Time Tells All

The day by day monotony often fogs the reality of the person my son is becoming.

His hard work brings to light that truly,

Time in NOT of the essence.....
...it is patience.. ONE milestone at a time...in HIS time.

He is STILL my son, and ALWAYS will be,

but now he is 12.

He still has a smile and a giggle that will brighten a room.

but, he is stronger...

and taller.

He is still skinny,

but sports a wider girth.

He brushes his teeth, combs his hair and dresses himself.

He makes grilled cheese sandwiches, pudding and cinnamon rolls.

He can build a Mixel and put a 50 piece puzzle together.

He can write his name and use a calculator.

He can make a grocery list and find those items in a store.

He picks up his clothes and puts his dishes in the sink.

He enjoys rollercoasters, family vacations and going to the movies,

but, he still enjoys Sesame Street and The Muppets.

He ziplines, horseback rides and bowls,

but he still lacks safety awareness.

His thick brown hair is still disheveled,

but, his eyeglasses stay intact more frequently.

He still loves to be tickled, and has a built a wonderful bond with his brother.

He can't say "I love you",

but his hugs and kisses say so much more than words.

He is still non verbal,

But, I am able to understand him better.

He is content...

and so am I.

I am so happy to be able to look back at past posts to see how far he has come.

I am so proud of MY SON for all he is becoming. I can't wait for time to tell us more!

This Is For You, girl

There is a girl...
A girl I never met...

A beautiful girl...
A beautiful girl whose face I've never seen....

A girl who's heart is that of gold...
Courageous, sincere and caring beyond words.

A girl who has made an impact...
an impact on a mother...
a child...
a community...
A girl who gets it!

A girl who will grow up to be a wonderful woman and reach not just a mother...
or a child...
or a community, but

A girl who will change the world.


You see, Friday night, I was riding in the car with my husband. I was making small talk, trying to curtail the anxiety that was coming along with going to his 25th class reunion. We caught up on the busy week that was behind us, and we lamented over the tragedy in Aurora, Colorado. I pulled out my phone, caught up on my emails and then proceeded over to Facebook to read a new private message from one of my "friends".

I was speechless. The tears were welling up. My husband was perplexed, and he pleaded, "Stop, your make-up will run!"

Trying to get the words out, I read him the following...
and he cried, too.


"Hello Mrs. R!

This is B. My mother was sharing with me that she has two Facebook friends with children who are autistic, and I just want to say I think you are fantastic. I have so much respect and appreciation for you and all you do. I can see that you love your boys very much, and you must be such a special person. It is people like you who really make others stop and wonder. With people in the world like you who have so much love to go around, how can there be so much terror and hatred? I will be thinking about you and praying for you. Your boys are so lucky!"

The courage she had to reach out to one of her mother's friends,whom she has never met, and write these words is an AMAZING quality.

Earlier this week, this girls mother posted that her daughter requested "in lieu of birthday presents, she would like people to donate to the charity of choice. This years pick is Autism Speaks, because everyone deserves a voice."
...WHAT teenage kid does that????

I'll tell you what kind...
A child of God!

This is for you dear, B!

I praise you!
I praise you for noticing.
The autism community praises you!
It is people like you that will help raise awareness about autism. I don't know if you know who Dr. Temple Grandin is, but she has been quoted to say "different...not less". That is true with all individuals, autistic or not.

The world needs people like you,B, to show love for humanity. I respect you so much for your maturity. You exude love in your words and in your actions. You are selfless,and your charitable heart will certainly be rewarded.

I am going to leave you with the words that YOU wrote, because I couln't say it any better!

"It is people like YOU who really make others stop and wonder. With people in the world like YOU who have so much love to go around, how can there be so much terror and hatred? I will be thinking about YOU and praying for YOU. Your MOM is so lucky!"


Mrs. R

Thank God For Snow

I have many childhood memories that allow me escape from the monotony of adulthood.

Playing outside
Running
Jumping
...just being outside from dusk till dawn

I remember
camping and hiking
and, bike rides all day long

Swimming till my fingers and toes were waterlogged
and chasing down the ice cream truck

Seeing Grease and ET a gazillion times at the drive in

Riding rollercoasters

Going on vacations

...and sitting on my grandmother's lap for hours.

The list could go on and on.

Everyday something sparks a reflection of my past and it makes me wonder, what will HE hold onto as childhood memories?

Will it be memories of therapies and doctor visits? or strict ABA protocols?

or will he, too, be able to reflect upon those joyful times.

I hope one day he will be able to tell me.

Oh, Dear God, PLEASE let him be able to TELL me...

But for now

Today

I thank you, God, for the snow.

Peace on Earth

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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!!!!

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!





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 !

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



Muppet Movie Realease: Wednesday, November 23rd 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



 

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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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?

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.



 

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 !

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.

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!

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.”

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

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.