The language of Love

What do you mean Dac when you say “I’m sorry.” many times a day?

Why do you say a two word phrase “Deborah right.” yet you can not say ball

or baby?

Why do you lose words yet they may reappear months or years later?

Why do you speak in sing song fashion like your words are carried on a melody?

Today I think these thoughts about Dac’s ability to communicate, yet it is in her own way.

Echolalia. Doctors call it. Often associated with Autism which is one of Dac’s diagnoses.

I call it wonderful.

I call it words.

I call it sounds.

I call it music.

I call it long awaited.

I call it prayers answered.

I call it hope.

I call it the language of love. Keep on talking Dac. Mommy is listening.

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National Super Hero Day

Today is National Superhero day and while billions of people across the globe are

admiring fictional characters like Spider-Man, wonder woman, superman ect…

I am sitting here looking into eyes that are the oddest mix of blue/brown and thinking

to myself.

“Dac, you put those characters to shame.”

Dac  was born with a hero status. She was destined to be a fighter because of Tuberous

Sclerosis, Epilepsy and Autism. I have witnessed this first hand as she has barely clung

to life. In 1995 she developed her first brain tumor. what should have been a relatively

easy surgery brought severe complications. She had a mild stroke and lost her ability to

walk for several weeks. She also developed hydrocephalus and had to have a shunt

placed in her brain. Later she would have two shunts. Heart failure came next and she

spent weeks at Duke University in North Carolina holding onto life by a thread. After

that, over the course of several years there have been more surgeries, more tumors,

shunt revisions, Too many seizures to count, ect…

Do you know throughout all of this she has never shed a tear, That gets to me.

Today she is almost 28. (July 6th is her birthday.).

She walks around my home with sunshine smiles and laughter.

She walks in a land mine of Tuberous Sclerosis. Suffering monthly grandmal seizures.

Tumors lie dormant in her brain, heart and kidneys. Some are growing which will

require surgical intervention in the future.

So, today is National Superhero day.

Will you do me a favor. If you know someone who is fighting the good fight, please

give them a hug.

They are the “Real” super hero’s.

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The light switch

“It’s like a light switch that flips on and off inside her head.” I confided

to a friend while discussing my daughter Dac’s Autism. I think of Forest Gump’s

infamous line “Life is like a box of chocolates. You never know what your

gonna get.” That is a clear definition of Autism. My analogy to a light

switch stems from the changes in mood to which there seem no rhyme

or reason. Add non verbal to the mix and you are left shaking your head.

If you are lucky you might discover what the triggers to the mood changes

are and the light remains bright and glowing all day. If you are unlucky

you will see panic, fears, maybe tears, hear screams, there is darkness.

The light is off.

For Dac some of her triggers are sounds. She has a fear or flight reaction

to some pretty basic sounds. ie.babies crying, certain songs, loud rain and

thunder, ice cracking in a glass.” Yes, ice. Now, the dilemma is how can I shelter

her from such noises? The truth is I can’t. All I can do is to reassure her. That is

what apparent does best.

It is socially awkward to try to explain the manifestations of Autism. People

do not understand when the light goes out and our loved one is plunged

into darkness.

Even the ones who try to help are left feeling inadequate.

Sometimes I do as well but I keep trying to keep the light on.

Willing to Die Thirsty

love this

Finding nineveh

For Holy Week, I decided I needed to write something, and this is that something.  We’re going to get to the significance of Holy Week, but first I am going to need you to stay with me as I meander for a bit.

I have eclectic musical tastes.  I am all over the sonic map.  Rock, hip-hop, country (real country, not FGL), grunge, classical, alternative – you name it, and it has found a way into my ears at some point.  For the past two or three years, as I’ve made changes to many aspects of my daily life, one of the main focuses of my change has come in my musical interests.  I would estimate that I listen to an average of 60-75 minutes of music each day, and probably 90% of that music fits within the genre of “Christian Contemporary”.  I am a K-Love fan, but I get…

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How my daughter saved my life

How could my daughter who is 27 (mentally 2) save my life?

As I write this I try to remember who I was before Dac. I am sure I was a competent

Wife, Mother, Cook ect… but who was i beyond those roles? Before Marriage and babies

i was just a young woman without any real direction. I was not on any particular career

path. I actually thought becoming a wife and Mother was my ultimate goal. The idea of

falling in love and giving birth filled me with anticipation. When those dreams bore fruit

i felt like God himself had answered my prayers.

Then Dac came along and with her the diagnosis of Tuberous Sclerosis Complex. A

beautiful baby (normal at birth.) She would spiral down the rabbit hole and emerge a

young adult with a severe mental handicap, autism and Lennox Gastaut epilepsy 27

years later  but this is not about Dac. This is about myself. When i discovered Dac would

always be  dependent i made it my mission to give her the best life possible. I had to test

my mettle so to speak.

To determine whether i had the fortitude to take on the challenges of day-to-day life

caring for another human being. I was a mom already and a nurturer but i relished in

my other children’s sense of independence and identity. Would i find myself or even

Dac somehow lacking if she failed to perform even the most basic tasks? As i began my

journey i began to feel God’s eye was upon me. Was this a test of my character. Was God

testing me? I thought of God’s unconditional love for me and how many times i had

failed him yet he continues to love me. Warts and all.

I turned those thoughts of his unconditional love for me into positive action. How could i

not love my child in the same way? How could i best help my daughter who needed me

for all things? This was a discovery period. I learned i was braver than i ever thought i

could be. I was mousey in school.

Scared to speak up and always the nervous sort. In parenting a daughter with complex

medical problems my  hands have grown steady and my voice has grown(at times to

octaves) when speaking on her behalf. I learned how to project confidence in my stride

as i push her in her wheelchair into places where everyone stares.

“We are here. Stare if you must. We know we are fabulous.” my mantra.

I have learned what God’s Grace truly means as i observe the even rise and fall of my

daughter’s chest as she falls asleep. She made it another day. Overcoming seizures,

heart failure, brain surgeries and many other problems.

I have become a researcher, a teacher, a public speaker, a defender, an advocate, more

confident, more humble, a listener, a confidant, a friend and all of these things have

been because of my relationship with Dac.

Maybe i had some of these qualities before. I like to think so but i do not think i

ever gave pause to acknowledge who they made me as a person.

I like the me i am now.

I see myself in a different light just as surely as my daughter has differences. These

differences do not make us less. They make us so much more.

As surely as if she tossed me a life perserver ring in the ocean of life,

SHE SAVED MY LIFE.

She helped me discover my inner workings(my soul.) and i feel God smiling.

Thank you Dac.

me and deb

 

 

 

 

Pluses and Minuses

In parenting a child/adult with a disability there are a lot of pluses and minuses.

In the great scheme of life it feels sometimes if I am forever holding a huge notepad.

Ticking off the pluses and minuses with a huge black marker.

Plus                                                                         Plus

  1. No stimming today.                                   1. Dac was seizure free today.

Minus                                                                     Minus

2. Dac has begun hitting herself                    2. Dac had a bad grandmal seizure.

My mental notepad after almost 28 years is pretty full. The pluses are what keep me

going. They give me the positive reinforcement that help me face each new day. It is not

easy parenting a person who has Tuberous Sclerosis, Autism and Epilepsy but it does

have its rewards.

Take for instance the siblings of a child/adult with a disability.

Aren’t they just the greatest?

These siblings go to bat for their brother/sister in ways you never thought possible. They

are helpers, protectors, teachers, a friend when no one else will be. They sacrifice their

own wants and needs for their sibling who has a disability. These kids have grown up/or

are growing up in a home that demonstrates unselfish love and devotion every single

day. They witness and show compassion for another person. They learn patience and

kindness.

These are the pluses.

The minuses are much like the stages of grief.

There can be denial, anger, bargaining, depression and finally acceptance. These

emotions are reserved exclusively for the parents. Siblings feel “a lot” of things on

having a sister/brother with a disability. That is why we must “talk” to our other kids.

We must always remember that it is not their “Job” to be caregiver for their disabled

sibling but an act of love and devotion.

Yesterday I was talking to my son Anthony’s daughter Lakota(we call her kota). She is

five and she starts school this August. I am going to miss her. She has become Dac’s

daily helper(unsolicited.) Everything from giving her toys, cleaning up Dac’s messes,

putting Dac’s shoes on. The list is endless.

Kota can now tie her shoelaces. It’s bittersweet knowing Dac can not do such a simple

act. Kota is quite vocal about her love for Dac. She calls her baby. As she was coloring

yesterday she remarked that when she starts school if anyone picks on a person who

has a disability she was gonna give that person a knuckle sandwich. Of course I had to

tell her violence is not the answer but inwardly I took the lid off my marker and filed

this one under PLUS.

Live for the pluses. Always.

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We must lead by example

My daughter gets stared at “a lot.”

Why?

Because she has a disability, because she rocks her wheelchair with enough force

to propel it across a floor, because she has tumors (angiofibromas) on her face from her

disease Tuberous Sclerosis. Because society deems her an outcast because she does not

fit the idea of what is “normal.”

For a parent like myself this can be a heartache. A chasm of pain not for myself but for

this beautiful person who deserves to be loved and accepted by all. For years I let anger

be the manifesto to how I reacted to what I considered rude behavior towards my

daughter. I unleashed hateful stares, glaring eyes and attitude at these heartless people.

I was ready to fight. To go to battle over this insult to my child.

Then one day I discovered I was wrong.

There is a right way and a wrong way to make attitudes change and it is not with

anger.

I began to take stock of reactions to my daughter. I saw the curious stare.  This a quick

glance which we are all guilty of. It is neither insulting or rude.

There is the lingering stare. I often took issue with this prolonged look because I desired

for this person to just mind their own business. “We have a right to be here!” my mind

would scream as I stared the person down. I wanted to confront this person. To ask why

they felt the need to stare at my child like a bug under a microscope. I wasted a lot of

time worrying about this.

Now days, 27 years into this journey I handle things differently. If I see a prolonged stare

I smile at the person. I am not a mind reader. Maybe they are thinking.

“What a beautiful young lady. This young lady seems to enjoy life. This young

woman is so brave.”

Where along the way did I begin to assume “all” stares were meant to be hurtful or

unkind? Was it my own broken heart that led me to this conclusion? As Dac has survived

multiple obstacles in her life, my pride for her has risen to the top of all this pain that

comes with the disappointment of knowing your child will have a lifelong disability. I

have found my focus and it is not anger.

It is JOY.

I cherish the days we are together. I show the world that my daughter is someone

special. Someone who enriches my life. These unsuspecting strangers are gifted smiles

and even conversation. Perhaps it confuses them. For the most part I see their mind

working to solve the riddle of perhaps earlier teaching that people with a mental or

physical condition are to be treated as less. Either way I have learned that anger solves

nothing. It is a useless emotion that will fester and leaves scars.

We must lead by example.

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Crossfit Special Needs Style

I read and hear a lot about Cross Fit these days. Seems like everyone

is doing it. My older sister Debbie loves cross fit and she is awesome at it. She swings

kettlebells, does squats, lunges ect…All very hard core.  I admire her energy and

willingness to push herself to the limits.

Of course I also do Cross fit but in Special Needs Style. Here is my daily

workout.

  1. Resistance training-Lifting Dac from the floor when she decides to be uncooperative.
  2. Squats-the position I assume when cleaning code browns(poop)from the above mentioned floor.
  3. Lunges-attempting to catch the precious keepsake in midair that Dac  swats off a table.
  4. Situps-trying to lift my semi comatose body(from lack of sleep) into an upright position. might take several attempts.
  5. Kettlebell swing-the burning feeling in my arms after lifting 30 pound wheelchair out of car then swinging it up and back into the trunk.
  6. Burpee-Instantly falling over one of Dac’s toys then leaping to my feet to clap hallelujah that i survived.(can I get an amen?)
  7. double under– ridiculous attempt by myself to show above mentioned daughter how to jump rope.
  8. Turkish getup-the haste to get dressed and wear mismatched clothes all day (insert tongue in cheek here.)
  9. Wall balls-Again, poor attempt by myself to demonstrate basket ball shooting maneuver.

Ok…I know I am not in a “Box” when I do all this but I get lots of “Amraps.”

Its my “WOD” and I always give my “PB.”

My Awesome Sister Debbie who always gives 110%.

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and me and Dac. Doing it SN style every day:)

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“I love you but don’t touch me today.”

Did the title garner your attention? This is our life with on the Autism spectrum.

Everyday I do not know if my 27-year-old Autistic daughter will wake smiling,

engage me in play and want to hug. Some days she will not make eye contact,

despises being touched and wants to be left alone. There will be a faraway look in

her bluish/brown eyes. She is somewhere I cannot visit nor can I reach her. In the earlier

years I spent a lot of time trying to coax her back into my world. It always ended up a

losing battle so I would sit and wait like someone anticipating an arrival for my Autistic

daughter to return. It can be difficult to explain to others. For instance Dac has the most

engaging smile. It makes you just want to embrace her but Dac only gives hugs and her

affection on her terms. People do not understand when they try to hug Dac and she pushes

them away with a frown. I can not count the times I have said “it’s nothing personal. She

just doesn’t like to be touched.” How then do you explain when she is suddenly

spontaneously engaging and she comes to flop in your lap or gives you a sudden squeeze?

Dac seems to cope better these days and we reap the benefits. I have seen her walk up to

give her Father and siblings hugs that they once longed for. We savor those moments.

The intricacies of Dac’s autism are truly like trying to fit the pieces of a puzzle together.

Some days as hard as i look there seems to be missing pieces. Then some days i have

an AHA moment and the pieces seem to fit easily. I Love You Dac.

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