My beautiful girl.

Once we had so many options
Once we had dignity and grace
Now we have got nothing but our own time to waste.

Predictable
Yeah, that’s the word of the year
Predictable
All I see, all I hear
Why can’t it be like never before?
Predictable
Yeah, ain’t life a bore
Predictable
Life gets more and more…
Just like I’ve heard it all somewhere before.
Predictable
Sure as the nose on my face
Predictable
Same for the whole human race

–From the Kinks 1981 song Predictable–

As I get older and get set in my real world life, this song gets more and more profound. I say this even though I know my job as a standup comic keeps me about as far away from predictability as any profession could.** What you might not know about being a standup is that as much as I like the new experiences it brings, the thing I hate the most about it is how it isn’t Predictable. I have to hustle week to week to book myself. Unless you are one of the few comedians who can draw a large audience, you are constantly scrambling to get work. There is no health insurance or paid vacation. I can’t file for unemployment benefits. It’s definitely not an ideal scenario for raising children, but after 20 years in the business, it’s kind of late to start up a new career. With my job experience I’m afraid the only other thing I’m qualified to do is hold a $5 dollar pizza sign outside of Little Caesars.

**Rock star is the only gig I can think of that would be less predictable. Considering this, how did Ray Davies manage to write this? Impressive. 

The best answer I can come up with to the question of what is the key to being a good parent is Be Predictable. I used to have a joke in my act that spoke to this. I grew up with a manic depressive father who was so abusive that during his mood swings I used to wish instead he had a drinking problem…you know…so at least I could predict when he would hit me. As dark as that is, there is a simple truth in the joke that children need structure. Sure kids love the occasional happy surprise, but if you think by showing up a couple times a year with a bike or a new X-box only to disappear again, that this will enable you to be seen as some type of a champ, you are delusional. The annual shiny Schwinn doesn’t keep you from being a deadbeat Dad. The most important thing for kids is they can count on you to have their clothes washed and their dinner made. You have to show up. They need to know that you will be consistent and that you will be there for them when they need their basic needs met.

This predictability is only magnified with a special needs child. Keep in mind that the world around is often very confusing to them. It’s noisy, it moves too fast, and it’s scary to them because it’s so unpredictable. For these kids, having a place with structure that offers them few surprises is more important than anything else.

Maddie is the perfect example of this. What will set Maddie off more than anything is not knowing what her day holds. This is where I think her Happy Monday greeting comes from because on Mondays the structure of school or summer camp starts up again. Monday follows a weekend where things don’t work as well for her. Remember that she doesn’t like to watch TV or play with toys. She wants interaction with someone who can facilitate some kind of action to keep her engaged. She can’t do this on her own. That’s why she believes so strongly in TGIM. (figure it out.)

The first thing Maddie says when she gets off the school bus in the afternoon is what we gonna do? It seems like a fairly innocuous question, but it often chills us to the bone. Let’s say you have an answer for it, then the next question that will follow is, what we gonna do after that? As her parent it feels like some kind of sadistic Abbott and Costello routine that never ends. I’m sure some of you would think, well you just need to string a few things together. How hard could that be? And the answer…What is REALLY FUCKING HARD, ALEX. If you don’t come up with the right answers for her, Maddie will often go into meltdown.

Well that sounds like a discipline problem, Scott. You would probably be right, if this was a typical child. Both my twins are told to sit in time out or to go to their rooms if they blow-up over something. Not so easy with a child like Maddie. We have tried this approach with her, but as difficult as it is to impress upon a 5 year-old that parental logic is the right answer for the situation, it basically has no connection with Maddie. She is apt to take a swing, scream at the top of her lungs or try to break something in the house. What will often follow this is some manic behavior of apologizing, but done with no sincerity. This apologizing will be her saying the words because she knows you want her to, but they are spoken with all the sincerity of an informercial selling male enhancement pills.

What Maddie wants more than anything is a schedule. It makes her feel warm inside. In a world that is not built for someone like her, this schedule can help her make sense of it. So no more issues. The schedule solves it, right? I wish it did, but you have to get the right things on the schedule. Oh and there are plenty of times in life where your schedule isn’t going to work with her, because you need to get some stuff done for yourself and the rest of your family. It’s definitely time for me to state at this point that Maddie brings so much joy and love to our world. I know some of this comes off harsh about her, especially when it makes it seem that so much of our life is held hostage by her special needs. I couldn’t write this with any honesty if that wasn’t included, though. It is an exhausting life, but you keep pushing on through because you feel so much love for this girl. A girl who did not ask to be born with this disability.

Sorry to be a bit of a downer today, but not all of life is uplifting. Let me suggest if I’ve left you feeling a little low, bake up some oatmeal chocolate chip cookies and then pull up Hoosiers on Netflix. Enjoy it for me, as it doesn’t currently fit into my schedule.