Friday, December 26, 2014

Bang your head, mental health will drive you mad

Someone please message me tomorrow to make sure I didn't do something stupid.

Yesterday was Christmas. We were awoken at 7AM to the sound of my daughter crying and my son headbanging in his room. My wife and I put the battleplan into action- I tended to my son, she tended to my daughter. I wiped his butt and changed his diaper. While my daughter was now laughing and kissing my wife, my son kicked me and threw himself down on the floor, screaming and crying.

Someone please message me tomorrow to make sure I didn't do something stupid.

8AM rolls around, and my son has plastered psoriasis cream all over his head. Bath time. I start up the water and tell him to get into the tub. He bangs his head on the wall and kicks me. Then hits me. Then kicks me again. I finally get him into the tub and wash the cream from his hair.

Someone please message me tomorrow to make sure I didn't do something stupid.

While parents were watching their kids laugh with glee at the arrival of the Lego set they desperately pleaded with Paul Blart, Mall Santa for, I watched my son start to move towards his bedroom, stop abruptly, and then move just as quickly towards my wife in order to rain blows upon her head. I was reclining in the easy chair at the time, so in the time it took me to get my fat ass out of that chair my wife took ten shots to the head. He was sent to his room. 9:30AM.

Someone please message me tomorrow to make sure I didn't do something stupid.

After my son administered my fourth beating of the day, I crashed into the recliner and wept hard. Is this life? Is this all that I have to look forward to? When will it be our turn to see our children enjoy Christmas morning, with the smiles and hugs that accompany such an event for families all over the country? Will it ever be our turn? Will this ever end? Or will the end only come when my son is sent to a group home, or I just die?


Someone please message me tomorrow to make sure I didn't do something stupid.

"You need to get some help. You can't go on like this."

Well no shit, Sherlock. I'm not at the end of my rope, I'm hanging from a frayed loose end that is hanging from the end of the rope. I sat in my chair, and wept hard. What can I do? I can't go on like this... but I have to keep going on. I have no choice. There are waiting lists for group homes, and they barely move. To get an emergency exemption isn't as easy as saying "here, look at my bruises". There are forms, and committees, and assessments, and excuses. A group home isn't happening any time soon.

How about therapy? I am ahead of you on that one. I have been seeing a therapist for 9 years. She recently moved on, so I have been assigned to another therapist in the same organization. He already cancelled and rescheduled on me once. Not real excited about switching. Really not excited about seeing a guy.

"Sexist much?" Yeah, it sure looks that way. I will confess to you one thing that will either make me look sexist, or sensitive, or just a guy on the make. As a rule I prefer the company of women to men. I don't like talking to guys. Women tend to have more conversations of substance than men. The majority of my Twitter friends are women, women whom I refer to as my "Twitter sisters" because I feel that strongly about the relationships we have established. Canadian Mom, Tel Aviv Mom, Boston Mom, Washington Mom, Ciarra the UK Gamer, LL Cool Reverend whose state I can never remember, and others whose names I won't give but whose presence is just as strong. You read my last blog entry, did you not? (If you didn't, go do so.) When Eminem told me she had breast cancer it crushed me harder than it probably should have. But what can I say? These people mean a lot to me.

They probably mean more to me than they should, I realize that. They all have lives that include husbands and children with various special needs. (Except for one, who is autistic herself). When I have a crisis I can't expect anyone to drop whatever she or he is doing and dig me out of my latest hole. I need to take my medicine, and keep my psychiatrist appointments, and talk to my wife, and pray, and listen to AC/DC loudly.... And being a man, I usually can expect to hear "buck up and be a man!" from someone.

And all of these things I do. I pray... although usually much more for others than myself. I take my medicine, even when it seems to be doing no damn good. I even take extra when I think I should. Yeah, not cool. I keep the psychiatry appointments... which can only take place once a month, otherwise insurance won't cover them. I listen to AC/DC... oh hell yeah I listen to AC/DC, Back In Black is a rock classic. I talk to my wife...

Let's unpack that last one a little, shall we? I will try not to be crass, I will respect the privacy of our relationship, but I will be honest. You go into marriage with certain expectations and dare I say fantasies, and often those expectations are derailed. By the third year and/or the first kid there are no more long conversations about the meaning of love and life over wine and a nighttime fire; there is no hot romance three times a week, or once a week, or even once a month for that matter; special needs children relegate the weekly date night to the "Gee, remember when...?" file of our brains. I love my wife and I am devoted to her. We've been married for 16 years. But let's be honest, our relationship often takes the form of two people who can barely keep their heads above the water. Who can make time for... well, you know,.. when fighting for survival takes all the time and energy you have?

Someone please message me tomorrow to make sure I didn't do something stupid.

And so, Twitter sisters (who will likely be the only ones who read this), this is where my life is now. In order to survive somehow I have to admit honestly that I am no fatherhood superhero, I am often not a "great guy", I am not a traditional strong male, I hate that shit. I am a mess who is currently fighting for survival. This is where the life of an autism father has left me- proud of my children, fiercely protective of my children, loving my children with an incredible love that I never thought I was capable of... but dying on the vine at the same time.

So every once in awhile, could someone just message me to make sure I'm not doing something stupid? I promise, I won't become a life-draining leech. I also promise that when the tough time comes I will have your back.


Thursday, December 18, 2014

The Luxury of Death

What the fuck am I gonna do? We can't die. We don't have that option.

Twitter is a funny beast, isn't it? On one hand you can communicate with celebrities, get as it happens news and connect with others who have similar interests and life situations. On the other hand you can get obsessed with the details of the lives of celebrities, get invented news stories that serve to muck up a landscape already crowded with people who have "the truth" and "a balanced perspective", and become so close to those who have similar interests and life situations that when something serious happens in one of their lives, even though you have never met that person, you feel broken and sad, and weep.

Special needs parents, although being part of a world which has many inhabitants, often feel like an astronaut without a tether, endlessly floating in space, alone. I don't get out unless it involves a necessary grocery trip or a medical appointment for one of my children. I don't get to celebrate holidays, I don't get to have a drink with "the guys"... I missed out on a chance to meet KISS, for crying out loud! A lot of sacrifices made in the name of love, the love of a father for his son and daughter, a love that willingly makes sacrifice after sacrifice but feels the loss of them all the same.

In cases such as this social media becomes that tether, connected to the lives of those who can honestly say "I know how you feel", a tether that often provides the life you need to get up in the morning one more day, clean poop off of the walls and get kicked in the kneecap as you navigate the process of school preparation. I wake up, I turn on the computer, and I check my Twitter feed to see who actually got to go out on a date with their spouse the night before, whose child had a meltdown-free day and whose child had to be medicated that night because they just wouldn't calm down.

We can't die. We don't have that option.

Who is going to take care of our children when we pass from the scene? Sure, some of those children will grow to be adults who can maneuver the daily routines of life, with assistance, perhaps, but maneuver they do. Others require a level of care that leaves their parents exhausted, with no one they know who they could trust with the care of their children, or even someone who would be willing to take on such a burden. Those parents do not have the luxury of dying. The irony is, the stress of their situation may bring on such an end before they normally would reach it. Kind of hurts to get kicked in the kneecap over and over again, you know.

I have breast cancer.

And those words acted as a metaphorical kick to the balls, rendering me unable to give a shit about The Interview or Rajan Rondo or whoever hates the Duggars that day. What the hell, Lord? Do I have that many friends that you think you could hit one of them with a hell of a disease and think I wouldn't notice?

Good God, that sounds selfish, doesn't it? A close friend gets a diagnosis that overturns her world and I'm concerned about how it affects my life? Who the hell am I? It isn't my story! I should be concerned about her husband, her daughter, her future, and yet I am weeping because my close friend's illness is going to overturn the applecart of my life? I mean, WTF?

But you know, I've always been one who looks the issues of life in the face and say "Let's cut the crap". I cannot pretend that the illness of a close friend whom I have never met, and whom I may never get to meet, has not hit me hard. Harder than it should? Well, I'm not taking on that cause today. Tomorrow isn't looking good either.

Find Christ again. I need you to.

Well that leaves me in a bit of a quandary. My friend needs as many sources of strength as she can muster, for her and her family. Yet I want to tell Jesus Christ to fuck off. What to do? Do I stand my philosophical ground and not give Jesus Christ the time of day? Or do I stand with my friend who needs all the friends she can get to stand with her and for her, put away my lingering doubts about the presence of God in our lives, and beseech God to spare her the pain and heartache that cancer usually brings?

Find Christ again. I need you to.

I am not strong. Let's say that again. I am not strong. I am tired. I can't listen to my son hurt himself day after day after day with the doctors that could help him scheduling us for a month off. I can't bear to hear my daughter cry when my son screams, which causes my daughter to cry even harder. I can only get 4 hours of sleep so many days in a row before I emotionally collapse. This life is not easy and I am not Superman.

Find Christ again. I need you to.

Hey, Jesus? It's me. We need to talk....