Autism Speaks does not SPEAK for HIM OR HER OR ME

I have remained silent on the Call To Action published by Mrs. Suzanne Wright …. until now!

Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.

We are talking about the parents here. Let’s look at this realistically. It is true that many of us don’t sleep much. I know in this house sleep is a constant battle. Yes I worry every night that my children will wonder off from the security of their home, and because of that I make sure there are alarms on all doors and windows in the house. Isn’t that what a parent does? We keep our children safe no matter what it takes. That is not specific to autism, that is specific to being a parent of a child. Honestly my children stripping their clothes off are the least of my worries in the middle of this night. We are not just existing, we are living. OUR AUTISM has shown us a new way to look at the world. Our Autism is not the end all of our children’s life, it is a different path we take to ensure they succeed in the ways that they can.

I won’t sugar coat autism either. There are days I scream from the mountain tops that I FLIPPIN HATE what autism has taken from my child. Those days, days like today and the majority of this week SUCK, but that isn’t every day.

Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.

This is autism.

I live my life in the moment, not “moment-to-moment.” Actually we have schedule and a routine that we follow. It is pretty much the same thing every day, but never the same day. If one of my children need to adjust something in our schedule or change where we are going we do it. I do ask a lot of my children as they learn to cope with the NT world around them, but I also allow them to have a “get out of jail free” pass when it is too much. Does this mean my life is lived in despair? Not a chance in hell. Do I have days where I am sad, where I cry, and scream this is not fair? Most definitely. Do I fear the future? Sometimes. I worry that my child will not be able to take care of himself and wonder who will do it. Will his older sister take care of him, who will take care of my youngest if she can’t do it herself. That is part of autism or any developmental delay actually.

AUTISM SPEAKS DOES NOT SPEAK FOR OUR AUTISM! OUR AUTISM SPEAKS FOR ITSELF! 

I speak for my children, I speak for my students with their parents, and I will not allow anyone to say my child is missing. I will not stand quietly while Autism Speaks instills fear of my child into those around him.

Will you allow Autism Speaks to speak for you and your autism?

I have taken quotes from the original post at Autism Speaks. To read the full post please visit: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

Words from me to you

Dear Son,

I have watched you grow from before you were born. I have been with you through each step of your journey. Somedays I have cried tears of anger and sadness and others I have cried tears of joy and pride. Today though I did not cry as I watched you decided to pull a wall around you and your world.

Sunday morning you woke up and decided you were not going to speak. You see, for me this hurt. I wanted to scream at you to speak. I wanted to shake the words out of you. Those words are there, yet you choose not to use them. We have spent hours upon hours working to get to your words and here you are five years later locking them up inside you.

I know you don’t understand why I am frustrated right now, but I am. I hate watching you pull yourself into this world where only you know what is going on. You lose all eye contact when you do this and it scares mommy. I feel like I am losing the little boy I know when you go to this place.

I think it would be pretty cool if you could take me to this place with you. I know it’s got to be pretty amazing since you have been going there more and more these days.

Son, I know you don’t understand but Mommy misses you so very much these days. I am learning to accept that this world of yours is a safe place and that you will go there when you need to. I am learning to accept that you are not gone, rather just handling your thoughts in a way that you know how. Mommy does that too, I just don’t have any one to say “I wish you weren’t there” to me.

I can’t promise you I will always be the one who is okay with you going to your world, but I will always be the one who loves you no matter where you go or what words you decided to use and when.

So you think she wants …

Little girl turns 3 in just one short month. I’m not sure where the time has gone, but it has gone. While I will readily say she is a smart and talented little girl, I will also say I wish I could buy her a new type of gift. Selfishly I wish that like many other three year olds I could grace her with a new Big Wheels with her favorite character Minnie Mouse. I selfishly wish she had the motor skills to peddle the trike down the sidewalk like many of her peers. I selfishly wish she would not point to the same baby doll/bottle/stroller that she already has 5 of because I want her to have something new and exciting.

Following my selfish wants for her birthday I have selfish wants for her christmas as well. I want to buy her a gift that she will be so excited to open that she rips the wrapping paper off in excitement to get to her new 3 cheers Minnie Mouse. I want her to have this because she loves minnie and it isn’t  baby doll or barbie. The reality is, even if I buy this for her she may be excited for Minnie, but she will be terrified once it starts to cheer and dance and move. Honestly she may be more focused on ripping the wrapping paper into small pieces because that’s how she rolls.

Despite my selfish wants for her birthday and christmas, I will go out and get her yet one more baby doll and some more barbie dolls because that is what she loves. I will wrap her gifts in Minnie Mouse  wrapping  paper and enjoy whatever the holiday and celebration may bring.

In our world birthdays and Christmas tend to be just another day. Another day that brings too much stimulation and too many new faces in a world that thrives on sameness and their form of controlled chaos.

What is autism?

Recently a blogger I follow decided to describe the symptoms of autism and how they are used in the new addition of the DSM- 5 to diagnose ASD. Here is what I will say about the blogger, she is a well educated individual. She has her PhD in sped with a concentration in Autism. She is a mommy of NT children. What she did was give the textbook definition of autism.

The one thing that stood out to me in her post was that children with autism do not have/show empathy. While children/adults/individuals with autism display emotions differently than the neurotypicals of the world, they still show it. When my son noticed me laying on the couch the other night while watching TV, he brought me a blanket and covered me up. This little boy who spends his days looking at the world another way showed he noticed me and cared. When lil girl (a point or two shy of being diagnosed) saw her big sister cry at the dentist, she held her hand and patted her leg. She saw a need in another person and offered comfort in the exact way I do.

My 3 year old daughter may not have told me “I love you mommy” yet, but she shows it. After I braided her hair tonight, she gave me a hug. When I am away from the house she waits up for me before she will settle down to rest and sleep. Part of it may be her need for routine and having me home before she will sleep, but when I walk through the door at the end of a long day and night, she yells MOMMY and I know I am loved. When my son is angry or wound tight he seeks me out for deep pressure and cuddles. Even though I may not get “happy birthday mommy” or “happy Mother’s day” I know I am loved and cared for by my son.

The common statement that individuals with autism lack empathy is a myth. People need to realize that it is shown in a different way and they need to learn and/or be taught how to see it. Our children and adults deserve to be better understood. People should know that they are more than a list of character traits listed in a set of diagnostic criteria.

Reflection from a film

When I was younger my favorite movie was Mr. Holland’s Opus. I loved it for two reasons, one I was a ultimate band geek and two it showed the Deaf community and the struggles a family went through when their child was born with a difference that the world would call a disability. 

You see at that time in my life I was extremely young and unaware. I thought I wanted a child that was deaf. I know this sounds horrible, but it is what it is. I was very involved in the Deaf community. Many of my friends were deaf, my best friend’s Mom was deaf and in my mind (like a said a very young mentality) that is what I wanted. 

This thought came rushing back to me two years ago while I sat in the doctor’s office when my son with diagnosed as having autism.

Last night when I could not sleep I decided to watch Miracle Run on Lifetime. 

With a new mindset and a different mentality I cried in watching this movie. I cried as the mom in the film received the diagnosis and had a break down. I empathized with her as she sat there saying all of her hopes and expectations for her twins had been ripped away from her. I knew how she felt when people she loved in her life walked away because of autism. 

What I loved most about this movie is that this mom fought! She fought hard for her two boys to grow in their own ways and at their own pace. She never gave up. She learned the laws and the legalities that ensured her boys had education. She even started her own foundation for autism. 

The movie was based on one family’s real life experiences with autism, from diagnosis to the boys being in Gen Ed high school and applying for college. 

When I was in high school and had a very young mentality I had no clue what I was in for. As an adult I still don’t know what all life will bring for my lil man or lil girl who has her own set of challenges, but I do know that I will never stop fighting for their rights. I will never allow my hopes and expectations be lowered by their labels. 

In today’s world we must still fight for our children to receive equal and appropriate education, but it is a fight we must never give up on or we are giving up on our kids. 

Day 4

I am thankful for my dad. 

When I was younger he would take me with him to “build” parts of the haunted hayride every September at the metro park. We built a boat together (He did all the work, I just handed him things). My dad instilled a love for music in me, an appreciation for the outdoors and bought be my first fishing pole. In 1993 we moved from Ohio to Florida. That June, my mom and I were out shopping for gifts for my sister’s 5th birthday. While we were out he had a massive heart attack.  I don’t remember much except my sister and I stayed with a neighbor while my mom rushed to the ER. This was before cell phones were popular and everyone had one, we didn’t find out until we got home and a neighbor stopped my mom. 

In 2007 my dad had another major heart attack which lead to a bypass surgery and a pacemaker. 

With each surgery we stood by his side waiting for the doctors to come out and say everything went well. 

Today my dad is healthy and lives with the restrictions that his heart condition requires. 

 

I am thankful that I still have my dad in my life and that he has always been one of my biggest cheerleaders.

Thankful for Her

Image

Lil Advocate, Age 2

In September of 2006 I was blessed with my first child. While all children are gifts, this child was something special. My pregnancy with her was rough. I spent most of it on bed rest after going into labor at only 15 weeks into the pregnancy. My cervix had already started to dilate and due to a partial placenta previa my OB could not surgically close my cervix. This meant I had to spend all of my second trimester and part of the third on bed rest.

I do not know how to stop moving or sit still. In order to ensure I stayed on bed rest my husband and mom decided it would be best if I stayed at her house where my younger sister was home during the day finishing her senior year of high school via virtual education.

By the third trimester I was released from bed rest but told to take it easy. My husband and I FINALLY were able to move into our first apartment. I spent the last 10 weeks of my pregnancy getting ready for this little girls arrival. Finally the day came, and I got to meet this beautiful baby girl. The best thing about it was she was MINE! and boy was I scared about that. 

Lil advocate has been a blessing to this family since the day she was placed in my arms. While she may never understand how much she had taught me about life, she will always feel the love I have for her. I am thankful for this amazing child that calls me mom everyday. Image She has a personality that will light up the room. Our family would not be complete without her. 

I am thankful that with all the challenges our family faces and the amount of attention that her siblings require she still comes out on top of it all. Her determination to succeed in life is one that is awe inspiring. I am thankful that I can be a positive role model for her to learn from. 

I am thankful that my daughter welcomes me into her heart with love and understanding. I am not always happy or perfect, but she knows that at the end of the night I will give her that huge hug and kiss before she goes off to sleep. 

I am so thankful that my daughter knows how great she is and how much she means to me. Image