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.