Tuesday, April 2, 2013

Light It up Blue: Autism Awareness Nails & Asperger's through the eyes of a sister.




Hi everyone.

Today I have a very special manicure with a very special story for you.



Today is National Autism Awareness Day. Autism Speaks, one of the largest Autism awareness Organizations, along with hundreds of thousands of people and communities from all of the world come together one day a year to bring international Autism Awareness to the headlines in campaign now recognized as LightItUpBlue.

Autism is a Pervasive Developmental Disorder, a neurological disorder that impairs social and communicative development that is generally characterized by compulsive or ritualistic behavior, sensory and motor abnormalities, speech impediment, and even self-injury.





It's hard for many to fully grasp the effects of Autism and what it means for both the diagnosed and their families.

To help, allow me introduce you all to my brother, and his story (it's a long one!).





Meet Christopher:
A ten year old that looks perfectly normal on the outside, but has been struggling with Asperger's Syndrome since he was just two years old.

Asperger's Syndrome is an Autism spectrum disorder that is often classified as "high-functioning" Autism, although the two are not always linked. This means that while the same circumstances exist, they are not debilitating as other forms of Autism.

Christopher began being observed  by therapists two years before her was officially diagnosed at the age of four. 
Unfortunately, I was 13 or 14 years old at the time, fully immersed in my own world and problems as a freshman in high school and unable to fully grasp the situation. However there were certain things that even I look past.


Before We Knew

The most prominent problem was that Christopher wasn't talking. At the age of two he was still (for the most part) making the same basic sounds he was as a baby, occasionally stumbling over the usual words "Mom", "Dad", and "no." He constantly had ear infections and just dodged having tubes in his ears, so we assumed the infections were causing hearing problems and difficulty interpreting basic language.

When doctor's were unable to find a physical reason for his silence, they recommended psychologists who immediately suspected a neurological problem. The problem with Asperger's is that in most cases there are not any physical signs of the condition, especially in a two year old. With the brain just beginning to enter a major stage a development, there's not much that can be done until the child is a bit older.






Things were at a stand-still for a year or two, but other issues starting presenting themselves. As he entered the toddler stage, certain patterns of social disengagement and alienation occurred. Christopher had no desire to interact with other children, or anyone except my parents for that matter. He had major separation anxiety and was very attached to my mother mostly, considering she was the one home with him for most of the day. He started developing a very strict daily routines that if broken resulted in extreme tantrums that resulted in hurling himself to the floor or objects into the air.

My mother was almost never able to leave the house except for grocery shopping, which she waited to do after he was in bed and my father was home from work. My father was exhausted dealing with the balance of assisting my mother and keeping his appraisal business afloat at the beginning of an economic crisis. I couldn't have friends over and seldom spent nights away from home as it conflicted with Christopher's schedule.




Early Diagnosis


He was finally diagnosed at the age of four, just in time for him to enter school. This was an entirely different ball game. My parents were against the idea of medicating their four year old child, and used the old "wait and see" method coupled with intense speech and occupational therapy.

We waited, we saw, we worried. He behavior reached new heights. My mother was called almost daily to come remove him from class due to the tantrums and other forms of anxious behavior  He missed a great deal of school due to therapy appointments, doctor follow-ups and just "bad days."

The first school was unequipped to handle the situation and suggested homeschooling. While the option was briefly considered, my parents instead opted for a transfer. A new elementary school had opened that was said to include an entire Autism accommodation program for students like my brother. He was to be enrolled in a class of less than ten children all with varying circumstances of Autism spectrum disorder. The program also entails "inclusion" classes where he would have one or two subjects with regular students.

Coincidentally, this was the same school I was working at as an after-school teacher. I had just graduated high-school and was living on my own, not completely aware of how far his condition had escalated.
While Christopher was not enrolled in the after-school program, I was still able to see him in the later parts of his day.

It didn't take long before I saw what he had become. On most days I arrived to the elementary around the end of lunch-time. There were a couple of occasions of which I entered the school to immediately notice my brother, hysterical and corned in a hallway surrounded by the principle, assistant principle, teachers and lunchroom monitors attempting to calm him down from his "bad time." At the time it didn't take much to upset him -- another child could brush his shoulder; the texture of his food wasn't pleasant; he had a different teacher, or the lunchroom was too loud. Problems could even start before he got there whether it was waking up at the wrong time, his socks were bothering him or any other number of things.

Even as his sister, there wasn't much I could do at this point. Before I graduated, I was a part of my high school's drumline and entering relationships that left me away from home the majority of the time. Once I was living on my own, I was even further distanced from him and no longer a part of his routine.
We called each other "dude" up until a few years ago as he still couldn't say my name and I couldn't figure out whether or not to call him Christopher or Chris. (I won't lie, he's still "Dude" to me)
Sometimes my presence comforted him, but some days there was nothing anyone could do.

He just couldn't cope with such a public setting of school, and home wasn't much better. He was eating right, as he couldn't handle the texture of most food. He hated his clothes, not being able to handle tags in his shirts, the seams in his socks, the laces on his shoes (which he still couldn't learn how to tie), and couldn't filter out all the sounds around him, constantly panicking about how things were too loud and he couldn't hear himself think.

He was miserable, and it was miserable for us to see him suffering. Something had to change.






This was a group effort from everyone involved in his life. Both the doctors and the school basically gave my parents the ultimatum that he either had to start medication or start home school. Let put a disclaimer on that statement and say that to my knowledge it is not legal for school to require medication for enrollment of special circumstance children, it was just apparent to everyone that further efforts to continue without out would continue to fail.

Medication

I took a lot of strength from both my parents to bite the bullet and subject their child to drugs that will forever be "experimental" on children. Giving an 8yr old anti-psychotics is completely different than giving them to an adult. And yes, you read that right. Anti-psychotics. That experiment only lasted a few weeks as it turned my brother into a zombie. It not only took away the majority of the anxiety, it took his personality with it. He slept and slugged around with no interest in anything. Other medication trials have included a number of different anti-depressant, obsessive-compulsive type drugs. While they finally seemed to have found one that shows positive results with little side effects, dosage is tweaked from time to time to accommodate his physical and mental growth over the years.


School


The next step was to change how they approached his education. This present year has no longer has inclusion classes, which seemed to be the center of most of his incidents. He began only going to school for two hours a day and taking the rest of his work home. The plan was to slowly increase the duration of his stay by half an hour every few weeks. If it pushes him too far, they drop it back down. Major changes to the schedule were usually the result of effects from a new medication that was doing him any favors. One medication made him bounce off the walls, another made him violent and hit his teacher and rip posters off the wall, and another made him half-asleep most of the time. School work itself isn't really any issue. He doesn't enjoy it, but what kid does? He has trouble writing with paper and pencil, concentrating too hard on making letters perfect and writing in straight lines. Luckily, our generations dependence on technology actually works in his favor. All students, not just special needs, are now allowed to bring their own laptops, tablets or whatever they might have to help them complete their school work. This concept blew my mind and how the moderate them playing vs. working is beyond me...but in the case of Christopher it's made a huge impact.


Therapy

The most important, and in my opinion was has made the biggest difference is therapy. He has continued speech therapy, finally finding an instructor who not only understands his needs but has made it enjoyable for him. He has made leaps and bounds and people who have just met him don't immediately recognize any difficulty. I still notice, but I'm sister. He stills stammers on half his words and starts his sentences over and over until he can say them perfectly. It can minuted for him to finish one thought sometimes, but it's worth listening to what he has to say. He's incredibly brilliant as characterized by most children with the disorder. He does fixate on one interest in a very intense manner, and will happily spend an hour on the phone trying to tell you the entire backstory of his characters of a story he's written or from a game he's playing.

In addition to speech therapy, he has occupational horseback riding therapy. Two times a week he attends Iron Hearts, a non-profit horsemanship facility dedicated to offering therapeutic "equine-assisted" activities for special needs children and adults.  



I can't fully express how grateful my family is for such a program. This has helped him in so many ways, from helping him to learn patience, persistence, and even to just relax and "ride with the wind" as some might say.

It has improved his social skills and even helped him get over his fear of dogs!


(If you're wondering why's there's a large heart over my mother, she's camera shy so out of respect I won't show her without her permission.)







It's been a long curvy road for Christopher, and it's only just beginning. He comes so far from barely speaking, only wearing under-armor clothing and almost only eating bread, to engaging in conversations, making a couple of friends, dressing like Daddy and trying new foods each month. He still has both good days and bad and as he grows older the line between normal behavior (or misbehavior) and his condition will grow more faint.  

In a couple of years he will be a teenager, facing the cruel world of middle and high school where even "normal" kids can be picked apart by those other teens who find themselves superior. While I'm incredibly excited to watch him continue to grow and progress, and I am terrified for him. His life isn't considered average, and up until now he's had no choice to live a pretty sheltered existence. He'll soon enter an unfiltered world of kids who may or may not accept him for who he is. I know both there are now both middle and high school programs catered to Autism and similar conditions, it's just hard to say how it's all going to affect his social skills in the long run.
He's knows he's different, and he's even said "I don't really like myself." Whether it was the medication that made him say it, or whether he really meant it...I can't even tell you how heartbreaking that is to hear from ANY child, let alone my own little brother.

It's been a battle for all of us well. My parents have overcome the financial struggles, the stress and alienation involved with the circumstances while remaining a positive, hard working, faithful. Many parents in similar situations want to blame themselves or each other for their situation, but hopefully understand that they are doing everything to can to maintain a tight family unit. In a day and age where divorce is just about as common as marriage, I'd say they're one of the strongest couples I know.
Let's not forget they still had to deal with me from time to time. :P

As for myself, I still feel like I'm on the outside looking in. It's hard enough to keep a strong relationship with a sibling who 12 years younger, let alone one with a special personality. When Christopher was a baby, I had all these grandeur thoughts of playing games with him, taking him out for ice cream, helping him learn how to drive, giving him relationship advice and watching him grow up and have a family.
I'm not saying those things don't or won't happen, things just didn't go "as planned." But that's life! And don't worry, I've realized that too. I can't deny that I use to struggle with feelings of jealousy from my friends, being so close-knit with their brother's and sisters while I could barely understand mine. 

In the end it was just another check-mark on the teenage angst checklist. Now that I'm growing older, struggling with my own chronic illness, and involved in a relationship that's preparing for marriage, I feel the distance in our relationship more than ever. I only see him maybe once every other month. And it's true that our time together is still spent walking on eggshells, only speaking and acting a certain as to not upset him, but you know what? He's the only brother I've got, and I'll take it or nothing. I am so proud of not only the progress he's made, but of him as a person. He's a great kid and I'll love and protect him to the end.





Light It Up Blue!



Whether you're painting your nails blue, walking a marathon, or donating money to the cause, I hope each and every one of you will take the time to use your resources to raise awareness for Autism.

You've already done so much by taking the time to ready my brother's story, and I thank you for that. I know it was long, but I really hope you have a better idea of why this issue is so important.


For more information on how you can help the cause, how you can donate and other resouces,
 please visit AutismSpeaks.org and LightItUpBlue.org.


Thanks for reading!

-Melody

4 comments:

  1. Wow, this is such a beautiful post! As a mom with an autistic son it's interesting to read the perspective of a sister. I just had a little girl and, like you, there is quite an age gap with her brother. I often wondered what their relationship would be like and how she would feel about him and likewise. I see that they adore eachother the same way you adore Christopher. Your manicure is amazing! I wish I could do puzzle pieces without stamping ;)

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    1. Thank you so much! I have come to realize that with the Autism he wouldn't be the brother I know and love. I hope your daughter will feel the same. Prayers for your continued strength in raising such a special family!


      I loved you stamped mani though! I wish I had the BM puzzle stamp! I only have an old mash set and the new Pueen plates.
      I think you could pull it off with the way I did it. I just free-handed side-by-side squares, and then connected them with a dotting tool.

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  2. Hi Melody,

    I got here from Llarowe's page. Thank you for sharing this inspiring story of Chris (Dude!) and I know it must not have been easy. You may feel that you are distant from him but I think he is lucky to have such an understanding and supportive sister who is helping to spread awareness for Asperger's.

    Wishing Chris all the best as he enters middle school, may he stay strong and continue to blossom and grow!

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    Replies
    1. Thank you for reading! I only wish I do more to make things easier for him.

      I appreciate you kind words and you well wishes for middle school. He still has 5th grade to look forward to, but time sure does fly!

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