Mitochondrial Disease

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive

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Halloween is right around the corner…here’s some of my top tips and tricks to make Halloween fun and to hand off to any of the indignant PTO moms who have forgotten that ALL kids want to have a good time…..

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halloween

Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal…

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The Mending Wall

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IMG_6047These wildflowers grow on a narrow strip of grass between someone’s property up against a century old stone wall and a city sidewalk near my home. There is a handwritten sign on a stake stating simply PLEASE DO NOT MOW OR SPRAY WILDFLOWERS. THANK YOU. While seeing them in full bloom one might wonder why someone would do that even when instructed to.

Today we were shaken again to our core. Today we were reminded again that nothing should be taken for granted. I am angry that again I feel afraid for my children when they leave the comforts of home.  I am conflicted because A2 is sick and at a time I should be saddened for 50 families and frightened at the fact that laws continue to exist that allow for permits for individuals to decide the fate of 50 people in one rain shower of shots. People who were given the right to exist with equal love are gone and we are all reminded there is still an opposing view.  But A2 is the kind of sick that makes his father talk in circles and makes me stone faced and logical. The kind of sick that sinks our instinctual fears as parents until the wind kicks up again and fills our sails to let us know it’s smooth waters soon. I can’t fear all things at the same time.

So I can stop to show you these flowers I saw today. And you can stop to see them. And we can all appreciate that someone stepped up to make sure that they bloomed to their full beauty for all of us. Please see them. Just for this moment. ‪#‎onepulse‬  

On the Eve of Your 11th year…..

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Your brother saw the ocean for the first time about a month before we knew you.  The expanse stopped him in his tracks leaving him silent and still.  The moment you were born 11 years ago today you cried and screamed and when they held you up for me to see I instinctively whispered your name.  You stopped crying, found my eyes  and you were silent and still and you took my breath away.  Your presence in our lives has been like seeing the ocean for the first time–beautiful and tumultuous and every day is like seeing the world in a way no one else gets to.  I feel lucky I get to be your mom.  Happy Birthday sweet A2…….

Day 21. T is for Teachers and Therapists.

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Day 20 2016: T is for Teachers and Therapists

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Day 20

Day 20:  T is for Teachers and Therapists

97. A2 has had a total of 97 teachers and therapists in his short 9 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published…lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 80,000 hours on this planet. Some were stellar….life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact…

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Day 18. R is for Relationships

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Day 18 2016: R is for Relationships (originally posted 4/2015)

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Day 18

“Are you sure he has Autism? He’s so friendly…”. While there are more nuanced aspects now to the criteria, failure to develop peer relationships appropriate to developmental level is one of the defining and most obvious diagnostic identification for children with autism. Interest in people in general, desire for friendships and loving behavior can muddy the diagnostic waters and confuse people about what autism is and what autism isn’t. Disconnectedness, aloofness and lack of desire to be touched does not always translate as a lack of desire for relationships. The desire is there, the understanding for how that happens is not. It can just be easier to be by yourself. A1 can tell you that. Indiscriminate friendliness, hugs and kisses to those he loves and the compulsive desire to be around a lot of people doesn’t always coexist with developmentally appropriate social skills. A2 probably would tell you that part…if…

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Day 21 Autism Awareness Month. U is for Ubiquinol

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Day 21

U is for Ubiquinol

(originally posted 4/2015)

If you have heard this word before it is likely that you are either are a biologist or have a child with a mitochondrial disorder. In our case, to be sure….I am not a biologist. There is mounting evidence that autism and mitochondrial disorders at least co-exist in many cases. Mitochondria are organelles in almost every cell in the body and are considered the powerhouse of the cell. The mitochondria break down chemical compounds into energy and put it back into the cell for use. When there is a breakdown in the mitochondria factory, it cannot produce enough energy for the cell which can result in cell damage or death. This damage tends to affect larger organ systems such as the brain, heart, endocrine system, gastrointestinal system, kidneys and respiratory system. (As I mentioned….I am not a biologist..that’s about the best I can explain). The first time after 9th grade biology I heard about ATP or mitochondria was sitting in a neurologists office with A2 when she cocked her head and said “I need to send him to the Cleveland Clinic….I think he has mitochondrial disease…I am so sorry….”. I was confused–“Ok”, I said and left the office feeling optimistic that maybe we figured out why my baby completely stopped physically growing or gaining weight and developing. If we know what it is….we can treat it, why was she apologizing? But as it turns out, there is no cure and no real treatment for mitochondrial disorders. These disorders also tend to be progressive in nature so we must try to protect the mitochondria to the best of our ability using supplementation (thus the Ubiquinol CoQ-10) and body system balance. Under a microscope, A2’s mitochondria are oddly shaped..and there are a whole lot of them…and this hastened the question did some disease process or environmental assault cause this problem….or did he inherit it from me (mito are maternally inherited)? If something happened, what was it? Did I eat too many pesticides on my produce while nursing? Was his immune system down when he got a vaccination? Was the rated “F” water in Las Vegas where he was born full of toxins that damaged my baby? I am rational enough to know that there was nothing I could have done about my own mitochondria nor could I guess exactly what environmental assault would have caused such a huge problem…but it is here. And I now know why the neurologist apologized to me on that warm, blue skied summer day back in 2006…..

Autism Awareness Month 2015. K is for Kismet.

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Day 11

In the month of our 15 year anniversary, I can confidently say we have embarked on a journey neither of us could have expected.

In some ways I wonder if our trek is easier than others since we never had musings of what our unborn children would be like or what kind of parents we would be.

…or if we would be parents at all….

I believe in a judicious balance between predestination and free will. Sort of like walking into a movie complex. You can pick the movie you will see, but once you choose it, the plot and ending remain the same. It is up to you if you decide to leave the theater to get popcorn or simply decide that movie is not for you and you should have never listened to Siskel and Ebert’s reviews to begin with.

All marriages require a gentle balance between cohesiveness and independence….and especially with families like ours. Stress is a constant, sleep deprivation a given, and child rearing? Well, throw out everything you ever thought you knew about that. Not everyone can do that.  Usually, the stronger is left holding the bag on their own.  I know too many families like that and watch in awe as the parent left behind carries the weight of her world.

Through thick and thin we give each other the space we need, recognizing we are in for the long haul.  Our children are who they are supposed to be.  We make the same mistakes as every other parent in every other union, but with the knowledge we must be united as forever parents, even long after we are gone.  And for that, perhaps we are luckier than most.