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Autistic DSS(9 Posts)
I posted this in the step-parenting board and they suggested I post here
I need some pointers on coping with my DSS1.
Hes 7, 8 at the end of the year. He was diagnosed with autism about 4 years ago, and I have been a fixture in his life for about 3 years now.
He is just such hard work and I don't know what to do anymore. There is also DSD whos 9 and DSS2 whos 4 and they are no trouble but they act up around DSS1 as he is always trying to hit them etc.
He is obsessed with screens, the iPad, the PS4 etc. We limit his time on these things, but the second theres no screens he goes mental, keeps screaming about how bored he is, he will then go and take his frustration out on the other 3 (the 2 others sc's and my ds who is 6) he would play the iPad 24 hrs a day if he could. The other day he scratched the screen in frustration at a game and cracked it, I said that he cannot play it again, and now he moans for it the whole time he is with us (eow and night in the week)
I do love him but I don't like him and I feel so mean because I know it isnt his fault. I adore my other 2 sc's, and often take them places without him because I just cant cope with him. The other day I took them all swimming and DSS1 refused to get in the pool, then started throwing floats at other random children in the pool and screaming, splashing etc, the lifeguards made me get him out.
My DH has his head firmly stuck in the sand, when DSS1 has hurt one of the other dc or been rude to me or just generally done something horrible he just says 'its his autism' consequently, DSS1 doesnt get disciplined for doing things that the other dc would get punished for.
I am concious that DSS1 has begun to notice I feel differently about him than the others. He can be a lovely boy too, he gives hugs and the other day told me he loved me. I just want to be the best sm I can be and I feel like I'm failing with him. I don't want him to dislike me.
Any helpful tips?
You say you love him but you don't like him. And that you feel mean because it's not his fault. You feel mean because, frankly, you ARE being mean. Ask yourself, how annoyed would you be by a child who was visually impaired for being visually impaired? Not so much? Then try to see things from his point of view. Sorry to be blunt, but this touches a nerve....
I think you've been give an unnecessarily hard time in previous replies when you've come asking for help.
Where is your dh in all of this? Because even in a non-blended family you need to be working as a team.
And because you are you need to have that team involve dss mum too, because like it or not she will have a much clearer idea of what works, what doesn't, and what dss' triggers are. What works at mums house and what works at school. Do either use visual timetables? count downs?
DH cannot excuse every unwanted behaviour on autism, that doesn't help anybody. He can't be a Disney dad to a child with autism. You(and he) and he need to learn to distinguish between a tantrum and a meltdown, you need to work the reason behind the reaction, and it isn't always straight forwards.
I don't understand why you've been given a hard time for taking the other dcs out without him, (presumably he's with his dad whilst you do this.) of yours wasn't a blended family this would be within the realms of normal for a SN family. It is advised to give the other dcs some semblance of "normal" family life and activities. In a non-blended family you'd get respite for this reason, (I sure as hell do.) but you are, and I get the feeling you (well technically dh) are respite for the mum.
I think you are right in trying to restrict screen time, but it needs to be thought out, I'm my house screen time is earned, there's a token amount to start (about an hour) it's not taken away for poor behaviour, but good behaviour earns more time. Clear and structured reward system. 30mins extra time earnt by doing x,y or z. X is always something I know dd can do. (Reading a couple of pages of a book to me, getting dressed independently in the morning, etc). Y & Z are a bit trickier, coming to the supermarket for a loaf of bread, playing in the park (sounds easy for some dcs, but for mine being outside is a struggle.)
Taking 4 dcs out and catering for all their needs is hard work even without SN. Especially as most of the time you only have 1.
The swimming incident. Why is it you that had to get ds out? In the nicest possible way you dh needs to get his head out of the sand, and fast. He needs to man up and parent his children. In terms of how to get dss out of the pool, perhaps he needs longer warnings that the liked activity is going to end.
My dd has the same issue with swimming. She has a long processing time. So needs to be allowed extra time for the instruction to sink in.
Before we get in to pool I tell her how long she will have (point out the clock in the pool, "when the big hand gets to the 6 at bottom we get out") then she will get a warning at 15minutes, 10 minutes, 5 minutes, 2&1 minutes, time to get out. I also allow myself extra time for her to get out of the pool. She is reluctant, but she now (been working on this almost weekly for a year) does it without the kicking off, she still moans, but I let that slide.
(This technique can be used for other activities too.)
zzzzz I am not wanting to start an argument with you.
And I am not as new around these boards as my namechange would suggest.
advised by whom perhaps "advised" was the wrong term. But fwiw I have had it advised by the disabled children's team, by my dcs sibs supporter, local direct payments team, and various other professionals involved with my dcs.
If you take the fact that this is about a blended family out of the equation, respite and spending time with the non SN siblings is often suggested on these boards.
Again the use of "normal" is perhaps not the right terminology, but I have no idea what is anymore. Your normal and my normal are two different thing. But my normal is certainly not the same as a family without a child with SNs.
There are things my family cannot do that family's without a SN child can do. My other dcs do not have the same childhood experiences that their school friends do, they miss out on a lot, simply for the fact that their sibling cannot cope with certain things.
It doesn't mean that i/we should all be resigned to that. That meeting one child's needs surpasses the needs of the other children involved. Yes we meet their needs, but not to the continued detriment to the others.
And I'm not saying you're suggesting this at all zzzzz, it's just my opinion on "normal" based on my own experiences.
The most important thing to understand is the behaviour is most likely due to anxiety and sensory overload rather than naughtiness. To control, therefore, you need to use strategies to reduce anxiety and to minimise sensory problems. We find sanctions often escalate the situation because they increase stress.
From your dss's perspective he has to deal with three adults on a regular basis each with it sounds like different rules and expectations. This is going to be very confusing for him so one of the first things you could do is try and go for a united approach with your dh and your dss's mother. Not sure how fixed your contact arrangements are but it would probably help if their is a fixed arrangement so your dss knows when he will be at which house.
Your house is likely to be busy and noisy when the four children are there so you could try allocating your dss a safe space to retreat too when he needs. A trampoline has been a great tool for us for the ds's to work off their anxieties. You could investigate other sensory aids e.g. tangle toys that can help the child self-regulate. Ear defenders and dark glasses can help on visits to busy places. And if the tablet helps in reducing his anxiety then honestly I would let him use it.
We do a lot of divide and conquer as both of my ds's cope better with the world on a 1:1 basis than as a family group. The only thing I would watch out for is that it is not always the same parent with the same child.
We have also learnt over the years what sort of places the ds's can cope with and what is likely to bring on a disaster. Swimming pools in the Summer holidays can be very crowded and noisy and basically a nightmare for a child with sensory issues. On the other hand there are lots of places that are much quieter and you still all can have a good time. Think about where you have been in the past and he has had fun. We have found a short happy visit somewhere is better than a full day out with a meltdown at the end. We often get a season ticket so we can do shorter trips without getting irritated that we have paid for a full day out and only lasted 20 minutes!
Remember most of all that your dss will have difficulty explaining in words what is troubling him. He may well have trouble understanding verbal instructions when he is stressed so when behaviour starts to get challenging keep instructions simple and tell him what you want him to do and not what you don't. Make sure you watch out for the basics like you would a baby - food, drink, toilet, too hot. too cold - because often a child with an ASC does not sense these as well as you might expect.
There are lots of books and courses you can go on to help manage behaviour of children with an ASC - the Explosive child is a good one, Autism West Midlands and the National Autistic Society run courses and have lots of helpful literature and advice lines. But I would guess the best person to ask for advice if you are on good terms with her is your dss's mum who will have learnt his triggers and how best to manage the behaviour over the years.