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.
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.
It is often said that there’s a master plan for the universe. That things happen for a reason. That you’re given no more than you can handle. That what doesn’t kill you makes you stronger. That, eventually, you’ll find your place in the world. And, while there have been many times that I’ve questioned the universe, cursed it for the everlasting pile of crap heaped on those who don’t deserve it, I’ve finally realized that I’m right where I was meant to be all along. Where there was darkness, there is light. And, love, support, friendship, hope.
Today marked the completion of a six month program called Partners in Policymaking through the South Carolina Developmental Disabilities Council. During this time, I’ve gotten to know some of the most amazing humans I’ve ever met. Among them, the courageous self-advocates and professionals whose calling is that of saints. And, the moms.
Among the self-advocates are the women with beautiful souls inside and out who are learning to fight for themselves and inspire others to do the same. Some calmly and quietly, others out loud. Enjoying life THEIR way. There’s the guy who puts John Deere to shame by taking apart a lawn mower and putting it back together better, faster, sleeker than they ever could. The guy who loves to sing and makes his family so proud. The guy with one of the best laughs I’ve heard. The sweetest girl ever who sang Happy Birthday with more soul than Aretha Franklin. And, the support staff who protectively watch over them with love and kindness, but giving them the freedom to be independent. Rejoicing in their success and sharing tears for their sadness as a parent would.
Those who chose to work in the field of advocacy, teaching others how to find their voice, providing support to those who need it are beyond inspiring. They fight for the funding to keep the program going to help so many. All are passionate about the cause and all so very special who have each touched my heart in their own way. There’s one, though, that on the surface looks like she’s given up her life for others. There’s a sense of sadness in her. On the outside, it looks as though she’s done without so she can help others. She’s single with no pets or children. She exudes love, pure yellow. And, when she opens her mouth to speak, we listen. She takes us to church with every single word uttered; spoken with conviction, compassion, empathy, power. The truth of the matter is that while it may appear that she’s done without, she has more than all of us.
The moms. Oh, my god. The moms. Astounding, each with their own story of seeing their child (or children) struggle, in pain, ridiculed, crying, fighting. Fighting for inclusion, education amidst bureaucracy, medical care, benefits, friendships, and doing all they can to be the rock for their family while many are broken inside from the constant struggle. Fighting for things most take for granted. Feelings of belonging no where, struggling to find their place when friendships end as they put all of the time and energy into being an advocate for kids who are often so misunderstood. These are my people. The late nights, margaritas, queso, Door Dash, bottles of wine, jewelry, stories, tears, laughter, encouragement, understanding, beauty, determination, love. A sisterhood of women who have probably all wondered how they got to where we are in life, feeling as though they’ve lost themselves somewhere along the way. I know these women. I know who they are, what they’re made of. They are the ones who fight not only for their child and family, but for others like them. They are the ones who don’t just talk about how they wish things were different, they do what needs to be done to make sure things are different. They absolutely have lost themselves along the way. But, what they’ve found, what they’ve become, is something far greater and more beautiful than they ever would’ve been had they not been dealt the hands they hold. And, no matter how the cards continue to be dealt, you’ll never see them fold. Oh, no. Not THESE women.
Yes, the universe has a plan. It knows what it’s doing. It knows that you could give these women, men, moms, advocates, self-advocates the crappiest hand in the deck. And, we would know what to do with it to win. It’s in our hearts. Determination. Those who have been hurt the most often have the greatest ability to heal. So grateful to have met my people. This is my purpose. This is my life. These are my people.
#pip #partnersinpolicymaking #advocate #disabilities #autism #aintnostopingus #momfia
I’m not gonna lie. Today sucked. We had our first IEP meeting at our local school after the fiasco when they lied, denied and sold their soul to the devil months before at the last IEP meeting. I’m thankful that our attorney was with us and ensured that everything that should’ve been addressed was noted.
As soon as we showed up, the staff that betrayed our trust to the utmost extent acted as if nothing ever happened. The pleasantries began. The district supervisor that was so nasty to the school in Tennessee sat with a sneer on her face next to their attorney. I sat in the chair across the table silently, jaws clenched, Sharpie in hand. My husband said he could tell I was fuming and that I was even writing “angrily.”
“How is Shane doing?” My husband answered them. “Oh! That’s great to hear.” Inside my head, I rolled my eyes and whispered to myself all the things I wanted to say. Do they know that their lack of honesty took years off our lives? Do they realize that their lack of integrity has cost us thousands of dollars we shouldn’t have had to spend? Do they know that their lack of morals is stealing pieces of time from our family we’ll never get back? Furthermore, do they care?
Anyone who knows me understands the colossal feat it took for me to sit with my mouth shut. I’m a fighter. A warrior. A Mama Bear. How did I accomplish this? Disney. Yes, Disney. During the meeting, I replayed pivotal scenes from Disney movies in my mind. Movies that taught me life’s lessons so eloquently that I hadn’t thought of for years.
Thumper-“If you can’t say somthin’ nice, don’t say nuthin’ at all.”
Scar looking in Mufasa’s eyes and indicating that he was going to help only to dig his claws in and let him fall
Pinnochio-“Always let your conscience be your guide.”
Aladdin-“You’re only a fool if you give up.”
Lady and the Tramp-““There’s a great big hunk of world down there with no fence around it.”
Nemo-“Just keep swimming.”
I know it’s a weird coping mechanism, but it’s one that worked for me today as my anxiety was through the roof. And, even as I sit here this evening, my heart breaks that the road we’re on is not one I would’ve chosen or ever envisioned, but it’s what has to be for now.
As we said our goodbyes to Shane after our visit Saturday, I handed him a little box. In it were two action figures, Frodo and Sam. But, more importantly, there was a dog tag necklace with a quote we repeat at the end of every phone call and one that I hope he never forgets…
“Promise me you’ll always remember: You’re braver than you believe, stronger than you seem and smarter than you think.”-Winnie the Pooh
Thanks, Disney, for giving me the wisdom, life lessons and the words to convey what my head is saying and my heart is feeling. And, for teaching me everything I need to know.
Hard work pays off.-Princess and the Frog
I’ve put off writing about how everything has fallen into place (or not) because I was waiting for it all to, well, fall into place. But, after weeks of going back and forth, we’re still fighting. So, here’s where we are.
For several months, we tried unsuccessfully to get Shane’s bipolar under control to no avail. Having exhausted all local resources, we resorted to finding a residential placement once again to get him stabilized. Just before Thanksgiving, he went to ViewPoint in Utah. Shane’s care at Viewpoint was 100% out of pocket and required payment in advance. It was $37,500 for five weeks of care. Our insurance reimbursed us $9,000 so that left us in the hole $28,500 to get mental health care for our son. With amazing acts of kindness and generosity, a friend set up a GoFundMe that raised $9,000 making it really only $19,500. The team at ViewPoint did an amazing job in a short amount of time with medication and made recommendations for the next step. Shane was able to make it home just in time for Christmas.
We’ve been fighting with our local school district since last August. He started our local school in a contained classroom without the proper accommodations in place that were required by his IEP. They put him in a contained classroom with no 1:1 support, no structure, no visual schedule, no behavioral plan, no calm space, etc. They did not take note of recommendations from Ki Charter where he’d been successful the previous year. They only allowed him to go for 2.5 hours per day and even then called us to come get him and had the police officer intervene when there were behavioral issues. It got to the point where they were only willing to provide him with five hours per week of homebound education. What parent would be willing to accept that for their child’s education?
After many meetings, the local IEP team admitted that they are not equipped to provide Shane with an education due to his learning disabilities and behaviors associated with the combination of his autism diagnosis, ADHD, bipolar and anxiety and recommended residential placement. Federal law dictates that the district pays for 100% of the cost if that’s their recommendation. So, we hired an educational consultant who began scouring the country for programs that would accept him based on his reports and needs. Therapeutic boarding schools range in costs from $75,000-$150,000 per year.
After weeks of applying to various schools, Ashley Barbour at Barbour Consulting found an amazing program near Nashville, Tennessee. Not only is King’s Daughters School a great program for kids with Shane’s profile, but it’s within driving distance from Charlotte and is at the lower end of the amount for annual tuition at $72,000. They even had a spot available for him to start after the winter break. So, we just had to finalize everything locally. We were thrilled!
While Shane was in Utah, in mid-December, we went to our local school for the IEP meeting to finalize his placement in Tennessee as per their recommendation. When we walked in, there were approximately eight people already sitting around the table including a couple we’d never met before. Among them was the district supervisor of Special Education Services. Based on previous conversations, we thought it would just be a simple signing of what we’d all agreed on. They already knew about Tennessee via email correspondence. But, we quickly found out that the local IEP team (that we’d trusted had our best interests at hand) had been coached. The district supervisor first informed us that they would only be willing to pay $32,000/year to King’s Daughters which is the cost of the day program at King’s Daughters. Where was he supposed to live to be able to attend a school six hours away? As the supervisor went around the table, she asked each member of the team what their recommendation was for Shane. The first person to speak was the principal (the one I trusted the most). He said, “I recommend a day educational placement for Shane.” Second person (whom we did not know nor did he know Shane) said, “I recommend a day educational placement for Shane.” Next person was his teacher (whose basic methods did not work with him) said, “I recommend a day educational placement for Shane.” At this point, my usually very patient husband was furious and said, “Stop! It’s obvious you’ve all been coached.” Why? Because if they said only a “day program,” that’s all they have to pay for. But, they’d already said (and written) “residential program” in a previous IEP meeting. They also had said in the same meeting where they recommended a residential program that if they recommended something, they had to pay for it when I voiced concern about it. I was told “not to worry. It was covered.”
Call it a mother’s intuition, but before we went to the meeting with the school that morning, I had contacted an attorney in Lancaster County who works with people with disabilities, Elizabeth Hyatt. I just had a hunch that something was going to happen and that they weren’t going to play by the rules. She gave me some pointers, but more importantly, gave me a copy of 34 CFR Ch. 111 300.302 that says “If residential placement in a public or private program is necessary to provide special education and related services to a child with a disability, the program, including non-medical care and room and board, must be at no cost to the parents of the child.” I printed out a copy of it and highlighted that paragraph. After my husband stopped them, I asked the district supervisor if she was aware of the federal statute dictating special education placement outside of a district. She said, “No.” I said, “Here you go” as I slid the paper across the table to her.
The meeting ended quickly after that. A few choice words were said. Some left. Two members of the IEP team apologized (under their breath). I felt sorry for them. I liked them and I was angry at myself for feeling sorry for them. I can’t imagine ever putting aside my morals and personal convictions for the sake of a job. EVER. But, I’m also incredibly angry and disappointed because they did not fight for our son. Or for our family. I feel betrayed. They chose lack of morals rather than to stand up to their supervisor for what’s right. They know what they said before. They know what we’ve discussed in depth. They know what our son needs. They know we’ll do anything for our son. We just need help that we’re entitled to based on the law. The school psychologist (also one I also trusted immensely) quietly said, “I’m sorry” as he walked us out. My husband said, “No one in there had a backbone. I am incredibly disappointed.”
The problem with this is obvious. Children who require special services that are anything out of the norm don’t get them. The school recommends outside placement and says they’ll pay just for the day portion of $32,000. The program is $72,000. You can’t do one without the other. Most families wouldn’t be able to afford the extra $40,000 so someone has to quit their job and stay home with the child. That means the school is off the hook for having to provide any services now. Many parents don’t know the law and don’t know what they’re entitled to or have the resources to hire an attorney to fight for what is legally theirs. So, the child doesn’t get an education or socialization and the mother (usually) can’t work outside the home and isn’t paying into the social security system so now both end up on Medicaid. It’s a never-ending cycle of poverty.
Since that meeting in December, Elizabeth Hyatt has been fighting with the local district and the State Department to get the contract signed at King’s Daughters for full amount of $72,000. Supposedly, they finally agreed after much going back and forth. Just TODAY (after six weeks), they finally returned the signed contract…the WRONG one showing that they would only be paying $2,700 per month (for the day program) in lieu of the whole cost of $6,070 per month. It’s starting to feel a lot like Groundhog Day. The system is broken. They’re failing our kids. We will not allow them to fail our son. And, when this is all said and done, I will do everything in my power to make sure other families have the resources to fight for their kids when the system fails them, too.
#autism #specialneeds #advocate #iep #elizabethhyatt #ashleybarbour #kingsdaughters
When you try your best but you don’t succeed
I literally have made a full-time job out of finding the right placement with Shane, building a team of professionals and working out details with the local school. We’ve worked diligently, spending hours online and on the phone. Completing applications only to be turned down. IQ too high. IQ too low. Behaviors too severe. Behaviors not severe enough. In spite of all of that, I feel like we’re failing. When you try your best but you don’t succeed.
When you get what you want but not what you need
With only one week left before he’s scheduled to come home, Shane continues to struggle. I’m starting to feel like having him home for Christmas and then to Tennessee in January might not happen as he doesn’t seem to be as stable as we thought. We’ve made travel arrangements for next week and desperately want him home. But, is that what he needs? Is he ready to make yet another transition? Do I put our wants above his needs? Am I being selfish? When you get what you want but not what you need.
When you feel so tired but you can’t sleep
Ever been so exhausted that you feel like 24 hours of sleep would do you good, but you can only sleep for five or six at a time never feeling rested? I literally take melatonin, Xanax, Advil PM and Prazosin daily and haven’t slept more than a few restless hours per night in months. Thoughts race through my head 24/7, seldom at peace. As bad as it is for me, it’s worse for Shane. He’s away from home and in a strange place. He’s scared to sleep alone…even at home. He has nightmares there and gets up at 3:00 a.m. That makes for a very long day. If you know anything about bipolar disorder, you know that lack of sleep only makes things worse. So, while they’re trying to adjust his medication to stabilize his bipolar, he’s not able to sleep which only intensifies the situation. When you feel so tired but you can’t sleep.
When the tears come streaming down your face
This. Daily. All of us. Me, Scott and our boy. We have Skype calls every Wednesday for about thirty minutes. Yesterday, he looked much sadder and more defeated than we’ve seen him since he’s been in Utah. It takes all I have to put on the brave, happy face. But, I know that he would only be more upset if he sees sadness in us. I’m heartbroken. Scott is heartbroken. Shane is heartbroken. We’re all exhausted and sad to the core. He wants to come home so badly, although he understands why he’s there (as much as he can). We want him home. I want to be a mom ALL the time. I’m not ready to relinquish my daily responsibilities to a boarding school for years to come. But, I know that if he had cancer, I would have to rely on the “professionals” for treatment. I view mental illness, autism and Shane’s unique set of circumstances the same way. It’s out of our scope of abilities. We’ve been asking for help. For years. And, we’ve gotten it along the way. Lots of help from many people. Not so much from others who should’ve been able to help and didn’t. Still, we flail with no end in sight. When the tears come streaming down your face. Still. After all these years.
Stuck in reverse.
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.
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.
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 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.
As I prepare to head to Shane’s school to participate in a promotional video about the difference they’ve made in our boy’s life, I can’t help but think of this song. Through the darkness and good times, they’ve not given up on him. They’ve invested time in getting to know him. They don’t take his refusal to do work for his lack of ability to do work. They didn’t take his poor test scores as his “normal” and repeated the tests realizing that the vast differences in results was an indication of deeper issues. Not all kids learn the same way and they’ve taken on the challenge of having to be creative to find what works for him. All of the kids there march to the beat of their own drum. They’ve not been given the same opportunities typical kids who make the honor roll have been given. Many are bruised and broken…the staff at Ki Charter gets that. Often those who are hurting the most lash out at others the hardest. The staff is there because they want to be there and they want to make a difference in the short time they have the kids in their care hoping that their short influence will ignite a love of learning and find confidence in the kids. Lord knows there are much easier teaching positions they could choose. But, at Ki, they have the opportunity to be a catalyst for great things.
They know Shane has a great heart deep down and is a kind and loving little soul and don’t take his tantrums or lashing out as “mean.” I wonder if they’ve ever had the chance to hear his deep belly laugh or to hear his incredibly creative stories. I wonder if they know he’s one of the sweetest boys they’ll ever meet. I wonder if they know how thankful I am that they are including him with the other kids with support as needed instead of insisting on division and one-on-one.
I listened to this song everyday when we were trying to conceive a second child over a span of seven years. After multiple miscarriages and failed IVF attempts, we decided to give up in July of 2005. Shane came into our lives in a way I never thought he would in December of 2005. The universe had a different plan for us…for Shane. The world thought I had it all, but I was waiting for you.
Where it was dark now there’s light
Where there was pain now there’s joy
Where there was weakness, I found my strength
All in the eyes of a boy
While at San Marcos, Shane has been enrolled in Ki Charter Academy, a public charter school on the grounds of the treatment center. It’s a totally separate entity of San Marcos Treatment Center. All kids enrolled in the treatment center attend Ki Charter, but not all kids there are from the treatment center. School has been a huge issue and challenge for Shane and we were worried about how he would handle the academic setting surrounded by peers.
When Shane was as young as two, we couldn’t even leave him at the Y long enough to work out without them calling us to come get him. Every daycare decided that he “wasn’t a good fit” for their program. Once it was time for him to start kindergarten, we enrolled him into the public school and within a few weeks, he’d been suspended several times for throwing erasers, knocking over a chair, pushing a kid, etc. The public school refused to accept the diagnoses and testing we had from doctors and insisted on doing their own evaluations before making any changes or accommodations. Each time they called me to pick him up, I went and scooped him up in tears (both of us). We decided to pull him out when we found Cyzner Institute which was a small private school that provided ABA therapy and a small teacher to student ratio. Even in a class with 6-8 kids, Shane wasn’t successful and instead of leaving him in the classroom to help him build social skills, they insisted on one-on-one instruction. No one would give him a chance. So, Shane’s entire academics have always been one-on-one which is why we were so anxious about him starting at Ki Charter Academy. But, we were hopeful.
As soon as it was obvious that he was struggling behaviorally and academically in a somewhat traditional classroom setting, I discussed having Shane tested for special education services and began wondering what else could be done to help him. With Ki Charter, I got immediate cooperation. They tested him over a period of a couple of months, repeating some tests multiple times because the results were so drastically different each time. They didn’t accept his refusal to perform particular tasks as his inability to learn. They were diligent and took a genuine interest in trying to figure out what makes him tick.
Yesterday, we had our first IEP meeting. I’ve heard horror stories from parents about their IEP meetings. Scott and I sat at the table and listened to the results and their interpretations of Shane. Most of what they said was no surprise. But, some things were amazing. They agreed that he needs extra support in various subjects and that it would be put into place immediately. They talked about how creative, funny and curious he is. It’s no surprise that he struggles with peer interaction. He’s never experienced it. I braced myself waiting to hear the “your kid needs one-on-one” instruction. They said the opposite. They want him to remain in class with peers. Such a pleasant surprise. They believe in him and are giving him a chance to find success. We spent the next few minutes after the call in silence and tears wondering why we didn’t fight harder for Shane at other places once again placing blame squarely on our shoulders.
We anticipate our insurance running out for the treatment center toward the end of March. Because Ki Charter has put so much care into helping Shane learn to navigate “real school” with peers, we want him to finish out the school year there. It would be virtually impossible to expect Shane to come back to South Carolina and be successful with only a couple of months left in the school year.
On March 1, we’ll be packing up Memphis and Tux and heading to San Marcos planning to stay through the middle of July. That will give Shane the opportunity to continue at Ki Charter learning to interact appropriately with peers in an academic setting under a staff trained in special education and undoubtedly passionate about their work. The last day of school is June 1, but Shane has been granted permission to continue for six more weeks in their summer program. It is our hope that he will also be able to successfully join some summer camps like “real” kids (his words).
I’m excited about our little place on the river in San Marcos. Tears dry faster in the sun. I may not ever want to leave. I can easily say that the last year has been the most challenging year of our lives. But, at this moment, I can finally breathe knowing that for right now, for Shane, there’s a place for us.
The last six months with Shane at San Marcos have been the longest six months of my life (his, too, no doubt). The first two months at the treatment center were brutal for him. For the first time in his life, he was surrounded by peers. But, not just any peers. Peers who are bruised, hurting and just as fragile as he is. So, in learning how to navigate a brave new world for each of them, they’re doing it in the midst of others hurting the same way they are.
Right from the beginning, Shane met kids who would not tolerate his name calling and physical aggression. They were the same as him and each had triggers to cause them to react as he did and fight back. Although Shane had hit us many times, no one ever hit him back. Although he had verbally abused us and others, no one had ever done it in return. So, it was a rude awakening. A real life consequence when you call someone a name or punch them is that you’re likely to get punched back…hard. In the face. And you get called names. And, it hurts. Physically and emotionally. For the first time in his life, Shane felt what we have felt. He cried. He was angry at us and would go for days just screaming into the phone when we called. We cried. It took him a while to connect the dots, but he is finally doing it. So many things he took for granted were suddenly gone for him…no one was there to coddle him or to assure him that he would be loved no matter what. We couldn’t be there physically. And when he refused to get on the phone, we couldn’t be a calm reassuring voice to him. He was sad to the core as he began to understand how some of his actions and behavior must have affected Scott and I over the years finally became clear. He talked about regret for things he had done for the first time in his life.
For the most part, the staff at the treatment center have been amazing. The nurses seem to care, the unit manager handles any issues immediately and his therapist is a joy to work with. Shane was so mean to her when he first met her, but she persevered and didn’t let that interfere with getting to know him and finding ways to help. He adores her now. She has done some wonderful work with us in family therapy. So very thankful for her.
Nevertheless, there are some staff members at the treatment center who have forgotten why they’re there. They’ve forgotten that they are working at a residential treatment center for kids with emotional and behavioral issues, not at a country club. The decision to work there cannot be taken lightly. You have to have a heart and genuinely care for kids and want to make a positive difference in their lives. They’ve forgotten that these are kids whose parents are at home crying themselves to sleep because they’re 1200 miles away. No good night kisses or cuddles. No bedtime stories or discussions about who’s better, Superman or Spiderman. Or, how did Donald Trump become POTUS. They’re just little kids who have fought every day for their entire lives. Either with others or themselves, their emotions…every single day. Little kids who have felt like a failure a thousand times more than they’ve felt successful. They are bruised, scared, no strangers to the dark. They wouldn’t have made it to a residential treatment center without dire circumstances. Many kids there are foster kids who have never had a stable life. They’ve forgotten that a therapeutic hold is not squeezing a hand too hard, thumping an ear. They’ve forgotten that the kids need to hear kind words and encouragement. What they don’t ever need to hear is:
- “Your parents are having a party without you at home.”
- “You know your parents can ‘unadopt’ you if you don’t stop (insert whatever he’s doing).”
- “You’re never going home.”
- “You’re going to end up in jail.”
It is my hope that with each complaint I’ve lodged, the staff who have lost their way have had a chance to re-examine why they’re there. I hope that they have been retrained on the Nurtured Heart Approach which has proven to be a powerful way of awakening the inherent greatness in all children. Gentle, loving, creative, constructive, kindness.
In spite of the negative actions of a few staff members, I would highly recommend San Marcos Treatment Center to those with children who need residential treatment. I realize that no place is perfect. It’s a people business. People take jobs for the wrong reasons. They become jaded and lose sight of the mission. The fact that Administration has listened to each complaint and taken appropriate action speaks volumes about the facility and the staff there. Most genuinely care about the kids and seeing them succeed.
I don’t know how many kids at San Marcos are like Shane with a family who loves and supports them no matter what. I feel sad for those who don’t have what he does. I’ve seen The Greatest Showman twice. I listen to the soundtrack daily. There’s a song called “This Is Me.” It’s beautiful. They’re beautiful in spite of all they’ve faced and had to deal with, they deserve love above all else. This is the message I hope the kids hear as they get help and work through their struggles:
- “We are warriors.”
- “I won’t let them break me down to dust. I know that there’s a place for us. For we are glorious.”
- “I’m marching on to the beat I drum.”
- “I am brave. I am bruised. I am who I’m meant to be. This is me.”
Take a minute to watch this video. You won’t regret it. I promise.
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
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.
“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.”
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.
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.
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.