Special Needs Archives - Page 10 of 22

Taking Back The Word Retarded

Jul 23 2014

As the parent of a child with developmental challenges, delays, cognitive disabilities… however you want to label it, I often flip-flop between two perspectives. 1. Wanting to let my fists fly (which is pretty hysterical if you’ve ever seen me try to punch something) on anyone who uses the word retarded. 2. Simply allowing the word to bounce off me and ricochet back at them. People who use the word retard are outing themselves as people I’d rather not know. Their word choice says everything about them and nothing about my child or anyone with special needs. I seem to be juxtaposed between violence and a “so be it” attitude so instead of choosing a perspective, I’m creating a new one. I’m going to take back the R-Word. Others have done it—taken a word used to discriminate and have claimed it as their own. By doing so they’ve taken the wind out of many biggoty sails. My daughter is retarded… Okay wait, I need to ease my way into this because just typing that made me squirm. Those seven letters pack a punch. Retard means delayed or slow. By definition, my daughter is slow. She’s slow to anger. She’s[…]

Jul 10 2014

We kept our daughter up for most of the night to deprive her of sleep, on purpose. Consider it payback for all the nights she’s kept us awake. In your face, Avery! Mwah hahaha… Kidding. She was scheduled for an EEG the next morning. Having her good and exhausted prevents her from having to be sedated (she fell asleep naturally on the exam table within seconds) and it ensures her brain will be disorganized and stressed—perfect conditions for performing an exam to look for the abnormal brain waves associated with seizure activity. The same test last year revealed ‘moderate abnormalities.’ This meant Avery would remain on medication—the seizures were still there, suppressed by the meds, but skulking in the shadows. This year we were hopeful that even if the result wasn’t completely normal, there would at least be some improvement, indicating that Avery is slowly but surely growing out of this condition. No such luck. The results were the same. ‘Moderately abnormal.’ We’ll try again in a year. There’s time, things could still change. And in the meantime we’re fortunate to have found the perfect balance of medications, with no side effects, to suppress the seizures. When[…]

Jul 02 2014

At some stage in life the meaning of the term “like a girl” twists from something incredible into something insulting. When I was asked to spread the word about the #LikeAGirl movement, intended to remove the negative connotation associated with the phrase, I enlisted my son’s help. I planned to share a clip of his feminine impression how a girl might run. However, it seems he’s on the cusp of the aforementioned twist. At eleven he still views males and females through equality coloured glasses. When I asked him to demonstrate a “girl run”, he ran hard and strong. It wasn’t the stereotypical reaction I had banked on. I considered grounding him for ruining his mother’s blog post. 😉 So how do our sweet kids suddenly sour? What dark force clouds their minds thus creating this negative point of view? Oh wait a minute… “You throw like a girl!” “Shoot me if I ever start running like my mother. She runs like a girl.” “He screamed like a girl for the entire ride. It was like riding a roller coaster with Ned Flanders.” All of these gems above? Me. All me. (I made the Ned Flanders crack just last week[…]

Jun 29 2014

We were told that it wasn’t likely our daughter would ever walk on her own without some kind of assistance. Doctors made this assumption based on what is known about her faulty DNA. Considering the significant chunk of genetic material missing from Chromosome 3 (3P Deletion Syndrome), this was a fair assumption. But you know what they say when we assume… “it makes an ASS out of U and ME.” So we try to never assume—and more importantly, to never say never. This spring Avery attended the 27th annual Special Athletes Track & Field Meet in our school district. There were 280 athletes in attendance, plus teachers, support workers and teary eyed parents. Each athlete was allowed to bring along one ambassador to help them. Avery chose her eleven year old brother. Sebastian wanted to be there, but he was scheduled to represent his school at his own track meet. In the end, and on his own, he decided to accompany his sister. He said he wanted to cheer her on. And boy did he ever. We are so grateful to the mother who started this special event 27 years ago and to all of the volunteers who make[…]

Jun 02 2014

To say we’re “celebrating” Rare Chromosome Disorder Awareness Week is a bit of a misnomer. However, we are marking it and we are grateful that the first ever RCDAW starts today. Thankfully we found a support in an organization called Chromosome Disorder Outreach early on. Through their research, education, and efforts to connect families who face similar struggles, we feel much less alone in this unique journey. Individually, chromosome changes like the ones that affect our daughter are still considered rare. But we are now learning that these disorders actually may not be as rare as once believed…

Category - Special Needs

Taking Back The Word Retarded

I Like My EEGS Sunnyside Up

What Do You Think Of When You Hear “Like A Girl?”

Never Say Never—A Story About Very Special Athletes

Rare Chromosome Disorder Awareness Week