Category Archives: ASD PDD-NOS

Autism Spectrum Disorder; Pervasive Developmental Disorder-Not Otherwise Specificed

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.

These Are My People

5BF6F389-554B-49ED-BAB5-BA2F51C4488B.jpegIt 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

Everything I Need to Know I Learned From Disney

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

The System is Failing our Kids

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

Stuck in Reverse

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.

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…

Brave and Bruised

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.

#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

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.

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

#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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The Power of Therapy…and Love

Every time I come to this blog and see that it’s been so long since I’ve written anything, it says several things to me. It could be that I’ve been so far into the depths of despair (read: self-pity) that I couldn’t see the light, it could mean that I’ve been lazy (highly possible) or it could mean that I’ve been basking in the light.

This time last year was incredibly challenging for Shane. We were still dealing with massive meltdowns and major defiance. I’m not talking temper tantrums like most parents of typical children experience. I’m talking holes in the wall, name calling, etc…Verucca Salt on steroids. It’s not pretty. And, although it has little to do with parenting skills and a lot to do with PDD-NOS and ADHD, it just feels like the lack of parenting skills is what’s put you in that place to begin with. It’s not. I’m slowly getting that. The behavior at school was extreme. Sure, some of the incidents were funny looking back like the time he pulled the fire alarm and the fire department came. Then, there was the time he pulled the fire extinguisher off the wall and attempted to activate it. Not funny were the broken window, the hitting, kicking and name calling. Everyone was struggling but the one struggling the most was Shane…and believe me when I say that few things are as painful as watching your kid in a downward spiral and there isn’t a damn thing you can do about it other than what you’re doing. I cried daily…most days more than once and many times cried myself to sleep waking with my eyes glued shut (not pretty, trust me). I wasn’t crying so much for me…but for him.

Although I’m an atheist, I’m convinced there are angels on Earth. Virtual strangers who are put here to add beauty to us all. Cyzner Institute is full of them. But, there’s one in particular who has made a difference. He came to us in the form of a big teddy bear of a guy in argyle sweater vests, nice shoes, a shiny head and talent beyond belief. He was such a stark contrast to the rest of the staff that I wondered how he would fit in much like my little monkey boy. Dr. Lisa and the staff introduced him to Shane and he accepted the challenge for one-on-one therapy with him. And, his name happens to be Shane, too…Mr. Shane. From the moment I met him, I felt a sense of relief. I don’t know why. Maybe his aura looked yellow to me. But, from the beginning I knew that he “got” Shane, understood and appreciated him. I could tell that he loved him right away. And, I could tell that it was his mission to see Shane succeed. He once told me that he’s Shane’s conscience…the angel on one shoulder, devil on the other. So, it’s with that angel that we’ve seen the power of therapy and love. He has embraced the wonderful things about Shane and somehow managed to handle the challenges with poise and grace. But, most importantly to teach Shane to handle the challenges on his own giving him strength, control and independence. He is the Creative Director at Cyzner and is an incredibly talented singer, dancer, musician, artist. He sees Shane’s creativity and imagination and figured out how to use it and nurse it to help Shane succeed.  It doesn’t hurt that he likes Rocky Horror Picture Show and has the sense of humor that matches our family. Although he spends a lot of time with Shane, I can also see the impact he’s had on other kids there. Priceless!

Sitting back now and thinking about it all, I think I haven’t blogged in so long because I’ve been basking in the light. I realize there’s still plenty of tunnel left but Shane is off of all medication for ADHD and is only on a low dose of medication for seizures and migraines and Omega supplements. Doctor’s visits are nearly null. Any meltdowns or “issues” are over in minutes and are manageable. We can see ALL the beauty in our boy…he’s compassionate, loving, caring, empathetic with everyone around him, helpful, sweet as molasses, has an infectious laugh, sloppy kisses and a wicked sense of humor (he still gives anaconda hugs to strangers which is a little scary but there are worse things). I will be honest with you and say that there are times when I still feel sad for the challenges in his life and ours…but the joy in our lives far outweighs the sadness. Keep flying, monkey! Mommy, Daddy, Mr. Shane and all the angels are behind you…and are as proud as proud can be.

Check out https://www.facebook.com/ShaneElks?fref=ts

Hello, Old Friend…

Wow! I use blogging/sharing as therapy. Since I haven’t done it since January, that might explain my need for, well, therapy! In the online sense (and real life, too), my absence means that I’m caught dead square in the middle of a massive shit storm and am living in survival mode. There is a popular saying…what doesn’t kill us makes us stronger. Well, I can honestly say that I’m already fairly strong so the universe can stop trying to kill me now. No matter how many times I feel like the universe is giving me a big “*$%^ YOU,” I have to keep marching. I guess when things are out of your hands, you have no option other than to put on your big girl panties and keep moving forward.

The past six months or so have been a huge struggle for Shane and our family. Just when we feel like he’s making huge strides in many areas, there are others that creep up and send him tumbling backwards. As a mom, nothing breaks your heart more than seeing your kid be unsuccessful in simple things most parents take for granted like playing with the neighbor’s kids, going to the mall, going to Times Square specifically to go to Toys R Us and not being able to go to the third floor where all the super heroes are because he’s deathly afraid of glass floors, high ceilings, stairs and escalators. Talk about feeling totally defeated for a little boy to talk about something so much and be so excited then not be able to do it. I would probably throw myself on the floor and kick and scream, too.

We’re in the process of building a stronger support team than we’ve had in the past to help Shane navigate the world. We’ve added a developmental pediatrician (priceless), a developmental neurologist (pure craziness…think Dr. House with a great bedside manner), a pediatric psychiatrist and a vision therapist (new and yet to be determined). We have a referral to a new pediatric neurologist and an appointment with a geneticist in November…all in an effort to do everything we can. With a well-integrated, invested team in place, I feel more hopeful about the future than ever and am excited to hear their recommendations and plans moving forward. I don’t know how to express my gratitude to each and every one of them for taking the time to get to know and love Shane and being able to see him for the loving, sweet, thoughtful, funny little man he is. The staff at Cyzner has be invaluable and I am so thankful for their guidance, patience and dedication to Shane and our family.

One thing I’ve learned in the last seven years is that sometimes you blame yourself for everything. At least, I do. What could I have done differently? Did I do something wrong? I’ve cried a lot and taken a lot of time to reflect on life…what could’ve been, what is. There is something I know and I’m taking the risk of ticking off a lot of people, but I’m going to say it, anyway. I have friends who have children with special needs of varying degrees and we’ve discussed it so I’m not alone when I say this. When navigating the slippery slope we’re climbing, we often encounter people who might offer “help.” There are two things that, as a mom of a child with special needs, I do not want to hear. Please do not say that God gives “special children to special people.” I am no more “special” than my neighbor, friends or family. What kind of god would create “special” children who have to struggle daily with any disability? Or anyone else who suffers with pain or illness? Not a very nice one. I understand that there are many religious philosophies and I get that some people have to believe that there’s more to life than this, that there’s a better life beyond this one and will believe regardless of anyone says. They have to believe for various reasons…afraid of death, fear of having no purpose, not believing in yourself and your own strength. Do what you need to do to feel better, but please don’t tell me you’ll pray for me. Because you know what? It’s easy to go to bed at night, clasp your hands, say a prayer (for those in need and your favorite football team), then get a peaceful night’s sleep. But, one pair of working hands does more good than a million clasped in prayer.

I was raised in the south in a Baptist church. I was baptized and wholeheartedly believed what I was taught. With exposure to different people and cultures, I realized that the world was not full of God-fearing Christians and that there were so many different philosophies. I always considered myself to be spiritual but in recent years, I’ve called myself an atheist. But now I know that I’m not an atheist. I’m a humanist. There, I said it…MY NAME IS JANET AND I’M NOT A REPUBLICAN, LIBERAL (that’s pushing it), DEMOCRAT (although I do think donkeys are cute), A CHRISTIAN OR AN ATHEIST. I AM A HUMANIST.

hu·man·ist

/ˈhyumənɪst or  [hyoo-muh-nist or, often, yoo-]/noun

1. a person having a strong interest in or concern for human welfare, values, and dignity.

Stay calm, carry on and listen to this song.

http://www.youtube.com/watch?v=5TQAjXSD1PY

A New Day Has Come

There’s a song by Celine Deon, “A New Day Has Come” that was written about her struggle with infertility and the birth of her son. I listen to it often. I’m not sure why except maybe to remind me of how the stars aligned to give me a chance to experience the love of a second child. The song has been playing over and over in my mind while thinking of all the twists and turns I’ve experienced in my life. But, the song has brought new meaning to me today.

“I was waiting for so long
For a miracle to come
Everyone told me to be strong
Hold on and don’t shed a tear”

I’ve shared part of our story before about dealing with infertility. But, unless you’ve been through it, you have no idea what it means or how it feels. The hurt cannot be put into words. How your heart melts when you see someone who’s glowing because they’re pregnant. Or, how jealousy rears its ugly head when you see  or hear a baby cry. And, how you’re sure you’d be a better parent than a teenager with an unplanned pregnancy. They made pregnancy look so easy. I already had a daughter. I knew how amazing it felt to bring a life into this world. She is beautiful and I wanted to feel that again. Then, came the gift of adoption and showed me that there truly is no difference between being the mother of a biological child and an adopted child.

“Through the darkness and good times
I knew I’d make it through
And the world thought I had it all
But I was waiting for you”

I recently had the distinction of being the featured runner for Team Up! Autism Speaks for Run Disney’s Twilight Zone Tower of Terror. Doing the run this past weekend gave me plenty of time of solitude (2 hours and 20 minutes) to think about why I was running and our life with Shane. That was the first question I was asked during the interview for Run Disney. Why? I said that I was running to raise money and awareness for autism and that Shane wanted the medal (and my shiny skirt at the finish line, it turns out). I also shared that he was adopted because I’m proud to be an adoptive parent and to have the privilege of being his mom. Those are a couple of reasons but there are many others. I truly do want to help those who are affected much more than we are. I want to make a difference and be a part of something much bigger than me. I want people to keep their snide comments and looks to themselves when Shane has a meltdown in the lines at Disney or on the overcrowded bus or when he wants his Sprite in a wine glass. I want the strength to keep it together when he’s hurting so much. I no longer want to feel helpless. I want people to see Shane the way we see him…a beautiful brown-eyed boy with the power to make those around him laugh and smile.

“I can’t believe I’ve been
touched by an angel with love”

I’ve cried a lot of tears during the past week. I always cry when I finish long runs. I’m not sure why. Maybe it’s a sense of pride because I pushed myself to do something I never thought I could do (and I’m particularly fond of the running part). But, I also cried because for the first time I realized that Shane’s autism is much worse than I thought. I’ve always been really good at making excuses to explain his behavior thinking that part of it was a conscious decision by him to be a jerk. But, when he took a ride to the hospital last week because he severed his thumb after slamming the door on it, he was crying and hitting the top of his head with his other hand. I’ve seen other kids with autism do similar things but never Shane. I thought it was a fluke. But, he did it again when we were at The Haunted Mansion at Disney. He was scared to the point of shaking and pleading to leave. No matter how we tried to tell him it wasn’t real and it’s like a movie, he trembled, his heart raced and he cried hysterically. There were other different behaviors…hitting his injured thumb when he was upset, saying he couldn’t breathe on a crowded bus and trying to push everyone away, becoming so anxious and crying because he didn’t want the plane to leave without us. I could tell that he was trying so hard to be brave. Words cannot describe the pain of watching your child react like that and not be able to do a damn thing about it. I feel guilty for putting him in situations that I could’ve controlled or should’ve known better than to put him there to begin with.

I’m not a religious person. In fact, I’m an atheist. But, if I was religious now would be the time that I would pray for courage and determination to take away the hurt and pain that Shane and others like him face daily. I would pray for the strength to be the mom my beautiful daughter deserves and not be so stressed out all the time. And, to be the woman my husband sees when he looks at me and not feel or look exhausted. Let today be the day that those things come to me. A great honor has been bestowed upon me…their care has been placed in my hands. All I have now to offer is love. That’ll do for now. The rest will come.

“Let the rain come down
and wash away my tears
Let it fill my soul and drown my fears
Let it shatter the walls for a new, new sun
A new day has come”

http://www.youtube.com/watch?v=NaGLVS5b_ZY

When This You See, Think of Me

Each day, Shane is making great strides and I am getting more comfortable exposing him to situations I normally would’ve steered clear of in the past. One of those situations is the playground at the mall. It isn’t very big, there are a lot of kids, it’s noisy. Last week, we decided to go for it.

I always stand along the wall near the exit because I’m so paranoid about him running off. Sometimes in his own little world, he is oblivious and wanders off not realizing how far away he’s gotten (he was one of the little kids on a leash with the monkey backpack…don’t judge me until you’ve had to chase him). The playground was packed full of kids. There’s seating along the wall where parents usually sit. It’s a great place for me to see what’s going on and how Shane interacts with other kids.

Out of 25 or so kids, I was watching three kids who were in the same family. Two of them were playing with each other, but one kept to herself oblivious to the others. She happened to end up near Shane and slowly inched her way closer to him. They climbed together, crawled and sat inside a tree and talked, stayed away from the others.

I watched them play for a little bit and saw who her mom was. I introduced myself and made a comment about how sweet her little girl was. She said the same about Shane and said, “My daughter, Lila, is on the autism spectrum and has ADHD. It’s good to see her interact with someone. She scares most kids.” I said, “Really? Shane is also on the spectrum and has ADHD.” We looked at each other. Small world for two moms free to breathe a sigh of relief and know a little about how the other feels and goes through.

For the next thirty minutes, we watched Lila and Shane play. Both were very gentle with each other, quietly climbing, crawling, taking turns. Her mom and I shared stories about the kids and how to wade through the huge pile of b.s. one has to wade through to get services children “like them” need. She spoke of wanting to go back to college and get a degree in education to be an advocate. Oddly enough, I’m considering going back for a degree in social work or psychology.

When it was time to go, each of us gave the 10 minute, 5 minute, 2 minute warnings. Lila and Shane both came over like little champs. Shane said, “Mommy, can I hug her because she’s my friend? I know her name.” He hugged her tightly. And Lila dug into her pocket and pulled out one single green sequin. She handed it to Shane and said, “Keep this shiny thing so you’ll never forget me.” He hugged her again, put it in his pocket and was very careful not to lose it. A couple of days later, he gave it to me.

I saved Lila’s gift and placed it in Shane’s hope chest. I don’t know if Shane will remember Lila, but I will. It was wonderful to see them play in a setting difficult for both of them and not be in constant turmoil and full of anxiety. It was as if they looked around, found each other, taught, learned. They were kindred spirits meeting by chance. Making the other feel special, if only for a moment…their true colors shining through.

Part of That World

In 1998 when my daughter was gearing up for kindergarten, I set out on a mission to find a good private school for her. The local public school system did not have a stellar record. I quickly realized finding the right school was going to be a task more daunting than I had imagined. There was a waitlist for most kindergarten classes. But, I met a lady in a store one day whose daughter was wearing a shirt from one of the schools I had visited. I asked her how she liked it and she said loved it. I told her about the waitlist. She said, “Don’t worry about it. Put on every piece of jewelry you own and wear your best outfit. Money talks.” So, that’s what I did. Within a week of the meeting with administration, a space magically became available.

When Jess started there, I threw myself in to every fundraiser that the school had. Somehow, I felt like it was my duty. I took on the challenge of chairing their largest fundraiser, a silent auction, for two years running. Each year, we raised anywhere from $25,000-$30,000 with just that one event. They also had a campaign of selling wrapping paper. All of the money was to buy new computers or playground equipment. Being so involved with the school allowed me to meet most of the parents. 99% of them were people I told myself I would never become, but who I was faintly beginning to see in the mirror daily. They seemed to be self-centered parents who thought they were better than everyone else, who only cared about what people saw. And, their kids were unappreciative spoiled brats who had no concept of reality. They wouldn’t be caught dead in something from Old Navy (or God forbid, WALMART) as they might burst into flames. If they didn’t get to play soccer with the big league or lacrosse, they might faint. It seemed that money (or fake money) was no object to them, image was. Those who didn’t bother volunteering were the first to complain and throw rocks at those who were volunteering. The school had about 100 kids enrolled at the time with tuition averaging $15,000. In other words, the school had a truckload of money for that time. Bottom line is that those kids were going to be okay and were going to have a successful school career without a handful of parents busting their ass to bring in more money to buy computers or a new slide. In hindsight, the school could’ve dropped some of their $1.5M to buy a few computers. We eventually left the school after 4 years when I realized that my child needed to be exposed to more diversity and that I no longer wanted to hang with the Biff’s and Buffy’s of the world. It was a world I thought I wanted to be a part of then realized I didn’t fit in, nor would I ever, nor did I even want to.

Fast forward 12 years…Shane’s been at his new school since December. For those who don’t know, it’s a school for children on the spectrum, ADHD and other issues. It’s a full day of ABA therapy, music therapy, art, etc. Because it’s a small school with less than 25 kids, the parents are not that active. They do meet monthly, but it’s more of a meeting to share information and resources. Recently, they put together the spring yard sale so I jumped at the opportunity to volunteer. The money  raised is generally used for computers and other necessities for the kids. I thought it would be a great way to meet the parents and get to know the administrative staff better.

For this story, it’s important to note that the tuition at Cyzner is approximately $27,000 per school year for a full-time student. Throw in another $5,000 for summer camps. In order for a family to afford the tuition, they have to make a considerable amount of money, make huge financial sacrifices or have great insurance benefits (like us). So, I guess for the sake of comparing them to the families at Jessica’s school, they would be the same economically or better. There’s a vast difference between them, though.

Although I had a preconceived notion of what the parents would be like, I discovered that the moms I met working with the yard sale at Cyzner do not give a rat’s ass about their appearance to the outside world. I saw the staff bending over backwards to help and lead. The parents will do anything to get their kids the help they need to navigate in a world of neuro-typical kids. If that means wearing clothes from Old Navy, so be it. If it means driving an older car, so be it. Skip the baseball, soccer, dance and other afterschool activities. If their kids have major meltdowns in a restaurant, or wear their clothes inside-out (a travesty!), rubber boots with dresses or shorts, they are not embarrassed. They’re just trying to survive.

After thinking about my experiences with the two schools, I’ve come to a couple of conclusions…the private school Jess went to was a world I thought I wanted to be a part of, but never would be accepted no matter what effort I put forth. While I realize that we are very fortunate to have nice things, get to travel to beautiful places and have many priviledges I never dreamed I would have, I hope that we are not viewed as hypocritical. But, I hope that our character, generosity, desire to “pay it forward” speak for us and do not put us in the category of the Biff’s and Buffy’s in the eyes of friends.

The world at Cyzner is one I never wanted to be a part of, but I am. They’ve shown me what’s important in life. It’s not what you have, what it looks like from the outside, how much money’s in the bank, the car you drive, the house, the clothes you wear or who your lunch date at the country club is. It took a hard knock, but now I know. It’s love, kindness, generosity, tolerance. It’s the world I want to be part of. It’s the world I’m in. It’s where I fit. I have been humbled.

Courtesy of: Enlightenment Ain't for Sissies