Tuesday, March 29, 2011

Take Notice

Last year, did you notice the blue light illuminating the top of the Terminal Tower and the ones shining bright at the Q and on a few other buildings downtown on the evening of April 1st? Did you wonder why? Did it spark your curiosity? If the inquisition was there, the purpose of this act was successful.

You see, on the evenings of April 1 and 2, 2011, prominent buildings across North America and the world will again turn their lights blue to raise awareness for autism and to commemorate World Autism Awareness Day.

Over the past few weeks, there has been a plea from the autism community to get the White House to take part in this plight. I have been struggling about getting on this bandwagon. My first thoughts were that we, as an autism community, should not be selfish. What makes autism awareness any more important than another cause? There are thousands of causes out there that are just as worthy. Soon, the White House would be inundated with requests from all types of special interest groups to get their cause recognized, too. If they started with one cause, how could they ever draw the line? When would enough be enough?

As I was going about our evening routine, I heard a song in the background coming from a
Sesame Street
video that gave me my “ah ha moment”… The words from that song begged me to ask “Who will be the people in YOUR neighborhood? Who will be the people that you meet when you’re walking down the street? Who will be the people that you meet each day?” 1 in 110 children are diagnosed with autism. Right now, most of these children with autism are populated in homes and schools. As these children grow up, they will be adult members of society and they will be all around us.

Who will be your gas attendant? Who will be cooking your food at McDonalds or serving you coffee at the local coffee shop? Who will be stocking your shelves at the local store or bagging your groceries? Who will be delivering your mail or your newspaper? Who will be re-shelving books at the library?  It is my prayer that children with autism will be able to get the support they need to become productive members of society.

So, on World Autism Awareness Day, yes, I plan to post a link on my face book page; Yes, I will probably wear a blue puzzle piece pin or an awareness bracelet, and yes, I will possibly even dress my children in LOGO t-shirts that show our autism support. I will be putting my blue light bulb in my lamp post at my little home on a little cul-de-sac in a little town hoping that someone …just someone will ask me why? But that is not enough. Enough will never be enough when it comes to my child with autism.

So, Mr. President, our budget may never be balanced, our health care may still be in crisis, and we still may be at war, but…there will STILL be autism.  It would be a disservice to every citizen of this country if we did not make them aware of autism. If people do not become aware of this now, how will they ever be able to understand it and accept it in the future when they will be surrounded by it?
Mr. Obama, won’t you Light It Up Blue, too?

Friday, March 25, 2011

Momma Got Her Mouth Washed Out With Soap !


The other day, in the rush of our morning routine, I said to my 4 year old,” Come here so I can help you blow your nose.” As I held the Kleenex up to his nose, he was saying something and I thought I heard the word “da##it “. Because the tissue muffled his words, I asked him to repeat what he said. He looked up at me with a hesitant expression. I reassured him that he could repeat what he said and, out it came…” I said, did I just hear you say da##it?” I was taken back. Quickly I replied, “Honey, Mommy doesn’t say words like that.” He responded,” Yes you do.” Scene after scene was going through my head. For the life of me, I could not think of a time when that word would come out of my mouth.  I had to get to the bottom of this. So, I pleaded,” When have you ever heard mommy say that?”  He replied, “You say it when something breaks.” 

YIKES.  I have always restrained myself from using any profanity (so I thought)…but I could not deny that he heard that word come out of my mouth. I reassured him that “da##it” is a bad word, and no one should say that word, not even mommy. I told him that mommy would never use bad words again.  Oh boy, was I BUSTED!

Evening time came, and the boys were already in bed. I went into the bathroom to wash my face and brush my teeth. I put the toothpaste on my toothbrush and began brushing my teeth. YUCK! Something wasn’t right. I grabbed the tube of toothpaste to confirm first that it WAS toothpaste. Then, I examined the toothbrush a little closer holding it up to my nose. Hmm, that smell is familiar, but why are there bubbles on my toothbrush?  

Then it dawned on me. A few hours earlier, I caught my 8 year old son in the bathroom playing with the hand soap. I thought he just had it on his hands and in his hair, but, to my surprise, my toothbrush was involved!

Tuesday, March 22, 2011

What Will He Remember ?

The bedtime routine has been kind of rough the past few weeks. Getting our son to want to go to sleep in his own bed has been a struggle. As I reflect upon this journal entry that
I wrote around Christmas time, I've decided to "let it go" for the time being....

December 2010
Letting them stay up an hour past their bedtime on a Friday night, the three of us lay in my bed, on a cold December evening, watching The Polar Express. Well, at least two of us were watching. My 4 year old's eyes were glued to the television. My 8 year old son with autism lay with his head under the blankets and his hands cupped over his ears. Perhaps he was blocking out the background music on the show, or avoiding an annoying sound he heard in the house or even a sound in his own head.  More likely, though, he was blocking out my voice as I asked his brother," Why didn't the mommy and the daddy hear the bell ring?" and him replying, "because they didn't believe mommy, they didn't believe."

The movie ended and I announced it was time for them to go to sleep in their own beds. I scooped up my 4 year old along with his pillow and carried them to his room. I gently sat him on his bed and arranged his bedding to tuck him in when I noticed he was pouting.  His arms were crossed and bottom lip was sticking way out. "What's wrong?” I asked. "You make me so sad ", he exclaimed.”Why?" I discernibly asked. He softly replied,” I just wanted to snuggle in your bed for a little bit." He had no tears, but continued sadness. I tried to justify his need to sleep in his own bed. I explained that he needed to get a good night's rest because tomorrow, Nanny and Papaw were coming to pick him up and take him to the apple farm. "Really?" he exclaimed. "Really? Tomorrow is the day? You are the best Mommy in the world", he gleamed giving me the biggest hug and kiss. "I love you, Mommy. Goodnight." "I love you; too", I replied as I gently shut the door behind me.

Those words he spoke haunted me.  Which would he remember? "Mommy, you make me so sad" or "You are the Best Mommy in the world"?

I walked back to my room and peeled away the sheets to get to my other son. Not asleep yet, his hands were still cupped tightly over his ears. He was reluctant to let me take him out of my bed. Awkwardly, I picked him up and he wrapped his legs around me.  I took him to his room and tried to put him in his bed. Still with his hands cupped over his ears, he used every move he could to prevent me from putting him down. Finally, with him wrapped around me, I got into his bed with him. He squirmed out of my hold and took one hand away from his ear. He protested going to bed by pushing his nightstand over. I jumped out of the bed and instinctively told him "NO!"

The "right" thing to do would have been to stick to my guns and make him stay in his own bed. However, my head and my heart were in conflict.  I stood there looking at him, seeing him with both hands cupped tightly around his ears, his eyes closed tightly and his head hanging low...He was probably wondering if I was going to make him pick up the nightstand and make him comply by staying in his bed to go to sleep, but I didn't. I softly asked," Do you want to go back to mommy's bed?"

Not a word could he say, but he let me pick him up. He snuggled his face into my shoulder and kept his hands cupped over his ears. I carried him back to my room where we snuggled in my bed ,me stroking his hair until he fell fast asleep.

Those words He could NOT speak haunted me. Which would he remember? "Mommy, you make me so sad?" or "You are the Best Mommy in the world!"?

I don't want to be my children's best friend. I am their mommy. But, I realized tonight, it is up to me to make memories for my children and to make an impact as to WHAT they would remember. 

Saturday, March 19, 2011

Every minute counts…in Joe’s Basement

So, last night, we went out to dinner to celebrate my husband’s birthday at Buca Di Beppo. Some of you may know that the name of this chain restaurant simple translates to Joe’s Basement, thus the title to this blog.

Going out to eat isn’t easy for us.  Waiting is difficult. Background music is annoying and the sights and sounds that accompany the restaurant ambiance can be downright frustrating for a child with autism.

There is a lot of planning and a BIG purse that’s involved when taking on such an adventure. I made sure the reservations were made well in advance. I brought out the largest purse I have and filled it with headphones, fruit snacks, tootsie rolls, toys, stickers, a bank and some pennies and any other thing I could think of that would get us through any difficult moments we might encounter.

We arrived a bit early, and standing in the entrance, he was getting antsy. Lucky for us, he was fascinated by the blinking chandelier above our head. That kept him occupied…for a minute.

As everyone arrived, he became excited to see so many familiar people all in one place at one time. He greeted each one uniting them hand in hand.  We all knew he wanted us to join in on HIS game of “jumping”.  As silly as we looked, we all obliged to keep him occupied…for a minute.

Our table was ready. So away we went to our seat. The tour took us through the kitchen. He saw the pizza coming out of the oven and I thought at that moment, he was going to lose control, but he didn’t. As we ventured through the hallways and rooms, the sights of all the tchotchkes kept him occupied…for another minute.

My husband and I strategically placed him between us in a booth. He had a smile on his face as he watched each family member take their seats. That kept him occupied…for a minute.

He looked around, taking it all in. You could sense the nervousness coming upon him. I hurriedly reached into my purse and pulled out his headphones. That kept him calm…for a minute.

He again became restless and made his way across my lap and over to my father in law. Papaw’s hugs contented him…for a minute.

The food took quite long to come out and he could not handle it any longer…he pointed and then bolted. My sister in law caught him to delay his exit. To the floor he fell. No tears or anger, just a sense of panic. So, down the hallway we walked to distract him…for a minute.

Back to the table, between us he sat. I resorted to my big bag of tricks and got out the TOOTSIE ROLL bank and had him fill it with pennies. That kept him busy… for a minute.

FINALLY, the food arrived. A big plate full of spaghetti….THAT kept him busy for about TEN minutes.

Dinner was done and the waiting brought on more anxiety. Again to the floor he fell. Hands over his ears and his eyes shut tight. As I coerced him to stand, down the hallway we walked again to occupy him…. for another minute.

Back to the table, between us he sat; thank heavens for Grandma’s calculator that kept him content… for a minute.

Out came dessert with the waiters clapping and singing. My son loves this part of celebrations. He had a smile on his face and he was excited as could be. Whipped cream, ice cream and a brownie…This was THE minute HE was waiting for ! 

and now mom and dad could relax  ...for a few more minutes !

Friday, March 18, 2011

That's Amore

When I asked my husband what he wanted for his birthday this year, he said, “I just want to have a nice dinner with the people who I love and who love me.” That seemed easy enough… Dinner, family, friends…So, of course, a dinner party it would be.

Usually we have birthday parties in our home. It’s easier for our son. No waiting. No meltdowns…and, certainly, less anxiety for all, (including me!). But this time, we are going to a restaurant.  I’ve been worried and anxiously praying that everything will be just the way my husband wants and he deserves.

He tells me, “It doesn’t matter, everything will be okay.”

When a husband reassures his wife
…That’s Amore.


When a dad doesn’t care if we celebrate his birthday a day sooner because he wants his son to be able to attend a birthday party HE was invited to,
…That’s  Amore.
When a dad sacrifices jobs to spend more time with his family,
…That’s Amore
When a dad will let his son watch
Sesame Street
all day long on HIS big screen T.V.,
…That’s Amore.
When a dad does his share of the transporting, parenting and taking the kids to appointments,
…That’s Amore.
When a dad takes his youngest son to buy his first bicycle,
…That’s Amore.  
When a dad uses his vacation time to share the responsibility of staying home when his son is off from school,
….That’s Amore
When a dad would give up going to his favorite Steakhouse for his birthday, and  get pizza and spaghetti instead,
….That’s Amore

So no matter how it turns out, my husband will be surrounded by those who love him the most because,
…That’s Amore !
So, Today we celebrate you, Devoted Dad.
Happy Birthday !

Wednesday, March 16, 2011

If he were here....

If he were here, he would squeeze you tight.
If he were here, he would give you tickles till you could not take it any more.
If he were here, he would let you jump on his bed.
If he were here, he would take you to his favorite vacation place… (Florida)
If he were here, he would take you swimming and camping and fishing.
If he were here, he would let you put your hands to his rough beard and stim till your heart was content.
If he were here, he would love you to the ends of the Earth.
Yes, my dear one, that is what he would do, if Grandpa was here.

…dedicated to my father who always had the desire to be a grandfather and never had the chance.

David K. Hinderman
July 19, 1947 – March 16, 2001

Tuesday, March 15, 2011

What is a Tragus?

After writing my post yesterday, I forgot to mention one very obvious characteristic of my son. How could I forget? We see him do this daily! Not just once, but multiple times during the day. It affects his posture and makes it easy to stim by seeing the world in a whole new perspective.  I am amazed that he doesn't have torticollis. It happens when I raise my voice or even with just a whisper. It happens when he’s done something wrong. It happens when he hears music. It happens when there is a loud sound. It happens when he wants to “shut down”. It happens in anticipation, and sometimes… IT JUST HAPPENS.

When you see my son, you will see him with one finger on a tragus and the other tragus clamped down by the upward force of his shoulder. A tragus you ask? WHAT in the world is a tragus? Never in a million years would I have ever cared or tried to research or learn what this part of the body is. Maybe I learned it in anatomy class. Clearly not a term I cared to retain. But, now, my interest is sparked? Is yours? Because, after all, how do you explain to someone what that little thingy, flap of skin is coming out of the side of your head that goes in front of the opening of your ear and then, when you press it, it blocks out sound? See, what I mean, I couldn’t ever explain that and sound the least bit intelligent.

So, just for kicks, here is the word of the day:
Tragus: The triangular , cartilaginous projection in front of the external opening of the ear.

Monday, March 14, 2011

Who is he ?

He is an 8 year old little boy with a smile and a giggle that will brighten a room. He is an 8 year old boy with the strength of a tornado when upset. He is skinny…very skinny, small in stature. He wears glasses… when they’re not broken. He has beautifully long eyelashes that we as girls wish we had.  He has pasty skin with bluish tint under his eyes.  Most kids his “type” have BIG heads. Nope, not him, his is thin and narrow.  His brown hair is disheveled most of the time. The bangs cut short make his forehead look even taller. He walks on his toes. He loves to jump. You may get a glimpse of his beautiful eyes, but not often. You may think you heard a word, but probably not. He does not carry on a conversation. His “signs” are few and far between. He points. He lets out a shriek every once in a while.  He perseverates. He likes to count. He loves his ABC’s and he’s addicted to
Sesame Street
. He loves to be tickled. He loves to play in water. He takes drinks from the faucet or out of the milk jug. He struggles to write his name. He lacks safety awareness. He still needs to be helped to brush his teeth and to get dressed. He is frustrated and misunderstood. He is gawked upon out in public. Who is he?

He is my son.

Sunday, March 13, 2011

Welcome

To you, our audience, filled with family, friends, acquaintances, those whose children who are also type cast, or those who stopped by just for a quick peek…I say welcome. No purpose to this blog but to just tell you how it is.  Our life is not simple.  It is a production. The stories you will hear will encompass the many movie genres from action packed, to comedy, to drama, to love stories, thrillers and even some unfortunate war stories.

All my life, I couldn’t wait to be a mother. The day I gave birth, changed my life forever. That day, yes, I became a mother, but was given many other roles that I just was not prepared for. I became a nurse, a teacher, a researcher, a therapist, a psychoanalyst, a chauffeur, a cook, an improviser, a researcher, an investigator, a personal assistant, a stylist, a record keeper, and a term that makes me cringe to say, but yes, a stage mom. The definition from Wikipedia that I embrace is “official manager of her child…-representing her child in negotiations for the professional services for her child.” However, I will own up to the other definition provided by the same site that stating it can be a “negative connotation, suggesting that the individual is prone to obnoxiously demanding special treatment for her child…”   But, darn it, If I don’t, WHO will?

Deep in my soul, though….I Just Wanna Be Mom