Epilepsy — 5 Minutes for Special Needs

Epilepsy



                               

When Zoe was little I spent a lot of time thinking  ( and writing) about about how different she was. Then she grew, and through her grade school years blossomed with the encouragement to try and do her best as I made sure she was always included, and treated just like everyone else.

Zoe will be starting sixth grade next year, and growing into who she is meant to be. She is quick to laugh and smile, full of pre-teen sass.

I have always maintained my own set of rules for Mothering Zoe. Many of them involve not making a big deal about her disabilities, within our family .. even in small ways. [click to continue]



                               

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This Year’s Medical Goodie Bag

  • Alternate Tylenol and Ibuprofen every two hours
  • Alternate daytime / nighttime cold / cough remedy OR
  • Allergy antihistamine – whatever seems to work well or that particular kiddo
  • Vicks Vapor Rub (aka Mentholatum for other ‘old school peeps’ like me) on the chest and slathered about the feet at night with socks
  • Warm mist humidifier
  • Cold damp cloth on the forehead
  • Albuterol breathing “treatments” as needed for wheezing
  • Antibiotics when they’re finally granted

Medical Goodie BagThis is my new routine – my sick routine of the last month or more. It started with J’s strep which was quickly and painfully eradicated with a bicillan injection.

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Message for ALL Mom’s.. LOVE your kids, as if they were dying..

My day had started like any other, I was up at 5 packing lunches and backpacks, while trying to gulp down some coffee. I had an appointment at the office later, so I spent a few minutes standing in front of my closet perplexed and sighing. I looked in the mirror, briefly noting the major damage 40 plus years and nightly interrupted sleep can bring.  Finally, by 7 am, we were all dressed and ready, so we hit the road to drop Zoe’s big sister O, at her school first.

Later, it was just Zoe and I in the car. The sun was streaming through the car windows, the radio was on and I was trying to make Zoe laugh.. 

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Surviving “Too Many Balls In The Air”

The holiday has passed, the change of season seems to be upon us – something I am nothing short of thankful for. It’s this time of the year I get energized, my mood is much happier, the bounce is added to my step. If this morning is any indication, it’s a good thing it is.

My activities of the morning:

  • Letting J sleep in since he hasn’t slept for more than 10 minutes in the last 48 hours
  • Getting the youngers (my made up word for O and B) dressed and ready for their first day of school with Mom and Dad as their helpers
  • Return from above trip because I never looked at my calendar to see we were 1 hour and 45 minutes early
  • Let my mom go home, who was at our house watching over J since he slept in
  • Got J ready for school and us re-ready for school
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Waiting for Treatment

I want to write to you to tell you all the positives that can come from special needs, or rather, what we learn and how we grow as individuals raising children with special needs. I want to give inspiration rather than sorrow, the promise of a rainbow after the clouds. But I can’t. Not because I’m swallowed with sadness, I’m not, but because I’m confused.

We’re at a point where I know what to do, yet don’t know what to do. It’s an odd place to be. J has good days where his articulation and ability to have conversations is surprising, making me take a step back.

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all in a day’s work

It’s official we started back at therapies…after a year break…under protest but just the same we’re back.  Yesterday we had our first visit, Physical Therapy, as we’re in the waiting room my son’s cracking up a at door that opens shuts constantly (first thing in the morning so busy time).  He proceeds to then find the need to dirty his diaper, and it’s time for therapy to start.  I go back with him or they’d never get anything done with him.  I was excited because the room no longer had the gym mat laying on the floor but an adjustable table. 

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The Value of Life.

…”The hard part is trying to answer the questions Walker raises in my mind every time I pick him up, What is the value of a life like his — a life lived in the twilight and often in pain? What is the cost of his life to those around him? … If Walker is so insubstantial, why does he feel so important? What is he trying to show me?”

-excerpt from Ian Brown’s Memoir “ The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son“

It was this passage of the book  The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son that first stopped me.

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Not All Diagnosis’ Fit in the Same Box

The problem with diagnosis is….

It puts people, individuals with likes and dislikes, quirks, needs, abilities and disabilities in a box. Cutting out their very individuality that makes one person differ so entirely from another. The differences between them no longer seen. In essence treating one person with an ability within a diagnosis the same as the person without an ability within that same diagnosis.

Take services. Epilepsy can cause a number of images. Friends falling to the ground with Grand Mal Seizures is the most common image people conjure. But two people with epilepsy can look vastly different. There are Grand Mal seizures, clonic-tonic seizures, absence seizures and an amazingly large number more.

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My buddy and me~~

Ok, maybe it dates me that I can remember that tune that played out on television…”My buddy, my BUDdy, My buddy and me can climb up a tree, my buddy and me are the best friends we can be~~ My buddy and me”

Meet our Buddy "Toodles" yes named after Mickey Mouse clubhouse O'Toodles

I wish I could turn the picture for you…but editing isn’t letting me.  Anyway, this is Toodles.  A few posts ago I mentioned that we were considering purchasing a buddy for our son.  I had a cocker spaniel picked out…went to adopt and she was already spoken for that was Saturday. 
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Just Keeping Your Head Above Water

I am not sure when it was exactly, that I stopped planning ahead. It could have been when Zoe was little and ill all the time. Maybe when her big sister Olivia was still catching every virus too- but somewhere along the years with appointments, kids school stuff, daily care and flu seasons- and trying to work from home- I stopped looking ahead on my calendar and started my focus of just keeping my head above water. One day at a time.

Sometime after that, I gave up the guilt  too. Feeling remiss about the appointments I had to reschedule, the lunches I could never follow through with , the birthdays I missed, the social calls I could not return.

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