Monthly Archives: September 2017

#noalternateroute

As we continue to pack and get ready to leave for Texas, my heart continues to break. So many conflicting emotions. I don’t even know which way to go. I suspect I will run on autopilot for the next week for the most part. I have no clue what to do or how to do this, but I know that we have each other. There’s no manual for autism. There’s no manual for having to take your child 1200 miles away to get them the help they desperately need and deserve. There’s no manual for healing hearts that have been broken so many times pieces are missing. Yet, we carry on. Desperate for hope. Desperate for help. Desperate for peace. Desperate for change. We owe that much to him. We owe that much to ourselves and our family.

“Roads may be sometimes rough. But, with you, no matter how rough the road is, I’ll take no alternate route. Because together we can make it through. No matter how tough the going, I’ll keep on going. Because with you, my loves, the journey will never be boring.”-T.O.Y.

#neverthelesstheypersisted #autismawareness #searchingforpeace

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I Would Walk 1200 Miles

As we prepare for our 1200 mile journey to Texas next week, I feel like we have a clear plan for the immediate future. What happens after that remains to be seen. Not gonna lie. It scares the crap out of me. Hoping San Marcos teaches Monkey skills necessary to function at a “real” school so he can have more interaction with peers, gain confidence. And I hope we learn how to be better parents and guides for him. He desperately wants to feel “normal.” I don’t know what that means, but he has “it” in his head.

I have mixed feelings about him being away. As caregivers, we need a break to regroup, repair and become a stronger unit. As parents, the thought of a long separation is heartbreaking. But, I’m taking comfort in peace. For us and for him. He wants peace. He needs peace. He deserves peace.

#kickingmyass

August 19/Facebook

“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. We’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”

 

Where Did I Go?

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It’s been years since I’ve blogged here. I always say that when I go back to read about our journey from the beginning. I have to start writing again. So much has happened. So much has changed. I’ve used Facebook to “blog” lately. I’m getting back to basics by starting here again. I’m going to go through the posts that describe where we are now and how we got here. Where did I go? That’s a good place to start and explains the long absence better than anything.

July 1, 2017/Facebook:

“After almost a month of being off of Facebook, I’ve decided to share the reason for my absence in hopes that it may help someone else who’s struggling. Not the most glamorous thing, but I’m trying to remove the stigma of mental illness.

On June 6, I entered a residential treatment center at HopeWay Foundation in Charlotte to help get my depression and anxiety under control. Changes in medication and therapy offered no relief. I was at a point where I didn’t care if I woke up the next morning even though I had absolutely everything to live for. Each night, I wondered how many Ativan tablets I could take and still wake up. I got up to six at a time. The thought of my family living without me was extremely painful and to be honest was what kept me alive. I didn’t want to leave a trail of devastation. I want to see Shane grow up and find friends, go to college, and find his soulmate and build a wonderful life on his own. I want to see Jessica get married to someone who tells her everyday how beautiful she is and makes her feel as special as Scott makes me feel. I want to celebrate 20 years of marriage to Scott.

On the outside to many, I had it all including confidence. It was a façade. Only a few knew the real struggles I dealt with daily. Shane’s increased aggressive behavior and the mounting pressure of finding a more intensive program for him among other “life” things were pretty much the debilitating blow. For the few months prior to my entering treatment, we’d scoured the country for a residential treatment center/therapeutic boarding school that will help our boy learn to manage his impulse control and anger. The last six months have been filled with physical aggression toward others and major property destruction. We’ve been through six televisions in little more than a year among other things. Watching one of your babies spiraling out of control is one of the most painful things I’ve experienced in life. Each day, he loses a tiny piece of himself and has asked for more help. He’s been getting in excess of 40 hours/week of ABA therapy since he was five. Although it’s helped in many ways, it has not in others. We’re on the waitlist for a program in Greenville, SC and expect for him to start in early fall. It’s a residential program for 9-12 months. We will be finding a place in Greenville to live for 3-4 days/week. He will get to spend every weekend with us, but will be at the facility otherwise. That is going to be the longest year I’ve ever had.

As I continue my journey to learn coping strategies and skills to manage my depression, I will be back home next week, but will remain in an outpatient setting at HopeWay in a three day/week program until I feel strong enough to let go of the constant support. The program has been extremely beneficial and I’m kicking myself for waiting so long to ask for help.

I share this with you guys to help you understand depression and other mental illnesses. It’s indiscriminate. It doesn’t matter how much money you have or what kind of house you live in. It doesn’t matter what kind of car you drive (even though a convertible is good therapy…so is a motorcycle if I had one 😀). It doesn’t matter how much your family loves and supports you. It doesn’t matter if you’re a classic overachiever at work. It doesn’t matter if you pull off the most awesome parties. It doesn’t matter if you have the opportunity to travel. It doesn’t matter how many random acts of kindness you do (even though that offers relief for a while). It doesn’t matter if you’re a size 8 or 14. It doesn’t matter. It doesn’t care.

Scott has managed to keep things between the lines in my absence. I know it’s been difficult and I am forever grateful. Shane has managed as well as an 11 year old can and missed his mommy. Jessica has seen her rock falter and let her know that I’m not as strong as I pretend to be. Showing everyone that you’re not the strong confident person you pretend to be is not really something I revel in doing.

Please take what I’ve posted to heart. If you know someone you think may be struggling, talk to them about it. Don’t ignore it. Don’t be afraid to ask questions. I’m an open book. I’ll be happy to share more details of my experience to anyone who wants to know more for personal reasons. Feel free to share with anyone my words may help.

My mantra and reminder of Towanda’s strength is pounded into my head daily…SHE BELIEVED SHE COULD SO SHE DID!”
#depression #mentalillness #neverthelessshepersisted #towanda

#autismcankissmyass

August 27, 2017/Facebook

“We’ve spent the better part of the day in combat mode…went to bed in combat mode. Woke up in it. It’s like living in a constant state of war. You’re either waiting for bombs to go off or you’re cleaning up after a bombing. It gets old. We’re exhausted. And angry. And bitter. I cry non-stop and yell. I’m a fucking basket case. We’ve seen property destruction and personal injury (never to the one causing the destruction) seemingly over nothing. But it’s obviously something to him. It’s an interesting experiment, really, to see how long one can last without losing their mind completely. We desperately need help. I’m anxiously awaiting being able to communicate with San Marcos to make sure they made it through the storm without having to interrupt their program. Hoping the universe is taking care of them for selfish reasons. We can’t do this much longer.

I’m not posting this for sympathy or prayers. I want neither. I’m posting it to increase awareness. If you know someone who’s in a position of being a caregiver, reach out to them. They probably need help, too. They’re probably tired of wearing the “everything is awesome” mask. #autismcankissmyass#imtryingtopersist#ihatethefuckingworldtoday

Never Did Believe in Miracles

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.

Then, the kindness of the universe from yesterday continued. I fell in love with the second place the minute I saw it. When I walked in, I was greeted by their service dog, Tripp (Shane’s biological brother’s name is Tripp). The school and people I met were amazing. The Director of Admissions shared tears and hugs with me as I told stories of Shane and our family (and she looks a little like Liza Minelli). The greatest thing about all of this is that they expect to have a spot available within two weeks!
Getting ready to leave, I sat in my little roller skate of a car getting the GPS situated and changed the radio station. It stopped on a station called “The Bat” (my daughter’s nickname for me). The song playing was Fleetwood Mac’s (one of my favorite bands ever) “You Make Loving Fun.” It was at the part “I never did believe in miracles but I’ve a feeling it’s time to try.”
I’m an atheist. I do not believe in God for many reasons. I do not care to have a religious debate on FB (or try to be convinced that my logic is flawed) and understand that people believe what they need to in order to make sense of this life. I’m happy that people have things to believe in that bring comfort to them.
Having said all of that, I am at finally at peace with decisions about how to help our sweet boy. Yes, there have been many coincidences. But, “miracles” are wherever you’re looking for them. It’s been a long time since I’ve felt at peace, desperately searching for it. I’ve found it in the last 48 hours starting with Nathan followed by Tripp, Liza Minelli, The Bat, Fleetwood Mac and finally with a shortened waitlist at San Marcos. All of these things may have gone unnoticed if I wasn’t looking for peace. Maybe that’s what miracles are…the universe’s way of saying everything is going to be ok.
When I got back to the hotel, Scott told me that Shane said he’s nervous about starting a new school and being away from us, but says he’s ready to go and knows he needs help…”because I remember when I use to sit in Mommy’s lap when she hugged me and cried happy tears, but now she only cries sad tears.”
My heart is broken. I’m broken. Our family is broken. Our baby boy is broken. I can only hope that after today, Monkey feels a little more at peace, too, now that we have a plan and know where we’re going.
“I never did believe in miracles but I’ve a feeling it’s time to try. I never did believe in magic but I’m beginning to wonder why.”

Never Forget

August 23, 2017/Facebook

“I flew to Austin, TX today to tour two residential treatment centers that Shane is on the wait list for. I sat next to a guy named Nathan on the flight from Chicago. I immediately recognized the body language, fidgeting, rocking.

Nathan is 23 and is on the autism spectrum. I’m not one to believe “everything happens for a reason” as I’ve been told by others at times (that’s bullshit as there’s “no reason” for autism and other world problems). But, maybe the universe knew the heartache  I was feeling and aligned the stars for me to meet Nathan.

He shared his story with me during the entire flight. He was diagnosed with high functioning autism at two. He had been in and out of treatment facilities from the age of 10 to 15. At 23, he attends a community college near Washington, DC majoring in Psychology. He travels to synagogues and is a guest speaker/autism advocate. He promised to email an article to me that he wrote recently.

When I asked him what he tells people about autism when he meets them, he said, “Don’t judge me based on what you can do, but what I can do. Appreciate our differences, not everyone is supposed to be the same. Don’t just stare at me, come over and speak to me. And, never forget that even if I’m a little quirky, I’m a person and I have feelings, too.”

Whatever it took for the stars to align for me to meet Nathan, I’m grateful for the time I spent with him and the opportunity to understand life from his perspective. One thing he said struck a chord with me…”never forget.” At night when tucking Shane in (even after a horrific day), I always say, “Always remember and never forget that Mommy will always love you no matter what.”

Extending thanks to Nathan and to the universe for being gentle with me today on our journey to find help for our boy. I need all the help I can get. #autism#neverforget#neverthelesstheypersisted

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#neverthelessshepersisted

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.