Wednesday, June 26, 2013

Boys who can talk.

The absolute number one hardest thing we struggle with when it comes to Recker having ASD, is his inability to verbally communicate, he's non-verbal.   Plainly put, he can not talk.

When Recker was 11 months old he said his first word, "dada" followed shortly by "momom." I remember it vividly, the moment i first heard that word "momom." He and I were sitting on my bed, he was in jammies (seriously little guys in two piece jammies, there is nothing cuter). I was reading and he was looking through one of those drool proof baby photo books (you know the puffy ones?) and he said it. That feeling was incredible. Looking back i wish i would have reveled in it, would have made the moment last longer. Had i known i wouldn't be able to hear it much for longer, I'm sure i would have. Recker went on the next month or so learning new words: 'dada', 'momom', 'baba', 'no' and 'don't'.

The last word i remember him saying was "don't." He was yelling at Jeremy in my parents living room because we were leaving and he was picking up all of Recker's toys and putting them away.

"Don, Don, Don, Don, Don!" I remember standing on the other side of the couch laughing.

But he stopped. All of the words stopped. He changed.
Today, two and a half years later he still can not speak. 

But I've learned that does NOT mean he can not communicate with us.

I feel like i have had to go above and beyond to learn how to communicate with Recker. To anyone aside from Jeremy and some close immediate family, it may look like we have NO idea what Recker is "saying" or "telling" us. And some of the time that is true.

I have learned how to decipher different looks he gives me.
His body language.
The pitch and tone of his squeals.
Each different one tells me something.

I constantly am 5 steps ahead of him.
Have you seen how quick and sharp he is?

The thought that my son needs or wants something and can not TELL me. It KILLS me. I hate how hard it is for HIM.

The other day he came running and screaming into the room and had a big fat bloody lip. I was begging him to tell me what happened. He just looked at me with the saddest eyes, not because he was hurt and bleeding, it was different. He could not tell me what happened. He wanted to and couldn't. I started to cry with him. The fact that i will never know what happened to him, how he got hurt, is so hard for me.

Im haunted daily by the thought that  even though he is surrounded by enormous ammounts of love and attention, Recker probably feels so alone.
It is such a hard thought to grasp and handle.

I guess the reason i am writing about this is because it has been on my mind a lot more than usual lately. Something happened recently that i haven't been able to get off my mind. Up until a week ago i couldn't even talk about it. Luckily my sister is always there and completely understanding and more of a cry baby than me, so i know when i start sobbing i wont be alone.

So Jeremy and I were down in our community yard hanging out while Recker played with his cars. All the neighbor boys (ages 2-5) were out and at one point one of the boys parents called him inside for a minute. When he came back out, all the other boys had gone back to their homes. It was just Me holding Ezra, Jeremy, and Recker...

The boy asked "Where did everyone go?"
Jeremy replied "They all went home buddy."
He looked sad and disappointed. So i said, "Recker would LOVE to play with you!!"

Then came this...

"Well i just only want to play with boys who can talk."

Jeremy looked at me and whispered, "Did you hear that?"
Of course i heard it. I FELT IT. It pierced me to the core. I will hear that forever.

I sat there for a minute trying to collect myself so i didn't bring attention to what was just said. I didn't want to make the boy feel bad, but at the same time i was furious, sad, sick....mostly in shock.
But i had to go. I had to go anywhere. I couldn't be THERE any longer.
I walked home with tears quietly streaming down my face.

I curled up on my couch and just cried for what seemed like hours.

Recker and all his friends were always at an age where Recker's inability to speak wasn't very noticeable, or even acknowledged. He is older. They're all getting older, and it is obvious that something is different with their friend Recker.

Obviously the boy wasn't trying to be mean to be rude or mean, he was just being honest.
This was just the first time (of many to come, I'm sure) that we've had to deal with this. I am working on putting together a packet of some sort to give to parents and teachers to help their young children understand Recker and explain why he does some of the things he does and why he can not talk, to explain why Recker is "DIFFERENT, NOT LESS". Hopefully this will help raise awareness with children, and they can start learning acceptance and tolerance at a young age...Stay tuned for that information. Hopefully i can get it all together within the next month or so!

Tuesday, June 11, 2013

Be Kind: Part One -- Autistic vs. Having Autism

[Originally posted on 6/11/13]

My whole life I have been such a peace maker and very passive. Ive always hated confrontation and would just make myself suck it up whenever someone or something bothered me. I just took it. I want my children to stand up for themselves and for what is right. I need to lead by example. I decided if i dont like something, i need to try to change it.

Most of you (non ASD families) are not aware that many of the terms you use are very offensive, and ive never said anything for fear of embarrassing someone or upsetting them. It is not doing anyone any good not informing them of their mistake, its only because you do not know, that you make the mistake to begin with. So here it goes...

Be Polite: Part One -- Autistic vs. Having Autism

Using the term "Autistic" over the term "Has Autism" is very controversial in the ASD "community." I have tried hard to just realize that people who don't deal with ASD in their homes do not understand that they are being offenseive. But i cringe and automatically get defensive when you say that my son is "Autistic" or use the word "Autistic" in general. I dont feel like i should have to cringe anymore. 

So as i mentioned the term is very controversial in the ASD community. The people who use the word "Autistic" to describe themselves and/or their children, are the same ones who find it a blessing to "be Autistic." They get very upset when they hear mothers like me, who are sad, angry or upset about their child having Autism. But to THOSE people who find it a "blessing," they obviously do not live the same life i do. They are obviously able to function and communicate in a world where my son can not. To be "Autistic" is a blessing to them. In our home it is not. In our home it is a cause for heartache and a very difficult life for not only Jeremy and I but mostly our sweet Recker. Our sweet Recker is the one who has to endure this trial in his life. Yes, TRIAL. How can you consider not being able to communicate, having an extremely hard time being out in public places because of his ASD & SPD, the looks he gets for his stimming in public, how are those things BLESSINGS? This does not mean we would want to change him or love Recker more any other way, it simply means that Autism has made our lives extremely difficult, and challenging for Recker. He has to deal with things that no 3 year old boy should have to deal with.

We do not use the word Autistic to describe Recker. Autism is not WHO Recker is. He is so much more than that. 

First and foremost....

He is a 3 year old boy.
He is a brother, son, nephew, cousin and grandson.
He is a little blondie.
He is a comedian.
He is a cuddler, kisser and sweetheart.
He is a lover of water.
He is brave.
He is strong and fast.
He is a friend to everyone.
He is Recker.
Those are the things we use to describe him. 

He is not Autistic, he "has Autism." 

It may seem odd to you and that there is not really a difference. But just a few little words can make a HUGE difference. The way we arrange words can change the whole meaning of something and the way we look at and feel towards it. By using the terminology "has autism" it puts the person first before the disability or condition, and emphasizes the worth of the individual as a person not just a condition. 

For example cancer patients are referred to as "people with cancer" or  "people who have cancer" as opposed to "cancerous people." Do you see how HUGE a difference just rearranging your words can make? PUT THE PERSON BEFORE THE DISABILITY. 

Person-first language is a philosophy of putting individuals before their disability. As you will see, this is about more than just language; it goes deeper into our attitudes toward others and how those attitudes translate into action. The label or identification that one’s condition or disability receives from a doctor is just that: a label. It is a way of broadly characterizing a group of symptoms under a recognizable and universal description so that treatment and services can be provided. It doesn’t speak to a person’s value or abilities. However, historically those with disabilities have been characterized as broken or frail, which makes it easy to see the impact language has on how accepted individuals are in their communities. Society at large has used these labels as a way of marginalizing others’ potential and fitting them into a neat little box from which they will never break free (Snow, 2010).

Please be considerate next time you are speaking to or about someone with Autism. Remember that, their disability isnt who they are. They are someone of value and worth far beyond their disability or disease. 

Recker HAS Autism. He is not Autistic.

Snow, K. (2010) To ensure inclusion, freedom, and respect for all, it’s time to embrace people first language. Retrieved on March 3, 2011 from