Redefining Typical

A Mother, A Son, A Journey…..with Autism

113th Congress: Don’t let the sequester hurt our children February 28, 2013

Filed under: autism -Advocacy — Cheairs @ 5:39 pm
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these cuts.

yes, these cuts.

they will impact my Dawson.

cuts to special education services.

cuts to services for children and adults with intellectual and developmental disabilities.

that is my child.

the slashes, they mark him.

the red does not come from the pen as you carve away at the budget.

the red comes in the eyes of a  mother as she learns that there is no longer funding for her autistic son’s beloved teaching assistant at school.

the red comes on the bended knees of a father who learns that his daughter’s speech services are being cut.

being ripped away as her first words at the age of three are beginning to form.

the red comes in the tears of an elderly parent whose intellectually-disabled adult child’s funding for supportive housing is ripped away.

and with wrinkled hands, she lays her head on the table.

she pulls her wiry gray hair.

and her worst fear is born.

how will I care for my child?

these cuts.

yes, these slices.

they will impact my Dawson.

they will impact your friends.

your neighbors.

your children.

your grandchildren.

with the pen.

they sever.

carve.

lacerate.

and I reach out my hands, and say stop.

for my sweet little boy.

stop.

 

Copyright Cheairs Graves Februry 24, 2013

 

It’s October Why Should the White House be thinking about their annual easter egg hunt right now? October 27, 2011

Filed under: autism -Advocacy — Cheairs @ 12:40 am
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I know that the day is almost over, but I really needed to let you know that today’s post is over at SPD Blogger.  So please click on over and check it out.

 

One Closet, a Zillion Treasures September 9, 2011

Filed under: autism,autism -Advocacy — Cheairs @ 5:11 pm
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I have been cleaning out closets in our house. This is no small task here at our home. I am one of those people who just stuffs a closet full of anything and everything.  When I say stuff I mean stuff!  I push, cram, kick, and squeeze whatever I can into a closet. Then with one last shove, I push the door closed. When everything starts falling out, I just stuff it all back in and shut the door quickly.

So going through a closet takes me a long time. It takes even longer when I sit on the floor and look at photographs from my childhood, my years at summer camp, wedding pictures, old letters, and artwork and cards from Dawson and Mae Mae.

This past week, as I sat on the floor with bins and boxes all around me it, was like finding a zillion treasures. Each picture, each letter, each piece of artwork sparkled as I sat in the quiet space in Dawson’s room. I was able to breathe in all the pieces that were my life, Dawson’s life, Mae Mae’s life, and Dave’s life. All of these beautiful treasures were hidden and stuffed away in a closet. I opened the door and the gifts of my life, of my families’ life, came falling out.

One of the most precious jewels that  I found was a card that Dawson made for me this past May for Mother’s Day. I sat on the floor and cried. Tears full of pride. Tears full of hope. Tears full of laughter. A card in which he stated why he loves me.  Yes, you just read correctly: why he loves me. Written in his own handwriting. Made with the help of his caring and loving teacher. Yes, my son wrote me a Mother’s Day card and told me why he loves me.  I share this card with you:

 

My Mom by Dawson

My Mom

I love her.

Ask me why.

Because she makes me feel happy.

Because she smells like flowers.

Because she is the color red.

Because she looks like cookies.

Love,

I love you Dawson

~~~~~~~~~~~~~~~~~~~~~~~~

Thank you my sweet Dawson for my most special card. I will carefully place it in a special bin with all of the other treasures that you and Mae Mae have given me. I will look forward to years ahead when I will once again clean out our closets and will again rediscover this beautiful gift that you made for me. And I will smile again when I read that you love me because I look like a cookie. Thank you my sweet boy for making cleaning out one closet such a sweet treasure.

 

Copyright © cheairs graves September 11, 2011

 

 

One table August 31, 2011

Filed under: autism,autism -Advocacy — Cheairs @ 2:54 am
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I am sitting at the table.

I look across the hard brown slab of wood that is dividing “their” side from “our” side.

I see their smiles. I see their notebooks. I hear the clock ticking.

I hear the mindless chatter about the weather.

I feel my breathing – I feel every shallow breath.

I see my fingers tapping – first on my legs, then on the table.

I close my eyes.

I tell myself, “Don’t cry! Don’t cry! Whatever you do, don’t cry”

And it begins.

My son’s Individualized Education Plan.

Their words swirl around my head.

All of the things he cannot do.

And with every word that comes from their lips, I relive the day he was diagnosed.

I tell myself, “Stay focused. Stay focused.”

I am his mama. I will get him what he needs.

I have to get him what he needs.

Present Level of Performance, Goals, Accommodations, Placement.

I run my hands through my hair.

I bend my head over.

I clinch my fists under my eyes to hold myself up.

Will I get him what he needs?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The meeting is over.

I sit in my car.

I am crying.

I can’t breathe.

I bring my hands to the wheel. I can’t make them stop shaking.

I am helpless. Utterly and completely helpless.

My boy. My sweet baby boy.

What am I going to do?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I walk in the door.

I walk straight to the refrigerator.

I grab the bottle of wine.

And I drink.

I pour another glass.

And I drink.

Another glass. Another glass. Another glass.

And I drink. And I drink. And I drink.

My son, my daughter, my husband.

And what will they do?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It has been two years since this meeting.

The hard brown slab that divided their side from ours changed.

It began to flow.

I was able to put out my hand.

And from their side, they grabbed it.

And they put out their hand.

And from our side, I grabbed it.

It was a lot of work.

Tedious work.

It was painful.

So very painful and hard for everyone.

And there were tears.

So many, many, many tears.

And I almost broke.

Only God knows how close I came to breaking.

But together we decided what my son needed.

I never thought it possible.

I thought it anything but possible

A meeting.

A document.

They are so powerful.

As a mom I felt so powerless.

But the hands came together.

From two different sides.

Yes, they came together.

And it changed my son’s life.

It changed our family’s life.

It changed my life.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And so now I do not drink.

I have been sober for over two years.

And we sit around that table.

It can still be hard.

There is something about an IEP meeting that will never be easy.

But the meeting is for my son.

For my little guy.

Parents and educators coming together to meet his unique and special needs.

My sparkling blue-eyed boy’s needs.

And the hands will reach out across that one table.

And there will not be two sides.

There can’t be two sides.

There  must only be one.

For my son.

For your child.

Just one.

Copyright © cheairs graves August 30, 2011

 

 

 

 

 

 

 

I believe in the power of Camp August 27, 2011

Filed under: autism -Advocacy,autism-Siblings — Cheairs @ 8:24 pm
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Photograph taken by my amazing sister Susan Lowe http://www.sflphotography.com

We are heading down the highway on our way to take Dawson to summer camp. Yes, you just read that correctly – summer camp! A special camp for children with autism. A place that a friend of mine might say, “Has been kissed by God.” And  even though Dawson is attending as a day camper, it did not make this mama any less anxious about sending him.

I am a true believer in camp. I believe in camp like I believe in the laughs of my children. It is something that I feel to the core of my being. It springs forth from me and I wave my hands in the air singing the praises of  rolling out of bed at the sound of reveille, rest time in a hot sticky cabin, camp fires, singing on the back porch on a rainy day, and the sound of taps as you put your head on a damp pillow at night. Yes, I believe in the power of camp.  I have said before, I would be a different person had I never gone to camp.

For me, camp was a place that held me safe the summer after my brother died. It is where I learned to sing silly songs and throw any thought of being self-conscious to the wind. It is where for the first time I performed in a talent show in front of a hundred campers and counselors.  Oh, how I believe in the power of camp.  I have also played every role at camp: camper, counselor, special needs camp director, and now, parent. As my husband has said, “Parent is by far the toughest role.”

In my parent role, I did everything to prepare my little guy for camp – paperwork, medical forms, emails back and forth to the director, the social story about camp, and shopping for the rain poncho and sandals that were on the “What your child needs to bring to camp” list. I put his name on everything – shirts, shorts, socks, jacket, towels… you get the idea. I did it all. He was set. So with the kids strapped into the minivan listening to the soundtrack to Barbie and a Diamond Castle CD, my husband and I began to talk. Is there anything that we have forgotten to tell them about Dawson? Can we think of anything that we need to share with them at check-in? I have my pad and pen in hand, ready to jot down anything that we might have forgotten to mention on camper information forms that were filled out not only by us, but also by his teacher and speech therapist. I wanted to make sure they knew as much as possible about the Dawsonator before his arrival.

As usual, nothing gets past our Mae Mae. I sometimes think she is a Princess with bionic ear. That child can hear anything! “Mommy, what are you and Daddy talking about?” I did not answer her at first. I really wanted to concentrate on this list, and I was really hoping that she would go back to listening to her Barbie Tunes. She repeated loudly, “MOMMY, what are you and Daddy talking about?” I turned down the music, “We are talking about what the counselors at camp might need to know about Dawson.” She looked at me with a furrowed brow. I could tell she was thinking. Then she asked, “Why do the counselors need to know things about Dawson?” I turned myself around in my minivan captain’s chair so that I could really see her. “Well, sweetie. It will just help them if they know as much about Dawson as they can. Because of his autism, they need to know a lot about him.”

I am not sure what lead me to ask this next question, but something about the way that she had her hands clasped in her lap and the way that her shoulders were reaching close to her ears I knew that she needed more. So I asked, “Sweetie, what do you think the counselors might need to know about Dawson? What do you think would help them?” Now she squinted her eyes. She was thinking hard. She knew this was very important information that I was requesting from her. Then her eyes lit up.

“Mommy, I think the counselors need to know…”

1. That he likes it when you say things back to him.

2. That he has a hard time playing and a hard time sharing.

3. That he sometimes likes to pick grass.

4. That he really likes ring pops.

5. That he does not like cereal at all!!!!!

6. That he is good at running, climbing, walking.  He is really good at jumping on the trampoline.

7. That he is my favorite brother in the whole wide world.

I wrote down everything that my Mae Mae said. I then put away my pad of paper and pen. My husband and I looked at each other and smiled. “Sweetie, that is a great list.” She nodded her head. “Yes, Mommy I think that will help them know about Dawson.” I smiled, “Yes, Mae Mae, it will.”

 Her list said it all. It was a perfect. Yes, oh yes, I believe in the power of camp, and yes, oh yes, I believe in the power of Princess Mae Mae and her magical list.

Copyright © cheairs graves August 27, 2011

 

The White House Easter Egg Hunt… Do you think they need an IEP? April 25, 2011

Filed under: autism -Advocacy,Uncategorized — Cheairs @ 8:37 pm
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I just read a post by Jess of Diary of a Mom. Jess is an amazing advocate for her daughter Brooke, who has autism, as well as to her typically-developing daughter Katie.  I am sure that if her husband needed some advocacy work, she would be right there working her magic.  Jess is in Washington D.C. –- yes, at the White House for the autism meeting in honor of Autism Awareness Month. Go read her post about the White House Easter egg hunt — you will see why she got me thinking about Easter egg hunts. It made me think how the White House could do it differently so that children and adults with special needs (specifically autism) could participate. How could they write their own Easter Egg Hunt IEP?  Here’s my first draft of a proposed IEP for the annual White House Easter egg hunt to accommodate children with autism.

Present Level of Performance          

  1. The White House has a very, very, very, very, large Easter egg hunt. Thousands upon thousands of children and adults.
  2. Sensory stimulation at White House event — Overload for individuals with autism. Specifically, loud noises, loud music, lots of colors, lots of people. Visually, it’s a lot.
  3. Access to house limited — This would be a big one for our little guy because he would want to explore the whole darn White House. To say that he would be in distress upon not being able to see every room would be an understatement.
  4. Characters like Elmo with limited 1-1 access.

Goals

  1. Each child participates in the egg hunt. Participation may include picking up eggs, putting them in the basket, the child rolling on the ground next to the eggs, dropping Easter eggs in front of eyes, opening eggs, dropping them on the ground. You get the idea. If the child is smiling in a field of eggs or twirling in sea of eggs it is a success!
  2. Each child will have sensory needs met while at Easter egg hunt event.
  3. Each child will have fifteen minutes with a character and follow that character around the lawn to his heart’s content.

Accommodations

  1. Easter egg extravaganza will occur over three day period of time. Two hour time slots from 12 p.m. – 4 p.m. Limit of 25 people adults and children during each time slot.
  2. Lots of different ways to meet sensory needs of participants including a large “quiet tent” with noise-canceling headphones, swings, large pillows, blankets, and cold water bottles.
  3. Gross motor skills tent with trampoline, swings, and climbing equipment.
  4. Visuals, visuals and more visuals made specifically for each child.
  5. In-depth interview with each parent before egg hunt so that specific needs of each child with autism can be met.
  6. Something very special for the siblings — I’m not sure what this would be, but it would be something really special.
  7. Characters, characters, and more characters to receive lots of hugs.

 

So these are my proposed goals. This is just the first draft. I know it still needs a lot of work. Maybe an Easter egg hunt at home is just the way to go. I honestly would not want to take even Mae Mae to the Easter egg hunt at the White House. I can guarantee it would be way too overstimulating for me. But if we want to include children with autism at the People’s House, then we need to look at how they can be successful there. As I have said before, if my child needed a wheelchair, I would not deny him that or the ramps that he needed to access the world. For our kids with autism, our ramps look different: Our ramps are social stories, swings, trampolines, and a quiet place to escape. They are noise-canceling headphones and a room set up so that they can touch everything (and I mean everything). It means setting the goals and then making the accommodations. Looking at things differently, through a different lens.

So maybe next year, when Easter rolls around, I will hope that not only will they will Light it Up Blue at the White House, I will hope for a new beginning. My hope is that a small step will be made. That there will be another Easter egg hunt — one that meets the goals and accomodations  stated above or something close to them.  For me that will be my Easter miracle.

 

 

 

It takes a village-one very special blue village April 13, 2011

Filed under: autism -Advocacy — Cheairs @ 1:48 pm
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I wrote this the day after my sister’s Light It Up Blue Party. I share it with you now…..

My head is spinning. So many emotions within the last 48 hours. I feel like a person going through a maze – just around and around and around. I can’t get myself oriented and I am a bit numb from trying.

I am feeling all of these emotions because we just got back from the Light it Up Blue Party that my sister, her husband, and their sweet children hosted. Fifteen families decked out in blue walked down the sidewalk to my sister’s house.  It was like an ocean wave coming right at me.  It filled me with excitement and terrified me at the same time.

These grown ups, as Mae Mae would say, had gone all out. Blue eye shadow, blue hair, flashing blue necklaces, blue feathers in the hair, blue shoes, blue sunglasses, blue nail polish. It was blue, blue and a little more blue. The kids were right there with their parents enjoying blue cake, blue fruit punch, and blue glow-in-the-dark necklaces. Oh, and let’s not forget the parent sneak attack of the blue crazy string. I can still hear the screaming, screeching, and laughter of children and wet cold blue silly string streaming through the air. My Dawson and Mae Mae  right in the thick of it.

When your child has autism and group of people whom you have never met come out to support your cause and to support you, it is transcending. I was moved to a place I never thought possible. As I am writing this I am crying because I feel that I do not have the words to begin to tell those fifteen families what they did for us Saturday night.  Maybe there are no words; all I can say is that we were being held. For that moment in time, their hands cradled us.. They were there and that said it all.

There were so many moments that I could write about and as the week goes on and I process and feel all of the emotions from that night, I will write about it all. I will write about my daughter bursting into my sister’s house  and the first words out of her mouth were, “Hey, let’s go play!” and the complete joy she had playing kick ball until 9:30 p.m. Yes it was “triple past her bedtime.”  The joy she had in escaping to a world where it is not an effort to get someone close to her own age to play with her. To escape to a world where her cousins answer her questions and they respond to their names. These are things she does not have with her brother. So for my Mae Mae, it was the escape she needed and the escape that we need to give her more often.

 I will also write about my Dawson and his connection to my sister’s big black lab and how he loved lying on top of him.  Yes, that is one sweet dog. I will write about how nobody gave my son a second glance as he walked around the house with his paci in his mouth and how nice it was that I did not have to explain his paci to anyone-no grown-ups, no kids-nobody.  I will write about how my son found comfort watching the kids playing outside while he peered from a second floor window all bundled up in his cousin’s bed.  I will write about how my husband and I played “the tag team game” with the Dawsonator so that he would not break anything in my sister’s home. I will write how thankful I was that my sister could step into relieve us so that we could get a break from watching him. I will write about connecting with another mom who has a child with special needs and how we spoke the same language. And I will write about how I appreciated someone asking me questions like, “When did you know that something wasn’t right with Dawson?”and “Does Dawson know he has autism?” and “Why did you decide to share your story?” The list goes on and on in my head.

I have always heard and believe in the words, “It takes a village,” but this weekend we were taken in by a village that we did not even know was out there. A village started by my sister and her family. A village of families in blue – being present, caring, laughing, and holding our family. Oh the gift, the peace, the grace of their spirit washed over us and we will forever be changed.

Copyright © cheairs graves April 13, 2011

 

Now this is gonna be one Big Blue Party! April 1, 2011

Filed under: autism -Advocacy — Cheairs @ 4:59 pm
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One awesome sister, her extraordinary family and some of her great friends are ready. 

Blue lights

Blue drinks

Blue cup cakes

Blue tiara

Blue princess dress

Blue hats

Blue hair

Blue sunglasses

Blue door prize

Blue, Blue, Blue and yes a little more Blue

Oh, and let’s not forget the Blue couch that will be in the front yard. Now that is a Light It Up Blue Party. What are you doing to Light it Up Blue?

 

Mrs. Obama, Jess still needs a little help. We all still need a little help. We need one- just one light bulb changed in your “home” from white to blue. From one mom to anther mom. Can you help? March 28, 2011

Filed under: autism -Advocacy — Cheairs @ 8:52 pm

As you may already know, Jess of Diary of a Mom is asking autism mommy bloggers and people in the autism community to write letters to President Obama to Light It Up Blue on April 2nd for Autism Awareness. Jess wrote a moving and powerful letter to the President. Now blogger moms are posting her letter on Facebook and their blogs, as well as tweeting about it and asking for everyone’s help. It has been amazing to watch the momentum grow.   

My plan this weekend was to write a letter to First Lady Michelle Obama to ask for her help. I was going to try my hardest to craft a letter that might get The White House lit blue.

But Dawson had an off weekend and if you have ever been around our house on an off weekend, well, it is just not good.  In fact, it can be downright awful. This not-so-great weekend involved, among other things, Dawson cracking a dozen eggs on our kitchen floor and making egg drop soup in the fish tank. The results of the kitchen incident included many tears and one dead fish named Moe. At one point, I escaped for a walk, only to come home to find my husband looking dazed, defeated, and heartbroken.  The computer was acting up and my husband was not able to get Playhouse Disney up and running on the screen. On a good day, my son would get upset about this, but be able to recover.  But on a bad day, look out!

My husband told me that Dawson just lost it. Our little guy stripped down naked and was lying on the floor crying.  As strange as it may sound, my husband started a bath. It soothes Dawson to get in the tub with his paci, the lights off, and the door closed. It is like he is trying to go back to my belly, where it was safe, warm, and secure.  Dawson eventually recovered. We continued to have incidents over the weekend. More tears and anxiety, with my husband and me looking at each other with that look of “Good Lord, what are we going to do?”

I am happy and proud to say that we made it! I posted on my blog’s Facebook page that we were having a rough day on the home front. Comments of support started showing up. Then my dear sweet neighbor Denise and her beautiful children showed up at our door. My husband answered and all I heard was “Our mommy said Ms. Cheairs is having a bad day. We wanted to give her these flowers.” I went to the door with tears streaming down my face. I hugged Denise and she hugged me back and said, “We are just across the street. Next time, call me. I am good at cleaning up eggs and fish tanks. Let me take Mae Mae for a few hours. She can come to our house and play.”

I cannot describe the support I felt from my neighbor who has three kids of her own but still took our little gal for an afternoon of feeding ducks, playing, and having a few delicious sweet treats. She helped me, one mom to another. Denise and her kind spirit poured over us like water, soothing our soul and bringing us comfort and holding us in her hands.

So, I did not write the letter to Michelle Obama. I wrote this post instead. My hope is that the First Lady might read it and see the hope that my neighbor Denise gave me. That I can reach out to her and to others and they can hold us and we can hold them.

I am going to give Denise a blue light bulb for her house. If I know her, she will most likely go out and get a blue bulb for everyone on the street. She is that kind of person. I will look across the street and see that blue light and know that she is there.

Mrs. Obama, if you read this, I just want to ask you do one thing. Can you change one light bulb in your home? Can you make one light in the White House blue?

There are lots of moms out there with stories like mine. Stories of triumph and stories of “off days”. Here are their blogs. I invite you to take a look to read.   If they can just see one blue bulb from your window — one mom to another mom — I think they just might know they are not alone. That to me is Autism Awareness.

Participating blogs:

a diary of a mom

The Adventures of Boy Wonder
Been There Done That Mom
C Gregory Run
The Daily Juggle
Footprints in Time
Karacteristic
The Littlest Monster
Mom – Not Otherwise Specified
More Than His Diagnosis
Moss and Clover
No Guile
Red Shoes, Autism Blues, and Pinks and Purples
The Simile of Autism and Snowflakes
Spectrummy Mummy’s Blog
Stinker Babies
Sunrise Learning Lab
Try Defying Gravity
Welcome to Stim City

dswalkerauthor

Our Silent Movie

Puzzle Piece Princess

Light the White House Blue

A Chameleon’s Blog

KOAUTISM KNOWING OBSERVING AUTISM

 

Mr. President, Oprah….Jess is asking for your help. Can you help her? Can you help us? It is easy. My sister is doing it. Can you do it too? Can you light it up blue? March 25, 2011

Filed under: autism -Advocacy — Cheairs @ 2:38 pm
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I just received an email from my sister. I have two amazing sisters but this email came from Susan. She is not only my sister, but as many of you know, she is an absolutely fabulous photographer. She has taken pictures of our family to marry with my writing and has an extraordinary gift.

So when I received this email from her, well, I just started to cry. I did not have words. Just tears. I’d like share it with you. Here is is…

Friends – April is Autism Awareness Month. In honor of our nephew Dawson, we are participating in Light It Up Blue on Saturday, April 2nd.

Below is taken from the Autism Speaks website:

On the evenings of April 1 and 2, 2011, prominent buildings across North America and the world — including the Empire State Building in New York City and the CN Tower in Toronto, Canada — will turn their lights blue to raise awareness for autism and to commemorate World Autism Awareness Day on Saturday, April 2. We’re aiming to light the world blue all throughout April — city by city, town by town — by taking action to raise autism awareness in our communities.

 Details:

Come on over (adults and kids) at 5 p.m. on Saturday, April 2nd.

Bring whatever you want to grill and either a side dish, dip, or dessert.

We will provide Blue Cocktails, beer, soda and kid drinks.

Kids will be strongly encouraged to play outside (bring bikes, scooters and helmets).

The Final Four game will be on inside.

Wear blue.

There will be a raffle for the kids to win a “blue basket” filled with goodies.

To enter, they must bring the attached with answers filled out.

For answers go to http://www.autismspeaks.org/

Meet our nephew Dawson, visit my sister’s blog http://www.cheairsgraves.com/

So my sister is lighting it up blue in honor of our little guy Dawson.  Her friends and neighbors are coming and they are lighting it up blue too. A blue light bulb, blue drink, blue shirt, who knows, maybe some blue hair. But my sister is doing it. She is bringing awareness to others about autism.

There is mom out there named Jess who writes the blog A Diary of a Mom. Let me tell you, she is one amazing writer and one tough cookie. About a week ago, she sent a letter to President Obama asking him to light the White House blue for Autism Awareness Day. She has posted her letter on the site Light the White House Blue for Autism asking people to leave a comment about the letter to encourage the President to Light It Up Blue. I would like to ask you to do just that. Go to  the link above, read the letter, and post a comment.

She is also asking Oprah to light her stage  blue and is asking to appear on Oprah’s show so that she might share her story and spread awareness. So while you are out there clicking around the internet, if you can, also drop Oprah a line to Light it Up Blue too.

My sister is doing it.  A simple email. An invitation. Opening her hand. Others taking hold.

Mr. President, Oprah…..can you do it too?