Maddie and Mallory in 2010.

It’s always there. It lurks just below the surface. The world is not designed for your child, so you are always looking around the corner to see what the next danger might be that you need to help them avoid. I guess you could say we (parents of kids with disabilities) are like the secret service, always on the lookout for a potential harm to the person you are there to protect.

Is it exhausting? Fuck yeah it is. The deal is that you continue to push on through as there is no else who will do the job if you don’t.

There is a perception that people on the autism spectrum are robotic in their ways of life. That their life is a routine of a few rituals that they have in constant rotation. On some levels that is true, as it makes a world not designed for them easier to navigate. Maddie always brings a backpack with her which is usually loaded up with books and a basketball. This bag always gives her something to do when she gets to her next destination. Even more so, it’s her security blanket. A security blanket that just happens to feel good to her, as it straps tightly around her shoulders and works like a weighted vest.

As routine oriented as Maddie can be, she is also extremely unpredictable. She can have a meltdown at seemingly any moment and just bolt out into traffic. We live at the end of a cul-de-sac, which is the best situation I can imagine for her. I can’t fathom how stressful it must be for a parent of a child with similar disability to Maddie’s who lives in a busy metropolitan area.

As she gets older it has become a little easier because Maddie seems to have a better understanding of her surroundings. I can recall when she first started talking in sentences (6-8 years old), she would ask what would happen if she jumped in front of a car. We would repeat what she had heard many times that she would get hurt really badly and that we love her very much, so we never want that to happen. Often Maddie’s response would be her laughingly asking would she have to go the hospital? Her response was the last thing we wanted to hear in regards to this subject, but you would have to try to stay calm, even though your voice sounded exasperated when telling her for the umpteenth time that she getting hurt is not funny. It was one of those situations where you try to be as honest as you can, but you end up not sure that you aren’t just inspiring her to do what you fear her doing the most, as she doesn’t truly understand the consequences of her potential actions.

Now comes to the worst fear we parents have. What happens to our child when we pass away? Even if there is a sibling or other relative to look after their best interests, it’s not the same. In most cases, the parent will give the best care because of a little thing called unconditional love. Most of us parents have this disease and no matter how frustrated you might be in the moment, thankfully unconditional love is always lurking in the background.

Susan and I have recently set up a trust to help take care of the costs for Maddie. Plug time. The person we used to set up our trust is Gordon Homes. Gordon is a great guy who has a son on the spectrum. He is extremely knowledgeable in the specifics for a trust for people with special needs and is also very supportive of autism charities. Click on this link if you want more info from him.

I’m guessing Susan will be at least 100 before she kicks open the casket door, considering how she never stops moving and her fitness  is on the level of a yoga instructor. I used to think if I can make it to 75 that seemed good enough. I didn’t see the great motivation in living past that. Maddie has changed my mind on this subject, as I have to stick it out as long as possible. Even when my girl is in her 50’s, Maddie’s going to need a jackass like me to keep her laughing. Even if it’s a guy in his 80’s taking out his teeth to make it happen.