Raising Different – Hope is a dangerous mindset when life happens

When asked about our life parenting two children with autism, I have become accustomed to providing the same answer time and time again. I am a realist.

For some, reading this, you are not going to agree or maybe even like how I approach our lives with the boys. The fact of the matter is, I gave up caring what other people thought about myself, my beliefs, and how I parent. Some people prefer to focus on ideas like hope, belief, and trust. I am a realist in its truest form, and that comes with a focus on progress, betterment, and outcomes.

I am not sure when my attitude shifted, but I just know it did. The first couple of years navigating this new realm and future for our lives, I honestly remember having hope. You read the books, you scan the internet, you listen to the podcasts, and then you realize that none of them actually applies, because every child and every family situation is different. What works in one household may not work in another. You are on an island by yourself; you either learn to swim or sink in the tough times ahead.

I think the first place where hope escaped was when I looked forward to our future. Both our boys are very far on the spectrum, so in the early years, we concluded that their lives would be different. University, workforce, marriage, and grandchildren were replaced with living accommodations, day programs, and full-time care staff. I often watch parents in the same situation as us struggle to hold onto hope in those areas rather than to plan. It may sound cold, but being a realist will be better for our boys in the long run. If things change, I will be the first to celebrate. But that is a big “if”.

I think the other area that hit me the hardest was sports, friends, activities, and school. I hear a lot about integration and the positives it can bring to children with autism. I do believe there are areas where it helps, but for us, the level of qualified teachers, staff, and consultants is a much greater asset. I can remember how uncomfortable I was walking into the special needs school that first time. I am not proud of it, but I was judging the level of the kids around our boys. Now, I fight every year to get them back into those programs because that is what is best for them. Sports, friends, and level of schooling have taken a backseat to behaviour, life skills, and personal care. I am a realist.

The one area where I still hold out hope is around verbal communication. To be honest, I cannot influence this, so I think it is easier to use hope rather than planning. We have done the speech therapy, ABA work, and a multitude of other practices. If our boys ever say a word, it will be a one-off chance at a time when nobody expects it. For this, I can hope but still be aware that if it doesn’t happen, the odds were against us.

Again, for some, they will function and get through the years with hope. Others will say that I am just using a defence mechanism to shield myself from disappointment. I prefer to be logical and do what is best for the future, ours and the boys. I have seen it in my entrepreneurial endeavours that actions speak louder than words, and planning works better than wishing. I prefer to create the roadmap, and along the way, leave room for a couple of detours. 

Whether you think you can, or you think you can’t, you’re right (Henry Ford). The most interesting part is that if their first word is a swear, you will see the happiest cab parent on earth to hear those words.