You’re, that, this is…retarded.

What do you REALLY mean? I had a hallway encounter and shared it on my personal FB page, yet its well worth and deserving of a blog. So here it is: "The things people say and step in so you don’t have to: 3 characters doctor, nurse, me D: that's retarded (speaking of a process or something) M: don’t say retarded, there’s a different word you can use D: okay, intellectually disabled M: um, ok but that’s not any better for what you're trying to explain N: she has a son with disabilities and that’s offensive D: I didn’t mean it like that...I usually offend someone some kind of way M: I’m not offended. Just trying to help you out for future encounters...

Retarded isn't (well it wasn't supposed to be) a bad word YET the way people use it is what makes it bad, negative and derogatory. I have a child that is retarded = slow, behind his peers- intellectually and physically impaired and I'm okay with that because I don't define him by the disabilities and what he can't do. Words matter and we define success for ourselves!"

My wonderful and beautiful friend Helen reposted and added to it in an effort to help educate others. Here’s what she added: #1 if you use the "R" word, read on. And stop immediately #2 the fact that we need to teach doctors "compassion" in school in order to avoid saying these things is more than frustrating #3 This is a gleaming example of why I <3 Naomi Williams and all she is as a parent and advocate for her child and others with disabilities. #4 We're riding in August to prove that his "disabilities" don't limit the scope of the AWESOME Noah can achieve.

So what does one mean when they use the word retarded? If it’s not meant in a negative way how should one interpret it? Know this; we can choose our words, my child and others like him didn’t choose to be retarded.

It was a beautiful day and we went to Noah’s favorite spot which made EVERYTHING perfect in my world in that moment. *This is a previous video. I opted to leave my phone in the van and just enjoy Noah and the elements  but his reaction was the same as what you see here.*

[video width="224" height="400" mp4="http://exceptionalliving101.org/wp-content/uploads/2018/04/Noah-swing-2017.mp4"][/video]

If you’d like to be a part and help Noah and Helen on their Great Colorado Bike Adventure spreading awareness of what inclusion looks like while raising funds for others via the Kyle Pease Foundation go here https://kyle-pease-foundation-inc.networkforgood.com/projects/50559-helen-gardner-s-fundraiser . Your donation is 100% tax deductible and very much appreciated!

Want to Know Wednesday: What's Wrong with Him?


Want to Know Wednesday: Hoping this will be the start of a weekly win-win! I get asked questions about Noah and his condition as well as many other things under the sun all the time. I don’t always know how to answer the question(s), or even feel like answering them if I’m being completely honest, BUT I’ve realized the more that people understand Noah they won’t fear him ultimately being kind to and befriending him. I need your help to make this, Want to Know Wednesday, successful. What burning or random question(s) have you had concerning Noah or his condition(s) (seizures, vision, g-tube, cognition, building support system, etc.)? If you don’t feel comfortable asking in an open forum, feel free to email or message me. I’ll start it off with a question that I get almost daily, “What happened to him?” or “What’s wrong with him?”

Couponing through the grocery store

Those who know me know my initial response is something like this, “Nothing. Nothing is wrong with him. His wheelchair acts as his legs since they don’t work well right now.” The medical side of it is Noah was deprived of oxygen before birth and sustained additional brain damage after birth due to a severe brain bleed both playing part to an end result of CP (cerebral palsy). Cerebral palsy is one of the most common childhood disorders existing at birth (congenital) and affects movement, muscle tone and/or posture. There are different types of CP and various levels (degrees) of impact on the body. Noah is considered to have spastic quadriplegia, meaning he has a lot of stiffness (tone) and difficulty moving - controlling movements of his arms and legs. If you’ve been around him for any amount of time you’ll notice an arm will tend to ‘flail’.  It is difficult for him to isolate muscles to make a movement, thus more muscles are activated than necessary to achieve his desired motion. It’s not impossible to isolate the muscles, just very very difficult. Therapy (physical and occupational) and medication are the primary ways we work to overcome (treat) the effects of CP. Introducing Noah to yoga has also done wonders by heightening his body awareness (proprioception) and untapped abilities.

I CRINGE when I hear reporters and others say “they SUFFER from cerebral palsy.” Yes, there are challenges that come along with this diagnosis. However, life isn’t over. The way daily living, educational and recreational activities are done may not be conventional, yet there’s a way they can be adapted and accomplished. My ultimate goal is to help Noah achieve his highest level of independence, whatever that looks like. I hope a byproduct of working towards that goal will be teaching others how to see and unlock the potential in him and others who are differently-abled.

Again, CP affects people differently resulting in different treatment options that include but aren’t limited to special equipment, therapy, medication and surgery. Cerebral palsy doesn’t get worse with time and there is no cure.  I’m a fan of the website Kidshealth.org as the content and explanations given on various conditions are very user friendly. For more information on cerebral palsy visit http://kidshealth.org/en/parents/cerebral-palsy.html

* Post content and discussions should not be taken as giving medical advice. I’m a health educator, not a medical professional. Information given for educational purposes only and is specific to my personal experiences. Consult your physician if you have specific medical related questions.