Let’s talk about the definition of “caretaker.” You are responsible for giving another person the best care possible despite their shortcomings. You are responsible for giving that person their “best life.”
All of that sounds great and easy. But let’s break this down for how exactly the day goes. It is extremely taxing both physically and mentally. Those who are are caretakers (either through employment or relation) often do not talk about this aspect, but it is necessary to highlight. Z is almost 100 pounds and just about the same height as me. Even getting him dressed is a workout and requires muscle on my part. Mentally, you are constantly bombarded with how you should be beyond this stage.
The truth is that this is A LOT of work.
There. I said it. And I’ll never say it again.
My hubby and I are often very optimistic. If you’ve spent time with us, you’ve definitely heard us say something like “We are almost there!” or “He has made so much improvement!”. But let me get REAL here (because we so often sugar coat this aspect of our lives). Yes, there is improvement. Every day there is improvement. But to put it into perspective, we see things on a micro level. Improvement is slow, extremely slow at times. The only way to survive that is to celebrate even the smallest things. It is not just about being able to tie his shoes, but about knowing where his shoes are in the first place. It is not just about brushing his teeth but about being willing to remain in the bathroom long enough to do his self-care.
“Get that pen” is not just a one-step task. It is actually a total of 6 in our house.
- Listen to my direction
- Understand what “get” means
- Understand what a pen is
- Find that pen
- Get up from doing what you are doing (often stopping in the middle of it)
- Pick up the pen with your hand
We do a lot of things for Z. Dressing, bathing, making food, packing lunches, self-care, even feeding sometimes. So often I take for granted that this is what everyone must be doing. It’s my child, my responsibility. Of course I would. But it’s not. The harsh reality I try not to face is it’s not. It’s not…
Let me say this, Z is totally capable. Functionally, he should have no difficulty. But the problem comes down to motivation and the “mirror” effect.
Motivation… The thorn in our side. Z has to be motivated. He has to be pushed beyond his limits. He will quickly take the easy road each step of the way. Why should he do anything if someone else can do it for him? He will whine and complain and take his sweet precious time to do anything you ask of him until you just end up doing things for him. Most of the time I am juggling him, his brother, myself, my work, the hubby etc and simply don’t have the patience to spend 30 minutes for him to tie his shoes. Z’s motivation changes from day to day and often centers around food which we have to limit due to his tummy issues.
This plays into the egotistical nature of autism. Z gets NOTHING out of this stuff (at least from his perspective). He knows it will get done because it always has so why does he need to? I call him “The King” all the time. Just sit there and let us fan you and feed you grapes. He will master the remote because he gets pleasure from that (and none of us will pause and play his movies). He has even learned to use utensils (sort of) because he doesn’t want his fingers dirty. But this stuff has always been done for him and none of it is fun. Even when I try and make it “fun”, he just looks at me like “are you serious”?
The other thing at play is what I call the “mirror effect”. Z looks at the world through an alternate lens. When I roll a ball to him and ask him to do the same, he will roll it back to himself. If I ask him a question, he will just repeat the question back to me. If I point at myself, he will point at himself. If I try and show him how to brush his teeth or tie his shoes, he is attempting to mirror me which doesn’t work so well. I have a hard time figuring out the best way to show him how to do these things while taking this into effect.
We use IHSS which is a program through California that assists with your needs. We have an annual meeting where we go over all of the things we do for Z. We try not to hold anything back, not to sound too optimistic, but to give the REAL. They basically have a formula to determine how much extra work you do for your child than a typical kid the same age. As they grow older, the gap between their peers broadens and the need is that much greater. At age 11, it was determined that we spend an additional 68 hours a week more than a parent of a typical child their age. Take a second to think about that… 68 hours per week… Assuming your child sleeps 9 hours each night, that is an extra 4.5 hours each day. What could you accomplish in that amount of time? How far behind would you be if you lost that much time each day? How do you fit that in with a 40 hour work week?
Now that Z is 11 years old, we are thinking ahead to when he is 18 years old. When he should be able to take care of himself. When his peers would be moving out of the house, driving cars, attending college, being their own person. Our goal has always been to get Z to this point. We have held fast to the belief that this is temporary, that he will be able to have a “normal” life as he gets older and can be on his own. Is this a “pie in the sky” type of mentality? Probably. But it is necessary so that we all keep moving in this direction.
We work hard on this area. We have made improvements and can see a slight glimmer of light in our tunnel to adulthood. If we could master the motivation and other challenges, he could get there. Even if speech is still a mystery, he could be independent if we could get these things under his belt. I will always believe he is capable. I will always believe this hard work will pay off at some point. I believe when he is older he will look at me and thank me for the amount of effort I put in to get him to where he is in life. I believe that he will change the world, that he will do great things. He simply needs others to believe as well. He needs the world to look at him not as a burden but as a gift. He needs the chance to prove everyone wrong and I show up each and every day to do that.
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Tilted Axis 