Category Archives: ASD PDD-NOS

Autism Spectrum Disorder; Pervasive Developmental Disorder-Not Otherwise Specificed

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

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

I’ve Run Out of Ideas

While I usually try to be funny and entertaining, the last couple of weeks have been especially difficult and full of emotions…inadequacy, anger, sadness among them. If you’re looking for a happy blog about rainbows and unicorns, you should stop reading and go elsewhere. Here’s the problem…I am a self-diagnosed perfectionistic control freak with Obsessive Compulsive Disorder, ADD, future member of Overeater’s Anonymous and Lazy Ass Couch Sitter Club. I feel like I’m losing my sense of humor which is probably my strongest coping mechanism. More and more often, I find myself less likely to laugh about things and more likely to cry instead. No clue why (menopause?). I have a birthday coming up which brings me closer to 50 (ouch). I have a daughter who’s is graduating in June and heading to college. I have a little boy who struggles to “make good decisions” at school and at home (no matter how hard he seems to try). Maybe those are reasons. Realizing that things are happening that are beyond my control probably doesn’t help.

My daughter and I are very close. We have a great relationship. One that I wish I had with my mother. Jessica has professed that I’m her best friend (although I think her boyfriend has weasled his way into that spot Smile with tongue out). The realization that she will be leaving home soon is really hitting me hard. It seems like only yesterday that she was dressing up the cat and pushing her around in a stroller or marrying our golden retriever. I’m not ready for the next stage of life and our relationship with her living 3 1/2 hours away. I’d be lying if I said I was ready. I think it’s going to take a long time for me to be ready. I can’t even hear someone ask her about college without welling up in tears (she looks at me everytime waiting for waterworks). But, I know that we have done a good job raising her. She’s a great kid. She’s beautiful inside and out, smart and ambitious. I’m prouder than anybody has a right to be. She’s going to be okay.

Shaney has been struggling at home and at school for a while now. He’s decided that he’s pretty much the “decider” in most things being asked of him. He’s as stubborn as a mule. At school, he sometimes refuses to do his work, stands up in the chairs, turns his desk over, cries, but what gets him into the most trouble there is potty mouth. He insists on yelling out BUTT and STUPID. I’m sure there are others (like the special word he called out when the teacher asked for words beginning with “F”). His teacher came up with the idea of putting tally marks on the white board in class to show him how many times he said inappropriate words to make him more aware. This week, we decided that I would give him two coins each morning. He would be allowed five tallies before having to surrender a coin. If he got into the car at the end of the day and kept one coin, we would do something extra-special. The first day he got in the car with both coins! YAY (computer time)! The second day, two coins! YAY (small toy and DS)! The third day one coin! YEEHAW (computer time and Happy Meal)! The fourth day…no coins! BOO (nothing electronic :/)! No coins would mean that the child stubbornly used ten potty words in a six hour period. To be honest with you, I don’t care if he says BUTT. I’m not particularly fond of STUPID. And STUPID ASS is definitely not cool. But, since there are only three boys in his class who pick up each other’s bad habits and feed off of each other’s energy, I get it.

Last night when I was trying to tuck Shane into bed, he refused to clear his bed of the mountain of toys, pick a book out for us to read and just stop being a jerk, in general. After I asked several times (okay, told him several times), I got no help. So, I said I could not read a story and sing lullabies if he didn’t get ready. That brought the onslaught of tears and a temper tantrum. Once he settled down, I sat on the bed and said, “I’m sorry you’re sad and upset. I’m trying to help you. What can I do to help?” From this adult trapped in a little boy’s body, I hear, “I DON’T KNOW, JANET! I’VE RUN OUT OF IDEAS!” That made me cry…and laugh, he laughed. Maybe, just maybe, my sense of humor is still here. It might be under a layer or two, but it’s there. I think it’s going to be okay.  I’M going to be okay.

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

Beautiful Boy

There are many days when my heart breaks because I feel like I can’t protect Shane from a life of frustration and being placed in difficult situations that he’ll have to learn to navigate himself. It’s out of my hands. That’s a big admission for a self-confessed control freak. I’m doing all I can which is to stand by his side and get all of the professional help that’s available to us. I don’t want him to be ostracized because he hasn’t learned how to always use kind words, share, take turns, actually “play” and talk with a friend instead of just being in their presence. His new teacher says that because he’s so loud and never stops moving, the other kids at school are a little leery and generally steer clear of him. So even kids “like him” aren’t sure how to include him. I don’t want him to see the weird looks we get from adults who are perfect and have perfect kids (according to them, anyway). The world is cruel. It’s their loss, not his. He’s an awesome kid. He doesn’t seem to notice the looks. Guess that’s my hang-up, not his.

At the playground yesterday, he stayed away from any play area with kids. He found a row of swings empty except for one baby. He hopped up on one. I was there to push him, but there was an elderly lady standing there pushing her granddaughter. I asked if he wanted a push. He said no and turned to the lady. He said, “My name is Shane. I’m 6. Do you want to be my friend? Who are you? Linda? Okay, Linda. Now I’m your friend. Can you push me?” She spent the next 15 minutes swinging him. I stood back and watched. Thank you, kind stranger. On the way back to the car, I tried to hold back my tears but couldn’t. Shane saw me and said, “Mommy, I just made a new friend! She liked me! Are you crying happy tears because I made a new friend, Mommy?” We got into the car, he hugged me and climbed into the back. Be still my beating broken heart. Thank you for being kind to my beautiful boy, Linda…my beautiful, beautiful, beautiful, beautiful boy.Red heart

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Beautiful Boy
by John Lennon

Have no fear,
The monsters gone,
He’s on the run and your daddy’s here.

Beautiful,
Beautiful, beautiful,
Beautiful boy,

Before you go to sleep,
Say a little prayer,
Every day in every way,
It’s getting better and better,

Beautiful,
Beautiful, beautiful,
Beautiful boy.

Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we’ll both,
Just have to be patient,
Yes it’s a long way to go,
But in the meantime,

Before you cross the street,
Take my hand,
Life is just what happens to you,
While your busy making other plans.

Beautiful,
Beautiful, beautiful,
Beautiful boy,
Darling,
Darling,
Darling boy.

“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