Medals, Ribbons, and Warriors...oh my!!!

If you have spent any amount of time at the Clubhouse at all you may well know that the Vice-President and I are Special Olympics coaches and Matthew is into his second year of competing. With that being said, these past few months have seemed like a veritable blur between practices and meetings with everything leading up to State Winter Games. 

I have to say Matthew is a die hard. Overall this winter has been the kind of winter most people can only imagine. The type of winter with just enough snow to make driving a winter sport of its own kind and temperatures that make you throw away the sunscreen. I think I can count on one hand the number of days where visibility was next to nothing and temperatures were cold enough to make your fingers almost snap off. On days like that my goal is to hibernate inside with a steaming cup of coffee in one hand and the remote in the other. Matthew is a bit more ambitious and even on the days where his breath could be seen running alongside him he donned his snow gear, strapped on his snow shoes, and ran like the wind all with a smile on his face. Two blue ribbons later at Area Games he still wore a smile but the truth of the matter is he wasn't smiling because of the ribbons. He smiled because of the fun of competing. Don't get me wrong, if he were among those to receive a ribbon or medal he wore them proudly and was all too happy to show them off. But he has always been happiest just being out there with his fellow athletes and participating.

By the time State Games happened at the beginning of February he was raring to go and I can honestly say to actually be right there "in the trenches" so to speak rather than on the sidelines observing as I was last year was different. Up at 6:00 to get ready for breakfast, getting suited up and heading over to the snowshoe venue to cheer on your athletes and to prepare those athletes who would be racing that day...yeah...there is work involved. Between time trials, the actual races, and the social events we were going well into the evening. Unlike the previous year where everyone, myself included, wore so many layers of clothes we were Randy clones (think "A Christmas Story"--"I can't put my arms down!") this year bore sunshine, little to no breeze, plenty of hot chocolate, and areas of slush. It was an awesome thing being there with the athletes, cheering them on, encouraging them, watching the camaraderie and spirit everyone displayed. Matthew went on to take fourth place in both of his races--the 100/200 meter races--but he felt like he owned the world.

State Games held much excitement and among that was the 40 year celebration of Winter Games in Michigan, 35 of those years being with the Wertz Warriors, a snowmobile team which makes an annual 900 mile run across the state to raise monies for Special Olympics. Pictures, autographs, snowmobile rides for the athletes all were the order of the day for these lucky individuals and Matthew was no exception. He climbed onto that snowmobile with reckless abandon and held on as though his life depended on it. When his driver pulled away all you could hear was "WHOO HOO HOOOOOOOOO!!!"

I admit it. I laughed. But only a little bit!

An Attitude Of Gratitude

So here we are at the end of another holiday and standing tippy toe on the crest of yet another. Yes, Thanksgiving here at the Clubhouse has come and gone with only bowls of turkey, stuffing, mashed potatoes and gravy, cranberry sauce and yams playing peek-a-boo in the fridge to remind us of its presence. Which of course leads us to today--"Black Friday"--the day in which countless people across the country pitch tents, pack survival kits, and develop strategic battle plans which may or may not lead to the trampling and bruising of fellow human beings just shortly after giving thanks for the blessings that are theirs. 

Now, don't get me wrong, I was at the store today myself. Not necessarily taking part in the Black Friday rush but I did score a deal or two here and there and there is nothing wrong with that. I just don't do the pitch a tent, stand in line, draw up a plan thing for the very reasons you'll never see me out hunting or fishing--it's too flipping early, it's too flipping cold, and I'm just not going!

With this being said, it got me to thinking. There has been a challenge making its way around social media this past month called the 30 Day Gratitude Challenge. The idea being to post something every day you're thankful for in either pictures or in writing. It is a way of getting us to focus on our blessings and what we have been given rather than on what we don't have or wish we had. It's kinda disheartening we have to have challenges issued in order to count our blessings (I am as guilty as anyone) but that's a whole other posting.

This past Wednesday Matthew brought home a couple little goodies he had made at school. The first was a turkey he had made with construction paper, crepe paper, and a kitchen tile he had colored purple. The second was a worksheet with pictures of different families he had cut from magazines and glued to the top. At the bottom were the words "I'm thankful for...." and on the pre-printed lines were the words "my family." 

Rewind about 13 years when his dad and I are being told by a speech and language therapist what Matthew will never do. How he will never speak and if he should acquire speech it won't be anymore than a word or two here and there. How basic daily living skills, should they be acquired, will be nothing short of a miracle. 

Fast forward to the present where this same boy (excuse me, young man) is one of the main doers of dishes and changers outer of the laundry, where he wipes the table down before and after meals. Where coffee is made and his dad's Tums (three to be exact) are given to him each time he eats. Where school clothes are laid out the night before and, along with his older brother, the dogs are walked two and three and four or more times a day and, while he is not quite up to two way conversations yet, his vocabulary grows a word or more at a time. Where he is reading basic signs ("STOP" "EXIT" or as he says it "E-X-I-T..EXIT...get out!") and writes out grocery lists. This same young man showing gratitude for his family. Truth be told, I am grateful for him. Maybe more so. 

I am grateful for his joy, his peace, his overwhelming happiness in the world that for all intents and purposes makes no sense. I am grateful for his innocence, his purity, his smile and his laughter. Even when he is visibly bothered--too much noise, too many lights, the night is setting in and he is anxious to either go home (if we're out) or for one of us to get home (if Dad or I are out)--there is still something...I am not even sure what to call it..all I know is it's there and I am almost envious!

So this year as I count my blessings, I think back to being told what he would and wouldn't accomplish and as I do I am holding that piece of paper with his handwriting telling the world he is thankful for his family. And I smile! 

I can't help but wonder what that therapist would think if he were to cross paths with Matthew again!

Teacher Or Student

I am two weeks into my new job..correction...my service as a literacy coach for at risk students with Americorps. I have to say that so far, seeing as how my toes are still being dipped into the water, it has been an amazingly eye opening experience.

For one, I am based at my elementary school. When I say my elementary school I mean that once upon a time, what I thought of as not so long ago my teeny little feet found their way up and down these exact same hallways. I can remember the library being about where the fifth graders are now with petitions for walls and everything being wide open. There were no lockers, there was no computer lab, and there was maybe one copy room. I learned my ABCs with the help of some friends we knew as the Letter People--Miss A who said "Aaaaaachoo!" Mr. M with his munchy mouth. We kids loved them. The teachers, I'm sure, not so much, seeing as how they were inflatable characters who were strategically placed around the tops of the walls in the classroom and air liked to leave them on a regular basis. But I digress...

Not only am I amazed at the physical changes of the building, I can't seem to get my head around the way kids learn now. We had the card catalog and Dewey Decimal. Kids now have iPads and Google. We used the dictionary. Computers and mobile devices all over the planet have these things called spell check and auto correct. I did math with my fingers, scratch paper, and a whole lot of crying. Today there are calculators that do everything except clean your house. I am in no way saying these are bad things; merely that they are different.

I am also in awe of the way most of the students interact with each other. One of the students I work with is a 5th. grader who is ESL--English as a Second Language. She has only been in Michigan for about five-six months and suffice it to say her English is broken. She is quiet, though not necessarily shy. She is focused and hard working. During my first week I spent some time observing to get a better idea of how I could work with her and was happy to see some of the other students were coming along side of her during in class activities and how they mingled in the halls between classes. There is another 5th. grader who is in a wheelchair and I have seen students taking turns helping him get situated at his desk and making sure halls and walkways are cleared of obstacles for him. I gotta say, I find this to be pretty darn cool. 

I am taking time now getting to know these kids and to learn about them. I see a lot of need and even more potential. Two weeks in and I am already asking myself who is going to learn more as a result of this new service. The kids or me?

I guess that's another posting...

Learning To Walk And Lighting The Flame

Whew! What a day!

Earlier this afternoon my feet touched down on the campus of Central Michigan University for the first time since 1992 when I walked across the stage of the Rose Arena to receive my Bachelor of Arts degree. I looked around at the once familiar sidewalks I walked first as a four-year-old child and later as a nineteen-year-old sophomore and an old familiar ache settled across my chest as a tidal wave of memories about knocked me over. 

Memories of a four-year-old little girl playing on the playground outside Washington Court while her daddy was in class...of becoming inseparable from a feller named Inchworm, a Kermit the Frog green plastic riding toy that I used to wear a groove in the sidewalks surrounding the family housing unit my family lived in at that time...

...of pretending the closet in the bedroom shared with my older sister was an elevator...of using cardboard boxes and laundry baskets as a makeshift garbage can in the tradition of Oscar the Grouch...of hearing my mom and dad whisper about the Dracula like character--slick black hair, liquid paper white face, black clothing and all--who seemingly had been hot on my dad's trail in between classes, sometimes even after classes...of watching Mom and Dad packing up the apartment to move back to the great white North with me pitching a hissy fit every step of the way...after all, our little apartment would be lonely and I didn't want to leave...

...of attending my first opening football game of the season with my roommate and new found friend fifteen years later, enjoying hot chocolate and noshing on fudge following our team's win...trips to the Malt Shop and the SBX on the regular...the UC (Student Union as it was called back in the day)...3 a.m. fire drills...Secret Santas...the Fall Thing and Genesis retreats followed by Chapter Camp and the Narnia Trails with InterVarsity...Western Weekend...midterms..."study sessions" that were more like trying to see how many spoons it would take to devour a tube of chocolate chip cookie dough (the world may still never know!)...papers...poetry...chapters...finals...graduation...packing up the apartment I shared with my mom (yes, my mom) while throwing a hissy fit once again the entire time..not that the apartment would be lonely...I was pretty sure we were past that...I simply did not want to leave!

Fast forward to Thursday, May 28, 2015 at 6:30 p.m. at Kelly/Shorts Stadium where the feet of Matthew and over 2000 of his fellow athletes also touched down on CMU's campus where my feet, my mother's feet, my father's feet and countless others also trod. From my seat in the bleachers, the joy on his face could not be contained, his smile beaming as he gave high fives to anyone and everyone who would accept and receive them. The ache from earlier slowly morphed into a comfortable sense of knowing. As a little girl, my first steps were taken in the courtyard of Washington Court. As a young adult the first steps I took into the world of adulthood and independence were taken between Calkins/Trout Hall(s) to my academic homes which were Anspach and Pearce Halls. Now tonight I watched my son take his own steps of adulthood on this same campus, preparing for the Special Olympics. My feelings of sadness were replaced rather quickly with those of pride. 

My family and I are at the moment chilling in our hotel room. The Olympians are all in their respective residing places, hopefully resting up for the weekend events. Matthew's events are on Saturday. He will do the softball throw..he will run his meters...in between all of this when we aren't scoping out the events planned for family and volunteers, I plan to give my family the dime tour of my old stomping grounds. Meanwhile the Olympic torch, lovingly deemed the Flame of Hope, has been lit. I have no doubt the flame will be kept alive, faithfully attended, lovingly stoked as not to let the flames die out. Over 2000 flames were lit as they walked the field of Kelly/Shorts stadium. Every week, every minute, every hour spent in sweat equity getting ready for this weekend kept those flames attended, stoked, shining brighter than anything I can ever recall seeing before. First steps...flames of hope!

Let The Games Begin

I am the proud mom of an Olympian!

I shared in an earlier post that Matthew was a participant in the Special Olympic Winter Games, how he was photographed with Wertz Warriors and a reigning beauty queen. He had placed fourth in the 75 meter snowshoe race and second in the 100 meter. That afternoon while we were huddled around our hot chocolate there was talk of him being a part of the summer games which was a thrill to us.

Here it is now, the middle of May, and I am tickled pink to say that Matthew is weeks away from the State games in Mt. Pleasant, MI, my home away from home. Area games were two weeks ago in a charmingly not-s0-sleepy-anymore town called Cheboygan. Every Saturday leading up to May 2nd was spent at the recreation center and the high school track getting him ready. The softball throw...100 meter run...200 meter run...the Pop! of the starting pistol and off he went, the words of his running mate ("Go, Matthew! Go!") ringing in his ears, cheering him on. He would go the distance, stop, catch his breath, knock back some water, and do it again. The wind up, the pitch...okay, it went over everyone's heads a few times but just the same he did it. He finished at the Area Games in third place in the softball throw and first place in the 100/200 meter runs!

I am smiling as I type this but at the same time I think back to the little boy who once needed my help putting his Taz shorts on one leg at a time and for whom shoelaces were a nightmare. I remember him at the dinner table eating with his hands in a style reminiscent of Tarzan and how he clung to my neck for dear life at bath time because the water frightened him. I think of this and how far he has come. Not without blood...not without sweat...and for sure not without tears...but here he is.

Does my boy have a way to go yet? Oh yeah, just as we all do. But for as long as my Lord allows me to blow air past my teeth, I will be here to cheer for him...to work with him...to support him...and most of all to love him. Maybe even to run with him...

*sigh*

Autism, Steve Harvey, And Sister O'Dell

There are those who were born with silver spoons in their mouths while others seem to acquire them,

And then there are those such as comedian Steve Harvey who was born with a silver foot in theirs.

The comedian recently took to his radio show and, under the guise of his fictional persona Sister O'Dell, used special needs children as the source of some rather cruel material while his staff laughed and laughed and laughed. I was going to share the link here but...hmmmmmm.....the link is gone! 

Justly so, once this airing found its way to the ears of the autism community, the blood got to boiling. One autism mom took to YouTube, holding nothing back. She bravely gave it to Mr. Harvey with both barrels. So what if her remarks never made their way to his ears? She was her child's voice! At that moment she was a voice for so many who may or may not have had the words to speak for themselves and I applaud her!

I listened and as I did I heard how she began speaking softly, calmly, but by the end of the video her pain, her passion, her emotion resonated. I understand all too well.

Three days after Matthew was diagnosed with autism, I was told by the church I was born and raised in to take him and his brother and leave. I take that back. First we were told to wait in the fellowship hall until service was over. From there we were told to leave. Why? Because the Sister O'Dells of the group either didn't know how to deal or didn't want to deal with his autism. Because when the music stopped and the congregation stopped singing, Matthew didn't. Because it is so much easier to keep at arm's length that which you fail to understand rather than trying to understand it. I left in tears. That night I was up until midnight composing a letter to the pastor, calling him and the rest of the congregation out. For all the good it did. I received a response, the type that is meant to temporarily sissify you while a bone is being tossed your way all the while you know you aren't welcome. I never returned. 

I wish I could say this was my last type of rodeo but it wasn't. Until finding the church my family and I have been attending for nearly five years I spent the better part of my kids' lives being shunned by one church or another, even after they had been told and attempts were made to inform them. Apparently putting people out is easier than becoming informed and equipped. And it is way easier than showing mercy and compassion and making the attempt to place yourself in the other person's shoes. We sure couldn't have that now, could we?

I am all too familiar with the looks...the stares...the whispers...the judgmental airs. I more than know my way around the attitude that since my kids can't be controlled perhaps I shouldn't bring them out in public. Any time I have ever uttered the word "autistic" I am pulled away from as though somehow it's going to rub off. I know what it is like as a parent to watch my kids sit on the sidelines while the rest go on as if they aren't there because, to them, they aren't. I know what it's like for my kids to not be invited to birthday parties, sleepovers, or to just hang out. I know how it is to see the way my kids are looked at, like they don't have a right to be a part of society because the sights and sounds of certain settings and situations overwhelm their systems and the only way to make this point known is in meltdown mode. The hurtful, stupid, downright thoughtlessly cruel remarks made to me by adults who quite frankly should know better still resonate in my ears. Since the boys have become adults it hasn't gotten any easier. 

Matthew is 19, 5'10" with a full fledged man beard, strapping and handsome. He is vital and active, always looking to keep himself busy. He is loving and affectionate. But, though he be verbal, he struggles with two-way conversation. He will burst out in streams of giggles and laughter for seemingly no reason. He will go from stimming to dancing in a matter of minutes, all with joy on his face. Needless to say this elicits stares, whispers, and...well....you get the idea....

Jordan is 20, 6', freshly shaven, also strapping and handsome. He is my jokester and we are forever bantering back and forth. Newly employed as a cart wrangler at a local grocery store he is coming to understand work ethics and seeing the world from another perspective, that of a working man. He is creative, my computer geek. He is also selectively social, not mixing much when gatherings occur. Sadly, with all of the gifts my boy possesses, he lacks self-esteem and will sometimes script from other sources which leads to more stares, more looks, more whispers, more aloneness.....you get the idea....

Special needs parents have been referred to as "overly sensitive," not being able to take a joke. I can't speak for anyone else but when something is funny, I will laugh until I cry. Most days I laugh to keep from crying because that's the only weapon I have. Guess what, Mr. Harvey and Sister O'Dell? Stuff like this isn't funny! These are our lives! This is my life! Every bit of what you have mocked, I've lived! I've dealt! This is not funny! And I have news for you, Mr. Harvey, Sister O'Dell may be fictitious but you brought her to life and for her to spew the things she did, they were first in you. If they weren't, they wouldn't have come out your mouth! Don't insult me and the rest of the autism community by saying otherwise!

Here's a thought for you, Mr. Harvey, one that's just crazy enough to work. Why not take some time out of your star-studded life and walk with someone on the special needs road? Talk with them, observe them, interact with them. Forget you're a celebrity for a moment or two, remember where you came from, and engage them. Get to know them. Make awareness, understanding, and acceptance your mission. Then, having done all this, issue a REAL apology. Own what YOU not Sister O'Dell said. He may not be through with you...and really He's not...but you need to realize and remember ALL are precious in His sight...including special needs individuals and their families!

           

Just Light It Up!

How many autism parents light it up blue during the month of April? Show of hands...anyone?...anyone...?

How many choose instead to light it up with multicolored? Again...show of hands....anyone?...anyone...?

I am a mutant....I do both!

I have read the reasons why many choose to use the multicolors as opposed to blue and really, it makes sense but I am not here to dissect those reasons or to launch some sort of campaign or high spirited debate on the subject. I am writing this piece to show why I choose to do both and let the chips fall where they may.

Admittedly I have wondered why blue became the chosen color to represent autism, given the fact of it being a spectrum disorder. And then, considering the number of boys affected by autism and its related disorders (is it 54 out of the 1 in 68?), it made sense. I mean, shoot, I have a 21-year-old son who was diagnosed with Asperger's at the age of eight while his 19-year-old brother was diagnosed with classic autism when he was 4 1/2. In my household it has made sense.

Time has passed since my boys were diagnosed and more and more young ladies have been shown to be missed when being diagnosed and you almost have to wonder why? Some believe there is a bias in practices, criteria, and concepts towards the "conventional" (male)..((Dworzynski et al.,2012) while others believe the current screening instruments are not the most reliable in
identifying ASD in girls ((Andersson, et al., 2013) ). Still others believe girls may be better at adapting or camouflaging ASD traits/aspects than their male counterparts ( ( Dworzynski et al., 2012) ). Another belief is that girls with ASD have brains which differ anatomically than those of boys with ASD and that more research is needed to look over the diagnostic criteria for properly assessing these girls ((Lai, 2013). )

In other words, kids, autism is not solely a boys' disorder! Surprise, huh?

With this being said, why then do I choose blue?

I choose blue, for one, because of my boys. I have been their voice, I have been their advocate. They in turn have been my teachers and, amazingly at times, my rock when I felt everything falling apart. Their light, as light cuts through the darkness, has dispelled my darkness. Blue is calming, comforting (for me anyway) and my boys have been a comfort, a calming presence. Therefore, blue is commonplace around our house during the month of April.

But I also choose multicolored. Why is that?

Because autistic individuals, as with all individuals, are not cookie cutter individuals. Each are unique, different, beautiful, with their own secret splash of something that makes them who they are and when these colors come together...something even more beautiful takes shape. With that, multicolored are commonplace in our house throughout the year!

Autism Awareness does not end when April does. Nor should its acceptance. What was once 1 in 500 is now 1 in 68. In my home state of Michigan (4th in the nation for autism and autism-related disorders, by the way), 15,000 individuals are on the spectrum. You're free to disagree with me but I think way too much time is spent on what color(s) to use to get the word out there. Autism is not going away anytime soon, folks. My boys will take it with them to their graves and God only knows how and when the numbers will change again. Whether it's through a series of blue light bulbs, string upon string of multicolored lights, or a color that tells your particular story, just light it up! 

You may be surprised to see how your light dispels the darkness for someone else!