Saturday, August 23, 2014

Dear Matthew

Dear Matthew;
I’m glad you are finally out of the hospital and that the MRI showed that nothing was wrong with you. It is one of a parent’s biggest fears, to have something deathly wrong with one of their children. I fear for you often.

I remember when we took you home in 2000. You were about 5 days old, and wearing clothes for the first time… and you sure weren’t enjoying it! You practically swam in that snowsuit that made you look like a starfish. But this was the beginning- a permanent separator between life “before” and life “now”. I was a dad now. I had been looking forward to this occasion for many years, often in the fear that Jesus would come back before I had the chance to initiate the process.
That very night you woke up crying. Mama and I both woke up, and we stumbled around getting the bottle, the formula, making sure the thing was shaken well and warm enough. A parenting class at the hospital can’t prepare you for the reality of knowing that this little person, that came out of the window instead of the door, was entirely our responsibility now. No hospital, no nurses, just you and me, kid.

I lost my job two months after you were born. It was something I wasn’t expecting, and punctured my spirit. When I got home, your mama held out the only thing that was going to make me feel better- you. Little two-month-old Matthew, smiling with that toothless smile all your own. You restored my spirit then and you have continued to do it.
We anxiously awaited your first time crawling, your first steps, your first words. Still waiting on that last one; probably should give up on that one by now, but I can’t. I know you can’t help it, if you can’t talk you can’t talk, it isn’t your fault. But parents have dreams. They dream of big things, like seeing their daughter sink a winning basketball shot, or seeing their son score the touchdown that wins the championship; a daughter who graduates at the head of her class, a son who gets a scholarship; a daughter to lead down the aisle, a son who will start his own family and likely do things the same way his dad did them, for better or for worse. But they also dream of small things. The first time they see their child ride a bike alone. The first time they can make their own choices about what they like or dislike, developing their own personality. Saying “Daddy” for the first time.

Just once. That’s all I would like, Lord.
My love for you has never ended and never will. This life has been difficult, for your mama and I, and also for you. I don’t often think about how hard things are for you, and that is to my detriment. You’re the one who can’t tell me when he is in pain, or needs to use the bathroom, or wants something to eat. You’re the one with autism, not me. But your daddy is a little thick in the head sometimes, and he can’t see past the end of his own nose.

The older I get, the less certain about things I seem to be. I don’t know why you have autism. I don’t know why your sister has it. Certainly one of many questions on my list for the Lord when I get up there to see him, but that won’t be for another 50 years, 35 if I don’t quit drinking Mountain Dew. In the meantime, my stock answer for all the mysteries of life is “I don’t know.” But I’m supposed to know. Daddy is supposed to know everything. He is supposed to be able to tell you why the sky is blue, and why the grass is green, and why your nose faces down instead of up. Daddy is the one who is supposed to be able to give you a reason why you can’t jump your skateboard off the rocks at the river, a reason that doesn’t include the words “Because I told you so.”
I don’t know why you can’t talk. I don’t know why you hurt yourself. I don’t know why you hurt your mama, or your sister, or me. I know you aren’t doing it spitefully, I would just like to know why you are doing it. Because maybe then I can help you stop. For your sake, not mine. Hit me all you want, I can take that. But when you hurt yourself, why that I cannot take.

Autism has robbed us of a good part of what fathers and sons across the generations have been able to enjoy. But it can’t, and it won’t, rob us of the core, the center, the axis around which the whole of our relationship turns. I love you, Matthew. No matter how many times you hit me, no matter how many holes you put in the walls, if you never say a word to me, my love for you will not change. I’ll stand up for you, I’ll fight for you, I’ll even die for you and then resurrect myself so I can get back in the game for you.

Because I love you.

Saturday, August 09, 2014

Incident at Convenient Food Mart store #702

To whom it may concern;

This message is in regards to an incident that happened tonight at store #702, on East Ave. in Elyria, and why I won't be shopping at that particular store anymore.

My children are both autistic. They are non-verbal and have severe developmental delays. They don't understand situations sometimes. My son in particular is prone to outbursts. I do my best to keep him under control, and if his behavior becomes very bad in public, I escort him out. I have the safety of others in mind. However, he is still my son. I'm not going to shut him up at home and pretend like he's invisible.

Tonight my son and I went to Convenient store #702 to pick up some soda and milk, and some candy for the kids. We loaded our basket with no problem. Standing in line waiting our turn, I rubbed my son's back and told him that we had to wait our turn. Suddenly out of nowhere, he kicked and headbutted me. I wasn't going to stay in line any longer. I backed him up to an open space and attempted to calm him down out of reach of others.

When I thought I succeeded, I wanted to explain the situation to the security guard that store #702 employs, and let him know that my son isn't a delinquent, just a boy with severe developmental delays and disabilities, and that if people were calm I would be able to get my son out of the store easier. At that moment my son kicked the security guard. The man looked at him, and my son kicked him again. At that moment the man said "Do you want me to take you to jail?"

Really? Really? The guy knows that my son doesn't understand his own behavior and he threatens to take him to jail? I looked at the security guard with a dumbfounded look on my face and asked him if he really was thinking about sending an autistic, disabled teen to jail. My son kicked him again; he just looked angrily at my son and at me, and then said "I think you two should just leave." Which we were attempting to do anyway.

I respect the need for security guards, especially at that location. But I think the gentleman in question, indeed any security guard employed by Convenient Food Mart #702, needs to educate themselves a bit on developmental disabilities and how to deal with such situations. Spoiler: angrily threatening to send a non-verbal autistic to jail isn't the best approach.

So I have bought my last Mountain Dew and gallon of milk at that store. I won't go in under any circumstances. I understand my responsibility in this situation, that things need to be taken care of with my son. Believe me, I have been pursuing that zealously. But someone threatening to send my son to jail? Yeah, that isn't happening.

Sean L. MacNair