Epilepsy

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February 4, 2013 | Published in Advocacy, Autism Spectrum, Cerebral Palsy, Day In And Day Out, Dealing With Public Perceptions, Developmentally Delayed, Down Syndrome, Epilepsy, Laughing Through The Tears, Me Time, Resources, Sensory Processing Dysfunction

Now She Knows She’s Different

by Suzanne

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]

Tagged as: Special Needs Mom

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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

This 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.. we were singing to the music and making small talk about her day.

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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

Sent an email to the New Ms.

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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. Very cool addition! So, I lay out the blanket and get my supplies and proceed to take off the shoes, then the shorts (now wet but he’s wearing pull ups too) so take the diaper off to wipe him off while talking to the therapists … SNAP … OMG!

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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”

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. We looked around at what was avaible. Saw some really cute dogs, mostly big dogs. Came across one that was a mix…boxer and mastif mix. Although I have to say I was seeing English Bulldog on stilts when I saw him. Went home empty handed. But coudn’t shake the boxer/mastif mix out of my head. Did the research on AKC’s site to see what their temperment was and had decided that Monday morning we’d go and adopt him….He had already been adopted. Again home without a dog but we had seen a weiner dog (forgive me I think of how to spell the proper name tonight). It’s becoming a habit to be there every day, so I went to see if he was up for adoption yet. No tag as of yet…but I went to the room down the hall. There was a smaller room off the back, but locked. I went up to the front desk to see if these were adoptable animals. It was the puppy room he called it and tossed me his keys. My husband brought our son in, with his wheelchair and we went to check out a dog I had seen in the puppy room. First thing, first…the dog was getting so excited that we were in this little room (there were only 3 dogs and 2 were puppies one was an older one) I got out the older dog and pet him. seemed friendly enough, I sat him on my son’s lap in his wheelchair…he was the perfect fit. He promptly turned to my son and licked his cheek and then snuggled into him. My son smiled and laughed (in the squeal that he does) and the dog just sat there. I looked at my husband and asked him what he thought, of course it’s up to you is the answer I got. It was an older dog, the pound was saying he’s 10 years old. Being a small dog he could live another 4-5 years. He’s a miniature schnauzer/yorkie mix…although I question if he really is mixed and if he’s really 10 years old. He’s been absolutely perfect! Potty training was instant

which made things beautiful for us. Only one accident right after surgery (neutering) when he got home, but nothing since. He’s a jumper, jumped out of a pen I got for him to sleep in but not the first night. Took him back downstairs and put up a child proof fence…only for him to jump that too. So he hopped on the bed and made his bed at the bottom of my son’s feet. Snuggles with him in the morning, but even today let me know he was awake from a nap. He travels back and forth with us to my mom’s house and has wormed his way into all our hearts.

He’s been a great addition to our family! I think he knows it too :

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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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