Posts Tagged ‘special needs sibling’
The Gift of Sight
When I used to think about autism, back when the word meant nothing to us, and eventually when our son was first diagnosed, I used to think about the differences. Autism meant he would be different. And that made me so scared for him. Because I knew the world could be unkind. I would hyper focus at 3 am or while in the shower on all the ‘nevers.’ The differences. The worries that would drop me to my knees. He may never talk. He may never ride a bike. He…
Read MoreA Letter to My Son, A Special Needs Sibling
A thank you letter to my Son… Being an older brother to a sibling with severe autism has not always been easy. It’s a job you never asked for but you took with stride. At times it was a very difficult and that is putting mildly. Thank you for loving your little sister wholeheartedly. You were her light in the darkest of times when her life was filled with sensory overload, when nothing made sense to her little body and she was completely overwhelmed by our world. When she would…
Read MoreAwareness Days Shouldn’t be the Only Days We Talk About Disabilities
Today is World Down Syndrome Day. I am going to make a statement that I know is controversial. People may come at me in the comments. But anyone that knows me knows I am honest, sometimes to a fault. I hate disability awareness days. Wait. Before you take your shock and disgust to the comments, let me explain. I have built my career, my character, who I am and what I stand for, on advocating for those with disabilities. All individuals with disabilities. Not every disability has an awareness day.…
Read MoreKindness is the Most Important Thing to Me
See that boy on the left? The one in blue… He is 8 years old. He is in 2nd grade. At least once a week he tells me he can’t wait to be a grown up so he can ride dirt bikes and do whatever he wants. But he also reminds me he is never moving out. He plans to live in the backyard. We had his school conference last night. His teacher told us all about his test scores for math. We talked all about developing skills versus proficient…
Read MoreWaiting For Sister
Our fourth baby is due in 93 days. Not that I’m counting or anything. Although pregnancy in your late 30’s during a pandemic and a Minnesota winter with three wild boys is no joke. I’m trying to enjoy it. And I am. But tick tock over here. Yesterday, as I was attempting to sneak a few minutes of alone time midday, my two older boys made their way into my room. They always find me. Sawyer pulled up a pillow and a blanket next to me and began watching a…
Read MoreAmanda Owen, Creator of Puzzle Pieces, is Changing Lives for People With Disabilities
To truly know what a special needs life is, you have to have a deep understanding of it. You have to see it in every way and every aspect. It has to be your life. As the younger sister of Nick Boarman, 36 year-old Amanda Owen has known special needs life her entire life. At Nick’s six month check-up the doctor told their mother, Sharon Boarman, that Nick had a rare chromosomal disability. The Syndrome was so rare that there were only ten other cases at that time and those…
Read MoreYou are an Amazing Special Needs Sibling
Dearest Daughter of mine, I don’t know how I would do this thing called life without you! Having a little brother with a disability isn’t an easy job. But you do it with such grace and empathy. Every day from the moment we wake up you start caring for your brother. Before I even make it downstairs you grab him a drink and make sure he has gone to the bathroom. You do these things without me even asking. You bring so much light and joy to our family. I…
Read MoreI Don’t Mind You Staring At My Brother’s Disability
Living 36 years of my life having a brother with a disability has made me embrace the things I can’t change. Being the sibling of a brother with a disability has taught me many life lessons, and one of those lessons I’m sharing today in this blog. There is one thing that all families who have a child/sibling with a disability have experienced more often than not…….People who stare. When they notice a difference in the people around them, they stare. When they observe or hear a different form of…
Read MoreWe Have Years Left
As I was tucking these two in the other night, Sawyer said to his brother and I…‘I’m going to sleep in my room tonight Cooper.’ Cooper popped up quickly and distinctly shook his head and said a very serious…’no.’ This is huge for a few reasons. For one, my now ten year old just recently learned how to shake his head no. Its a skill that takes motor planning and didn’t come naturally to my sweet boy. It’s also pretty cute. He also vocalized NO. That’s new. I sat there…
Read MoreShielding Them From the Dark
As the parents of a daughter with significant special needs, my husband and I have always tried to shield our two sons from some of the darker realities of Lizzy’s issues. Still, we remain as open as possible so they can feel close and connected with her and her care. If that sounds as if it might be impossible to accomplish, it is. Four years ago, I realized what a fool’s errand it was. Our oldest, Tom, was 17, and was mowing the lawn. Joe and Lizzy were also in…
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