Tag Archives: guest post

Word of the Week: Dichotomy

Word of the Week: Dichotomy.

A division or contrast between two things that are or are represented as being opposed or entirely different.

I always loved this word. I was the only one who got it right on a quiz once. But I guess I have come to question/hate/understand it a great deal lately… I guess this is one for the blog…

Going

Recently we visited our first potential residential school for my 15-year-old son Alex (PDD-NOS). The car service whisked us for two hours to a sprinkling of one-story buildings across what no doubt was once a meadow. These schools seem to be mushrooming and expanding; many of the buildings smelled of new lumber and of crisp appliances just released from cartons.

The staff made us welcome, fetched us bottles of water and said Alex would spend most of our visit in a classroom. “No!” said Alex, pulling away. “Car!”

Vitamin D Deficiency

Our family friend, Laurie, volunteered to share a paper she wrote on the importance of Vitamin D.  As caregivers, it can be challenging simply to keep up with daily tasks let alone keeping up to date on the latest health information. 

Laurie sent this to me noting: “I was thinking about your kids getting sick a lot. They could be deficient, esp. Riley because he gets very little sun exposure and is on antiseizure meds.  I have been learning a lot lately about the fact that a lot of us don’t have enough vitamin D because we don’t spend enough time outside (getting full sun exposure for at least 30 minutes a day). I am very interested in the work of the Vitamin D Council and have contacted them to get involved in spreading the word. I have summarized what I have learned in the attached article.”

Riding the Storm

Oh how I wish I could warn you mama…It’s coming, I can feel it, but I can’t control it; I try but it’s inevitable. I am about to enter into another “storm”.

I can’t make this sh*t up!

Sometimes I feel like there is no one in the world that understands how my life works.  Surely if there were more people who understood the ins and outs of daily life for people like me, more people would be considerate… right?

I have to tell you a story about a time I went to St. Augustine.

Reflections on Life’s Challenges – Kaet’s year in review

Our children go through this life facing things we would never have been able to imagine, yet they continue to grow and thrive defeating all odds. The longer they stay with us the more they teach us and allow us to grow with them. They are an inspiration even to the professionals that treat them.

As this year comes to a close I take this this moment to reflect on our experiences; some good, some bad; nonetheless all lessons in life.

Hope Will Never Fade – The Victims of the Sandy Hook Tragedy

“For the day is done…No more words to speak, no more birds singing, it’s all quiet and empty. Our hearts are heavy and nothing makes sense anymore. Our eyes are sore for we have cried so much. How we have grown used to the taste of those salty tears. Oh how the weather has changed.

Aware

Who’s aware? I hope all the people who don’t lead the life that I do. Self-pity? There’s no such thing to the dad I am.

I’m aware to my core. “I was going to send you an Autism Awareness Day card,” a friend wrote a few years ago,” but I couldn’t find one in the Hallmark aisle.” Why not? God, she was smart.

Grandparents Day

It came upon us suddenly, but unlike many things in our lives (with disabled), this was not bad:  Grandparents Day.   My wife and I both lost our grandparents earlier than we would have liked.  Unlike myself, my sons will not know their Great-Grand-Parents or even their Grandfathers.  However, both our sons are Blessed in Many Ways by their Grandmothers.

Having a disabled child is hard.  People often focus on the parents as they are the ones to deal with the child (or disabled adult) on a daily basis.  However, I often think about what it would be like to be a grandmother.  There are expectations of playing with them in a “typical manner”… or at least hearing them say your name (“Kappi” or “ReRe” in our cases).

Having a disabled grandchild is not what you would expect.  Not to speak for our circumstance, but IF I WERE A DISABLED GRANDPARENT… I guess I would not always know what to say to help my child and grandchild.  Physically, I might not be able to hold my grandchild (due to mood or physical constraints).  It does not mean that we are not able to be AMAZING grandparents.

John

My Angel at 108 Degrees

As a mom of a special child I am resigning myself to the fact that there may be some things that occur to our children that are beyond the scope of knowledge of the medical profession. A very difficult “pill” to swallow as we want to believe that they can find the source and “fix” or prevent these things from happening…

As I write this, we are on day 6 of hospitalization from yet another fever episode. Kaet, without warning started showing signs of an “episode” and the school staff called 911 and then me. The school nurse describes the episodes as turning cyanotic and grey/clammy skin color along with respiratory distress. By now (as this is the 3rd time this year), we know that means the fever is coming; the nurse checked right away and got a reading of 99 degrees, shortly before EMS arrived she attempted another reading and it was just above 100 degrees; by the time EMS arrived at the ER, she had skyrocketed to 108.1 degrees!! – yes AGAIN, my baby girl’s body was “cooking”.

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