Special Needs Parenting Sucks

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.