I have a 23 year old son who is severely affected by autism. He was diagnosed just before 3 years old. We have done many, many interventions; behavior, speech, and occupation therapy. He participated in special needs karate, basketball, running, tennis, music, gymnastics and social groups. Some of these activities went better than others but we learned something from every one of them. Here is some advice I’ve learned along the way.
1. People are well intentioned and will have lots of advice for you. Some of these people will be friends and family and some will be professionals. I find it’s best to say thanks, I’ll look into that. It is definitely necessary to educate yourself. Every child is different and what works for one may not work for another. Go with your gut. You know your child better than anyone. You will be their best advocate.
2. Do not do for them what they can do for themselves. This is true for any child, but people tend to underestimate special needs children. They are capable of a lot more than they are given credit for. It may take some repetition, but they will get there. Being independent is empowering and the more independent they are the more confident they will be.
3. Many of us parents get caught up in “shoulds” they should do this by now. Throw out the timeline. They will get there when they get there. Putting pressure on them or yourself to get a goal met before they’re ready just frustrates everyone. If you’ve introduced a goal and worked on it for a while and they are not getting it move on and reintroduce it at a later date. As a special needs parent, I’ve found that my son has surprised me so many times. There are things I didn’t think he was ready for that he picked up easily and things I thought would be a breeze that he had a really hard time with. I had given up on him learning to tie his shoes and at the age of twenty-one he got it. Go at their pace.
4. Taking children out into public who have social or behavioral issues is not easy. Do it anyway. Every experience is a learning experience. If they are cocooned at home they don’t have the opportunities they need to learn social skills and to practice curbing difficult behaviors. I adopted the attitude early on that we would go on planned outings. If it was a very difficult day and wasn’t going well we would cut it short and go home, more often than not we would be able to stay with some short breaks or visual reminders. If not, we headed home and gave ourselves an A for effort.
5. I can’t stress this one enough – self-care, self-care, self-care. We wear a lot of hats and have responsibilities that parents of neurotypical children do not. We often feel we don’t have time for ourselves but if we are exhausted and depleted, we cannot help our children and will find ourselves melting down right next to them. That doesn’t help anyone. It is essential to have breaks, to have help, to have downtime and to have a life separate from your children. Don’t forget the things you liked to do before you had kids. You have less time sure but that doesn’t mean you can’t find some time.
Balance is essential. Do your best to provide opportunities for your kids but put yourself on the to do list as well.
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This advice is spot-on and such a helpful reminder for any parent navigating the autism journey! It’s true that as parents, we often get wrapped up in what our kids “should” be doing, but every child’s path is unique, and letting go of timelines can be freeing. I love the idea of planned outings—giving kids that chance to learn and practice social skills makes such a difference, even if it means heading home early sometimes. And self-care can’t be emphasised enough. It’s essential, not selfish! autism support workers can be a huge help in providing that extra support, so parents can take breaks and recharge, which benefits everyone involved.