all this stuff! You aren't - what was it you called yourself? pathetic? at all. You're not and you mustn't think that.

The fact that you've already tried most of the ideas anyone has been able to come up with shows all the time, effort and patience you're putting into your little boy every single day. While it must be so draining at the moment, there's no doubt your little boy could not ask for more, you're giving him everything you've got and doing it out of love. He's a lucky wee boy and you need to feel good about all you're doing!

I'm so sorry no-one's able to come up with something you haven't considered yet. I suppose there's not much else to do but keep going (!!) and know increased independence will come, as he matures and nursery and then school play an increasing part in his life. You're certainly building him up for the best possible future with your parenting x

Sorry, x-posted with Hecate, that sounds really helpful!

I found visual timetables at home made ds1 (severely autistic) worse as he was always trying to rush through them, so binned them. If he needs a particular day explained to him I just write it in a list.

DS1 has to go out each day or he's impossible - we tend to do walks, on the beach or at the moors.

Things became easier when he learned to use google maps/you tube independently as then he had an activity he would do. Before then he would hammer on windows or climb up and hang over fences. It took a while to teach him (although tbh I paid ds2 50p a session to sit next to him with the mouse - and he learned gradually from that - ds2 was VERY willing to do that btw!)

My eldest used to do something similar, jimjams. we had a train with a velcro strip on it and pictures with velcro on the back of them. My eldest would rip off the one he was interested in and chuck it at me and grunt at me. This grunt could roughly be translated as "we are doing that or nothing and you can cock right off if you think we are working through the lot to get to it."

My youngest was so passive in those days that he'd just go however he was led and not really seem aware of anything, iyswim. But my eldest. Oh my!

Nowadays I do find lists very useful too. My youngest likes to tick things off. He's also got a diary. Which is a good thing and a bad thing, because he goes on and on and on and bloody on to pin you down to a date and time for everything.

I do empathise, when my ds was this age it was hard. He was also incapable of entertaining himself in any way other than repetitive, functionless 'play'. It is so tiring.

In the short term (ie over holidays) I agree with others, try and tire him out as much as you can. Thankfully the nice weather (here in London and south anyway) is apparently going to continue so you can hopefully go out and about a bit.

Does he like swimming? Is there an open air pool you can go to (or even go to the seaside anywhere)? My ds at that age could happily spend ages throwing pebbles into the sea and splashing at the edge. But even an indoor swimming pool good if outdoors not an option. Great for tiring him out.

Is there family you can stay with to help share the load?

Are there any groups locally (try NAS local branch or Contact A Family, they run events and get-togethers throughout the summer in our area).

In the longer term, have you looked into any intervention? He sounds very much like my ds (now 5yo, HFA). We have done ABA (verbal behaviour approach) for nearly 2 years and it has transformed things.

I would really recommend you read Robert Schramm book on ABA as a great introduction - the chapter on the controlling child really resonated with me when I read when ds was 3yo.

Please don't feel that you're moaning - you're in a very hard position even just having a child with ASD, and being on your own must be very tough. We'll all help as much as we can

Thanks again for all your replies.

He's never listened to stories on an MP3 player, so that would be worth a try - I'll see if his dad can sort something out (I'm hopeless with technical stuff!)

He used to have Portage, but that stopped when he started nursery. He gets lots of help and support at nursery but I haven't tried ABA with him - am I right in thinking it's very expensive?

Sadly no family support. I know it would be a lot easier if I had. Earlier this year a friend came to stay with me for a couple of nights, and it was wonderful having someone to help me with my son - gave me a glimpse of how different things would be with a partner/close family to help.

There's a local branch of the NAS, and they do a monthly event which I always go to - although even there I struggle to keep him entertained! I'm just about to look up the Contact a Family site.

In the meantime, I'll try to keep him busy over the summer, including swimming and hopefully a trip to the seaside (I don't drive, so it will have to be by public transport - which is where he tends to have some of his worst meltdowns, so I'm a bit apprehensive!)

Thanks again to all of you - you must be so busy with your own lives and children, and I really appreciate your support.

Well, yes, ABA can be expensive. It is possible to get it funded for school-age children (agnesdipesto and silverfrog both have this, while I have a semi-programme funded), but you would have to fund it yourself to start with. Costs can be kept down if you can do some therapy yourself. If you want to know more let me know, am happy to share everything I know about it - or search past threads.

Is learning to drive an option for you? It might make things easier in the future...

Whereabouts are you? There might be posters here who live nearby you could arrange to meet?

If it makes you feel better DS at that age could not play on his own for more than 20 seconds, let alone 3 minutes! So don't feel rubbish as it is an impossible task. If you have a computer poissonrouge is a nice website very cause and effect. Of course you will still feel guilty about him being sat on a computer but at least its a break for you.

Look into cerebra, family fund etc for iPads or I agree driving lessons. Are you getting DLA and disabled tax credits and could perhaps use this for taxis?

But also get a carers / disabled child assessment. We get 3 hours a week direct payments in the holidays, but a single parent would probably get more. We also get a free specially trained sitter once a month. Its not a huge amount but its a start.