Category Archives: Depression

Sometimes the Stars Do Align

Sometimes the stars do align, if only for a moment. We meet people we’re meant to meet at a time when we need it most. While I’m leery of putting things out to the universe sometimes for fear of them being slapped down before they make it off the ground, efforts made over the last few months seem be to coming to fruition. It’s scary to put it out there, but I’m crossing my fingers that I won’t jinx myself.

With regard to our battle with the school system, we have received confirmation that they’ve finally signed the contract committing to pay the annual tuition ($72,000) at Shane’s school in Tennessee. Although we haven’t gotten reimbursement back yet for the tuition we’ve paid for January and February, we’ve been assured that a purchase order has been submitted and we’ll get a refund soon.

Although Shane continues to struggle, he’s in the best place he’s been mentally (and physically) that he’s been in in a very long time. Change is always difficult for him, but he’s doing much better than anticipated with settling in. On days when we are sad and missing him to the inth degree, we do our best to perform a random act of kindness. We always preface it with our story about Shane and say that when we’re sad, it lifts our hearts to do something nice for someone. We can always tell when someone is hurting. It’s almost always a waitress with her own story that reminds us that things could always be much worse and we are thankful to those who take the time to share…the universe’s way of showing us that people can keep going long after most would’ve given up.

Advocacy and community service are near and dear to my heart. I want everyone to have access to care and an education. I want inclusion and acceptance for those who were born to stand out. Last week, I graduated from the South Carolina Developmental Disabilities Council’s Partners in Policymaking program. In January, I joined this Advisory Board for Best Buddies of North Carolina and I joined the Board of Directors for a charter school being built in our area. Two weeks ago, I was encouraged to apply to be on the Parent Advisory Board for the South Carolina Department of Education. I don’t know how long that process takes, but I would be thrilled to have the opportunity to be on the front lines with the government agency that directly makes decisions for programs benefiting those with disabilities fighting for those who need a Mama Llama in their corner.

After working with Legacy Studios for four seasons, I left last July. In January, I met with the owner who seems to share my enthusiasm for team building, positive changes, project management and genuinely coaching and mentoring others in the industry of school photography. They were kind enough to create a pilot position for me to help implement processes company-wide with the introduction of new software coming up in our busy season for senior photos. I’ve worked really hard to make a difference and to do my best. I’ve taken on the parts of Legacy that I love and I am thrilled with long term plans that have come to light that will eventually land me in my dream position in due time.

Someone once said, “If you don’t ask for something, the answer is always NO.” I never asked before. I thought I could do everything on my own. But, I’m asking now. I’m asking the universe to take care of our boy. I’m asking the universe to watch over our beautiful daughter and her boyfriend as they continue their adventures as traveling nurses. I’m asking the universe to guide me to organizations and positions that will appreciate my passionate pleas for fairness and equality. I’m asking that my husband continues his unwavering support and continues to tell me I’m beautiful everyday. We’re a great team. I’ve told the universe what I’ve always wanted to do professionally and hope that the stars will align to allow me to be successful and to help other grow professionally and personally. I feel worthy, ready and deserving of the next level in all aspects of my life. I’ve put in the work and am ready. Bring it.

The System is Broken

With Shane in Utah, we’ve been scrambling to put together a plan to begin after his discharge on December 20. We are thrilled that he’ll get to be home for Christmas provided all continues to go well.

We had a meeting with the team at our local school last Wednesday. They put together an amended IEP (Individualized Education Program) which is a document that dictates accommodations that must be made for a student with a disability. After Shane only being allowed to attend school for 2.5 hours per day since August, the IEP team agreed that they cannot adequately provide him with the services he needs locally and they recommended placement outside of the district in a more restrictive environment. With that written into the IEP, it means the district is responsible for the tuition at a facility that can accommodate him and his needs. After all, it’s their recommendation.

We knew that the IEP team was leaning toward an outside placement as it had been discussed at prior meetings and had already hired an educational consultant to find a program for Shane. After many applications, inquiries and hours of research, he was accepted into the program at King’s Daughters in Tennessee. There are zero programs in the Carolinas to meet his needs and those of others like him. I visited King’s Daughters on Tuesday. It’s an amazing program for kids on the spectrum and those with developmental and intellectual disabilities. We are excited about the opportunities for him with regard to his continuing care and education. We felt relief knowing we’d found a promising solution.

Yesterday, we were informed that the local district is only willing to provide the portion of costs attributed to the day school which is $32,700. The total tuition for the residential program on an annual basis is $72,700. Yes, it’s an exorbitant amount of money and out of reach for most families. Believe it or not, most schools that can service a child with Shane’s needs range from $96,000-$150,000 per year so $72,000 seems like a bargain.

So, that presents an interesting quandary. The district has said they CAN’T provide Shane with an adequate education and that we should seek placement outside of the district. After hiring an educational consultant, we found a program that will meet his needs as directed by the district. Now, the district only wants to pay less than half after we were told they would pay for placement. I have many questions:

1) How does the district think he can attend the day program without living there? It’s 6.5 hours from home. The nature of the programs is designed to educate 24/7.

2) With the median income in Lancaster County being $46,800, how many families are there in need of these services that can afford to take the district’s contribution of $32,700 and write a check for the additional $40,000 annually when they are refusing services locally?

3) Is their recommendation simply a way of ridding the school district of the responsibility to provide a child with disabilities access to an education hoping that we’ll just settle for homeschooling him?

4) Other districts are funding 100% of the tuition at King’s Daughters for students so why can’t our district?

We’ve never sought public education for him. He was in private school until age 9 and homeschooled with tutors for the last three years. As a result of the determination of the district, we’ve contacted an attorney and will fight for our child’s education and that of other families of children with special needs. It’s a vicious cycle. The child doesn’t receive an adequate education, has no way of even remotely supporting themselves independently and ends up on public support as an adult.

With the loss of an education comes the loss of self-determination and the sense of fulfillment and purpose setting them up for a lifelong struggle, poverty and depression. We owe our children more. We owe families more. And, we owe society and the future generations more.

Recent studies have shown that the incidence of autism is now one in forty. It was estimated at one in 58 just two years ago. Picture that. One in forty kids is on the autism spectrum. This is an epidemic. The world must slow down and take a look at the long-term effects of not serving this community to the maximum benefit. The system is broken. We must fix it.

Positive…That the Next Few Months are Going to Suck

Someone told me tonight that I’m too negative on Facebook and need to be more positive. I feel like I post plenty of positive things, but I’m at a place in my life that seems to be one shit storm after another. I’m angry at the universe. And, while it’s peachy to pretend life is roses, it’s not always and I am honest to a fault. Yes, I have plenty to be thankful for. But, I also have plenty to be sad about as do many people.

I am the mom of a beautiful 12 year old boy who is 3,000 miles away from home receiving treatment for mental illness. They don’t accept insurance. It’s $12,750 every two weeks. He’s been there three weeks and will be there for two more. He will get to come home for Christmas, then will be leaving again for a therapeutic boarding school in Tennessee on January 2. It is expected that he will finish out his education there. Six long years away from home. Struggling without his mom to gently rub his hair while he falls asleep. Or his dad to play video games and tell silly stories. Or to read a bedtime story to him. Or to watch cat videos with. No kisses daily. No hearing his laughter except during our once per week phone call.

Being in a situation where you abruptly feel like you will NEVER get to be the traditional parent again is heartbreaking. But, we’ve tried so hard to set him up for success at home and in the local school. It’s not going to work. He needs more intensive treatment to teach him to learn to navigate a world not built for him. I’m not ready to tell my boy goodbye and slip into the routine of seeing him once per month with three week-long breaks at home throughout the year. It’s like sending a kid away for college except that you have time to prepare for college because you know it’s coming. We are not prepared. It is not what we’ve envisioned for our family and not remotely what we’ve hoped for. I’m sad. I feel like I’m losing my boy and fear that we will lose the love and close relationship we’ve shared for years. He’s sad, but understands that he needs help. I’m angry.

I take plenty of joy in the beautiful things in my life. And, everyday, go out of my way to perform a good deed to spread kindness. Sometimes, I do this for selfish reasons because my heart is breaking and the act of kindness mends it if only for a minute. But, it’d be nice for kindness to come our way during times of heartache, too. It seldom does. Maybe it’s because we put up a strong united front. We have a close knit family and for that I am beyond grateful.

I don’t expect people to know what’s going on and reach out to us. There are a few close friends who are aware of what’s really going on. So, forgive me for being negative. Or don’t. Feel free to unfollow or unfriend me. Or don’t. I’m not going to apologize. Sharing is my therapy. And, it raises awareness for autism, mental health, healthcare and public education.

If you or someone you know share the same struggles, reach out. We can be negative together. And share a bottle of wine or ten.

HOPEless

When speaking of bipolar, someone once said that somewhere between love and hate lies confusion, misunderstanding and desperate hope. I get it. It’s debilitating to see a loved one in the throes of depression, mania and all that goes with it. The confusion. The desperation.

It is with a heavy heart that we have decided it’s time once again to seek a more intensive environment for Shane to try to get a grasp on the bipolar. After weeks of rapid cycling between depression and mania, we feel we have no choice. We’ll be throwing everything together and leaving for Salt Lake City tomorrow for treatment.

If you’re reading this and have been touched personally by severe mental illness, I’m sorry. I’m sorry that you have no doubt cried millions of tears feeling helpless as you or your loved one flails. I’m sorry that you’ve ever felt as helpless as I do now. I’m sorry if you’ve ever needed someone who understands and I wasn’t there. I’m sorry that you’ve ever felt as hopeless as I do now.

Hopeless. That’s the worst one. The guilt I feel because I’m so hopeless right now is excruciating. I recently saw a video of an autism mom who talked about the “last time.” The last time she thought things were going to be ok. I get it. I no longer think things will ever be “normal” whatever that is even though I’ve tightly held onto it. Until now. I’m not giving up, but I obviously need to adjust my vision of the future. I’m exhausted. My husband is exhausted. And, as exhausted as we are, I know our boy is even more so. He’s sad to the core. Sad because we’re sad and there’s not a damn thing he can do about it. Or we can do about it. Flailing.

I feel like we’ve tried everything and yet, here we are. Again. At the crossroad of risking financial ruin to get help for our kid because the healthcare system is broken…even with our Cadillac insurance plan. There aren’t many mental health facilities that accept insurance so they expect payment in advance in hopes that insurance will reimburse a portion of the expense to the family. If you’ve ever asked yourself why suicide and gun violence is on the rise, please don’t blame the parents. Blame the system. I guarantee you most parents have begged for help. They haven’t gotten it. It’s not there without a deep enough pocket to travel across the country and pay in excess of $25,000 for just one month. The fact that there are no facilities in a city as big as ours is a disgrace. The fact that mental health facilities don’t accept insurance is a disgrace.

I don’t know who came up with the notion that love conquers all. That’s bullshit. No child is loved more than our boy and we can’t overcome mental illness. All we can do is learn to manage and do our best to give him the tools he’ll need for the rest of his life. It’s not fair. Life is not fair.

I genuinely yearn to find hope again. I know the next few days are going to be some of the most difficult we’ll face as a family. All of us feeling our own sense of failure based on what we feel is our fault. If only we would’ve done this or that. If only we wouldn’t have done this or that. If only we’d handled it differently yesterday, last week, last month, today. If only…

I’ve Lost Myself

I feel like I’ve lost myself. My purpose. My what. My why. I don’t know the exact moment it happened, but it’s been slowly vanishing over the past year. Life has a way of reminding you that you’re not in control no matter how much you think you are. You’re not. But, kudos if you’ve read enough Anthony Robbins books to make you think you are.

I lost a friend to suicide in November. I haven’t really dealt with it or written about it in detail. I knew she was suicidal, but was so wrapped up in my own struggles that I couldn’t stop her or help her. We had lunch together and less than ten days later, she was gone. She wouldn’t accept a cat as a gift (my attempt as lessening her loneliness) because she “didn’t want it to starve” when she died. She had recently moved and wouldn’t let me help her unpack her boxes because she wanted it to “be easy for people to get her things together” after she died. She had dealt with debilitating depression for years and had sunken every dime she had into getting treatment. She could no longer work and was running out of money. She was alone. She was in pain. Her heart broken beyond mending. But, that day at lunch? She was smiling. She was sad, but she was smiling. I can only imagine it’s because she knew her pain would be over soon. She made a plan and stuck with it.

Part of me is envious of her courage. She was tired and knew she couldn’t continue living the way she was. That control thing I mentioned? SHE was in control. She’s at peace now, free of the horrendous visions of abuse she endured as a child and continued in her adult life. Part of me is really mad at her for selfish reasons. Did she think about what it would do to her friends (who shared depression and mental illness)? Did she care? She didn’t owe us anything, but still I wonder. I don’t know how she killed herself, but I imagine she overdosed and drifted off to sleep. I don’t know how long it took before someone found her. I hope she wasn’t alone for long. I imagine her beautiful blonde hair being coiffed perfectly and her lipstick applied as precisely as it could be. Did she wear colors other than the black or grey muted tones she usually wore? I’m glad she didn’t take the cat.

I write about this because I am tired and feel like I’ve been treading water for a long time. I feel like I know where she was in her journey. So tired. I struggle to find joy many days. I’ve put so much into getting Shane the help he needs that I’ve let my own needs go. I’ve stopped working out, gained 30 lbs with no desire to do anything about it. My own treatment-resistant depression needs more intensive treatment, but I can’t pursue it because the next step is TMS or experimental ketamine, both of which require a daily time (and significant financial) commitment for six to eight weeks. So, I’ll continue to struggle until Shane is stable and ready for the next step of his journey and we make it back home and to real life. That’s what we do for those we love immensely.

While away at treatment, Shane has grown leaps and bounds in many areas. But, some of the same bad habits continue to rear their ugly head. Aggression, defiance, “I hate you” when things don’t go his way. We moved here thinking it would make his transition from discharge easier. It’s only been a week, but so far, his behavior on the unit after a home visit is reminiscent of when he first got here. I hope it all falls into place as I doubt myself in my desperate attempt to be in control and lining everything up. See? I thought I was in control. I’m not. Neither are you. Remember?

There have been many moments where I’ve wondered if I would make it through the end of the day. I am no longer myself and know that the journey back will not be an easy one. Do I even remember who I was? Was that person so great, after all? Do I want to be her again (whomever “she” was)? I’ve made many mistakes in the past. I do have regrets (those who say they don’t are full of it). I didn’t do enough to help Pam feel loved and needed among many others. But maybe those mistakes have put me in the right direction of where I’m meant to go. I will die trying to do everything I can to help Shane and our family.

Finding yourself is not an easy journey. I don’t suppose it should be. I’ve been trying to find my purpose my entire life. I find it briefly then it slips away. I don’t suppose that should be easy, either, in an ever-changing world. I’ll delve into volunteering at Shane’s new school and being an advocate for kids who have no one to speak for them. Or, find a new job or a meaningful charity. Or yoga. Or tennis. Or, maybe start running again.

But, my why? I guess that’s easy. It’s seeing my monkey boy successfully finding his place in the world and going to school like a “real boy.” It’s seeing all of the adventures my beautiful daughter and John experience during their time as traveling nurses. It’s being here to give to and receive the unconditional love my dear sweet husband has to offer (even though our cramped quarters are testing our patience). See? The why is easy.

The what? I have to learn to trust that I am where I’m supposed to be and what I’m supposed to be. Maybe I’m not lost. Maybe this is the new me…who has some work to do on finding joy in all that surrounds me. It’s there. I just have to open my eyes and heart to see it. As Kristen Bell says, choose happiness over suffering. Easier said than done, but I’m trying. Namaste, bitches.

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 eight 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