Thursday, December 22, 2011

Peace on Earth

Let Peace Flourish Christmas Card
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I just love it when I capture that perfect moment.

Oh. Yes. I did ! (Facebook repost)

This was my son's Halloween costume this year (2011). He absolutely loved being in the pink bunny pajamas. So, please, do not think I did this with any malicious intent.
Comments from Facebook Post....
  • S wants to know WHY would you do that to her E? LOL
  • This just made my night!!!! Soooo cute!!!
  • It is cute. S just said I cant believe she did that to him. LOL
  • Ohhhh Noooo Youuuu Didn'tttttt Girlfriend! Poor E!!! OMG lol.........:)
  • LOVE it!!!
  • So not nice!
  • He looks like a pink nightmare, LOL
  • OMG. He needs a Red Rider BB Gun!
  •  I love it!!!
  •  He'll only have to wear it when Aunt Clara is around...
  •  ha. haha. you. are. awesome.
  •  Oh E, you can come live with R and R until Chrismas is over!
  •  I. Love. This. awesome!
  •  He looks about as thrilled as Ralphie did wearing it...lol
  •  hahahahaha that is AWESOME!!!!!!!
  •  ‎...and that face says it all..."yeah mom...in my head I DO know that this is so wrong!" HILARIOUS!!!
  • Oh my gosh! You guys are something else! Between you, me and the walls, he does look adorable : )
  • LOVE IT!!!!
  • His expression is PRICELESS !! Just like Ralphie would have made.
  •  no way! i love it !
  • Priceless and thanks for making me smile
  • This is a classic!!!!

Tuesday, December 20, 2011

Simple Sameness = Comfort and Joy

If you've heard me say it once, you've heard me say it a million times...He LOVES Sesame Street. So, when gift giving time comes, it is very easy to buy for him.
It is simple..
                Sesame Street ANYTHING.

Friends and family struggle with buying Sesame Street items for a 9 year old boy. They don't think it is "age appropriate". IF they can get past that nuance, then they fret they may get him something he already has.

The probability of that is, um, yeah,  99% .

We have just about every Sesame Street DVD


which has replaced every Sesame Street VHS tape



He has the stuffed animals and the Sesame Street paraphernalia...


Trust me when I say, "It is Okay"





because this is HIS Comfort and Joy


Nothing else matters..

Good tidings to you and yours!









Sunday, November 27, 2011

Am I a Muppet or a Man?


The Muppet Movie opens by fast forwarding through the childhood of brothers, Gary who is a human and Walter who is a muppet. Gary grows up “normally” and Walter struggles with meeting his milestones and falters with "fitting in".   

I would guess that most people seeing this movie briefly ponder how a muppet and a human could be brothers in the first place.  Undoubtedly, I'm further guessing they quickly release themselves of the mystery by giving credit to "It's just a movie." They don’t beat themselves up wondering how the same parents could have such different children. 

I, on the other hand, as a parent of a child with autism and a “neuro-typical” child, struggle with this every day of my life.

...How did this happen?

...How did I have one child with autism, and one child who developed "normally"? 

...How “different” do my children perceive themselves and each other? 

...Will they love each other and themselves, unconditionally throughout their lifetime?

...Will my neuro-typical child struggle in his adulthood to find that balance between loving his brother and enjoying his own life?
There is a moment in the movie that Walter and Gary struggle with their identity.
Each one asking, Am I a muppet or a man?
In the end, they acknowledge their differences and accept who they are,
    and they sing...

              “I think I made up my mind
               Now I understand who I am
Gary :    I’m a man ....I'm a muppet of a man
Walter:  I’m a muppet...I'm a very manly muppet
              This is what I am” 

                           (Am I a Muppet or a Man by Bret Mckenzie)
Although  loving autism can be difficult,
                                  loving this amazing boy is not !!!
I pray this brotherly love lasts forever !

Saturday, November 26, 2011

Life's A Happy Song

Well, we made it out of the house,

out of the car,

through the parking lot

and into the lobby.

By golly,we were even able to reproduce our last attempt into the movie theater...

"He joyfully walked through the doors
and down the hallway to the designated theater.

He pulled down the seat and sat down.

He donned his noise cancelling headphones,
and appeared to enjoy looking around at all of the other movie goers.

FINALLY, the four of us together in one place
about to enjoy a movie as a family..."

I anxiously anticipated having to leave with him out of the movie theater again.
I waited....
                  and waited.....
                                        and waited some more.
                         Then  I realized, I WASN'T waiting anymore.

I was smiling in amazement, and my heart was filled with JOY. This little boy was as happy as could be, and so was his family..
                               ALL of us ...
                                                   TOGETHER
                                                                        AT THE MOVIES !!!!!

As the movie started and the music began, the words in the song couldn't have expressed how I was feeling in that moment...

"Everything is great
Everything is grand
I got the whole wide world in the palm of my hand
Everything is perfect
Its falling into place
I cant seem to wipe this smile off my face...."
Life’s a Happy Song: written by Bret McKenzie


Tuesday, September 13, 2011

Never Underestimate the Power of an Encounter with a child- Disability or No Disability

It was a cool dreary day up by the “Great Lake”, so I decided to run into the local Target store for a quick purchase and then to the Starbucks counter for a warm yummy treat. While walking up to the line, I shuffled around in my purse trying to locate that Starbucks gift card I just knew I had. I briefly raised my eye gaze as to avoid any collisions with other patrons. My senses were in tune even though I was sifting through every pocket in my purse. I thought I heard some commotion around me, but was apparently lost in my quest. I just knew it was in there. But, where was it? Finally, I plopped my purse up on the counter and searched again. Alas, there it was. Although only having a measly balance of $1.35, it was certainly validation for my indulgence. 

I paid for my hot chai tea latte with skim milk, closed up my wallet and purse, grabbed my packages and proceeded to the “pick up” counter. As I started to turn, I focused in on the sounds coming from the corner of the café. Out of the corner my eye, I realized that those sounds were coming from a girl in a wheelchair. She was an African American girl sitting in a tilt in space wheelchair. She appeared to have spastic cerebral palsy. Her legs were contracted, and her arms were flailing in the air. Her neck was rotated to the left as far as she could get it. As I made eye contact with her, her verbalizations became louder, her arms raised higher and her body became more spastic. Her excitement peaked my curiosity.

I approached the table, and I offered a “hi”. As I got a more direct look, I realized I knew this young lady.  Although her name escaped my caffeine deprived mind, I knew exactly where I knew her from. I introduced myself to all who were sitting at the table, and the caregiver asked the young lady if she knew me and if she could tell me her name. The young lady shook her head excitedly. I briefly explained to the caregivers how I knew this young lady, and I reminisced with the young lady for a few minutes. The one caregiver responded and said, “When she saw you, she kept shouting ‘I love you’, ‘I love you’. That is usually what she says when she sees someone she knows, but we really weren’t sure if she really did know you.”

You see, in 2001, I worked at an extended care facility for disabled children. It was a part time/second job for me. I would come to the facility in the evenings and see these children after dinner. This was by far one of the most difficult jobs I ever had, and certainly not very rewarding due to the lack of “progress” these children made. I worked there only a very short time. The stories behind why these children lived there was heartbreaking.

She was one of the children I directly worked with. I remember her room. It was the first door on the right as I came up the stairs.  She was usually laying in bed or sitting up in her wheelchair. She physically was not able to do anything but just sit there. She would watch people pass by her door, or would be placed in front of the television by the staff. This girl could make eye contact and make sounds, but, she could not communicate. She could not  move voluntarily, and so, it was my job to provide range of motion exercises. I remember how difficult it was at first to keep a one way conversation going for a fifteen minute session. It was a whole lot of small talk about the weather, her braids, her clothes or what was on the t.v. or radio to avoid the otherwise, uncomfortable silence. I am in total amazement that this young lady remembered ME after 10 long years with such a brief interaction!  

Way back then, I was married without children. Little did I know that two years later I would give birth to a premature little boy who would grow up with the label of autism; who would face the challenges of living in a world with a disability; who would not be able to speak a word;and, who would experience prejudice and bullying. Those children I worked with  taught me so much. They taught me how to love ALL children. To really understand the scope of what a child with a disability faces, especially without a family who is physically and emotionally able to take care of them.

So, I leave you with this…

"When your child walks in the room, does your face light up?


Let your face speak what's in your heart..."

by-
Toni Morrison



 

Sunday, August 14, 2011

THANK YOU

Sometimes, the words "Thank You" are just not enough to express the sincere gratitude that one has. This weekend, my brother and sister-in-law threw a fundraiser to raise money for our local Walk Now For Autism Speaks event. Despite the economy, the out pour of support was overwhelming.

When a family is affected by autism, support often falls by the wayside. The closest of family members turn a cheek, friends fade away, and community resources just aren't sufficient. Parents are left standing alone to fight an unfair war.

Sometimes I do get the question,"What can I do to help?" from family and friends that try to reach out. But, I am always quick to answer,"nothing". I don't really know why. Is it that I don't want to bother someone? Do I feel that "no one can do it better than me?" Do I feel inadequate if I accept the help? 

Neither here, nor there, last night was simply amazing ! Two and a half hours on a Saturday night, so many people came to "HELP" in their own way.   Honestly, I did not personally know half of the attendees, but they came in numbers.  They gave their time to show "I care", "I understand", and "I want to help in anyway I possibly can".

As I reflect upon the night, I want to thank everyone far and near for their love and support.

To my brother and sister-in-law: Thank you so much for the tremendous amount of work you put into this fundraiser (for the second year in a row!). You thought of everybody AND everything ! The details and organization were impeccable ! We love you so much and want you to truly know that !

To our family:Thank you for the time you give us for the so needed "respite" that we need to rejuvenate ourselves. Thank you for standing by us through the good and the bad. And to those who live miles away, thank you for being what true family should be for showing kind words, love and support.

To our friends: Thank you for still keeping us as "friends" ,accepting our child, and understanding that we still cherish our friendships despite the limited time we can spend together.

To our facebook friends: To think that our paths may have never crossed again, but thanks to social networking, we have been given the chance to reconnect...and a chance to say "Thank You" for choosing to share in our lives again.

To those we did not know before last night: Wow...thank you, thank you, thank you... For taking the time out of YOUR day to come out for a worthy cause. Although you did not know us personally, it truly shows the love and respect you have of the friendship of the person who invited you to this event.  Because it meant something to your friend, you too, let it mean something to you by coming and showing your support.

To those who were unable to attend: Thank you so much for your kind words of support and encouragement and your donations.

For those who donated gifts: Thank you for your generosity. The raffle was a huge success because of you!

So, yes, "Thank You" is two simple words, but the complexity of how I wish to express our gratitude is insurmountable.

Thank You !




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Sunday, May 22, 2011

Wake Up Call

It happened
The phone call came.
Those words I heard on the other side of the phone are ones that have only haunted me in my dreams. Today, though, it was real.

My husband’s cell number came across my phone. I could hear the nervousness in his voice.
“We were in a car accident.”

Thank heaven for the quick words to follow.

”Everyone is okay.”

The interrogation for the details began. I did not give my husband a chance to answer one question before I asked another…
“What happened?”
“How is he?”
“Did he cry?”
“Is he scared?”
“Are you sure he is not hurt?”

Then, the following questions flooded my own mind and heart.
What if he did get hurt?
What if my husband (or I) was unconscious and he was not?
How would the “First Responders” know anything about my son?
How would they know he had autism?
How would they know he could not speak?
How would they know if he was hurt?
How would my son react to strangers?
How would they treat my son?
Would my son understand what was happening?
Where would they take him?
How would I find him?

Then came the conviction of negligence.

What would I ever do with myself if something happened because I did not do everything possible to help my son in a crisis like that?




Saturday, May 14, 2011

Thank You To The Women On My Journey

Over the past week,  I have been reflecting upon ALL of the women who have made an impact on my life, and today, I want to dedicate this poem to YOU...

The Women On My Journey by Rev. Melissa M. Bowers

To the women on my journey
Who showed me the ways to go and ways not to go,
Whose strength and compassion held up a torch of light
and beckoned me to follow,
Whose weakness and ignorance darkened the path and encouraged me
to turn another way.

To the women on my journey
Who showed me how to love and how not to live,
Whose grace, success and gratitude lifted me into the fullness
of surrender to God,
Whose bitterness, envy and wasted gifts warned me away
from the emptiness of self-will

To the women on my journey
Who showed me what I am and what I am not,
Whose love, encouragement and confidence held me tenderly
and nudged me gently,
Whose judgement, disappointment and lack of faith called me
to deeper levels of commitment and resolve.

To the women on my journey who taught me love
by means of both darkness and light.

To these women I say bless you and thank you from the
depths of my heart,
for I have been healed and set free
through your joy and through your sacrifice.



 

Monday, May 2, 2011

Regrets Only

When I finally give in and allow myself to take a break,
that is when it happens.

Right when I feel comfortable about my decision to leave him,
that is when it happens.

No matter how much I have been reassured,
that is when it happens.

Right when I have the peace of mind to relax,
that is when it happens.

When the laughter and contentment come,
that is when it happens.

His lack of communication leads to frustration. His frustration leads to agitation. His agitation leads to aggression: hitting, biting, throwing and crying. His violent actions ensue, and I am not there to intercede. 

When this happens,
my laughter and contentment leave,

When this happens,
my peace of mind to relax disappears,

When this happens,
my reassurance is nonexistent,

When this happens,
I feel uncomfortable to ever leave him with someone again,

When this happens,
The guilt sets in.

Thank you for your kind gesture. Please take no personal offense.
RSVP: Regret only….AGAIN.

For those who are so close to us and have had the bravery to give us respite, I say thank you and I am sorry for any repercussions~he really does love you, and so do I !

Thursday, April 28, 2011

Happy Birthday and Happy Ever After

A birthday is a day to celebrate you and the day you were born. It’s ALL for you. The day can be relaxing or packed full of activities. There can be parties and special dinners, cake, ice cream and presents, too. It’s a day to feel special. Your family and friends wish you to be HAPPY. They send cards, they call you on the phone, or nowadays, they text you or even send those wishes through facebook.

Today is your birthday. WOW, nine years old today. So many HAPPY birthday wishes came your way today? Did you hear them? Do you know what they mean? Do you really know how many people wished you Happy Birthday today?

Tomorrow, people will ask me, “Did he have a Happy Birthday?

As I reflect, I could say…

You appeared Happy because you slept in
You appeared Happy because you wore your pajamas all day
You appeared Happy because you got to watch
Sesame Street
all day at Nanny and Papaw’s
You appeared Happy when we sang the Happy Birthday Song to you
You appeared Happy because you got to eat cake and ice cream for dinner.
You appeared Happy while playing with your new toys and watching your new videos.

As your mother, I know you. Although you couldn’t say it with words, you showed it with your actions, with your smile and with your laughter. "Yes," I will say, "he had a Happy Birthday."

Happiness is something I pray for you everyday, not just on your birthday…anything from contentment to intense joy. I want you to feel it, to experience it, and to keep it with you all the days of your life.

Reality is that depression affects many individuals with autism, especially as they get older. With each birthday, I realize that I am not able to protect you as much as I was the year before. You are a year closer to becoming an adult and soon, you will be interacting with society on your own.

The difficulty that you have communicating your thoughts and feelings so others can understand them makes my heart ache. Most people rely on their relationships with others to have happiness. I ask myself, “Will others be able to see what makes you happy? Will they encourage your happiness, or will they steal that happiness away?”

So, as I write this snippet I pray fervently that one more person in the world will become a little more aware of the scope of autism
…. that they will know what is right in their hearts,
…..that they will truly know and respect that EVERYONE has a RIGHT to be HAPPY.
Not just on their birthday, but everyday of their lives.

Sunday, April 24, 2011

Non Verbal Communication 101

The outward excitement that exuded from our 4 year old as we started on our “adventure” to The Great Wolf Lodge was obvious to all around. Anyone could hear it in his voice, see it on his face and watch it in his actions.

Understanding what our other son was thinking and feeling about this adventure was another story. As parents of a nonverbal child with autism we depend on “reading” his non verbal communication in every circumstance. It is vital to quickly pick up on his cues to help him (and everyone else around him) to have the most positive experience ever. Sometimes we are successful with this feat, sometimes we are not.   

As we started out Friday morning, he willingly donned his coat and piled into the car with us. For the hour drive, he sat quietly with his noise cancelling headphones on and his hoodie pulled up over his head. He peered out the window. He seemed content. Occasionally he would look my way when I talked to him and his brother about this secret adventure that we were going on. No inquisition on his face, just a stare.

I wish I knew what he was thinking. Did he know where we were going? Did he figure it out? Was he excited about this? Was he wondering, too…”Are we there yet?”

We stopped to eat lunch and the rest of the family surprised the kids by showing up there. He appeared excited to see them. He greeted them all and even wanted a kiss from grandma. When they were getting ready to leave, he took my glass of iced tea and dumped it over. Although entirely inappropriate, this was his way of getting our attention to try to tell us something. It may have meant he was upset that they were leaving. It may have meant he was he telling us that he was done and he wanted to go, too.  Or it may have meant something entirely different.  We don’t know.  We had no time to analyze.  Honestly, we still have not deciphered its true meaning. There are times when we have to make judgments and assumptions in attempt to divert escalation of the behavior. Leaving was the swiftest and most efficient solution.

When we pulled up in the car to the entrance of The Great Wolf Lodge, he started to make noises. They were happy noises. He even had a smile on his face and clapped his hands. Did he truly know where we were? Did he remember this from last year when we came? Only he knows. If I had to make an assumption based upon his body language, his facial expressions, his gestures and the inflection in his vocalizations, I would say that he was one happy fellow that he was at The Great Wolf Lodge.


One thing we need to watch for is when our child is being overloaded with sensory input. Too much, too fast leads to a meltdown quickly. If one has ever been to The Great Wolf Lodge, you know that it is very loud in the swimming area. For the child with autism, it is sensory overload: the sound of the water splashing, the fans humming, and the echoes of the people shouting. There are bright lights and movement everywhere. We used earplugs and the Ear Buddy to help filter some of the sounds. Surprisingly, he tolerated it very well.

Although we rely heavily on reading HIS nonverbal communication, our son is unable to read nonverbal communication of those around him.  He has difficulty respecting the personal space of others. We often have to remind him “Touch nice” or “Hands to yourself“.  Relaxing in the pools, we noticed our son would slyly scoot away from us. We earnestly followed him to be in arms reach if an intervention was needed. As hard as it was, we could tell by HIS non verbal communication, he was telling us to “back off, guys, let me explore and have some space.” Almost as if telling us “You’re cramping my style.”

He is almost 9 now, you know!

So we did, and you know what? He made us proud!

It was time for diner and we were a little worried that he wouldn’t want to leave. However, he transitioned out of the swimming area, changed clothes and ventured into the car to go to another restaurant for dinner without incident. There were 10 of us, so waiting for a table and for all of the food to get there was a little long. He was so patient. But guess what? When he was done, he was done. How did we know? Well, when he threw the silverware on the floor and hit his dad.  That was the obvious sign. So, out to the car he and I went. Once in the car, he calmed down and we waited for everyone else to come out.

Back at the hotel we ventured to the arcade….OH Thank you arcade for the game where winning the spiky sensory balls were so easy. I won him as many as he could carry and squeeze at once. (BTW, that would be four!). They kept him occupied for many hours up in the hotel room, along with
Sesame Street
on the computer.


The slightest changes in routine cause our son distress and, it can turn a fun time sour in no time at all. Bedtime was approaching, and he was just not tolerating this change in routine. This wasn’t his house. This wasn’t his bed. Not to mention there is a “CAVE” in the room. We could sense his anxiety. He paced back and forth throughout the room. He was pointing to the door and trying desperately to escape. He was in fight or flight mode. With everything we had we tried to console him. He ran to the bathroom and pointed to the tub. He wanted to take a bath to soothe himself. Yes, it was eleven o’clock at night, but if that was what it would take, we would do anything. He took a bath, and got into his pajamas, but he would not go toward the beds. He still wanted to leave the room. I grabbed my cell phone, some pocket change and slipped on my shoes. Out the door we went.

I could hardly keep up with his cadence. He was pulling me down the hallway. He went to the windows and pointed to the waterpark. The lights were out, and no one was in there. I explained that it was closed and everyone was going to sleep and when they woke up, they could come back in the morning. He wasn’t having it. Desperate and panicky he led me to the front door of the hotel. It was pitch black outside and pouring rain. He didn’t care, he wanted to leave. I had to stand my ground and told him we were not leaving. I took him to the gift shop thinking a treat would soothe him, but it didn’t. I tried to hold him, to console him, but I couldn’t. His body was tense. The sounds he was making were heartbreaking.

We sat in the lobby. The clock said 11:40. I knew that this was going to be a long night. To me, it was quiet in the lobby although, you could tell the conversation of two patrons, who were sitting by the fireplace, was bothering him. He fidgeted on the couch. He was restless. I walked with him to a darker hallway. We sat on the couch and I held him tight. His eyes would slowly shut, then open suddenly as the employees passed by in the hallway.

At last, I felt his body go limp and his breaths get deeper. I didn’t dare make a move until I knew for sure he was asleep. As I sat there for about another 30 minutes, my heart cried out for this little boy. I cannot even imagine what he feels like as he goes through life without being able to speak a word. For his entire life, he has been told what to do, when to do it and how to do it. He lives in a world that doesn’t speak his language. He is unable to tell someone when he is happy, worried, afraid or angry. He is constantly relying on the scope and impact of non verbal communication, and mostly on the ability of others to interpret that correctly. If I had to do that on a daily basis, I would be frustrated and anxious, too, my precious one. Just know, momma’s here for you, and I’ll do my best!

Saturday, April 23, 2011

Are we there yet?

Our family was going on an overnight stay at the Great Wolf Lodge. We kept it a secret to minimize the excitement for one child, and the anxiety for the other.

Although, we were able to keep it a secret, we were unsuccessful with keeping the emotions at bay.

The suspense was too much for our four year old.

“An adventure? What kind of adventure?” he would ask over and over again.

And, each and every time, our response was, “We told you, it’s a secret!

Everyday, He would try to get an answer.

One day, he crawled up on my lap and whispered in my ear,” Mom, are we going to Chuck E. Cheeses?”

“No, not Chuck E. Cheeses.”

The next day, “Mom, is it a bouncy place? “No, not a bouncy place” I replied.

“Mom, what about the movie theater”? “No, not the movie theater”.   

“Mom, I know, We are going to the park, right? “No, honey, not the park”.

Finally, the day that he was waiting for came. As we packed the car, he grabbed his dragon stuffed animal and carried it to the car.” “Why are you taking that with you? “I asked.  He responded,” Mom, dragons go on adventures.”

“Oh ?! okay,” I said.

Thank heavens the drive was only an hour ! Because, for that entire hour, we were serenaded with Fa La La La La, La La La La !!!! Really? A Christmas tune in April?  Each time we asked him to please stop singing, he would ask,” Are we there yet? “And each and everytime, when our reply was "no", he would say,”Oh, man this is taking so long.”

Yes, one hour in the car for a 4 year old AND for the parents who keep hearing “Are we there, yet” IS eternity…

When we reached our destination, the excitement he exuded was an understatement. He was so surprised to see that his grandmother, his cousin and his aunts and uncles were there, too.

He ate. He swam. He ate. He went to the arcade. He ate. He conquered the waterslides. He ate. He played…Oh, did I mention that he ate? Yes, this boy can eat!

He was disappointed as “our adventure” came to an end, but we were able to overt the tears by telling him we were going to get something to eat before we drove home. We weren’t even in the car 5 minutes, and he fell fast asleep. As we arrived at Sonics, I called his name gently to wake him up. I tapped his leg to arouse him, but to no avail. “Are you going to wake up and eat your hotdog?” I asked. Those big brown eyes opened. He ate his dinner without a word and then fell back to sleep.

It was a quiet one hour car ride home. No Fa La La La La La’s. No “are we there, yets”. No questions, no statements, no tears. Just silence.

When we arrived at home, he awoke and walked into the house. Still a little tired, he laid on the bottom step and said, “Mom, Dad….it sure is good to be home.”

Thursday, April 21, 2011

Family of Four

We could do this. I just knew we could. It just seemed right.

He was smiling. He was happy. He had a great day at school.

He waited patiently for his dinner at the restaurant. He ate everybite. His belly was full.

Transitions in and out of the car were uneventful.

Yes, this was it. This was going to happen. We were going to the movie theater as a family. ALL four of us!

Tickets were pre-purchased and the long line was avoided (P.S. Thank You Fandango)

He joyfully walked through the doors and down the hallway to the designated theater. He even had a skip in his step as we found 4 seats together. He pulled down the seat and sat down. He donned his noise cancelling headphones, and appeared to enjoy looking around at all of the other movie goers.

FINALLY, the four of us together in one place about to enjoy a movie as a family.

A few minutes passed, and the lights dimmed and the bright screen illuminated. As the action flashed on the screen... I saw it, I knew it...

He was not going to be able to do it. He could not look at the screen. The sights and sounds were just too overwhelming. He pointed to the EXIT and signed "HELP". He got out of his seat and bolted for the doors. I left with him and walked through the cinema hallway, hoping to ease his anxiety. I tried multiple times to get him to go back in, but he simply could not do it.

HIM not being able to do it = US not being able to do it..Autism divided this family again.

1 hour and 36 minutes later, our family reunited.

Family Of Four, But Admit Only 2

Friday, April 8, 2011

So close...but yet so far

My husband and I don’t usually ever have a moment to sit back and observe our child play in public. We have to be active participants in playing with our son. We are the ones that jump with him, that bounce with him, and attempt to play catch with him. We are the ones that pull out all the tricks to engage him….Oh, what we won’t do to make sure this kid has fun.  We yearn for the smiles, the giggles, and the shrieks….all of which affirms his fun! 

Last night we took the boys to Pump It Up taking advantage of “sensory night” for children with autism and their families. This is one of our son’s favorite places to go. Jumping is his thing.  For the most part, he wanted his dad to jump with him and wrestle with him in the bounce house. Of course, I participated, but tonight, I had an amazing opportunity to be an onlooker, observing him play, observing when had he had enough? When did he want more? What activities was he drawn to, and which ones did he stay clear of?

Another boy with autism joined us all in the large bounce house. He had a few words, but they were quiet words and difficult to hear over the loud humming of the blowers and the loud voices of the children.  He was a smiley guy, and we knew he was having fun by the sign of his flapping hands. It appeared he enjoyed sitting in the middle of the inflatable while everyone around him jumped giving him the sensory input he was craving.

That is when I noticed it. It was interesting and peculiar, yet very intriguing. Was I really seeing what I truly in my heart wanted to believe I was seeing? Was he really doing it? Was my son trying to make a friend? My eyes didn’t leave him. I blocked out every sound and sight around me as I watched, and watched some more. 

I noticed my son’s laughter would increase as he would bounce right by this other boy. He would crash into the wall, stop, turn around, locate where the boy was again and then, full speed ahead, bounce right back by that boy as close as he could. This time, the boy reached out his hand as to try to “tag” him. My son shrieked in delight. After many times of this “game”, my son approached the boy very slowly. He came ever so close him, but not enough to touch him. He pointed to him and then looked at me, as if was saying,” Hey, mom, look at my new friend”. At that moment, I quickly prompted him to say” hi”, but he squealed and darted the other way. The boy continued to smile and flap his hands. The boy watched my son out of the corner of his eye. He made a move, but was stopped in his tracks by the voice of his caregiver who sternly stated, ”quiet hands, don’t hit.” The boy restrained himself and then left the bounce house.

My son quickly ran to the netting, scanning the room. Then in an instant, he was out of the bounce house, too. I quickly left to see where he was going. Breaking all the rules, both of them climbed the ladder to the slide and down they went. Neither one paying attention to the unsafe nature of them going down together, they were stunned when they crashed at the bottom of the slide. There was a moment of silence and motionless bodies. But the laughter returned and then they went their separate ways.  

I started off to chase my son, but stopped to listen as the other boy’s caregiver said,” I think he has found a friend. He doesn’t have any friends in his neighborhood because they are so mean to him.”

I couldn’t say a word. I just gave her the empathetic look of “I so understand.” This was a Dagger…a dagger to the heart, bringing me back to reality. My heart longs for the day that my son will have a friend.

But, no, I wasn’t going to let that bring me down, because this was reality too! My son does not have the words to talk or the skills to play productively, but yet tonight, he wanted to engage with another boy in his own way. He was trying to be social. He was engaging (without being prompted ), he had an interest…he wanted a friend.

He demonstrated social skills that were so close, but yet, ...so far.

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