Published on 12, July, 2020
My son is 19 and last year was diagnosed ASD. He has Down syndrome and the added diagnosis has been a huge lightbulb moment for me. It explains a lot but also leaves me feeling a huge failure. I’m trying to learn what I can and am totally overwhelmed. Right now my biggest worry is how to motivate him to do anything during this weird time. If he could, he would spend the whole day and night on his iPad or iPod either listening to music or watching YouTube (he has a need to watch highly emotive things like screaming fights on soaps or fans crying at concerts)
I find his stubbornness a real challenge and am constantly taking away his iPod or iPad in a fit of frustration to get him to do anything.
I know I need to lower my expectations especially right now. But how do I balance making sure he’s getting some stimulation outside his devices and still learning something (eg trying to build his independence skills by cooking with me) with giving him the space and support he needs.
I just feel I’m failing him on every level.
He has an older brother and younger sister and his dad at home too all self isolating together. His brother is exercising with him most days which is great. He does this happily as idolises his big brother. Should I use this as a reward maybe? But I don’t want to spoil their ‘thing’
my husbands great but totally leaves me to it and doesn’t seem to stress about how our son spends his time.
Any advice or suggestions would be great.
First of all, breathe.... I truly mean this, you are running a whole family in restricted conditions with a son needing extra care. Yet each day you rise from your bed, function, maintain their daily care needs, the care of the home everything. You feel you are failing and yet each night you all go to bed alive, safe and loved. In this mayhem you are still thriving. Well done you. I don’t think what you’re dealing with is easy. Please take time to pat yourself on the back. You are doing a great job already!
secondly, have some time out for you, if you are busy beating yourself up you are only wasting your own energy and helping no-one. Appreciate what you are already succeeding.
Thirdly,
if you want to grow further with aiding your son I suggest starting small, with cooking- find what grabs his attention, a particular smell, favourite food, colour, theme etc and oriented the cooking to his interest to start. Maybe emotional face biscuits like smile faces and angry faces, or a meal motivated to his favourite colour or shape, obviously I don’t know your son so these are vague. I also find timetables really do aid the understanding and keep the lesson short and simple- eg have him aid in peeling carrots with a safety peeler ‘quickly’ then show fun gaps he has missed. Praise highly and finish prep yourself, big up the wonderful carrots he made when eating them so he relates the actions. Even two minute life skills is more than they knew before. Their world is so different they won’t have the same priorities so my best tip would be see how it could attract him from his perspective and keep it short and sim0le. ALWAYS plan to stop before it becomes too much, you know your sons limit. Even if it is 1 minute attention this can still be used and is 1 minute more information than he had before.
I hope this helps, I am ASD and so are my husband and children so I spend my life worrying and reminding myself of the view above helps reiterate to me that I am only human, I know I give my best and that is enough. Even on the days I can’t give my all, you know what? Who cares? The world won’t fall apart and I can start again tomorrow. You are a success otherwise you wouldn’t have all that you already have. Well done you.
Hi there, my 27 year old son also has Downs and severe nonverbal Autism, he was diagnosed at 9.
the only advice i can give is... choose your battles! Lol
my son also loves his ipad and watching fights and screaming, but... i think, he doesn’t ask for much and he gets so much pleasure out of it it would feel wrong to take it off him.
we do spend a lot of time listening to music together, we both like the same stuff, and we have a good dance around the living room and we watch movies together.
i think just maybe you are making trouble where there is non? Times are hard enough at the moment and if hes happy then let sleeping dogs lie i say.
I wouldn’t ruin the thing your son has with your other son, instead try to find something you enjoy doing together - I think you’ll get more in the long run if you try to build bridges rather than using sanctions, though it’ll be frustrating in the short term for sure.
Don't however feel like a failure - this isn’t your fault, life has just dealt you a slightly tougher hand, my bet is you’ve done a sterling job and you just don’t see it :)
Also, how well can he express emotion? Unprocessed 'chaotic emotion' (as I call it) can add to sensory difficulties as it constantly overloads our capacity to process information (often missed in literature as researchers have no practical way to measure or observe the purely internal).
Couple of thoughts that may help.
Does the big brother like cooking? Might it be possible the three of you could cook together once a week/two weeks to generate more interest from the younger.
Have another Ipad with programmes/videos and appeal to him in the kitchen while you cook? May be worth trying radio broadcasts/audio only so he can listen and will (hopefully) engage in the task for visual stimulus.
I suspect he's using the controllable/predictable structure of the sensory input from Ipad to limit other sensory inputs he's struggling to process. IF this is right then speaking in short sentances with extended pauses to let his 'buffer' catch up may help.