A Long Term Vision – When Reality is More Important than Emotion

Once you see the signs, it is hard not to. As parents of children with autism, you become extra sensitive at identifying signs in other families. Even in the early stages of our journey, we become quite acute at seeing signs in other children that would be indicators of autism. Now remember, the spectrum is very large, but the signs are relatively the same when it comes to behaviours and interactions. You keep it to yourself as it is not your place, but this is the reality of parenting children on the spectrum. You need to leave emotion aside and make the decisions that need to be made.

We already know what a large part of our future will hold. We are not in the realm of graduations, marriages, and grandchildren. Many years ago we had that clarity and it now allows us to plan a different future for our children. Whether it may be group homes or staying in our house and bringing in outside respite and care, the plan has been set in motion long before I wrote this blog. I can tell you today what the budget is to cover the cost of a residence, the staff, the insurance, and all other costs that come with turning our house into theirs. I just have the responsibility of getting the savings to the point where we can make this a reality.

Often Amy and I see parents who are in denial for a very long time. I would say some of our family did not want to look ahead as far as I did just because it was hard to swallow. I am a realist and always have been, so I had to know what types of futures we would have right away. Nothing is set in stone, but there are a few very large aspects of our lives that are now scripted. The fact that our children will not live on their own is one of them. Once you can make this leap through the stages of denial, you can now concentrate on the problem and solutions. It is not beneficial to your family, your children, or anybody else in your bubble to be stuck in denial, sorrow, or regret. From first-hand knowledge, I can tell you these emotions do not “help”.

The other large planning stages include wills and insurance. It is a terrible thought for both Amy and me that we may not be around for our children because I am not sure if they will understand the word “death”. I hope that they won’t feel abandoned – in my heart, this is probably my biggest fear. My wife says she has to live well beyond the average because this is not something she is okay with. I am again a realist, so I need to make sure that I have everything in place if the worst-case scenario occurs. We have significant life insurance for that reason, we have a will long enough to be a novel, with trusts and multiple executors and a very detailed outline of what has to happen. You cannot be emotional, because when it comes to this it is your responsibility to be an “adult”.

The last part we often talk about is who becomes their guardians. It is not like a normal situation where you hope that the children are adults and this is a non-issue. We realize that whoever takes this role will be tied for life with our children. Currently, it is family but as they have their own children and get older it seems unfair for us to make this choice that ties them in for life. As of now, I am not sure that the title “guardian” is much more than names on paper, as I believe that my executor will be the important person who makes sure they always have services and that somebody manages our home and their lives. For now, that will have to do.

In the end, I am not saying that things are not hard, or that emotion is something you should tuck away and try to never feel. I am saying that it is your responsibility as a parent and a guardian to be able to get past this and make the hard decisions that need to be made. They cannot make these decisions or themselves so being their father, or mother, you are by default the one that needs to act. So my advice is to take your time to cry (and this will happen numerous times a year, month, day, or maybe hour), but you then need to become a rock and make sure your kids are “safe” when it comes to an uncertain and undetermined future. 

Don’t think of it as “there is no crying in baseball” , think of it as “those that fail to plan, plan to fail”. Good luck to you all.