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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