The secrets we keep and the wisdom we share.

Last night I saw this article:
35 Secrets of being a special needs parent. It is on TheMighty.com website.

I decided to pick some of my favorites and added my own comments.

“I cry. All the time. Joy, frustration, exhaustion, successes, good days, bad days — I cry for all of them.” — I honestly don’t think there has been one day in the past four years that I haven’t cried.

“You’ll need a sense of humor… Fast!” — The only way I’d ever survive.

“It’s a lot harder than it looks. It infiltrates every crevice of your life and affects every minute of every hour of every day. It’s right there when you wake up in the morning and doesn’t stop challenging you until bedtime (and doesn’t stop even then).” — So very true. It consumes me. I try to have the most normal life possible for me, my husband and my two “typical” kids, but I never ever can forget how our life is ultimately different.

“You are not weak when you get angry and upset.” — I have to vent and rant and rave, to stay sane.

“You know your kid best. Don’t be concerned with what others say. Trust your gut.” — especially with his family on his Dad’s side

“You’re now in a secret world. You’ll see things you never imagined: ignorance, rudeness and discrimination. But you’ll also witness so many everyday miracles, and you’ll know it. You won’t think a milestone is just a milestone, you’ll know it’s a miracle and be present in that moment. You’ll treasure things most wouldn’t think twice about. You’ll become an advocate, an educator, a specialist and a therapist, but most of all, you’ll be a Mom to the most wonderful child.” — couldn’t of said it better.

“It’s lonely. But when you meet someone who gets it, it’s transforming.”— I can’t even begin to tell you how wonderful support groups are….

“There is consistency in routines.” — Not just for Cameron, but for me as well. It gives me a sense of calm, that can help me deal with Cameron so much better.

“I’ve found that optimism is exhausting and realism is a source of comfort.” — I remember being such an optimistic person growing up and in my younger days. Now I realize that being realistic about things doesn’t give you such a let down.

“It’s about progress, not perfection.” — Even the slightest bit of progress makes me feel like he is getting somewhere, and I always remember that every little step forward, might not be there tomorrow. Enjoy it while you can.

“Some things may never get better, but your ability to deal with that problem will improve.” — I hold onto this advice that someday this will come true…lol

“You have to also take care of yourself.” — This is a quote from the website, but to be honest, I credit this tidbit of information to my Mother-In-Law, who has to be the coolest woman I have ever met. She sat me down a long time ago and told me that I am worthless to Cameron, if I do not take care of myself. It took me a couple years, but I found out yoga does wonders for my mental health and my physical health, and THAT allows me to deal with Cameron’s meltdowns and temper tantrums in a better state of mind.

I know this post really doesn’t have an agenda, but hopefully someone will read this and get a better grasp of what special needs parents go through. Or maybe a special needs parent will finally feel understood. Or maybe even a special needs sibling will read this and know that they have the same feelings as their parents sometimes and that could bring them closer together.

Because you just never know who your words could touch.

Because when you have a child with ASD/Mood Disorders, there is no answer to the question, “Why?”

IF YOU ARE NOT PREPARED TO LISTEN TO MY UNAPOLOGETIC, EVERYDAY LIFE IN AN UNFILTERED, NON-EXAGGERATED AND COMPLETELY HONEST WAY, THEN DO NOT READ THIS POST. AT ALL. WHAT-SO-EVER.

YOU HAVE BEEN WARNED.

I am feel like I am a complete failure.

My child. My Cameron. He has completely gone out of his proverbial mind. And I mean completely. He is having auditory hallucinations again (In other words, he hears voices in his head). He is hitting and kicking and spitting and punching and telling everyone he hates them and he hates himself and he is stupid and…..and I don’t know what to do for him.

And my head keeps telling me, I am letting him down.

My mind tells me I should be able to help him because that’s my job. I should know what to do in order to calm him down and keep him focused. I should know what call to make when things get too out of hand. When he is going too far and putting everyone’s safety at risk. Why? Because I am his Mother. I know him better then anyone. He is my own flesh and blood.

But I don’t know. I don’t know what is going through his head, or why it is there to begin with. I don’t know what happened to make him have a meltdown. I don’t know how to make it better, because what worked yesterday, does not work today. It’s making it worse. I don’t know what call to make, because no matter what I do, he will resent me for it. And worse, I will resent myself. I will take full responsibility for having to possibly hospitalize my 9 year old child, because I failed. I failed to make it better. I failed to stop it.

Now let me stop here and make one thing abundantly clear: I know I haven’t failed him. I do what I have to do, in order to keep him safe, and to keep my other children and family members safe as well. But that doesn’t stop any of us, for feeling like we failed him. And he feels that way more then anyone. Because one time, I did have to leave him in the care of strangers and walk away. I could only see him for an hour each day, like visiting a prisoner in jail. And that is exactly what it felt like to Cameron. Jail. How can I do that to him again?

Because there comes a time when no matter what you do, you can’t fix it. No amount of medication will keep him safe. There are no words that will make everything be ok, and no matter how long you just hold and hug him, it won’t be alright. There won’t be an automatic cool down, he won’t feel better after a 90 minute meltdown, and the relief you feel when he starts thinking about his actions, won’t come.

Because mental health issues are almost always unpredictable and sometimes dangerous.  Because escalations like this, in my world, are common. Because when you have a child on the autism spectrum, with a mood disorder as well, these days happen on a daily basis. And you always ask, “Why?”.

Strangers, who will read this post, or maybe see Cameron on the street having a meltdown, who don’t know any better, will try to give “helpful” advice. Like, “You know, you should discipline him more often”, or “You shouldn’t be raising a spoiled brat. That’s whats wrong with the world today.” By the way, I totally love those people. SO much so, I have been known to invite them to come to my home. They quickly decline. Go figure.

Family members might run away in fear of Cameron’s meltdowns, or even worse, try yelling at him. Don’t get me wrong, I have been known to yell at Cameron. I am not perfect by any means. But trying to have a yelling match with a 9 year old in a psychotic episode is not the way to go. Trust me on that one. Someday our families will understand what our children go through and apologize profusely. Maybe. Until that day, just realize that we are all human. Not everyone is in the position where they HAVE to understand.

As you can tell, I have seemingly switched gears. As though you may possibly have a small understanding of what I go through. Like we are in the same fight together. Well, we might be. There are a LOT of kids out there that suffer from serious mental health issues, not to mention the amount of adults that go through it as well. Some are diagnosed, some are not. Regardless of the circumstances around your life, I hope that you will at least understand why some parents always have that tired and glazed over, unfeeling look as their child screams down the aisle way. Or why these parents never have time to go out because they can’t find a sitter to watch their kids.

And for you. The parents or individuals that do have a similar life as the one I lead: I feel your pain. Your not alone. And even though others now know “why” certain things happen to friends or family or loved ones, we can at least ask a different “why” together. Our answer may never come.

But at least we care enough to ask it.

So after the holidays, my son will more then likely be going to a treatment facility to have his medication monitored,  and possibly changed, under direct supervision. To learn more coping skills and be evaluated extensively, to try and learn more about his disorders and mood swings, to try and help him. It will suck. A lot. I will be a complete and total wreck and my own mental health disorders will be at risk of flaring up and weighing me down. But I will do whats right for my son and I will be there for him and with him, every step of the way. My other children will question why I am not there for them 100% of their lives and they will probably resent me and/or their brother for “coming first” for a bit more then usual. But someday they will all hopefully understand why I do the things I am doing. And when that day comes, it will all be ok. And thats what I say to all of you now.

It will all be ok.