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Inclusion: Live Your Best Life

What is inclusion? This is one of the first questions I always ask my Adapted Physical Activity class. The dictionary’s definition states the act of being included. In special education this term means opportunities for students with disabilities to learn alongside typically developing peers in the general education classroom.
Then again, for some, the term can bring on feelings of that constant parental guilt. Worry or guilt that they aren’t doing enough or doing the right thing. For example, that if they don’t work to have their child in the general education classroom that they aren’t doing the right thing. Even though they know their child and feel it would not be in their best interest for certain classes. No matter the IEP’s percentage of time in the general education classroom, inclusion goes well beyond the school walls. It is about individuals being viewed as a valued, accepted, and yes, included member of society.
I’m not one to use popular expressions and sayings. Probabl…
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Our Stories

Our Stories: Reflections of the 2018 DSDN Rockin' Mom Retreat
After last year’s DSDN Rockin’ Mom retreat I wrote about the power of our hands. (Linked here). This year I leave with the importance of stories. Our stories. Everyone who has heard Bethany Van Delft's story was very excited to hear from her. Even though I was two years removed from our diagnosis and therefore past the initial processing of our diagnosis and the accompanying emotions, it brought me to tears when I listened to her story.

Every time I share our story or hear a story that I connect with at such an intense level it brings a sense of release. Sometimes it's those stories of our tough times, times when we feel so alone, that people relate to the most. That when we bring ourselves to share, we realize how truly similar we are to what others have felt and we connect to those stories. Those stories can bond us. They can change us. They can empower us.

At the retreat Bethany spoke about the events surround…

The Fan

These are all fans. Some prettier than others or fancier than others. But they are all fans and all get the job done. When I think back on August 27th, 2015 what I remember is a fan, this fan. Just a simple plate and tongue depressor taped together. The creator even went one step further and wrote “fan” on it to make sure everyone knew what it was. Sometimes in life we get handed a life isn’t as pretty or fancy as we thought or dreamed. But then sometimes when we stop to take a good look at our life, it is still a life we love, a life we dreamed of.


We were at the lab to have my blood drawn for the MaterniT21 test to test for Down syndrome when I found this fan. TJ and I loved it and it diffused the situation. In fact we found ourselves taking a picture of it. I still remember TJ using it to fan the nurse who was having a hot flash while she drew my blood. This all happening while I worked hard to not think or even consider the possibility of what they were checking for. I wanted to th…

Discover

Discover. This was the word for the year I picked back in January. There were several different reasons behind this choice. For this to stay an appropriate blog post length instead of a novel, I will focus on one of the reasons behind this word choice. Kaleb. One of the many reasons I chose this word was to remind myself to enjoy Kaleb and enjoy watching him discover the world around him. Not to get so caught up in being his medical coordinator, therapist, teacher, nurse, and full time advocate. To remember to be his mother and to take the time to discover him and his personality.
While I think this is something many of my fellow parents of a children with an extra chromosome can relate to, I will only speak for myself. We all say, “Don’t compare,” and we sure as heck try not to, but it can be hard. I often found myself comparing Kaleb to milestone timelines, his fellow peers of various ages at daycare, and even those buddies of him rocking that extra chromosome. It would take the joy…

These Adventures We Call Life: A New Diagnosis

I’ve unpacked most of our luggage from vacation. Laundry and dishwasher are both running. I’m now sitting here in the recliner researching and reading, trying to expand my knowledge on Kaleb’s latest diagnosis. I am reading about cerebral palsy, or more specifically, spastic diplegia CP. The movie Avatar is playing in the background. Why do I mention the movie playing when I have much more on my mind today after Kaleb getting yet another diagnosis added to his seemingly ever growing file? It’s because the choice in movie.
After a few minutes I am reminded as my heart aches from processing this new piece of information that this movie ironically was on the tv on another hard day in my life. That realization, the recall of that memory, and life following suddenly makes it easier to process this new added section to Kaleb’s file. That day was the day after Kaleb’s diagnosis of Down syndrome. It was also our last night in the hospital. I was going to be discharged the following day. TJ an…

I Know You Are There

While K2 teaches me many life lessons that I never would have experienced without his premature birth and several medical diagnoses, it is K1 that really adds to those lessons. Kaden has such a way with words. My five year old who is really like a little old man, has a way of putting into words the way I feel. I see him so clearly articulate his musings and lessons about his life and his world. It strikes me that often, it is pretty spot on for my life. It goes to show that even though I’m a mom and a working professional, that I am in many ways a kid with so much to learn and stumbling along life trying to learn these lessons. (Sometimes it makes me think of the meme that says, "Sometimes I look around for an adult adulting harder than me").

It makes me think of something he said the other day. Kaden, like me, has a very active imagination. So like many children, darkness and night can scare him. He was still talking to me as I walked to the door of his room after I tucked h…

Superman, Captain America, and the Lion's Plan to Bring Back The Sun

My nephew Eli, my niece Lainey, and Kaden were playing in the living room floor on Saturday. Eli was pretending to be Superman and Kaden was Captain America. They were drawing up an elaborate plan to stop the rain and bring back the sun. Lainey, who had been playing a lion was told she couldn’t take the chalk to draw up the plan on the board because lions couldn’t draw. So she transformed so she could draw.
Kaden- “Who are you, Lainey?” Lainey- “I’m a human.” Kaden- “No, but who are you?”

We are often the same way. We are human. But we may wear many different hats, capes, or masks. I can pretend to be super mom and that I have everything under control and there are days I do feel that way. I try to be positive and constantly push through while also trying to push Kaleb to work on skill development but at the same time I am human. I have days where it’s not okay. It’s not okay that I don’t know how I’m going to juggle it all, while already worrying about the pros and cons of different cl…