Sparks and Butterflies...

But aside from that, she's still completely normal

Special Needs Parenting Sucks

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Disclaimer: I love my boys. I love both of them with all my heart and soul.

That being said…

I HATE being a special needs parent. I hate dealing with their issues. I hate how it drains me after an incident. I hate the feeling of helplessness as I watch my son fall under the influence of his anger. I hate all the appointments. I hate all of it. All of it.

Joseph is coming to an age where I need to start censoring what I write here. So I’ll just say he had one of his worst incidents yesterday.

This part I can say: It resulted in a phone call while Logan, Poe, and I were at the grocery store with a full cart. Okay fine – Poe will go and leave me at the store, I’ll finish up, and he’ll come back when he’s done. Logan and I finish out shopping. We’re checking out when we get another call. I ignore it, mainly because I’m checking out, and I don’t want to be one of THOSE people. Immediately I get another call, so I take it. Cool, I’m now one of THOSE people. I wanted to look at the people behind me and say “This really is an emergency, I promise!” So. All I’m told is “We need you.” I inform the secretary that Poe left me at the grocery store. “We know that. Mrs. X is coming for you right now.” “Wait! I have $200 worth of groceries I just paid for!” “She’ll take them.”

Well, okay then.

So, Mrs. X, the school counselor, shows up and we load my son and all those groceries into her car. She is totally nonplussed. “Ever had to haul groceries?” “Mrs. Wilcox, this is not the first time you and your family are a first for me.”

Well, okay then.

She takes me to the park where my son has run… NOT the school. She takes my son and groceries up to the school while I haul my butt into the city park to try and put pieces together. There are adults with walkie talkies strategically placed to prevent escape. Son is on top of structure with rocks. Husband is talking him down. Husband gets him down, they don’t need me to diffuse after all. All in all… Picture the crazy man on the top of the clock tower with swat in a circle ready to sniper… Now bring that down to an 8 year old level, and you’ve basically got the gist.

I do the mother things to calm Joseph down… Took his shirt off and soaked it in the water fountain in cleaned his face and put the cold on the back of his neck. When he has an incident he overheats. I talk to him to find out the triggers. I talk to the counselor and psychologist to find out what comes next. Mrs. X takes my husband home with Logan while I continue to talk so he can unload the groceries.

He’s uninvited from school until he goes to his therapist which is today. I informed the Psychologist at the school that I’m done with the lack of communication between them and the county therapist and that she is to talk to the therapist before Joseph’s appointment today. Period. Understand? She did. I then almost smacked her. Because she turned to my son and said, “Joseph, I’m sorry. I know that my office is your safe place. When you said you needed to talk to me, I was in the middle of something with another child and couldn’t. That will never happen again.”

They have been dealing with Joseph for 4 years!!! If he reaches out (which we’ve worked SO HARD for him to do) YOU STOP WHAT YOU’RE DOING AND HELP HIM. Otherwise you get yesterday’s situation.

All of it released the steam, and Joseph was fine, if a little drained and remorseful. My parents took him for the night to give him respite, which he needs. He’ll go to the therapist today, which he also needs.

Poe and I debriefed yesterday after everything calmed down. There were portions where he and I weren’t together (him talking Joseph down, and me talking to the counselor and psychologist) so we needed to put the whole picture together. All of a sudden, my macho former marine shaved headed tattooed husband broke down in tears. “You don’t know what it was like, Michele. I’ve never seen him like that before. I thought they were going to have to take him to a mental hospital. He’s 8! I thought I was going to have to commit my 8 year old son!”

And this is what we deal with.

We’re considering medication for anxiety. We’re considering homeschooling. We don’t know what to do. We’re going to impart our concerns to his therapist today, because I don’t know that ANYONE on his case takes it seriously enough. Oh, they take the CONSEQUENCES seriously. I don’t think they take his mental health seriously enough though. I can’t seem to get that through to them. The REASONS for the actions are what concerns me.

And of course while we deal with all this, we have Logan’s open heart surgery prosthetic extravaganza hovering over our heads like an ax. He turns 7 in May. That’s the age in which the doctors told us it would happen – but he’s holding his own so far, so it’s a wait-until-he-gets-worse game now.

I hate being a special needs parent. It hurts so very much. We deal. Of course, we deal. We have to. They’re our children, and we’re going to do everything in our power to help them grow and thrive.

There’s only so much you can do until you start questioning your every move as a parent and wondering if you’re the right person for the job.

Perspective

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Logans Missing Front Tooth

Logan's Missing Front Tooth

For all my recent cynical ramblings – nothing’s cuter than a 6 year old with a missing front tooth.

Is this a midlife crises?

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A funny thing happened to me when I went on this trip.

I think I found myself.

I know that sounds strange. But I was at a place where I didn’t feel I belonged. And some things happened that made me question myself. My actual self worth. My identity. My worthiness and significance.

You see I feel certain in my place in the afterlife. I know where I’m going. I know where my faith lies. But it has always been incredibly difficult to translate that into my fleshly life here on earth… My actual day to day who I am kind of life. There are a few definites for me that I know without question. I am to be, and want to be, a loving, honest, humble, helpful, resourceful wife to my husband. He is to be the same to me. I am to be a mother to my children, who teaches, corrects, meets earthly needs, leads, and loves, hugs, and kisses. I am to attempt to forward my relationship with God.

That’s where all the certainty ends though, you see. The other, seemingly unimportant things have thwarted me. The superficial things. Things like how I look. Things like what other people think of me.

I came to a place this weekend where I felt that I didn’t fit in, wasn’t worthy. And the thought astounded me. I didn’t used to care what others thought – and further, certainly didn’t allow my perception of their thoughts to dictate my actions and reactions. I realized this weekend that I did. And that had been going on for a very long time. I realized that I had no style, was frumpy, in ill-fitting clothes that weren’t me. I knew that my hair was going all over the place due to the weather and that it was too “big” – curly hair can do that. I was trying to make myself invisible. Because I knew that I didn’t fit in, and therefore it was best not to be noticed at all.

Back when I was comfortable in my skin, I didn’t care. I didn’t care if I looked like the “right” kind of mother. The “right” kind of Christian. The “right” kind of insert-age-here.

But this weekend I met someone, and felt like I totally hit it off with her. And this person is incredibly theologically and politically different than me. And I was completely comfortable with her. Even though I know she probably disagrees with half if not more of what I believe. But it doesn’t matter, you see. She knows I probably disagree the same amount with what she believes. And just hung out with me anyway. And chatted. And was (I hope) just as comfortable. I went to the arcade today, too. And was watching someone play a suped up version of an old school fighting game. I think it was a cross between Mortal Combat and Tekken. And I was COMFORTABLE. I was thinking – Oh! He picked Chung Li… Can he do the combos? Will he win? I would have picked Anna, myself. And I watched them finish the match. I moved on to the Girl Gamers booth. Had a conversatsion with the chick there. Told her my addiction of choice was World of Warcraft. She asked if I watched The Guild and we started talking about the lead girl in it, and how we saw her, how cool, and this chick runs a gaming show and interviewed her. She asked what level I was. I told her 80 and her eyes got big – and I was COMFORTABLE. I knew why here eyes got big. I’m a girl gamer. I had a conversation with a gentleman who acts like a total tweaker, but we started talking old school bbs, and smoked… When he saw me later, he stopped me to give me a couple of Canadian made ones, just because. And I was COMFORTABLE.

I started arguing with myself. What do I do? I’m a writer. Ok. Business owner. Ok. Wife and mom. Ok. While I could do all those things better, certainly, they don’t make me unfortable. So, check, yes, they’re me. Fine. So, what are some things I want to do? I want a pink/purple streak in my hair. Gosh, Michele, you can’t do that. You’re a mom. What will they think at school? You have graying hair. Grow up. Stop being ridiculous. But guess what? All the colors of the rainbow hair is me. I’m going to do it. Get another tattoo – same arguments. Tattoos are still me. I love the ones I already have. Repierce my eyebrow. Are you KIDDING? You’re almost 34! You go to little league!! Guess what. Still me. And I’m repiercing my eyebrow. Probably this weekend. Probably tonight.

Then I called my husband. Told him about some of the things this weekend that happened, and how they made me feel. His reply? “Michele, I love you just as much now as when we married. But when we married, you had purple hair, and more tats than me, and you knew who you were. I’d rather go back to when you knew who you were.”

And I marched upstairs, put my hair in pigtails (Michele! You’re 33 with gray hair. You can’t do that and be serious!) And went downstairs, in public. And you know what? It’s me. It’s COMFORTABLE.

I called my husband again, and told him I wanted to get another tattoo or get my eyebrow pierced. He said not to get the tattoo. Get the piercing. Why? Because he wants to help design the tattoo. But that if a phrase slays me in what I want my life motto to be, to go ahead and do it – otherwise, wait for him. And I GOT THAT.

That’s my husband – the one I am COMFORTABLE with. He gets me.

What led me astray from myself?

What led me astray from confidence in myself?

I don’t know – I don’t understand. Was it becoming a mother? Because you do lose yourself in the beginning as you alter your life in order to be responsible for a new one. Small defenseless human – of course you chart a new life. Is that when I lost my reflection? But I’m finding myself now. 8 Years later. And I think I like the me that’s coming out.

Even if you don’t.

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