So……. I have taken a few weeks away from blogging. To be honest it has mostly just been due to time constraints as I am now working more days, and I have been spending my ‘down time’ tutoring Touristo in the afternoons. I have also been in somewhat of an ‘aspie emotional place’ as life has seen a lot of changes in the past few months, and I am adjusting in the best way I know how…..which is at a snail’s pace.
For today’s post, I wanted to write something a bit selfish and cathartic. That is, my thought process about what ‘forever’ looks like for us post Touristo’s diagnosis.
When Touristo was diagnosed as autistic, one of the first things I had to wrap my head around was……’there is a good chance he will be living with me for the rest of my life’. At the point of diagnosis, the professionals were rather bleak about his potential and so I kind of made peace with that being what was inevitably going to happen. When you have a child diagnosed with autism, you are generally given some literature about what autism is, or they may give you the ‘Autism 101’ talk. Either way, it is the most depressing thing you will ever hear, and is essentially a list of all the deficits your child has in comparison to their typical peers, and all the things that they probably will never be able to do. So following this, the first place my mind went was ‘the future’ and ‘FOREVER’.
What on earth is our FOREVER going to look like? When you have just been read a list of everything that is ‘wrong’ with your kid, it would be easy to become very scared. I get that some parents in the early stage get scared by the ‘forever’ of it all. Except, this isn’t what I wanted for our life together, I didn’t really want to be scared and sad. What I needed was a crystal ball – that would make me feel better! I had this unrelenting feeling everything would be fine, but being built the way I am, I needed more concrete proof that it would be OK. So of course I went in search of a crystal ball. I can hear people laughing at the insanity of this thought process, especially if they know anything about autism, but I was new to this world.
So off I went to do an insane amount of reading, meet adult autistics, hear about family’s personal journeys etc etc etc…… But the first thing I learned was that every story is completely different from the next. There is no pattern. There is no looking at little Billy at age 3, comparing him to what little Kofi was like at age 3, and predicting an outcome. It doesn’t work that way. It was also during this mission to find my crystal ball, that my suspicions about my own Aspergers were confirmed. But my mission to find an effective crystal ball had failed! Or had it? Along the way I had met the most amazing individuals and families, and there was one thing in common. Whilst future trajectories for autistics are super varied, the one thing that is generally true, is that with love and support, the future does not have to be doom and gloom. It can be amazing and brilliant, as much so as anyone else’s life!
The next part of this thought process was just looking at my son. I so desperately wanted for him to have the best quality of life, and I was worried that he wouldn’t (because of this list of things that he would never be able to do). First point, the list is wrong…. he is constantly checking things off the list of things that he is not meant to ever be able to do. He may take a while, but he gets there. Second point, whether a person has autism or not does not determine quality of life. It took my son to teach me that. I look at this kid and he is a happy person, probably the happiest person I know. He finds joy in the most amazingly small things. As he grows, I know that no matter what his development looks like, there will continue to be happiness in his life as it is a fundamental part of who he is.
The last part of this thought process was tackling the FOREVER. I mean as a parent, you expect that you will most likely raise your children and then they will move on with their own life. Or with kids these days that they might boomerang a few times and then leave when they are 30…….actually, this really isn’t a given. I know more than a handful of people in their 30’s who are still living in their parent’s homes……and my uncle was still living with my grandmother in his 50s and 60s (sigh). Ok……..so maybe you don’t have kids and ‘expect’ that they will move out…..let’s change it to ‘expect that they will have the ability to live independently, if they so choose’. Touristo’s future in this respect was, and still is, totally up in the air. This isn’t something I grieved/mourned, but I did have to get my head around it.
Then one day I came across a mother with an autistic, adult son who are still very much moving through this world together as a team. She is dynamic, and he is a sweet, gentle soul. It is certainly a different relationship than what you would expect from a typical mother-son relationship, but it is beautiful and they have a happy life together. It inspired me and was a turning point where I thought to myself ‘ if this beautiful soul, this gentle, kind human that I love so much is going to be my partner in crime FOREVER……is that the worst thing that can happen in life? Is that even a bad thing?……’. I eventually realised that as much as, as a mother you want your kids to be independent, that this may not be our story……our story might be different and if so, it will be just as glorious as anyone elses. It will have a ‘happily ever after’, no matter what that looks like.
Anyhow, since then I have had this picture in my mind’s eye as to what this might look like. You see I am a planner. I am rigid and I like to know what comes next. Uncertainty makes me very uncomfortable and anxious. So I projected what our family would be doing in 10, 20, 30, 40 years time. I had decided that in 20 years, my daughter would probably be off making a name for herself on Broadway (as she is very dramatic), and the 3 of us would still be here living in Sydney, with occasional jaunts around the world to watch the Princess perform. But Touristo would always be with me…..that’s not good or bad…..it just is what it is. I was very comfortable with this…..it is what I had projected.
Since our last trip over Christmas, I have seen such a massive change in him. His language is developing, he is becoming more independent, and I am able to teach him at home at grade level using appropriate adjustments. His future is uncertain again. Our future is uncertain again. It’s not out of the realm of possibility that he will function independently. Then what I realised is that his future hadn’t become uncertain again, it always has been. You can’t predict or project anything about anyone’s life. Ever. To try and do so is completely foolish. The picture of what his/our future is likely to look like will fluctuate throughout time more wildly than crypto-currency.
Now I am not complaining – it is all great! But it has forced me to get my head around the fact that I have to well and truly destroy any hope of procuring my crystal ball. IT DOES NOT EXIST. I have to become more adaptable and stop planning. I have to roll with the punches, just live life and take whatever comes. This realisation has forced me to confront the fact that I need to change…..and I don’t like change.
So that, my friends, is one of the many thought bubbles that has ruminating in my head in recent months. I already feel slightly better for spitting it out. I would love to hear from others about your/your family’s stories if you would like to comment.