This is my husband sharing a little about our journey and being parents of a son on the autism spectrum. In addition to being an amazing human, he’s also an incredibly talented magician. Since April is Autism Awareness Month, I wanted to share.
“So, FB wants me to share how my day went…I tried to do work that I lacked materials to do. Packed up and drove to Dave & Busters where the one who wanted to go refused to get out of the car once we got there then a meltdown ensued. Drove down the interstate while we were being punched, kicked and fought to keep the door from being opened while in motion. There are many more things I could describe but I’ll stop there. No one would believe it unless they were there anyway. W…e’re exhausted. Feeling hopeless. Trying to remember the last time I laughed out loud or heard my husband laugh out loud. Trying to remember the last time my daughter wanted to be with me. Trying to remember the last time I recognized myself in the mirror. Trying to remember the last time I saw the real me. Not sure if I’ll ever remember or if I’ll ever see her again. #autism #mentalillness #kickingmyass #neverthelessshepersisted”
August 11, 2017/Facebook
“The thing about #autism is this. After the last week has been filled with chaos, meltdowns, destruction, aggression and pure hopelessness, there are moments when peacefulness washes over him. I’m thankful for these moments for him and us.”
August 24, 2017/Facebook
“Today has been one filled with emotions. The first place I toured for Shane was very institutional and disappointing. It was the place that had the shortest wait list so I felt like we would have to be ok with it if it came up first.
With the looming storm, I rescheduled my tour for the second place to this afternoon. I cried the entire drive there because the first place was so dismal, but I felt like it may be our only option.
August 10, 2017/Facebook
“So, I’m putting this on blast to raise awareness for autism and mental illness. After my time at HopeWay, I’ve decided that “hiding it” and pretending it’ll go away isn’t helping anyone. If I can help just one person by reaching out, then my job is done. In the essence of full disclosure, here it is.
I’ve gone virtually 20 years without much contact with law enforcement officers. In the last several months, I’ve had three interactions with them. The first time was when our 11 year old son was at Carowinds with a therapist and had a severe meltdown. We had to go pick him up because the police officers wouldn’t let him leave with Isaiah. Thank God he is just 11 or he may have been arrested.
The second time was Tuesday when he was at the mall with his therapist and had a meltdown. Again, security called me, but allowed Harold to calm him down and let them go when it was safe for them to leave.
Today was the third time when I got stopped for speeding because I was rushing home to help when Harold called me to say that Shane had locked him out of the house during a meltdown and was on a rampage destroying everything within his reach. Harold could see what he was doing, but could not get inside. My interaction with the cops came when I got stopped for speeding because I was doing 80 mph in a 65 mph zone and trying to get home as quickly as possible. Kudos to the cop who believed me when I told him what was going on and let me go. By the time I’d gotten home, crap was still going down. The downstairs of the house looks like a bomb went off. Things are broken and strewn everywhere.
Maybe you’re reading this and wondering what a “meltdown” looks like. I have videos and pictures but would have to put a *warning for graphic content” if I posted it. I’ll do my best to describe it although anyone who hasn’t seen it cannot possible grasp the severity of it in full-on batshit crazy mode. It involves hitting, kicking, biting, punching (hence, my broken nose}. At times, we have to use a therapeutic hold to keep him from hurting himself or others (he weighs 135 lbs.). Take the most hurtful thing anyone has ever said to you and multiply by 100 (believe me when I say that it hurts more when it comes out of your kid’s mouth). Pictures and things that you love are targeted and broken. For a fleeting moment, you are afraid for yourself. But, for the entire time (30 minutes to 3 hours), you are helpless and worried sick for your child. What’s going to happen to him? What else can I do to help? Why isn’t what we’re doing helping?
I’ve yet to gather the strength or desire to pick up all the pieces from today’s incident to put it back together again. I might leave it that way for a while. I’m tired, weary and feel everything but strong. The only reason I cleaned up from last Thursday’s meltdown was because the two-story chandelier had shattered when a stool was thrown and hit it. There was glass everywhere. I had to do it for the safety of everyone.
I’ll be the first to admit that there was a time when I cared what things “looked” like. I had to have an impeccably clean house, car, etc. I had a spot for everything. So much so that friends would move things and sit back to see how long it took for me to wander over to it, move it back without saying a word. Those things no longer matter to me (and how foolish that they did). Who cares what things “look” like? It took #autism to show me that those things mean nothing.
What is the most important thing is that you have to sit and watch your child flail and literally fight for his life turning blue from hyperventilating. My family is fighting for its life and unity. Just a little air to breathe and lasting moments of fresh air. My sweet boy with the longest eyelashes of anyone I’ve ever known has a lifelong struggle in front of him if everything we’re doing doesn’t help. The kid that’s in the middle of a meltdown is not the kid we know. He becomes someone else. Our boy is the one whose laugh is contagious, whose stories are hilarious, whose snuggles at night are priceless. That’s who our boy is. But, #autism doesn’t care. It doesn’t matter what people see. It doesn’t matter what it “looks” like. It doesn’t matter that my heart is broken into a million pieces just watching it all go down and feeling helpless. It doesn’t matter. #Autism is a bitch. #neverthelessshepersisted
If you know someone who needs help or has similar struggles, please share this with them so they know they are not riding the crazy train alone.
I just scoured the internet to come up with a synonym for “what the hell just happened.” I was thinking “gobsmacked” but the definition doesn’t exactly describe how I felt today. Shocked? Aghast? Bewildered? Dumbfounded? No, THUNDERSTRUCK seems to be the word I’m looking for. You know, one of those days where you’re minding your own business, listening to the bluebirds sing gloriously daydreaming about your everything-is-coming-up-roses life, all of the obstacles you’ve overcome and never have to jump again and BAM! Right smack in the face, it hits you…a giant hurricane in the middle of Game Stop.
After months of parental smooth sailing and having the audacity to think we were in the clear, we were caught in the eye of the storm for what seemed like hours complete with kangaroo kicking, blood curdling screaming, sailor trash talking, good old fashioned melting down…all seemingly over a giant Super Mario statue. Super Mario? Really? I’ll be the first to admit that I once thought Mario and Luigi with affection but now they can both kiss my backside.
You see, one of the challenges of being the parent of a special needs child is that you find yourself walking on eggshells a lot of the time. If you’re not in the middle of a storm, you are waiting for a storm or if you feel a tiny raindrop, you worry that you’re on the verge of a major hurricane. But, every now and then you allow yourself to forget about the storms, damaging winds, lightning bolts, floods of emotions. You forget about it because when things are fluffy chicks, unicorns and rainbows, the mind has a way of pushing all of those memories away. I think it’s part of survival. I compare it to childbirth. If moms remember the pain associated with it, no one would have more than one child and the world as we know it would cease to exist.
When I figure out how to walk the fine line between sunshine (progress) and storms (lunacy), I will have found the secret to the parenting and the universe. And, although it may feel like I’m drowning and in total darkness right now, I know the rainbow will show it’s face eventually. How do I know this? Because a little orphan once sang this song about the sun coming out tomorrow and betting your bottom dollar and all the other crap that goes along with singing bluebirds taking a dump on your head before they sit happily on your shoulder. It’s a hard-knock life, you say? Bring it.
Every time I come to this blog and see that it’s been so long since I’ve written anything, it says several things to me. It could be that I’ve been so far into the depths of despair (read: self-pity) that I couldn’t see the light, it could mean that I’ve been lazy (highly possible) or it could mean that I’ve been basking in the light.
This time last year was incredibly challenging for Shane. We were still dealing with massive meltdowns and major defiance. I’m not talking temper tantrums like most parents of typical children experience. I’m talking holes in the wall, name calling, etc…Verucca Salt on steroids. It’s not pretty. And, although it has little to do with parenting skills and a lot to do with PDD-NOS and ADHD, it just feels like the lack of parenting skills is what’s put you in that place to begin with. It’s not. I’m slowly getting that. The behavior at school was extreme. Sure, some of the incidents were funny looking back like the time he pulled the fire alarm and the fire department came. Then, there was the time he pulled the fire extinguisher off the wall and attempted to activate it. Not funny were the broken window, the hitting, kicking and name calling. Everyone was struggling but the one struggling the most was Shane…and believe me when I say that few things are as painful as watching your kid in a downward spiral and there isn’t a damn thing you can do about it other than what you’re doing. I cried daily…most days more than once and many times cried myself to sleep waking with my eyes glued shut (not pretty, trust me). I wasn’t crying so much for me…but for him.
Although I’m an atheist, I’m convinced there are angels on Earth. Virtual strangers who are put here to add beauty to us all. Cyzner Institute is full of them. But, there’s one in particular who has made a difference. He came to us in the form of a big teddy bear of a guy in argyle sweater vests, nice shoes, a shiny head and talent beyond belief. He was such a stark contrast to the rest of the staff that I wondered how he would fit in much like my little monkey boy. Dr. Lisa and the staff introduced him to Shane and he accepted the challenge for one-on-one therapy with him. And, his name happens to be Shane, too…Mr. Shane. From the moment I met him, I felt a sense of relief. I don’t know why. Maybe his aura looked yellow to me. But, from the beginning I knew that he “got” Shane, understood and appreciated him. I could tell that he loved him right away. And, I could tell that it was his mission to see Shane succeed. He once told me that he’s Shane’s conscience…the angel on one shoulder, devil on the other. So, it’s with that angel that we’ve seen the power of therapy and love. He has embraced the wonderful things about Shane and somehow managed to handle the challenges with poise and grace. But, most importantly to teach Shane to handle the challenges on his own giving him strength, control and independence. He is the Creative Director at Cyzner and is an incredibly talented singer, dancer, musician, artist. He sees Shane’s creativity and imagination and figured out how to use it and nurse it to help Shane succeed. It doesn’t hurt that he likes Rocky Horror Picture Show and has the sense of humor that matches our family. Although he spends a lot of time with Shane, I can also see the impact he’s had on other kids there. Priceless!
Sitting back now and thinking about it all, I think I haven’t blogged in so long because I’ve been basking in the light. I realize there’s still plenty of tunnel left but Shane is off of all medication for ADHD and is only on a low dose of medication for seizures and migraines and Omega supplements. Doctor’s visits are nearly null. Any meltdowns or “issues” are over in minutes and are manageable. We can see ALL the beauty in our boy…he’s compassionate, loving, caring, empathetic with everyone around him, helpful, sweet as molasses, has an infectious laugh, sloppy kisses and a wicked sense of humor (he still gives anaconda hugs to strangers which is a little scary but there are worse things). I will be honest with you and say that there are times when I still feel sad for the challenges in his life and ours…but the joy in our lives far outweighs the sadness. Keep flying, monkey! Mommy, Daddy, Mr. Shane and all the angels are behind you…and are as proud as proud can be.