Blue Glasses-Our Special Needs Lifestyle

Hi, I’m Vicki, a San Diego based blogger, business owner & advocate with my most important role being a mom to 2 wonderful boys, one with special needs. Follow along as I share my adventures of life with our unique family and my passion for spreading awareness, inclusion & compassion to our community and beyond😊

We live in Carlsbad, a small coastal town about 30 miles north of San Diego. We hit the beach a few times a week, the boys are busy in 9th and 5th grades, they swim, play baseball, do robotics, bike and run our dog around the neighborhood on a regular basis.

Luke is my 15 year old, a freshman at Carlsbad High School and he is my child with special needs. He’s a chatty little guy with a huge personality, more about him later.

Everett is 11 and knows everything about everything, just ask him😊 He’s a great kid who is a good younger, although its actually more like older, brother.



Here we all are, including Glenn and my 4 legged boy, Sonny.

So far we sound pretty typical and in many ways we are…and then there are the many ways in which we are not. In this first blog, I’d like you to get to know Luke with all his quirks and personality. He has a rare chromosome disorder and by rare I mean 1 other person in the entire world who has been identified with the same chromosomes. What are the chances? I used to joke that I’ve never even won a raffle and I have this child who is 1 in a few billion! He was on the cover of a magazine called Unique. And he was my first, so imagine when you were a first time mom, all the questions and uncertainty, our doctors were like, “we’re not sure there is anyone else like him in the world, but email with any questions.” What??? And then there was the internet, googling issues with the 14th chromosome was a very, very bad idea. I think Glenn was literally dangling my computer out of the upstairs window at one point. It was a tough time, it was a long time ago and we have come very far since. Luke is writing his own book and the good news, we have found one other boy with his chromosomes!  The bad news, he lives in New Zealand. But, he is happy and healthy and bears a strong resemblance to Luke.

Today, Luke is a funny little guy. He greets each and every person he sees and if they ignore him or happen to be wearing air pods, he will shout them out until they say hello. Luke is happy. He lives in the present, not thinking about yesterday or what the future may hold. In Luke’s world, everyone likes him. And Luke likes almost everyone. But, if there is someone who Luke doesn’t like, I trust his instincts more than anyone. Luke is 4’8”, 65 lbs, so a little guy on campus. He needs help dressing, eating, bathing etc. He talks but his language is limited and often difficult to understand but just to be clear that does not stop him from talking. He seriously talks non-stop some days. I like to say that Luke can do most things, to some degree, with a lot of hard work. He teaches us to work hard, every day complaining as little as possible, I know, some days are harder than others. But seriously, Luke has taught me more in the past 15 years than anyone else. I think that people with disabilities or anyone who has had to overcome obstacles or challenges of any sort are our greatest teachers. It’s one of the reasons I feel so strongly about inclusion, inclusive schools, work places, inclusive activities and communities. I’ll talk more about my experiences with inclusion in my blog, the good, the bad and the ugly. The changes I have seen in the past 15 years and we ARE headed in the right direction! And I’ll share our stories, our often funny, sometimes unbelievable stories along the way about raising a child with special needs. 

KINDly yours, Vicki

 

 


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