Category Archives: Medical Treatment and Therapy

Medication, ABA Therapy, Group Theraphy, Occupational Therapy

#noalternateroute

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

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

#neverthelesstheypersisted #autismawareness #searchingforpeace

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I Would Walk 1200 Miles

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

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

#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

43b1e526597ba79d70f142a0e98dcbea

#1 and #2

This blog has been swirling around in my head for days and days. So, here goes nothing.

The past few months have demanded big decisions. Life changing ones. The ones that could scar a kid forever if you make the wrong one…as if having me for a mother isn’t scarring enough. 😀

Our daughter will be entering her junior year at Western Carolina. She got into the Nursing Program which is highly competitive and selective. She’s a great student and her hard work paid off. Our big decision…on-campus or off-campus. She suckered me in joining the off-campus camp which meant I kicked it into high gear to convince the dads. We found an awesome place midway between Western Carolina and Asheville. Her clinicals will be in Cullowhee, Waynesville and Asheville. We picked up the keys and began moving in this past weekend. Next week, she goes for good. She’ll continue to work in that area after she graduates and hopes to attend graduate school there to become a Nurse Anesthetist. I know it’s the best thing for her but that doesn’t make it any easier to accept the fact that she’s on to her own life now. For real this time. My role is different and ever-changing. I guess I was still in denial up to this point. I’m so proud of her but it breaks my heart at the same time. In my mind, she’s still the adorable little girl with the big hair bow and the impish grin. So, there you go. Life decision #1. Next Thursday will be one of the most difficult days of the last 20 years of being a mom…right up there with seeing her walk into the school with a backpack bigger than her as she turns to wave goodbye. Seeing her back out of the driveway for the first time as a driver alone as she waves goodbye. Seeing her close the door to apartment #9 as she waves goodbye.

As Jess moves on to the next phase of her life, so does Shane. I cannot begin to tell you how proud we are of the little man he’s become. I honestly don’t know if the winds have changed because of the outstanding therapy he’s received from those who love him as though he is their own, because of maturity, because we’ve figured out how to roll with it or a combination of it all. In any case, I am thankful to the moon and back for the good karma that’s come our way. He’s incredibly sweet, funny, loving, smart and determined. Last week, one of his teachers told me that she loves working with him because he’s like a little adult with a wicked sense of humor trapped in an 8 year old’s body. That’s a great description. We have deep conversations about things from adoption to compassion to time travel to being an alien and more. He leads the conversations and takes great delight in sharing his insights with us. Sometimes when we’re tucking him into bed, he’ll say, “Will you stay here so we can have a conversation?” And, we do. About everything and about nothing.

This school year is a whole new ballgame. Life decision #2. We’ve decided to homeschool him to a degree and enrolled him into the virtual school through the South Carolina public school system. We’ll have a therapist come to the house for several hours everyday to work with him on academics and helping him manage a new situation and all that comes with it. Transition has proven to be tough in the past. But, it is time for the next step. Big decision for us. Do we rock the boat or not? What if it’s the wrong decision for him and/or the family? Even with having to spend so much time learning to manage his behavior and anxiety, he remarkably is on grade level in everything. He’s smart as a whip and a beautiful person inside and out.

As we set up his new school room, we’ve allowed him to play a part in planning. We’ve picked out the new furniture, school supplies and dĂŠcor together. We decided to go with a world traveler theme. He wants “to be like Charles and go everywhere in the world.” So, we found a giant wall mural of a map and bought green pins to mark every place we’ve been together as a family which is a decent number of places in his 8 short years of life. As we were going through postcards of some of the places we’ve been, I told him we would use a special colored pin to mark the one place he wants to go most of all. His response? “I wanna go WAY WAY back, Mommy. I wanna be a time traveler.” Where the hell do I put the pin for that one?

In the words of George McFly, “Like I’ve always told you, you put your mind to it, you can accomplish anything.”

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

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

Why I Am Running

Running, racing and raising $$ makes me feel like I’m somehow making a difference. Last year I ran my first half-marathon to raise money for Leukemia & Lymphoma Society in memory of my dad who died in August 2010. This year, I’m running and raising $$ for Autism Speaks in honor of our son, Shane, who was diagnosed with an Autism Spectrum Disorder (ASD) in November of last year. I’ll be competing with Team Up! with Autism Speaks at the Tower of Terror 10-Miler in Orlando, FL on September 29, 2012. As much as I’m looking forward to raising $1,000 per mile, I’m also excited about meeting other families who are running to raise funds in honor of someone they love and whose lives have also been touched by Autism. Please take a look at my page and consider making a tax-deductible donation to support my fundraising efforts or pass it along to others who might consider it, as well. No donation is too small…every dollar counts! With a GOAL OF $10,000, I’m going to need a lot of help. Smile

P.S.-The monkey in the pic on my Autism Speaks page is Shane when he ran his first race a couple of weeks ago for Miles Against Melanoma (62 feet). Looks like I may have a new running partner soon!

http://events.autismspeaks.org/faf/donorReg/donorPledge.asp?ievent=1024092&lis=0&kntae1024092=F9B4235241EA4EAC84E3AB96F3DA1ABB

San Diego 2012

Me (second from left) with my very special LLS Team in Training
peeps after the San Diego Rock ‘n Roll Half-marathon

You’re Not My Friend!

When you’re a parent, there are days when there isn’t enough wine, chocolate, beer, Xanax in the house to help you not pull every hair out of your head. Days when no matter how hard you try to be patient, nothing works and you turn into a raging lunatic (well, I do, anyway). Days when I am way too hard on myself for not being the perfect parent (whatever the hell that is) which results in crying and feeling worthless. And, when you have a kid who is defiant and has a difficult time with changes, transition and lack of routine, it makes spring break seem like a vacation to Hell.

Several days this week, Shane has had multiple meltdowns and temper tantrums. Let’s brush your teeth and hair…NO! Time to take your medicine…NO! AND YOU CAN’T MAKE ME! Time for lunch…I DON’T WANT TO EAT. IF I DON’T WANT TO, I DON’T HAVE TO! Let’s go see a movie…I’M NOT GOING TO SEE A MOVIE! We’re going to the museum…I DON’T WANT TO GO TO THE MUSEUM TO SEE THE STARS! Let’s go to Carowinds…I’M NOT RIDING ANYTHING EXCEPT THE SNOOPY MOON, NOT EVEN THE CAROUSEL (he wasn’t lying about that). So, I bargain, praise, bribe, provide positive reinforcement, take away privileges, send him to “the chair” to think while screaming and kicking the wall (him, not me). These are all the methods we’ve been taught to do. And, what’s funny is that Shane’s right. How do you make a six year old get out of “the chair” to finish a task because I’m on a schedule when he’s bound and determined to sit there because it’s not HIS idea to get up? Truth is, I can’t “MAKE HIM IF HE DOESN’T WANT TO.”  And, so it goes…I’M NOT YOU’RE FRIEND! I’M GONNA SAY BAD WORDS! I DON’T WANNA STAY HERE WITH YOU!

This has been the first extended break since Shane started Cyzner Institute in December. When he’s in school, the difference in his behavior is insane. He’s a different child. It’s difficult for me to tell what part is autism and what part is just being a brat at home. Obviously, the routine in the classroom helps him stay in control. This week has made me realize how fortunate we are to have the resources and benefits that are available to us. The fact that he has perfect days when he’s in school let’s me know that the therapy is working. Although we’re working with his teacher, therapists and psychologist to learn ways for us to help him manage his frustrations, this week has taught me that I still have a VERY long way to go with my education. We’re fairly new to the world of autism so are still navigating and finding more information daily to help put it all together. We are a family that’s always been spontaneous…spur of the moment movies, trips, restaurants, amusement parks, etc. I have to come to the realization that as much as I think things can be “normal” (whatever that it is) they’re not going to be. At least, not yet.

When things settle down from each instance of tantrums from a six year old amidst tears and hugs (from me and him), I hear, “I do wanna be your friend, Mommy. I love you. I wanna stay here with you forever and my whole wide life, Momma. You’re my favorite. You’re the best Mommy ever.”

And, at the end of the day when the last line of the lullabies has been sung, I whisper, “Always remember and never forget…” the sweetest, most adorable brown-eyed boy I know chimes in, “that Mommy will always love me, no matter what….even if I’m mean. Right, Momma?” Right, Shaney…no matter what. All is well in the universe. For now, anyway. There’s always tomorrow. Smile

We did figure out a way to ride in the car with the top down this week…put on goggles to block the wind and sun! 🙂

Weary Warriors

Therapy is an important part of life for a kid on “the spectrum” and their family, as well. Shane receives several different therapies throughout the week. In his day school, he receives intensive Applied Behavioral Analysis (ABA) therapy for 4 hours per day, 5 days per week. Basically, ABA therapy is finding a way of motivating the child and using a number of different strategies and positive reinforcement techniques. In addition to ABA therapy, he has music therapy three times per week and sees an Occupational Therapist once per week. He has made leaps and bounds of progress in social situations and self-soothing techniques. He has made friends in each setting and brings surprises to his partners-in-crime and they give him small trinkets, in return. They’re simple things that mean a lot; a ballerina ornament, plastic egg with rocks, a green toothbrush, rings from gumball machine, plastic frogs, spiders and tiny cars. All of these are tremendous strides since anyone touching Shane’s things would normally have resulted in a kicking, throwing, temper tantrum. In fact, he thought that every kids toys should belong to him “forever and his whole wide life” which resulted in no play dates, ever. We were too afraid of the freak-outs and are still are not comfortable, although we’re almost there. 🙂

At each office, I watch the kids come and go. They have various degrees of needs and characteristics ranging from those who are severely autistic who need any and every service they can get to “normal” kids needing only speech therapy. Some are in wheelchairs and can’t walk, some refuse to get out of the car or get back into the car, throw their backpacks on the ground and refuse to get up, others are running around the waiting room because they can’t sit still, some are making odd noises, some run to their favorite seat before anyone else can sit there. Many carry cell phones, iTouches and iPads, watching the same video over and over for constant entertainment. During the time the kids are in therapy, the parents and caregivers surf the web, knit (I’ve seen a ball of yarn turn into a whole sweater), do paperwork enjoying their every minute of their hour of solace. I see the same ones weekly and wonder how they do it, where do they find the strength to care for someone who demands so much of them every minute of the day…they weary warriors.

Each week, Dave* leads Sam* into the office with a gentle sway and soft words. He has dark circles under his eyes and looks like he could collapse at any moment. Sam is severely autistic and commands every minute of his father’s time. He is non-verbal, walks with a shuffle and doesn’t really communicate in an effective way. He carries an iTouch and watches the same videos repeatedly. Each week, when the therapists come for Sam, taking away his iTouch for less distraction during his session results in a noise that is difficult to describe. Once Sam has left with his therapists, you can see Dave breathe a sigh of relief.

We had never really spoken before, but on this occasion he shared part of his journey with me. At six weeks of age, it was apparent there were problems with Sam. He stared blankly, cried continuously and responded to no ques. At ten, Sam has the developmental capacity of an 18 month old baby, but is the size of a 15 year old boy. Dave met a school administrator somewhere along the way who assured him that they could get Sam into a public school program in Charlotte that offered the specialized services he needs. So, he sold his prospering company in NY and relocated to Charlotte. I sat and listened, taking in all the information I could. When Dave talked about Sam, the love beamed from his eyes. He smiled when he told the story about a barber in town who cuts kids hair when they’re laying on the floor in between playing “Red Light/Green Light.” I could tell that a good sense of humor was part of what was keeping Dave on the sane side of the mountain.

When Dave’s grandmother died, he and Sam went to the funeral. The minute the director of the funeral home saw them walk through the door, he directed them to the “children’s room.” Dave said they didn’t want to go to a separate area and would be joining the rest of the family. As always, Sam had his iTouch in hand. He wouldn’t wear headphones so Dave turned the volume down, but Sam just turned it up. He watched his video and found his favorite scene, rewinding it to the same spot over and over again. So in the midst of tears and sorrow, the guests heard special music playing during the funeral service, the Cowboy Dance Song from Elmo’s World: The Wild, Wild, West. Through the tears and laughter of the guests, Dave knew that his grandmother wouldn’t have wanted her funeral service to be any other way.

Dave’s story is inspirational to me. Each evening when I climb into bed wondering where to find strength for the next day, I think of Dave and others like him. As exhausted and overwhelmed as I feel at the end of the day, I know that my challenge is nothing compared to theirs. They are so weary, yet so strong with such courage, tenacity, love…they are true warriors.

“Perhaps I know best why it is man alone who laughs; he alone suffers so deeply that he had to invent laughter.” –Friedrich Nietzsche

*Not their real names

“He’s Just a Two Year Old Boy.”

Shane was a delightful baby, full of laughter, smiles, love. Starting at around two years of age, we began to see signs that something wasn’t quite right. There were incidents of aggression, severe meltdowns with no obvious cause, hitting, throwing chairs, etc. I had to go the emergency room twice from injuries resulting from physical aggression, once for getting hit in the ear with a rock and again for a scratched cornea. He even broke his time-out chair! Open-mouthed smile  He seemed so happy but switched moods in an instant…like Dr. Jekyll and Mr. Hyde.

In an effort to put him in situations where he would get more socialization, we enrolled him into the half-day program at the YMCA. After many phone calls from the school to report incidents of hitting, biting, throwing chairs and fits of rage, he was deemed “not a good fit” for their program. Even when we went to the gym to work out and put him in the childcare for less than an hour, we were called for the same reasons.

Bound to get him into some sort of a program, we found another preschool where the teacher seemed to be the right fit for Shane. She was patient, persistent, kind and he adored her. He still continued to have outbursts, but she used tactics that seemed to help him calm down. I still received phone calls and had to pick him up several times. But, the school made a huge effort to help develop a plan that would work for him and help him cope with a stressful/different environment.

A couple of months after he started his new preschool, his teacher called and said, “I think Shane just had a seizure.” Her brother was an epileptic so she was familiar with signs to look for. We had seen instances of him staring for what seemed like a really long time. It was usually after an outburst and we assumed he had just worn himself out (I would been exhausted if I threw fits like that! Open-mouthed smile). The next time we saw it happen, we called his name and he didn’t answer nor did he blink or respond in any way. Although it seemed like forever before he responded, the spells really only lasted 5-7 seconds.

We took him to the pediatrician thinking the switching of moods so quickly might have something to do with diet, seizures or something else not obvious to us. We just knew that whatever was going on was not “normal.” Our pediatrician dismissed our claims by saying, “He’s just a two year old boy.” She obviously wasn’t listening when we described the extent of his daily behavior. She suggested that we make sure he had something to eat every couple of hours (yeah, that’s it…we were starving him :S) to see if spikes or drops in sugar levels could be affecting his behavior. No tests were conducted. We left feeling totally defeated but knew that we were strong parents and would figure out methods that would work.

The disruptive behavior continued to escalate. We finally made our way to a pediatric neurologist. It was discovered that he had an arachnoid cyst on his brain in an area that could cause seizures. We were sent to a neurosurgeon who advised us that it was the type of cyst that is slow growing and not likely to ever cause a problem. We were told to get new MRIs every two years to make sure it isn’t growing. Based on history of staring spells, he was placed on medication for seizures. Since starting the medication two years or so ago, we have only seen a few other incidents of the staring, but the aggression, outbursts, etc. continued.

During all this time, he was never able to have “real” play-dates because he had major social issues with other children. We felt really sad and sorry for him and hoped for the best every time other children were around. He became easily overwhelmed, frustrated, hit other kids (not with ill intent), had major meltdowns, then withdrew. He preferred going to a corner and playing alone. He had invisible friends that he preferred to interact with and whispered to them while everyone else went about their business. Any new situations and changes in routine were too much for him to handle. He covered his ears when the vacuum came on, ran out of the bathroom when the toilet was flushed and screamed in public restrooms when the hand dryers came on. Certain stores and restaurants instantly caused meltdowns for no obvious reasons. We got the “looks” from other shoppers whose children must be perfect (screw them, by the way). That made it worse and made us feel even more like total failures as parents.

In August 2010, he started kindergarten at a public school. Given our history, we crossed our fingers and hoped for the best. Needless to say, it didn’t go very well and we removed him resigning ourselves to the fact that he would have to be in another learning environment. We just didn’t know what.

We desperately searched for answers and after a series of evaluations with a child psychologist, he was diagnosed with an Autism Spectrum Disorder (ASD); specifically Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and Attention Deficit/Hyperactivity Disorder (ADHD). Although it was a swift kick in the stomach to hear the word “Autism,” it explained a lot and gave us many answers. But, more importantly it opened doors to resources we did not have before. Microsoft has benefits unlike any other and has allowed him to get into a program to address his specific needs with intensive Applied Behavioral Analysis (ABA) therapy.

Even with the challenges, we’ve experienced more joy in our lives because of Shane. We are thankful everyday for the alignment of the stars that brought him into our lives. He makes us laugh daily. He is a sweet, gentle soul. His innocence amazes me. He has the longest eyelashes most girls would kill for and beautiful brown eyes to match. He has a fabulous imagination, tells the best stories (he won the “Best Storyteller Award” at school), offers enlightening insight and views on life, runs outside in his underwear to greet the pizza delivery person, embraces things he’s afraid of (like zombie babies), gives the best hugs (even to strangers) and is beautiful inside and out.

I’m done writing about the history and events that got us here today. It’s boring for readers, but doing so has been therapeutic for me and  I hope helps create more awareness of ASD/PPD-NOS/ADHD. It is estimated that 1 in 100 children have ASD. On average, it is 4 to 5 times more likely to occur in boys than in girls. It’s an epidemic, people!

http://www.cdc.gov/ncbddd/autism/data.html

Now, on to the fun stuff which is sharing stories about his little quirks, creativity and other things that keep us laughing. Get ready to meet the REAL Shaney P Robinson in all his glory!

Speaking of Shaney in all his glory: Meet the nekkid cowboy!

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Smile