I have an autistic child. This child now 8 and I'm at a point where all I can think about day and night is preparing this child for adulthood. He is verbal, mid-high functioning. He is toilet trained, He can not yet dress himself. He is social but it is clear he is behind. I don't know where to start in preparing him. What if god forbid something happens to myself or partner then what happens for my child. I don't have a strong family network and neither does my partner. I'm terrified for my child. Will he ever be able to live independently? Have a family? Move out? I just feel so mentally exhausted thinking about it. I don't know if I'm asking for advice or just ranting.
4 Replies
I have three on the spectrum. All verbal, all hf, youngest refuses to do things herself. Oldest and youngest have the most issues.
We are using ndis. Also seeing a Counsellor who is passionate about her work and loves the families she helps. We keep an open dialogue in our home and our goals are to get through the day (in the short term) and to build independent adults in the long term.
If I jump ahead too far a stress out. I have to remember that, behind or not, they are kids and they, like me, will learn from their experiences. Our job is to teach them as much as we can but, most importantly, be there as a safe place when they need support.
My son is 24 years old. Severe intellectual disability (functioning under 5), ASD 3, epilepsy plus more.
I used to be terrified of what would happen, I shouldn’t have wasted my emotional energy.
My son is still acquiring new skills and being more and more independent all of the time.
There are a lot more employers out there prepared to give someone on the spectrum ago and are even targeting them for specific roles.
Yes he may be social, get married and have a family, IF that’s what he wants. Not everyone on it off the spectrum wants a family.
There are many fantastic autistic mentors and roll models out there if you choose to look. Facebook is a great resource.
I’d have a look at The I Can Network and Jeanette Purkins au.
My daughter is now 22, lives independent in a small unit. She works at maccas and attends tafe. She lives 1.5hrs away from us. Her social skills are still poor and she often is used....but she also has a lot of peer support behind her that helps balance everything out. Some special people help guide her through and accept her for her unique ways. These people are people she got to know as a independent adult through school/work/sporting club. Her sister also lives local to her and she supports her emotionally. As a parent, we still worry but have watched her grow so much in the last two years. Helping her become independent was the best decision we made. We really started the process through the last few years at high school. Some of her subject choices actually assisted us with making sure she was ready. From the end of year 12 to the time she left was a huge struggle, she was lost without the routine she knew. She sruggled to maintain employment. At 20 we helped her through the process of moving, finding her own place, enrolling in school. She landed the job not long after and they have been nothing short of amazing with her. That push was what she needed to excel.
Practise mindfulness. Be in the moment. Celebrate all the mini milestones.
I think you need to seek some help, Carers Australia offers up to 6 free counseling sessions. Join some asd carer groups either locally or online.
I have 2 sons with ASD who are 18 and 15. No-one can predict the future, just focus on your son’s strengths, teach him in his preferred learning style, work on the deficits as a part of everyday life, get some good supports around you ie therapists, teaching staff, disability orgs, other ASD carers, family, friends and remember these people will float in and out of your life.
Learn as much as you can about autism and different ways to help your son, adjust your parenting time n time again, trial n error and most importantly celebrate the wins, the achievements, no matter how small! Try to switch off from ‘therapising’ your son all the time, don’t treat every moment as a teaching moment, learn to just BE, have fun, embrace the quirky and the interesting! It’s a wild ride, never a dull moment that’s for sure! I love how my kids minds work, they’re so damn clever, in a non-conventional ways.
I have a couple of mottos:
“Just because you can, doesn’t mean you should” for example, if you have funding for therapy but the therapist just isn’t right for you or your son hates going, then don’t go, change therapists, try a different therapy or just have a break for a bit.
“Prepare for the worst, expect the best”
I preempt any potential triggers, find out as much as I can ahead of time, I ask heaps of questions, talk with teachers, therapists, support workers, employer, we use visuals, timers, whatever. My son has just finished school, it’s a momentous occasion, the magnitude of which only other ASD parents could understand. We have NDIS funding, an employer in his chosen field willing to give him a go, and a DES provider. He will soon start work 2 half days a week with a view to build up over the next 3 - 6 months and when he’s ready, commence an apprenticeship. There is the DAAWS program to support him. We have already met with tafe to discuss his support needs and ask about part time apprenticeships.
There’s never been a better time to have autism! 😊 technology, ndis, more awareness and understanding and just so many programs and supports out there. And you have us parents forging ahead, those who come before you, demanding more for our kids, so in ten years time, the world will be so much more ASD friendly/accepting than ever before.
Our kids have unique talents and abilities that the world needs xx