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!

Don't Ever Tell Me

In the nearly 16 years since my sons were diagnosed on the spectrum I have had many a thing said to me. Many a stupid thing. Many a downright thoughtless thing.

After all this time, I've gotten it. Some of these folks meant well and actually thought they were being of some help. The rest I'm sad to say were heartless clods whose brains were on rewind while their mouths were on fast forward and could have cared less about the content of their material. But the one thing they all have in common is...they just don't get it!  Even after you try your hardest to enlighten them. And they won't get it. Not until it comes knocking on their doors will they ever begin to get it!

If I had a dollar for every stupid, thoughtless, sometimes well-meaning word or phrase uttered in my direction I could single handedly lower the deficit and have some left over. Phrases such as....

"Is he like Rain Man?" (no, more like a light drizzle!)

"Ohhhhhh.....*tsk tsk* I'm so sorry!" (Sorry for what? Their lives have been fuller than most could ever imagine!)

"I thought there was something wrong with him!"  (eye roll here)

"I feel so bad for _________________________!" (him, them, you..)

"They'll grow out of it, right?"  (Oh yeah...sure they will...they'll grow out of their shoes faster!)

And then there are these gems.....

"If that were MY child...."  (Thank God they're NOT!)

"He belongs in a cage!"   (no words)

"One of my good friends has a sibling whose nephew/niece is autistic, I know just what you're talking about!" (insert face palm)

"You sure can't tell by looking at him/them!" (insert two face palms)

"What he needs is a good ass whooping!" (probably one of the surest ways for you to get yours kicked!)

""Boy, do you have YOUR hands full!"  (You should see my heart!)

"I just don't know how you do it!" (Like I've done everything else...by the seat of my pants and on a wing and a prayer...as if I've had a choice?!?)

"Would you still have had them had you known they would be autistic?" (Um...yeah..would your parents still have had you had they known you would have been a thoughtless idiot?)

THIS question, posed by an elderly aunt who has since passed away, was the cherry on the cake of every stupid, thoughtless comment spoken to autism parents (special needs parents in general for that matter!) everywhere:

"What was your sin that caused your sons' autism?"  (I have nothing to add to this one!

And the wheels on the bus go round and round!

Yeah, I probably can't go so far as to say I've heard them all but I've heard enough. I've heard and seen enough to know ignorance is curable; all ignorance means is a lack of information. Stupidity on the other hand is forever. My definition of stupid is when you no longer lack the information but still speak, act, and move as you were before receiving the information. It becomes a choice then. 

My son Matthew spent this past week with the Special Olympics of Michigan, taking fourth place in the 75 meter snowshoe race and taking second in the 100 meter snowshoe race. He spent the past 2-3 months training, practicing running on snowshoes, learning how to take tumbles on snowshoes, doing it all with a smile on his face and a spring in his step. As a newcomer, he led the procession along with one of the coaches during the opening ceremonies. He was photographed with Wertz Warriors as well as with a reigning beauty pageant queen. My son Matthew...the boy who belonged in a cage...the boy who needed his ass whooped...the boy with something wrong with him...the boy who was this way because of whatever sin it was I did or thought about doing...my son...an Olympian!

Don't ever tell me what my son and other individuals like him are incapable of. Standing on the sidelines wrapped in layers of clothing and blankets to keep the cold out, I saw the human spirit at its best. I saw the strength of every one of these athletes, not just that of my son. I saw their heart, their joy, their perseverance, their determination, and probably the most beautiful of all to see and to hear was their laughter and their smiles. My son and his fellow athletes were there because someone believed in them and believed in them enough to push them past the comfort zones set for them. It could be heard in the cheers, the claps, the shouts of "Go! Go! Go!" from the families and coaches. In a world where these beautiful individuals are many times given up on, set aside, and given minimal expectations, Matthew and his fellow athletes were experiencing something so few in this world ever have the chance to; freedom. Freedom from limits, freedom from boundaries, just sweet, beautiful freedom. These participants were not merely people with disabilites; they were athletes breaking down barriers, tearing down walls, and just simply having fun.

Don't ever tell me what my son will never accomplish. The fourth place ribbon and silver medal hanging up on the wall at home speak to the contrary. Don't ever tell me what my son will never be because guess what, honey, you have no way of knowing. Guess what else? Neither do I! But I've seen where he's come from. From having little ability to feed, bathe, or dress himself to laying his clothes out, changing out the laundry, helping with the dishes, and making coffee. From flipping tables in his classroom during a meltdown to separating himself and chilling out with his dominoes. From biting and slapping himself, spitting on me and screaming in my face to randomly reaching over and taking my hand, leaning into me for a kiss, and actually letting me hold him. From pointing and grunting because he was not able to verbally express his needs or wants to actually saying "Pass the ___________, please,"  Shall I go on?

Don't ever tell me what you think you know about my son and others like him, especially when you know you have no experience with it. I am by no means an expert but when you spend the better part of 16 years eating, breathing, sleeping, spewing, and defecating all things autism, you learn more than what you had ever cared to and as a result, you have a tendency to chuckle at those who only think they do. Sorry, but your neighbor's friend who has a nephew who has a cousin with autism is not the same as personal, hands on experience.  It's not a matter of being haughty or rude or believing you to be one up. When you're dealt this type of hand, that's just the way it is.  

And please, for the love of all that is holy, do not EVER tell me how sorry you are or that you feel bad for him or for his brother. I wasted enough time in the early days of their diagnoses feeling bad enough for everyone. Did I mourn the loss of a seemingly normal life (for us as well as for them)? Yes, I did. Did I ask the age old question "Why me? Why us?" You bet your life I did. This business about how a child's diagnosis of any kind doesn't happen to the parents (as it was bluntly put to me) is, shall I say, a load of fertilizer. The entire family dynamic is turned upside down and suddenly parents morph into advocates, going toe to toe with school systems and the medical field to ensure their kids are getting what they need. Siblings more times than not don invisibility cloaks, taking a back seat to their brother or sister because of their needs. To say that the only one affected is the child with the disability is a lie straight from the pit of hell. Our family, our entire family was affected. It was a long, rough, lonely road for a good part of the journey. I look at my boys now and I see strength. I see joy. I see purity and innocence. I see determination and I see love. Don't feel sorry for them or for me. This is the hand I was dealt. It was not a hand I would choose. It is a hand I will play. Don't ever tell me you don't know how I do it. Who will if I don't? This is my family, my children. The only other choice is to lay down and die. Not on my watch.

Besides, the summer games are coming up in a couple of months, and Matthew will be a participant once again. More training, more practicing, more everything. No doubt he'll do it all with a smile on his face and a spring in his step. Dad and I will be right there on the sidelines with cameras at the ready. Hopefully we won't need layers of clothes and blankets this time around!

But I Thought I Was Your Favorite!!!!!

How many of us here have ever played favorites? Show of hands....anyone...anyone...?

If we're honest...really, brutally honest...we have all played favorites at one point or another and I am as guilty as anyone. Here at the Clubhouse there are six individuals all with their own set of quirks and chaos, the likes of which has been known to find me at my spot on the couch, coffee cup in hand, shaking my head asking rather loudly what is WRONG with everyone! Truth of the matter is, there is nothing wrong with anyone, myself included. We're just different. If I REALLY want to be honest, the quirks and the chaos tend to show themselves among the ones who are actually the most alike. On the surface it's hard to see this but after I step back, take one or more breaths, and really start to look, they are crystal clear. Too much so at times. 

Now this being said, how many of us here have been on the receiving end of favoritism...by our KIDS? Again, show of hands...anyone...anyone?

Matthew and Ira are two peas in a pod. They look alike, almost to the point of being scary at times. They walk alike. They dress alike. They are always together. Along with his autism, Matthew has a condition we at the Clubhouse like to call "CarButt." Loosely translated it means every time the car door opens, his butt has to be inside. And God forbid should he ever have to stay behind..well...it is NOT a beautiful day in the neighborhood. Sorry, Mr. Rogers! 

Matthew and Ira seem to have their own language thing going on. We'll be at the grocery store and, should we become separated, all Ira has to do is either raise his hand or cluck his tongue to the roof of his mouth and Matthew will appear out of nowhere. At times Matthew will run words together to where they almost sound garbled. More times than not, Ira knows exactly what he is saying. Matthew will come and lean against Ira on the couch, engage in tickling matches, and cuddles and kisses. 

That's nice!!!!!! 

Up until four-and-a-half years ago, I was left to raise the kids. A single mom with little to no work experience it was now up to me to keep the house going, the bills paid, and all of us together. I spent many nights laying on my bathroom floor with itchy teeth crying my guts out because I had no clue what to do and how to provide for us all. Couple that with I was still new to being an autism mom. I didn't know up from down. IEPs, ABA, OT, ST, it was all like alphabet soup to me. Struggling to get Matthew to eat something past mac-n-cheese and Kool-Aid (starch and sugars, those were his staples), scrubbing the walls and throwing away bath towels found under the bathroom sink because they were used as toilet paper, meltdowns of epic proportion...Matthew flipping over tables in his classroom, biting himself, slapping himself in the head. Looking me in the eye and either screaming at me, spitting on me, or both. If I'd had a dollar for every time I heard the phrase "You've got your hands full" I could have single handedly ended the recession or at the very least lessened it. 

If I'm not careful  I can become resentful.

I know Matthew loves me. I know through simple things; reaching over and taking my hand for no apparent reason, dancing with me at his Halloween party, thanking God for bringing me through my carpal tunnel surgery at the dinnertime prayer. So why don't I have the same thing with him that his dad does?

I'm not his dad!

Just as I love all four children in the same way (unconditionally), I have also had to learn to love them differently. I cannot approach them in the same manner because they are individuals, unique in personality and design. Each situation, even if it appears to be the same, requires a different approach. The results I get may be the same or they may not be. If the kids should be dealt with and related to differently, what makes me think we as the parents are any different? 

Besides, when Matthew takes my hand, or smiles at me, sings "Fruit Salad," says "I love you"...these things speak volumes in a manner I might have taken for granted otherwise. You know, I think it's fair to say we have our own thing too, special and unique to us. I don't have to be his favorite. His rousing chorus of "Fruit Salad" is enough for me!

Thank You Very Much

With Christmas being just a hair over two weeks away, no doubt the air waves are being overrun with the showing of Christmas movies, classics, and modern favorites. At the Clubhouse it just doesn't become Christmas officially without the showing of one of these:

       A Christmas Story (You'll shoot your eye out, kid!)
       It's A Wonderful Life (gotta love Clarence and his quest for wings)
       Holiday Inn
       White Christmas (Bing Crosby ..need I say more?)
    and of course...
        A Christmas Carol

       I have several versions of this classic that I simply love and among them is a musical version starring Albert Finney. His crotchety demeanor and miserly swagger coupled with the sorrow of paying a call to the shadows of his past are nothing short of endearing. Even more comical is watching him deliver a speech of gratitude to a crowd of people indebted to him who intermittently whoop and holler and cheer, not realizing they are doing so because a casket containing Scrooge himself is being carried out of his counting house. The song and dance that follows..." Thank You Very Much..." is catchy, comical, and in a way rather sad. Who knew death could bring so much joy?

I mention this particular number because Matthew as of late has taken rather a shine to this movie and that exact scene. Once upon a time and not so very long ago he would not interact with anything, much less a movie or TV show. If we would put a movie on, he'd leave the room to busy himself elsewhere. So all of a sudden when Dad and I saw him moving his feet, swinging his arms IN TIME WITH THE MUSIC I might add, singing "Thank you very much! Thank you very much!" well...it was a surprise to say the very least.

I see the joy and delight in his eyes with each clap of his hands. His face glows and his eyes sparkle. I watch the way he mimics each move, each step, and how he seems to keep perfect rhythm. I remember the not so distant past when the longest he would sit for anything was maybe 30 seconds and even that was a bit of a stretch. Mimicking, copying, repetition were all unheard of. Singing? Ha! Not even close! Although music is something Matthew has always paid attention to and seemingly enjoyed, it was not something I can honestly say he was actively engaged in. That connection had not yet been made. Not until now...

And for that I say...even after the tenth time of watching it that day....

"Thank you very much!!!!"

Attitude Of Gratitude

As I write this, I am sitting at my mom's kitchen table, a hot cup of coffee (unleaded, unfortunately, but that is all my mom is allowed to have these days) beside me and a world of white surrounds me. This is supposed to be the season of giving thanks but from where I sit it would appear the snowglobe has been shaken just a tad. 

Matthew, God love him, has been outside. He plows through the snow piles in the front yard, shoes and all, happier than I can even begin to describe. Youth! Not that I mind winter...or even snow...but I have been known to sing "Let it snow, let it snow, let it snow somewhere else!" 

This year, as in past years, I have seen several postings online where the postees participate in what is known as "30 Days Of Gratitude." I liken it to a Reader's Digest version of  the"100 Happy Days" campaign that was all the rage a year ago. I've taken part in "100 Happy Days." I've taken part in "30 Days Of Gratitude" as well. They are both wonderful campaigns with the capacity to get us to dig deeper and discover just how blessed we really are.

However, I am not taking part this year.

I don't know....

Maybe I'm becoming a little more cynical in my old age...

Maybe I'm growing weary of the little facets that make up this jewel called life being taken for granted on what appears to be a daily basis...

Maybe I'm sitting here scratching my head trying to understand how thankfulness and gratitude became once a year campaigns instead of an integral part of daily living...


This past year, without question, has been difficult. These past 15 years? A roller coaster to say the very least...

Two sons were diagnosed on the autism spectrum...

My marriage failed....

Back and forth...back and forth....back and forth....my head...my heart....my emotions.....my spirit....

Financial struggles....do I really need to elaborate?...

Coming to terms with Ira's mortality and impending death....

Doesn't seem like there is much to be thankful for, does it?

Ah! But God is good! In the midst of all of this, He is good!

Hot and cold running water...

A job...not a high paying job but a job just the same with a team that has been supportive of my family over these past four years...

My family....

My friends....

More love than I have ever known....

A ministry (Keryx/Keryx In Community) which blesses and reaches those who are otherwise deemed "the least of these..."

Needs being met more often than I seem to be able to get my head around...

...and I could go on....

Thankfulness a campaign?
Happiness a challenge?

No.

Rather these are attributes to be worn as a garment, a covering when the cold sets in. These are whispered prayers or joyous choruses as the storm hits. These are or at the very least should be a way of living, not merely something you mark off on the calender.

As I wrap this up, I think of those I hold dear, those whose presence has made a difference in my life...and I say thank you from the bottom of my heart. Thank you...thank you...thank you...

May our blessings continue to overflow!

A Dance With My Son

I danced with my son Friday night.

Such a simple thing, yes. 

For me, it was 15 years coming.

We went to a Halloween party being sponsored by the community mental health agency in our area about an hour or so away. Costumes were encouraged but not required. Men and women of varying ages, backgrounds, walks of life gathered for an evening of lighthearted, spooky fun.

Matthew had been more than eager to attend and reminded Dad and me on the regular for the three weeks prior to said party. "Bumblebee costume Friday! Fun!" It made me smile remembering how once upon a time and not so very long ago events like this were nonexistent because of the overload they put on Matthew's system and consequently us. We had taken him to the local Halloween store where he himself picked out his costume (Bumblebee three years running). He eagerly and happily let us know each day when this night of fun was going to be. 

Friday came and the family picked me up from work. The drive there was beautiful with the myriad of color in the autumn leaves. Matthew was in the seat behind me, rocking back and forth to the music of the Newsboys while his sister belted out the lyrics at the top of her 8-year-old lungs. His smile beamed, his eyes lit up. 

When we arrived at the township hall, we each went our way to change into our costumes. Jordan was a scurvy pirate. Kenny was a firefighter. Matthew, of course, was Bumblebee. Cheyenne a "Forsaken Soul," I an Egyptian queen and Ira was, well, Ira. We found ourselves a table and settled in to relax and enjoy some refreshments. Everyone was relaxed with each other, or at least they certainly gave the appearance of being so.

Somewhere between the worms in the dirt dessert and the lime Kool-Aid the music started. Matthew started tapping his feet and moving back and forth. I looked at him. "What do you want, Mattie?"

Matthew looked at the dance floor, pointed, and said, "Dance."

I took his hand. "Let's go, Mattie."

I like dancing. The only problem is, I suck at it. For one, I hate being watched. And when I wasn't being watched I always felt like I was being watched and I hated that feeling. The other thing is when I dance I look like I'm looking for my keys. None of this mattered at that moment. I was dancing with my son. The same son who would pull away from me, running down the hall screaming if I went to hug him or tell him I loved him. My son, who would spit in my face, bite his arm, or hit himself in the head, took my hand and walked with me out to the dance floor!! MY SON!!

As I looked around I saw a group of people who appeared to be comfortable within their own skin, who just didn't seem to care what this one, that one,or the other thought. This wonderful group of people accepted each other and did not hesitate to reach out to the people around them. Meanwhile here we are, the "normals," the "straights," the "neurotypicals,"trying to cut them down to fit into boxes we as a society have deemed for them. How sad is this!