Much Ado About Bullies....

This weekend makes the last weekend before sending the kids back to school. Everywhere you look in the media there are ads toting the "Back-To-School" mantra, expounding endlessly on the latest gadgets and gizmos and fashion fads that are guaranteed to get Susie and Johnny off on the right foot for a phenomenal school year. Everything we seem to need is mentioned in one ad or another. Everything except for one very important thing...

What about bullying?

Bullying is nothing new to the world of kiddom; I was bullied myself. I remember the name calling, the taunts, the jeers, getting reprimanded by my third grade language arts teacher for correcting my own workbook because none of the kids would trade with me, being picked last for gym class or anything resembling physical activity. I remember standing in the aisle on the school bus all the way home because no one would let me sit with them. I remember going to teachers and telling them what was going on only to hear, "Tell them sticks and stones." Which, by the way, I did. I remember going to the teachers again because the taunting isn't stopping and hearing, "Lorelei, nobody likes a tattletale." 

Somehow, in the midst of it, I pressed on and muddled through, developing a bad attitude in places. I didn't appear any worse for the ware until my own son was bullied.

Jordan was diagnosed with Asperger's at the age of eight. After Matthew's diagnosis I became a bit more observant of some "quirkiness" that Jordan had been displaying. I came across a few articles pertaining to Asperger's and, as I read it, was blown away at how much Jordan fit into these categories. After an evaluation, the diagnosis was confirmed. And that's when the trouble began.

Around this same time, Ira and I were going through our own issues (we were separated; also another post) and on top of this plus the Asperger's diagnosis, Jordan was said to have clinical depression. I made it a point of speaking to Jordan's classroom every April during Autism Awareness month and I stayed in touch with his teachers throughout. Unfortunately, as he went along, some of the other kids knew which buttons to push and how to push them and they did so in a way that 1) they would initiate the problem, Jordan would retaliate, and 3) Jordan would get in trouble. 

Now please don't misunderstand. Jordan was not an angel and I was not naive enough to think otherwise. My father was a teacher and I knew from his experience as well as my own that if someone else's little darling was capable of pulling stuff, so was mine. But I also knew my son well enough to know that he didn't just do something because the wind was blowing; there was usually cause and effect. Apparently it was acceptable to shove him into the girls' bathroom and then tell the principal/vice-principal that "he just wandered in there, they didn't know why." It was acceptable to call him a "fat motherfucker" as he walked down the halls in between classes. Apparently.

And so I am getting phone calls and disciplinary reports on a daily/weekly basis. Because I have the audacity to question and say, "What happened that led to......?" I am the bad guy and not taking the situation(s) seriously. So of course it should have come as no surprise that on one fine afternoon, one of the boys that had been bullying Jordan was in the wrong place at the wrong time. Jordan, who by this time had internalized everything that had been happening and had gotten his gut full, dropped this kid. Dropped meaning he kicked this kid right in the family jewels. And the school was kind enough to take this along with the phone calls and disciplinary reports and ship them over to probate court. My son was being brought up on assault and battery charges.

No parent ever imagines this. Not in their worst dreams could they. But it was happening. My son was being charged with assault and battery. Court fees, fines, attorney fees (we had a court appointed attorney), none of which we could afford. Community service, meeting with a P.O., going through a court mandated class which, to me, was a glorified DARE class for ten weeks...these were our reality for nearly six months. I remember sitting with Jordan in that court room before the Judge (who was so kind to us) with my stomach in knots wondering what was going to happen to my boy. I put my Poker face on and muddled through but my insides felt like raw hamburger. I was scared, sad, and pissed off all at the same time!

I remember asking Jordan, "Why didn't you tell someone what was going on? Why didn't you tell your teachers this was happening?" Jordan looked me square in the eye and said, "What good would it have done, Mom? They wouldn't have believed me anyway." What do you say to that?

We somehow pressed through. We attended the class and graduated. Jordan met with his P.O. who was, I found out, one of the sweetest ladies I'd ever met. He dove into his community service with both feet, working so hard that by the time it was done, he was off probation three months early which meant no more money was owed. Good thing too, because I struggled to pay what I did. Jordan, however, was not the same and I knew if he stayed where he was, he'd be a statistic. 

In the midst of all of this, I had called a local charter school and asked about enrolling him. I liked the curriculum, the smaller class sizes, and it sounded like the right fit for him. I pulled his records from the middle school and faxed them over along with the application. I got a call from them one month later telling me there was an opening available if we wanted it. I accepted and Jordan never went back to the middle school. He graduated from Concord Academy Petoskey in June 2012 and will be attending Michigan Career & Technological Institute for web design this December.

Jordan was one of the lucky ones. Other young people aren't. Bullying is on the rise and with it the suicides of those being bullied. Just recently a 15-year-old student in Greenwich, Connecticut killed himself...on the first day of school!!!!! His classmates believe bullying played a part in his death. There are so many more that I'm sure go unheard of.  My question is, why are young people basically being bullied to death?

Sooooo..............here is my question for anyone who has stayed with me this long...............

How then do we equip our children to deal with the bullies that we know are out there? How do we equip ourselves? How do we help our children to see that it does indeed get better?

Momma's a 33!

So I retook the test that I had taken at www.aspergertestsite.com. The one where I had scored a 30, a borderline score for Asperger's. As I was taking the test I decided to be a bit more honest with myself when answering. My score? 33.

A score of 32 or above is the official criteria for Asperger's. I was a 33. I am a 33! Remember when I'd said I was not surprised? That's still true. At the same time, my first thought was, "Wow!" 

I've spent the last fourteen years as an autism parent, advocating for my boys, attending IEPs, fighting the schools (well, one school in particular but that's another post). I've read and researched and studied and sobbed as an autism parent. Question after question after question..

Strangely enough, when I shared this revelation with my mom and my sister, they didn't seem all that surprised. My sister pointed out, "You always had your nose in a book. You don't like change and when your mind is made up to how things are going to be that's how it's going to be!" Scripting lines from TV and movies...reading Dad's King James Version of the Bible before I started school (whether or not I understood it is another matter)...grouping books by the author, records, cassettes, and eventually CDs by the artist, movies by category...being socially awkward and awkwardly social as I shared in another posting...preferring bookstores, libraries to nightclubs and bars...struggling with eye contact and reading the faces of others...yeah, it all makes sense now.

So now with this revelation, does this mean my boys are where they are on the spectrum because of where I am? There is a genetic link after all. Has a specific gene been pinpointed? That I believe is yet to be determined. I suppose I could blame myself and say it is my fault, that some "defect" within me is what led to Jordan and Matthew being on the spectrum. Autism parents have enough to deal with and we struggle enough without self blame and guilt being added to the mix. The debate over the exact cause(s) of autism and autism-related disorders has been going on and will probably continue to go on long after I am a memory. What matters to me is where do we go from here? What can we do to help our children? What can we do to help each other? 

And how can we understand each other?

Momma May Have Asperger's.....Who Wants Pie?

A few nights ago while perusing the news feed on my Facebook page there was a link to a page called Asperger Test Site. At this site there was a link to a page where an online test could be taken for those who suspect they may have Asperger's. I was curious. Maybe a bit too curious and decided to take the test. A score of 32 was pretty proof positive that said test taker had Asperger's. Scores of 26-31 were borderline. I scored a 30. 

30...let me chew on this a minute...30...borderline Asperger's. It's definitely not the worst news I've ever been given. Actually the more I think about it, the more sense it makes to me. In an odd sort of way, really, just knowing this brings a sense of relief. 

I understand a bit better why I was able to memorize "The Wizard Of Oz" and script lines from some of my favorite cartoons and TV shows but couldn't tell you what we'd discussed in class just a few days before. I understand why public speaking was always such a nightmare for me, why when I would have to give speeches for Mrs. Osterberg's freshman English class and later Mr. Harris' Speech 111 I'd look above the heads of the people I was speaking to. Many of my classmates had commented that I was rolling my eyes. I might have been. All I remember was cringing at the very notion of looking these people in the eye. I still struggle with eye contact. I've learned to adapt; working retail and being a mom kinda flings you face first in that arena. Even with the people I am the most comfortable with, close friends and family, I struggle. And when I am in a stressful situation, the struggle is even greater. 

I understand why I was socially awkward and awkwardly social. I still am. Small groups--ten or less--are doable. Beyond that, I am a fish out of water. Conversation in certain situations is hard for me. Meeting people and getting to know them does not come as easy as I once thought it did. I prefer a library to a bookstore over nightclubs and parties. When I find a subject (or something that I've experienced) that I am passionate about or a person I am interested in, I tend to focus almost to the point of fixating on these things. I will research and exhaust them until I am about exhausted. As I read my mind turns into a movie screen and I can almost visualize the characters and settings and what is happening in between. Facial expressions and emotions are not the easiest for me to read and if you say something to me you'd better mean what you say and say what you mean. The clutter of background noise is almost overwhelming. Anymore clutter as clutter is overwhelming. Do all of these things make me an Aspie? I'm not exactly sure. Truth be told, I would not be surprised if I were.

Does this also mean that I am the reason for my boys being where they are on the spectrum? That may very well be, as there is a genetic link with autism and its related disorders. But what about the families whose children are on the spectrum and there is no other hint of autism whatsoever? Doesn't quite clear that mystery up! 

I like to think that, should I be an Aspie, I am able to "get" my sons. I pray that I am able to understand them even the tiniest bit better. And maybe possibly to love them even more...

Remember This...

   I've no doubt that somewhere on your journey as an autism parent (or a parent in general) that you have been questioned as to what it is you actually do. Maybe you've even been told you do nothing. Maybe your parenting skills have been questioned to the point of being challenged. Maybe your skills at running the household have been declared a joke. Maybe____________________________________________________; you fill in the blank. Maybe it's a little of everything or a whole lot of everything. Whichever one(s), you may have been left feeling empty and broken. You may be second guessing yourself as a parent, asking yourself what you did or didn't do or what you did or didn't do enough of. Feelings of guilt may creep in and you may find yourself wondering if what was said to you was the truth. Believe me, I know.

    It is so easy for those without children on the spectrum, and for that matter without children in general, to point out where they believe you fall short. They are not walking in your shoes; they have no clue as to the road you've walked and are still walking. They have no idea what has brought you from point A to point B. With that, from one autism parent to another, here is what I would encourage you to remember--

    Remember who it is that has been there from day one, from the moment the word "autism" first assaulted your ears and slowly worked its way to the core of your being. Remember whose tears have been shed at the news your child is "different". And then remember who has stood and fought.

   Remember who it is that has lost sleep more nights than you care to count and through weary eyes manages to press through the routine of daily living, be it work, the household budget, the kids' schooling, housecleaning, nonexistent appetites and bedtimes that exist in thought only. 

   Remember who has dealt with the loneliness and isolation that seems to accompany the world of autism, of having to leave social gatherings early because the noise and surroundings overload your child's circuitry and having to endure the stares, glares, snide remarks, and the sad delusion that autism is somehow contagious.

  Remember who has researched and studied autism, learning what it is and what it isn't. Remember who has been an advocate for your child in and out of the classroom, fighting to give your child every opportunity that could possibly be afforded. 

   Above all, remember who has loved your child into the person that he or she has grown into. Remember who has wiped a runny nose, dried teary eyes, and who has delighted at the sound of hearing your child's voice for the very first time. Remember who has sung lullabies, whispered night time prayers, and chased monsters out from under the bed. 

  Remember who it is that has been there!

  And the next time you're made to feel like you're a do nothing, remember this and know that you are everything!!!

    

Just Another Day In The Clubhouse

    We're a rather unique group here at the Clubhouse. We have Asperger's, autism, ADHD times two, Diva Disorder (I swear, this is an actual diagnosis somewhere!), and diabetes. The diabetes belongs to the Clubhouse's vice-president, my husband Ira. He was given the official word in 1996 when Matthew was a year old but it wasn't until roughly seven or eight years ago that it reared its ugly head. At the tender age of 45, Ira has had both retinas reattached, cataracts removed, multiple MRSA infections, a device put in his stomach in order for food to be processed, dialysis three days a week for the last 6 years, and his right foot amputated below the knee. 

     Before Ira lost his foot, he'd been on a waiting list for a kidney transplant but went off because of not only his amputation but other health issues. His blood pressure couldn't make up its mind whether it wanted to go through the roof or drop through the floor and his blood sugars were out of control. Since his amputation--two years ago this October--both his blood pressure and his sugars are at the very least stable and he is well enough to start back to work. That's one piece of good news.

     The other is that he is also in the process of getting back on the transplant list. In order to do that, there are a couple of steps that need to be taken. One is a stress test, which he goes for tomorrow afternoon. The other is a colonoscopy, which he had done this morning. I have to give him credit--he maintained a good attitude through it all. 64 ounces of Gatorade spiked with Miralax and then another laxative chaser spread out over the course of 4 1/2 hours. The actual procedure didn't take as long as I thought. I got him to the hospital at 7:30 this morning, I was called back at 9:10, and we were allowed to leave around 10:00. As long as the results of both tests are good, he will be placed back on the active transplant list. Since he's been on dialysis for the last six years, he will be placed at the top and could have a kidney by the end of next year. That, to me, is the best piece of news!

     Along with everything that has gone with the autism factor and daily life in general, I have watched Ira's health spiral in so many directions. Dialysis for him begins at 6:30 in the morning and usually ends by 11:15 three days a week and because we have only one vehicle, I'm up when he's up, I get him there and pick him up. When he's been unable to drive and had appointments, I've made sure he's gotten there and everything else in between. He doesn't frequent the ER/hospital like he did but when he does, it's a roller coaster because I never know for sure if they're going to keep him and what they'll find should they keep him.  It gets scary, it gets lonely. I can't remember a time when I wasn't exhausted. Then I hear, "Chin up, it could be you!" Really? Seriously? Guess what, buttercup? It IS me right along with him! Right along with the boys. I remember after Matthew's diagnosis asking the "why" questions--why him? Why us? I was told that this didn't happen to "us". Well, yeah, it did...because WE are the ones to advocate for him and WE are the ones to adapt to the social/sensory issues and WE are the ones to deal with the whispers, the stares, the judgmental glances, the loneliness and the isolation...and so on, so on, so on. It's called a ripple effect, like stones being skipped across the water. 

      Oh my.......I think it may be time for coffee.....

My Puzzler Is Sore

   It's a Wednesday morning. I'm making my way through the coffee pot while my nephew and my younger kids are playing the latest game craze--"Minecraft." Jordan, my 19-year-old Aspie is upstairs either in front of his TV or on the computer "YouTubing" while Matthew, my 17-year-old with autism, is also upstairs most likely plugged in to his MP3 player. I feel unusually drained this morning. I feel depleted in my head and depleted in my soul. I feel like I am neck deep in water but I'm not getting wet. I feel empty and right now, I don't want to write about autism or anything remotely related to it. I don't want to think back to having to scrub dried poop off the walls because Matthew was going through a smearing phase or about having to throw towel after towel away because it had been used to wipe his butt off. I don't want to remember the judgmental glances and the snide remarks and people pulling away from us because Matthew is in the middle of a meltdown and, God forbid, it all might rub off on their perfect little darlings. I don't want to recall having to leave social gatherings almost as quickly as getting there because the noise of the surroundings is overloading Matthew's system and he's gearing up for a major meltdown. I don't want to look back and re-live my boys struggling to make sense of the world around them, a world that isn't as willing to adapt to them as it is to force them to adapt to the world. I don't want to see them on the sidelines while all around them there is this group and that group and it is painfully obvious that they don't quite fit in with any of them. I don't want to piece together this crazy walk that my family has been on for the last fourteen years. Some days, I just want to forget and this is one of those days. This is one of those days when I want to just drink my coffee, close my eyes, and forget. Forget the IEPs...forget the awkwardness...forget all of it! 

      But....I can't forget...however much I want to...I can't forget. I won't forget. And now all I feel is sad. 

Sensory And Sensibility (A/K/A Can't Touch This)

    Autism, strange as it seems, is like a diamond; there are many, many facets. Most days it's more like an onion; layer upon layer and every one stinks!
    
    I came to learn that more than just speech and language and cognitive development were affected. Matthew's appetite was affected as well. To say that his appetite sucked was a bit of an understatement. Starch and sugars were the staples of his diet. Canned corn, macaroni and cheese, Lucky Charms (minus the cereal; Matthew would go through and eat the marshmallows and leave the rest) without the milk, Kool-Aid, juice, water...these were just a few of the limited foods on Matthew's plate each day. He ate pizza without the topping and spaghetti without the sauce (it's only been within the last two-three years that he will eat spaghetti with the sauce). He enjoyed ice cream and Jello Jigglers. To make up for what he was lacking in his diet, I started him on chewable vitamins. The first time he bit into one, he made a face. He kept that face all the while he chewed. After that, it seemed easier and he never fought taking them, much to my relief.

    In between, Matthew began chewing. Not his fingernails or even small objects. He chewed his shirts. He chewed through the seams, holes bigger than anything I've ever seen made by moths. After losing count of the number of shirts I had to throw out, I talked with my husband. At that time he worked at at home for the physically/developmentally disabled and one day he happened to mention Matthew's chewing to the R.N. who was also a distributor for a health and wellness product called Herbalife. She had mentioned  a product called herbal aloe concentrate and suggested putting a capful in everything he drank. Aloe, of course, is a healing agent and because many individuals on the autistic spectrum had food allergies of one kind or another, the aloe would soothe and heal the digestive tract. I was using Herbalife at the time and I was desperate for something, anything to help him. I had tried the herbal aloe for myself and loved it; it reminded me of lemon juice. And so I bought it for Matthew and as recommended I put a capful in his drinks. From Kool-Aid to juice to soda to water, if it was a liquid, it was spiked with herbal aloe. At first I couldn't tell if  it were making a difference. But with each day, I noticed that Matthew's chewing had slowed down. Within a month's time, he stopped chewing altogether. 

    And then there was the matter of touch.

    Early into Matthew's diagnosis, I was reading anything I could get my hands on that had even the slightest thing to do with autism. A particularly engaging book was Temple Grandin's autobiography "Emergence: Labelled Autistic." She talked about how certain sights and sounds were too much for her eyes and ears to deal with and how her clothes felt like sandpaper against her skin. Matthew hated anything that seemed to hug tight to his body. He preferred loose fitting shirts and shorts and pants with the elastic waist bands. Blue jeans? Forget that! If I said, "Matthew, I love you," he would do one of two things. He would A) run down the hallway screaming or B) throw himself down on the floor and hit himself in the forehead. Trying to hug him was a nightmare. Just as when I would say "I love you," he would pull away from me and throw himself down, screaming and crying. I was heartbroken. What was I doing wrong? Why was he acting like this with me? Didn't he know I loved him and was just trying to show him that? I'm sure somewhere inside of him he knew. But what I didn't know was that, as with most autistic individuals, there were sensory issues going on. I didn't know that every nerve in his body was wide awake and going in full force, that his hearing as well his eye sight was keener and way more sensitive than yours or mine would be. I didn't know that the slightest touch, such as a hug which would feel soothing or comforting to someone else, would be a source of pain for him. I knew nothing of any of this and until I learned, and I eventually did, I took his screams and outbursts personally. 

     Of course now, Matthew is one of the biggest cuddlebugs you've ever met in your life but that didn't happen overnight. It didn't happen by him being forced. It happened when I learned to make myself available and let him come to me. How did I do that? I'm really not sure. A series of steps, perhaps. Learning that, yes indeed, my son loves me but he has to show me in his way on his terms. And oh, the bumps and bruises acquired along the way!

My Son Is Autistic...What Now?

    If you've ever seen the movie "Megamind," no doubt you're familiar with the character of Megamind, the villain-turned-superhero and his dolphin blue bulbous head. Even before Matthew was diagnosed with autism, my head felt about that size. His dad and I knew something wasn't right in spite of the assurances from the doctors we took him to. What little speech he'd had which was pretty much babbling, was gone by the time he was two. He didn't play with his brother; he played beside his brother. While his brother was busy pushing his toy fire truck across the floor, Matthew was carrying around the ladders that came with the fire truck. Rather than pushing his toy cars and trains across the floor, he would hold them to his face and spin the wheels. Before I could even get him ready for bed, he would circle the living room as though he were chasing his shadow. These were the days of VHS and Matthew would run his tongue along the bumps on his videos. When I would go to hug him or tell him I loved him, he would pull away and either run down the hall screaming or throw himself to the floor and hit himself in the head. I took it personal, not yet realizing that there were sensory issues going on inside of him that I had yet to understand. In my ignorance, I just figured he hated me!
      
     Unlike his dad, who was getting his own education through his job at a home for physically/developmentally disabled individuals, I was not ready to accept what I felt gnawing at my insides. The internet highway was at the top of its game and I took to the "open road" as it were, researching every site and source I could possibly find. All arrows pointed to autism and each time my eyes fell on it, my heart sank and my stomach twisted. What else could it have been? His dad and I were not buying the "boys-develop-slower-than-girls" adage anymore, especially when by this time Matthew was regressing more than progressing. After a hearing test ruled out a hearing loss--his hearing was actually off the charts--he was referred to a pediatric speech/language therapist who, after observing him, referred him to a pediatric neurologist who confirmed that our son was indeed autistic. I should have felt relief--instead, I felt like the wind had been knocked out of me.

    Every parent, whether they'll admit it or not, has hopes and dreams for their kids. They hope and pray that their kids will take a higher road than they did. They pray for families and success and happiness for their kids. When a parent receives a diagnosis of autism (or any disability) for that matter, those dreams seem to come to a stop. I used to say it was like being in "Invasion Of The Body Snatchers," where an alien intruder broke into my home, took my son, and left behind a shell that merely resembled him. I grieved. And I cried. I couldn't even look at pictures of him as a baby or a toddler without breaking down. When did I stop crying? What day is it?

     Back to the computer...back to the research...back to the Megamind sized head!

Welcome To "The Puzzle Club."

Can you keep a secret?

Sssshhhh.....come closer.....

I am an autism mom. And I have absolutely no clue as to what I am doing!

There!
I've said it!

I became a reluctant member of "The Puzzle Club" when my now 17-year-old son was 4 1/2 years old. Guess what? I had no clue what I was doing then! The word autism to me was not only foreign, it was a word I greatly feared. My understanding was limited, my only exposure was Dustin Hoffman counting down the minutes to Wapner and waxing distress "because these were definitely not his underwear." I remember watching this pitiful yet oddly endearing character and saying to my best friend at the time, "I'm not sure I could handle a child like that." Had I known the challenge I was throwing out to Almighty God, chances are, I would have never uttered those words. But hey, I was young and oblivious to the power of words and even more oblivious to how my life would one day change. In April 2000, my son Matthew was diagnosed with autism. Less than three years later, his older brother Jordan was diagnosed with autism's cousin Asperger's. And life has been one sideways puzzle piece ever since!

I have been reluctant to share my confessions, observances, and overall life as an autism mom until recently. I am not a supermom. I have no miracle cure. My boys have not been "healed" or "rescued" from this enigmatic intruder. I can't offer any new or different information. So what could I possibly have to say that hasn't already been said? Furthermore, does anyone want to hear what it is I have to say?

With that, "The Puzzle Club" and these scribblings have been born. For better or for worse, I am putting it all out there with the hopes that what is shared is will be a help and a blessing to those who receive. While I cannot promise daily scribbles, I will do my best to post on a weekly basis. 

So, welcome to "The Puzzle Club." 
Pick your pieces and together we'll help them to fit!