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

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 www.disabilityisnatural.com.

Two Years and Counting...

Its been two years.
Two very very long and extremely difficult years.

That day is still so fresh in my mind, in my heart. 

I still get that lump in my throat when i think about it.

I still get that lump in my throat when i hear "Keep Breathing" by Ingrid Michaelson. 

It was on repeat when i got into my car. 

When i sat in my car, in that dreary parking garage, sobbing. 

This song played and played and played. 

That day changed my life forever. That day changed our little family's life forever.

I had no idea what was ahead. I had no idea how hard these next couple of years would be. I had no idea how i would have to somehow and somewhere find the strength to be an even better mother and wife than i had been before. I didn't know that i would permanently be stuck on this emotional roller coaster that is being a parent of a child with Autism. I didn't know that i would cry myself to sleep every night for months, then be super strong and fine for a few more months, then back to the tears. 

How could i have known?

How could i have known how hard this would be for my son?

Oh how hard it is for Recker. 

My sweet precious boy. 

How hard the past years have been for HIM.

How hard and sad it must be to not be able to communicate with the ones you love. 

To not be able to tell your mom and dad that you are tired, hungry, that your belly hurts....

How hard it must be for him.

Since that day two years ago, i constantly feel like I'm suffocating, like i cant breathe.

I feel this intense sense of URGENCY. That every second I'm not trying to find a way to help my son speak, to help him play with his friends, i feel like I'm losing him. I feel like every second that goes by, i lose a little part of him, that I'm a failure. I know its not rational. I never said i was a rational person. All i know is that i have had a lump in my throat and felt like i cant breath, for TWO YEARS. 

This has changed me. 

In different ways. Good and Bad.

I have never been a jealous person. I am now. 

I have never felt hardened and bitter. I do now. 

I have never felt helpless. I do now.

I have never been able to speak up for myself. I do now. 

I have never really truly relied entirely on faith. I do now. 

I have never been strong. I am now.

Honestly...These past two years have been an emotional hell.

I cant count the number of times people have praised me and applauded me for how i have handled "everything."

I feel like such a fraud.

I am a fraud.

Of course i am strong and collected when you see me.

No one really wants to know how you're "REALLY" doing. They would regret it immediately.

No one wants to hear how hard it REALLY is. 

How hard on your marriage it is.

How it makes your faith waver.
They don't want to hear about the endless sleepless nights stressing and worrying about his future.
They don't want to know that most of the time i am fighting back tears. 

No one wants to hear about all the thousands of doctors appointments, therapy sessions, and IEP's.

They don't want to hear about me and my husband holding and clinging to each other while sobbing because we don't know how to help our son.

They want to hear how strong you are.

They want to see you standing on your feet ready to "FIGHT THIS"

They want to see you out and about "keeping it together."

That isn't reality.

At least that isn't my reality.

This is the hardest thing I've ever done. 

Autism is hard.

Sometimes it feels IMPOSSIBLE.

The only way I've been able to get through it is Recker.

That quirky personality.

Those moments where he drops what he's doing and runs over to me, bear hugs me and kisses me.

His eyes. They're so deep. You can see and feel his heart through his eyes.

His need to cuddle and nuzzle us constantly. 

When he grabs your hand to hold it.

Those moments when he learns something new and gets that look in his eyes, like it clicked.

That contagious laugh.

His intense curiosity, that usually gets him into more trouble than good.

His love to help in the kitchen. 

How hard he tries to play with his friends. He's learning, and trying so hard.

Just his love. His pure love for everyone.

He is perfect in my eyes. 

I love him more than i thought i could love another person.

Heres to another two years. Lets pray they are easier than the previous two.

{I write this completely vulnerable and exposed...please be understanding}

Sleep Study at PCH

We finally got around to getting the sleep study for recker done and over with. Ive kind of been putting it off for the past year because i honestly didn't think recker would be able to handle it because of his sensory issues and i just couldn't handle any more disappointment. But we did it and it was a success! I kept him up all day and we went in around 7pm and stayed until around 4am. Recker didn't last the whole time, we ended up leaving 4 hours early, but they said they thought they had enough data to review and diagnose and said we could leave. It was so stressful and overwhelming but I've come to learn that i am a lot stronger than i give myself credit, mostly because i HAVE to be. If it were up to me i would lay in bed and feel sorry for myself some days, but when you have little ones who depend on you you can't do that, and what a blessing Recker is and how busy he keeps me, it helps me keep my mind off of the bad and negative thoughts that slip in every once and awhile. Anyways we hope to get the results from the tests/EEG within the month! 

(last meal before going to the hospital. poor kid had no clue what was coming!)

  

 

I don't even know how many cords were hooked up to his head, i didn't get a chance to get a picture with all of them on there, but there were over 50 (all of them you see in the two pictures above hanging on the racks and walls). They stuck them to his head with this vaseline like glue which was such a pain to get out of his hair later! Then i had to help him fall asleep, we turned the lights off and they monitored him from another room with that camera in one of the pictures above (round black camera hooked to the computer). He laid in the hospital like bed and i "slept" in a bed next to him (the one he is sitting in watching the iPad). They monitored his breathing, how much oxygen he was or wasn't getting, his leg and arm movements, brain activity and a ton of other things. They are wanting to rule out sleep apnea which his doctors think he has, as well as a slew of other sleep disorders. Hopefully we are able to rule everything out! Anyways we were so blessed to have such amazing staff working with us that night, it definitely wouldn't have gone as smoothly as it did without them! THANK YOU PCH!!

Az Walk Now for Autism Speaks 2012

Event Information

About Our Organization

Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention and treatments for autism, and to advocating for the needs of individuals with autism and their families. It was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners and served as vice chairman, General Electric, and chief executive officer of NBC for more than twenty years. To learn more about Autism Speaks, please visit www.autismspeaks.org.

The Southwest Autism Research & Resource Center (SARRC), founded in 1997, is a nonprofit, community-based organization dedicated to autism research, education and resources for individuals with autism and their families. SARRC undertakes self-directed and collaborative research projects, serves as a satellite site for national and international projects, and provides up-to-date information, training and assistance to families and professionals about autism and related disorders. For more information about SARRC, please call (602) 340-8717 or visitwww.autismcenter.org.

Walk Now for Autism Speaks

Autism Speaks is proud of our signature fundraising event which brings together hundreds of thousands of participants annually across the United States and Canada with a common goal of supporting Autism Speaks and the local autism community. In Arizona, we have been collaborating with SARRC for 7 years to raise funds and awareness to support children and families affected by autism. It is the belief that together we are smarter, and by combining the resources, skills and talents of the two organizations, we make the largest impact in Arizona and beyond.

Powered by volunteers and families with loved ones on the autism spectrum, this successful grassroots fundraising effort not only generates vital funds for autism research but also raises awareness about the increasing prevalence of autism and the need for increased research funding to combat this complex disorder.

To see a current list of walk sites please visit www.walknowforautismspeaks.org

Location:

Tempe Beach Park

80 W Rio Salado Parkway

Tempe, AZ 85281

Date & Time:

Sunday October 28, 2012

Registration- 8:00Am

Welcome, Warm-Up, Walk - 9:00Am

**There is a 5k route as well as a 1 mile family fun route**

FAQ:

Registration

Should I register my kids?
Yes, please register everyone who will be attending (even toddlers in strollers).  This helps us plan for the day of the event.

Is there a fee to participate?
No.  There are no registration fees, but we encourage each person to reach out to their friends and family for support.

What is the cut-off to register or join a team?
You can register online up to the day of the event.  Please have everyone register as early as possible to give us a good headcount so that we can plan for a better event.  Registration is also available on site the day of the event.  

Some of my family would like to come, but not walk.  Do they need to register?
Please make sure to register each person that will attend (even if they do not walk).  It helps us know how many people to plan for

If I am registered, do I need to do anything else to be pre-registered?
No, if you are already registered online, you are all set.

Is it better to register online or register the morning of the walk?
There are many advantages to registering before the walk.  Here are just a couple.

1. Knowing how many people to expect will help us plan for a better event for everyone.  We order all items based on how many people we have pre-registered for the walk.

2. Each person that registers will receive a webpage within the Walk Now for Autism Speaks website.   This will give friends and family a place to go where they can donate directly to you online or get a donation form and mail a donation directly to us that will be credited to your page.   You can also customize this page with a photo and special message.

Resource Fair

What is the Resource Fair?
Our Resource Fair is made up of booths for local service providers who are there to talk to you and your family about products and services offered.

I know a local service that would be a great fit for the Resource Fair, how do I get them involved?
We are always looking for new information for our participants. Please talk to them about the event and ask them to visit the walk website to learn more about the Walk Now for Autism Speaks program.  They can click on Get Involved and then Join the Resource Fair to learn more about becoming a vendor.

The Day of the Walk

Are pets allowed at the walk?
Sorry but, pets are not allowed.  Many affected children have a fear of animals and even the sweetest pet could negatively affect another participant.   Please be sensitive to this issue and leave your pets at home.  Only service dogs are permitted at the walk.

Are strollers and wheelchairs allowed at the walk?
Yes.  Strollers, wheelchairs and even wagons for the little ones are all welcome.

Are bikes, rollerblades, scooters or skateboards allowed at the walk?
 For everyone's safety, we can not allow any of these items.

I may not make it to the walk when Check-In/Registration opens.  Can I arrive late?
 Yes.  Check-in will be open until the walk ends.  Please go directly to the check-in area when you arrive.

How much do I need to raise to receive a t-shirt on Walk day?
 Volunteers will distribute t-shirts to those walk participants who have turned in a minimum of $150 through walk day (both pre-event and day of event donations will be counted).

What happens if it rains on the day of the walk?
 All walks will be held on the date scheduled "rain or shine".

What do I need to bring with me on the day of the walk?
 If you have any donations, bring them along with a donation form for each.  You can save time on walk day by sending in your donations ahead of time.  You will also receive a logistics emails a couple of days before the walk with specific activities so make sure you are registered!

How do I find my supporter ID number?
 There are a few ways to find supporter ID numbers for yourself or for your registered family members.  If the suggestions below do not help, please contact us at walks@autismspeaks.org.
     1. When you register, you will receive an email to confirm your registration.  Your supporter ID number will be listed in this message.
     2.  From your webpage - click to open the Offline Donation.  The link is listed just under goals.   The ID number is listed in the top corner under the participant's name.
     3. On your personal webpage - your ID number is at the end of the URL.

Matching Gifts

I think my company matches.  How do I get this started?Every company handles its own matching gift program differently.  Please contact your company's Human Resources department for instructions on how to double your fundraising efforts through matching gifts.

I don't know if my company does matching gifts.  How do I find out?Please contact the Human Resources department at your company and inquire if they have a matching gift program or visit www.matchinggifts.com/autism.

Where do I send my matching gift form?You can send your matching gift form to:
   Autism Speaks
   Walk Donations Department:  Matching Gifts
   5455 Wilshire Blvd, #2250
   Los Angeles, CA  90036
 
I submitted a form for matching gifts but do not see the donation on my page.  Where is it?Autism Speaks cannot post a matching gift until the corporation involved approves it.  Unfortunately, corporations match gifts on a different timetable during the year.  If you have questions regarding your matching gift, please contact your company to see if the donation has indeed been matched.  If it has, please contact Autism Speaks by e-mail at walks@autismspeaks.org, and we will do everything we can to ensure that the donation appears on your page.

Team Recker at Last Year's Walk 2011