My son needed new shoes. He didn’t want new shoes. He liked his old ones, but they were too small.
Miracle League had a bowling day, and I decided we would bowl for an hour and then shoe shop. Children with autism need to know what is happening and what comes next. For 2 days, I told him the plans…over and over… He was well advised.
Bowling was awesome! We made new friends, and my son even made a strike!
The game ended, and I, again, told my son the plans. No problem. He was fine. We headed to the mall.
We always go to the same shoe store. He is accustomed to the environment. It is quiet and well suited to children who overstimulate easily.
I knew I was in for trouble when he resisted taking off his old shoes to be measured.
The measurements spoke what I knew to be true. I showed him all of his options, and he said, “NO!” and ran to pick up his old shoes.
“DIS! DIS!” which means “THIS THIS!” He held up the old shoes. He pointed to the dirt on the bottoms. He liked that dirt. It told the story of the places he had been.
While taking off my son’s shoes, I had to get on my knees. It was a perfect time to pray. God was busy elsewhere. My boy wanted nothing to do with new shoes.
The clerk and I tried every trick in the book. Even a couple of customers chimed in.
Nope.
“DIS! DIS!”
“This child will NOT out stubborn me!!” My thoughts were pure stupidity. We were going to another store.
“OOO! MAMA! It so HIGH!” he said, peering over the rail to the floor below. Between our current position and the other shoe store was a video game of thrilling explosive fire geysers, loud trombones, and circus rides. At least, this is what I imagine it must have been for him.
By the time we weaved our drunken over-stimulated selves into the shoe store, it was all out spazorama. He ran the isles. I chased him. Brought him back to me. I tried to ask the shoe clerk where the little boy section was, and she ignored me. Maybe it was my own crazed look that shook her from her desire to neglect, but, she didn’t the second time.
The shoes were in rows up over my head.
“NO! NO! NO! DIS! DIS!”
God…seriously? I could use some help here.
He tore through that store like a tornado on cocaine. As we were walking out, the workers gave me a look. Oh, no you don’t. I saw what those grown women did to the sale isle. This kid knocked over a couple of boxes. Get over yourself.
Some folks looked at me in judgement, and others in sympathy. I’ll have none of either. Walk a mile in my shoes, and then we will talk. And for you others, I’ll have you know this is the best kid in the world. I don’t need your sympathy. He is having a moment. I made a mistake. Life happens. He is still fantastic.
I thought better of visiting another store.
He won the stubborn contest. I lost at parenting.
Autism, as I try to explain to others, is the world turned up to 11. The “go to” reaction for my kid is all out happy/crazed.
I know this.
He felt remorseful. Well, he felt sad he wouldn’t get a “surprise.” Even though I screwed up, I will not reward bad behavior. No need in adding more poor parenting to the stew.
It is difficult raising a child. In this day and age, parent shaming is all the rage. Listen carefully, to these words:
MIND YOUR OWN BUSINESS.
People screw up. Parents are people. We do our best. It’s all we can do.
My son still has his old shoes. I have post-tramatic stress. His teacher will be told of the dilemma. Between all of the adults in his life, maybe we can talk this kid into new shoes.
If not, I’ll be cutting a hole for his toes until we can.
I cried all the way home from taking Asher to school. “Parade of the Wooden Soldiers” blasted from the stereo. I turned the volume up more as I focused through the tears.
A few years ago, Asher was dismissed from (kicked out of) a children’s program. His behavior was too challenging. I was devastated. We left the church. I realized Asher would most likely never be allowed to be a part of a program where they had shows and costumes. It broke my heart because these are the memories from my childhood that always put a smile on my face. He would have no such memories. It took me a good year not to want to punch someone. It took a year more not to want to curse the names of those responsible. Now, I don’t care. (See a past post: When Dreams Die)
Why?
Someone wanted my son to be a part of a program. They not only wanted him there, they made every effort to make sure he could be a part. He was accepted and embraced!
We had tried the Merrimack Hall program for special needs children when Asher was 3. He was not ready, and I was afraid to even try again. This year, I enrolled him in the summer camp program.
The whole week was full of dancing and singing and art. At the end of the week, they put on a show for the parents. It was AMAZING! I cried through the whole show. There my little boy was, and as I thought, he was smashing! He danced and smiled and did exactly what he was not suppose to do. Everyone was ok with it! He grabbed one of the scarves from a previous dance and twirled and smiled and shook his booty. I thought he stole the show.
His reaction to being there sparked another round of tears for mommy. His excitement was contagious! Every day, he would act out all of the activities he enjoyed. There was no doubt: he would be enrolled in the fall/spring program.
Merrimack pairs each special needs child with a helper. Asher has 2 helpers: 1 for his tumbling class and 1 for his dance class. He loves these girls! They love him back. It is beautiful.
SURPRISE!
Because I am sometimes a bit slow on the uptake, and my emails from the hall were going to my junk inbox, I didn’t know about their Christmas show until 2 weeks before it was to be performed. Asher had been absent from class for almost a month due to one sickness after another. I was in the dark.
I wish I was a good enough writer to put into words how excited I was when I learned of his Christmas show. The program director sent out videos so we could rehearse the dance. It was so cute!!
More tears.
Then, because this is my first year with the program, I found out they had costumes. I was handed his costume at the end of class on Monday.
Tears again.
It was PRECIOUS!!! How can this dream be so perfect? This is so far beyond a little local church show. This is the real thing. This is high class production. Not one detail is missed for these children. They get the best.
On Wednesday, I got another costume.
Are you trying to dehydrate me with all this crying, Merrimack Hall?
The costume was, again, PRECIOUS. My little boy would be all dressed up and doing a dance for people who pay to see the show. A quality show with trained helpers and leaders whom accept my little boy.
The surprises kept coming when, after Wednesday rehearsal, Asher’s helper and he showed me his dance. He was so good at it! He knew all of the moves! The dance teacher made sure I knew which video to watch and the song to listen to.
SCHOOL JAM
One day, on the way to school, I surprised Asher with the song blaring over the speakers. In the rear view mirror, his smile lit up the sun.
I kept it together until I dropped him off.
Once he was safely in his teacher’s care, I turned the song back on and let the joy roll down my cheeks.
What people don’t understand about parenting a special needs child is this:
We want the same thing for our children all other parents want for their children. We want them to be loved and accepted.
In this world, it is not often the case. We have to deal with segregation and frustration on a daily basis. It is agony for a parent. We see our children and know their challenges.
But, we also see billions of reasons you should love our child.
THE REHEARSAL
The day of the dress rehearsal, my son had a tooth loose. It became more and more loose as the day progressed. By the time we reached Merrimack, the tooth was barely hanging on. He was frightfully frustrated by it all.
When we dropped him off with his helper, he was in no mood to dance. He would take his hat from his costume and throw it into the trash…over and over. His helper looked a bit fearful as we departed. We were not allowed in dress rehearsal.
When we returned, Asher proudly smiled big to show off his missing tooth. “It came out after tumbling,” the helper told us. This was something to celebrate! I had been so worried the tooth would hang on through the show the following night. The worries were gone!
THE SHOW
I made sure I wore my fancy clothes, curled my hair and carefully applied make-up. My husband dressed up as well. The night was too important to our family for carelessness.
I dropped Ash off in the dance hall, hugged his neck, and quietly spoke, “break a leg!” I dared not let him hear me. It would have been too hard to explain.
My husband and I found our seats. I had my phone camera ready and my professional camera ready. I’m certain I went a bit overboard, but, oh well. One must do what one must do.
Asher was in the 3rd group. He did a great job! I was surprised how nervous he looked. The big overtures he made while practicing at home were blanketed in fear as he made his way through the choreography. His helper later told me that when he saw all of the people in the audience, he said, “Oh man!” It was a surprise to him. But, instead of giving into his fear, he gave way to his training and marched onto the stage. This is part of learning how to be a performer, and I was THRILLED! He did all of his moves, and looked as cute as a button. It took everything in me not to run onto the stage, gather him in my arms, and tell him how proud I was!
His tumbling came 2 acts later. Again, he did remarkably well!
After the show, I rushed in to see him. He was full of life and happiness. He handed roses to his helpers, and we went onto the stage to meet Santa and take a few photos.
The whole night was magical.
WARM CHRISTMAS
Merrimack Hall has brought our family a warmth I never thought we would experience. It is a place Asher is excited to visit. He absolutely loves it, and I never have to reason with him to get into the car. He bounces right out the door.
Merrimack makes certain the children and adults receive the best. There are no short cuts…Only quality instruction and shows.
I’m crying again. It is the weird crying laughing thing going on.
As I am writing this, I have “Parade of the Wooden Soldiers” playing. I have to stop writing every now and again to wipe my nose.
I am so proud of my son. I would not change one thing about him. Merrimack Hall wouldn’t either. They love him exactly as he is. He is not to change one little bit. Open arms and smiles greet Asher each time he walks in the door.
By the end of the night, I had black tear lines dripping over my cheeks.
Why?
Because, more than once, my child was not wanted. He was not loved. He was cast aside.
Now, he is twirling around in happiness and acceptance.
Asher is the best person I’ve known. Merrimack Hall plans to let the world know, and I will cry happy tears as he shines.
Merrimack Hall is a non-profit organization providing programs for special needs children and adults. Click HERE to donate to this amazing program.
retard: a contemptuous term used to refer to a person who is cognitively impaired. Dictionary.com
The term “retarded” didn’t appear in the slangy, usually offensive sense until the mid-20th century. Frank Rooney’s 1954 novel “The Courts of Memory” contains an insulting use that should be familiar if not comfortable: “God, you’re simple, Dick. . . . You’ve got an I.Q. about equal to a squirrel’s. You’re retarded, do you hear me?” The Oxford English Dictionary offers an understated way of describing the current radioactivity of “retard,” “retarded,” and “retardation”: Each is “not the preferred term.”
When Asher was born, it was a learning curve. I had no idea what it felt like to have my heart beat outside of my body. The thought of anything hurting him made me physically ill. In time, this new reality became second nature. Then, the bad news started rolling in.
“He has cysts on his brain.”
“He has a heart problem”
“He is not meeting goals.”
It was years of one blow after another.
In the meantime, I was parenting him like any other child, with the additions of multiple therapy sessions each month and doctors visits all the time.
It was not long after first learning about my son’s challenges I first heard the word “retarded” spoken in slang.
This was not my first time hearing the word. It was, however, the first time the word revolted me. I was lava hot mad. I’m surprised I didn’t spontaniously combust on the spot. I was LIVID.Unfortunately, I’ve heard the word used as an assault towards another more times than I care to remember.
Dirty Word Begins
Schools and the medical community are always changing the “label” for special needs children.
Why?
Because ignorant and hateful people keep turning these words into slang describing those they feel are less.
Today, the word “exceptional” has replaced all previous words. The term is accurate despite the fact people will turn this word into something to be laughed at or avoided. At some point, the word will be changed again.
“Retard” does seem to hang on in slang.
Cleaning up the Dirty
Though the word has been used to break the backs of enemies in verbal combat, I would like to take a moment to bring an awareness most may not have considered.
I propose this:
If you are not a special needs person, you are retarded.
You are the one who is slow.
You are the one missing something.
In my experience being around special needs children, they are brilliant. Seriously. Some could probably build rockets. Others, they have a niche for enjoying life. There is much diversity in the intellect in special needs children.
One factor I find the most common is this:
An ability to see the world in a way we could only dream of.
It is as if everything is beautiful. It is a vision of another dimension to humanity, and they have little patience for those who cannot see it.
Jesus called this dimension “the kingdom of God.” Remember, he said time and time again, “the kingdom of God is at hand.” He said it was available right now. The suggestion was we didn’t have to die to experience heaven. Even his patience was tried by those lacking vision.
Buddha describes this ability as “enlightenment.”
My kid knows this. He is enlightened to the kingdom of heaven. Most special needs children are. They “see” something we do not. They understand concepts completely out of our reach. (See THIS article for an example)
Special education teachers, therapists, and doctors will all tell you the same.Special needs folks are simply amazing.
My son taught me a lot about myself.
I am the one who is slow on the uptake.
I am the one who lets the worries of this world steal my joy.
I am the one whose mind is in a constant state of chaos.
I am the one not noticing the sunset, sunrise, and light in people’s hearts.
I am the one not living in the here and the now.
I am the one working too hard and breathing too little.
I am the one slow in seeing the beauty of what this world is…not what it could be.
I am the one who needs to be more like him.
I am retarded.
Yeah…I might be able to talk, walk, write, sing, not worry about my health too much, and so on, but, I am missing out on the greatness of life.My vision is blurred.
So, the next time you use this word in a way to harm another in front of me, please understand.
I know the truth. You are speaking of yourself.
Only retarded people would be ignorant enough to not see our special needs children for who they are.
Who are they?
They are our only hope to knowing truth.
The Dirty Truth
I wish people would just stop using any term using my son, and countless other beautiful people, as a description of what not to be or a description of “less than” me. It is ignorance defined.
Here is the real truth.
My son, and the sons and daughters of parents who are blessed enough to have a child who is special needs, know something you do not.
Our children are magical. They hold the keys to joy and knowledge. They are not perfect. However…
Wind was blowing the tall pines shading the playground. I could hear the laughter and smell the aroma of food from the family reunion being held at a gazebo nearby. I hoped for an invitation to eat their fried chicken, potato salad, and casseroles of all kinds.
Maybe around 11 years old, a little boy sat on a swing in the mainly deserted playground. With his smart device in hand, he used his feet to swing just a bit as he played his game. He seemed to enjoy the alone space away from the festive reunion, but, there was also a loneliness in his eyes.
My son, Asher, and I played on the little kids playground before making our way over to the big kid playground. On the way over, I noticed Asher looking back towards the swings. He was curious about the little boy with the smart phone.
Realizing the obstacles on this playground were steep and above his skill level, Asher decided to walk over to the swing next to the boy.
“What’s his name?” Asher asked me.
I responded, “I don’t know his name. Ask him!”
“Jake,” said the little boy.
Asher signed and asked me if the little boy was playing “birds” (any smart device). I told him he was. Asher watched him play on the phone a while, and then decided to swing. There were few engagements between the 2 boys. Both seemed perfectly happy to simply be present.
When it was time to go, and Asher turned around and smiled at the little boy. The little boy smiled back.I smiled and told the little boy to have a good day, and Asher and I headed to my Dad’s truck.
“What’s his name?” is a common question in my world. Asher is deeply curious about who people are. The conversations are scripted as follows:
Asher: “What’s his name?”
Me: “I don’t know his/her name.” (He understands gender differences, but “her” is not easy for him to say.)
What happens next is dependent on the time we have to continue. If time permits, I will tell him, “I don’t know. Ask!”
Turning to the new person of interest…
Asher: “What’s his name?” (“Your” is also a hard word for him to say.)
He does not care what color someone is, what they are wearing, if they smell or not…nothing. All are vulnerable to the “What’s his name?” game.
The responses from people are interesting. Some don’t understand what was said, some smile, and others engage the conversation.
I’ve yet to figure out the formula to the ones who engage this conversation, but goodness is a common thread. It is hard to ignore this cute little boy with big blue eyes and crazy hair.
I used to think miracles were rare, but, now, I see them everyday. From a middle-aged man smoking a cigarette in front of the gas station to the war torn lady behind the counter at the restaurant, the power of kindness and curiosity breaks through and wins.
In one question, “What’s his name?”, hearts open and take a deep breath…if only for a moment.Asher meets people in sad situations and leaves them with a smile. He also reminds them that they have a name and someone cares enough to want to know it.
Sometimes, all folks really need is a good moment. Sometimes, people just want to know they are not invisible.
The little boy in the swing smiled as we walked away. He somehow looked happier. Refreshed. I knew why.
He played the “What’s his name?” game, and he did not feel alone anymore.
I have never been arrested. I have never had a speeding ticket.
I am a rule follower.
Careful is the best way to describe how I act and react to most situations. This all changed yesterday.
I began to notice the difference between “careful” and “courageous” in the leaders we all hold in high regard.
Dr. Martin Luther King, Jr. was not a careful man. All of his movements were strategically planned and discussed with those whose values he held to be wise. With the information he needed, and the drive for justice he held dear, he courageously ventured out into a dangerous world. He was not careful. He was courageous.
Mother Teresa was not a careful woman. She moved so powerfully into the world of poverty that we all now know her name and respect her work. With God as her guide and her own sense of justice, she courageously marched against the cycle of poverty. She was not careful. She was courageous.
Mahatma Gandhi was not a careful man. Through non-violence, he moved powerfully against injustice. He used his own body through fasting to demonstrate his opinion of justice for his people and religious harmony. Gandhi was not careful. He was courageous.
Whether you agree with these people and their opinions or not, you have to admit their commitment to justice and peace was admirable. Why is it these people found a way through the noise into our common history?
I believe it was their drive to improve the quality of life for all who found themselves in a place of injustice. They were not fearless. They were courageous. They were not careful. They were wise.
I am a rule follower. I am careful. However, I have a son who needs his mother to stop being so careful and to start being courageous.
I ask you to do the same. Do not let your fears lead you into a place of commonplace. Allow your inner courage to find a home in the power the people of Alabama have placed upon your shoulders.
My son no longer needs you to be careful. He needs you to be wise. He needs you to seek justice. He needs you to be courageous!
Approve the original Leni’s Law without amendment. Allow my son to be a part of “justice for all” with his debilitating conditions. Please, do not force our family to move away from parents and grandparents and aunts and uncles and friends because he is unable to get the care he needs in the State of Alabama. Please. Do not force us to move to a new state without even knowing if this medical therapy will work for our child. Please, fight for justice for our son and the many other sons and daughters and grandsons and granddaughters in the State of Alabama.
The time has come to stop being careful. The time has come to be courageous.
The little girl who spoke these words was not some stranger’s child. It wasn’t a kid from school or church. The little girl who spoke these words has my heart. She has since before she was born.
Cristine (a.k.a Cris) and I met many years ago when my husband and I had a small group/church ministry. We became fast friends. Both of us somewhat weirdo hippies but smart, capable, and funny as hell. Yes. This was to be a lifelong friend.
I called my friend the first of April, 2009, to tell her the big news.
“Guess what? I’m pregnant!!”
“Guess what? Me too!,” said Cris.
The next 9 months resulted in nausea followed up by (or during) ravenousness hunger. Neither of us could take looking at the word “egg”, and, on one occasion, her husband emerged from the car carrying a bag of throw up. We proceeded to take out the food bar at the restaurant where we had met. Ahhh…good times.
We delivered 4 days apart. Asher, my son, was born first. Cris brought me cookies. (I had to return that favor when she had her son.)
As our children began to grow, no words were necessary for the differences in development. Ivey began to talk and walk and sing with ease. Asher required physical, occupational, and speech therapy. The challenges began to mount for Asher as Ivey soared. It was a bittersweet script.
Fast forward to the day my friend proved to me that she was the wonderful person I thought her to be, and I was reminded of how important one little girl can be.
“Autumn, why does Asher talk so funny?”
Ivey stood before me with her inquisitive eyes. Obviously, it irritated and confused her that Asher could not speak like her.
I had no idea what to say. As I sat, mouth agape, stunned and absolutely terrified of a 4 year old, Cris says, “Ivey. Asher and his mommy have a secret language. They only teach their language to the people they love the most.”
My cue, “And Ivey…you are one of those whom we love the most, so I will help you learn our secret language.”
I vowed my eternal friendship to her that day. A fantastic mommy is raising a gifted young woman to be kind, loving, and unafraid to have a big heart.
Thank you, Cris, for loving my son. As I always say: The best way to show me your love is to love my son. Plus, you taught your child to love my son. Truly, the most precious gift I could ever receive.
Thank you, Ivey, for being honest and just plain wonderful. I remember the world before you were born. It was boring and absolutely no fun. Then, this little sparkly girl who can do anything blasted her way in and changed everything. You and Asher made your Mommy and me smile bigger and brighter than ever.
Yes. It was inevitable, but with a dash of love, a giant amount of wisdom, and a sprinkle of sheer goodness, I was shown something beautiful: acceptance. This was not just your everyday, ordinary acceptance. It was not the kind of acceptance people like to throw around to seem like they are good people. It was real. It was true. It was beautiful. In a world where I fight daily against the onslaught of judgmental people, that day, I was able to breathe. My son was loved exactly as he was. No changes necessary.
Give the gift of acceptance to someone today. You may be the only person who will. It might just change their life. It may just change yours.
