Large Family Happenings, Medical Issues

Update on Our School Situation

Update on Our School SituationUpdate on Our School Situation

Here is the Update on Our School Situation.  The kids have been in school for 2 weeks.  In those 2 weeks, I have done a whole lot of nothing.  I spot clean the house.  Supper is usually done by about 10 am because I can cook uninterrupted.  I pet the dogs and the cats.  Chip, my outside cat, and I have gotten to be besties.  There have been days I’ve just mindlessly scrolled through the internet.

Lest We Forget

Still did an infusion for Hunter, one day.  Baseball drop-off, pickup, and a game 3 days a week.  A deer through a windshield.  There were a massage and 2 dates with a bestie for lunch/breakfast respectively.  Oh, and naps.  I’ve taken naps.  Homeschooling.  I still have one kid here trying to finish her schoolwork.

Next Week

I have a hair appointment.  Then there is another all-day doctor’s appointment with Hunter.  Again, drop-off, pickup, and another baseball game 3 times a week.  Horse therapy.  A birthday.  And…homeschooling.

Maybe I do still do things.

First 2 Weeks with Daniel and Jude

Daniel is coming into his own.  It takes him a bit more time to do his schoolwork.  He has been dubbed “the smart kid” in his history class.  That title, he has beamed with pride.  He is making friends and eating more than he probably should.  He does love food.  I believe he is finding his way and that brings me joy.

We have discovered that in Jude’s apprehension to wear his hearing aid, he is now okay with it.  Once the student’s asked their 5000 questions, he is now considered bionic.  The obviousness of his skin color has been met with pride. He is wearing his heritage and proud of where he came from.  He is jovial, excited, and thriving.

Then There is Hunter

Hunter tends to express his needs/wants with a great and determined expression.  He now has 2 girlfriends..PA and then the girl with the long pretty hair.  Food has been challenging.  As he has some dietary restrictions, he eats what he can at school, and then I pack food for him.

On the first day of the “strike” system and he gets one for calling a kid “bad.”  Good times.  He has met the nurse with a good amount of blood and scrapes.  Apparently, in the stampede to go outside he got tripped up.  We do homework at night and he is focused.  He is loving it.

Noah Started College

He began this past Tuesday, so as of this posting, he will have been there a full week.  His nerves were shot.  He was so very nervous and anxious.  I think he is finding his footing but he has yet to experience the full-fledged experience of college.  I foresee that it is going to shock him.  He’s got this though.  I know that he is smart and determined.

Alyssa’s School

She has started the first day of her last year of college.   Gracious, she is overwhelmed but gaining traction.  She moved to another apartment and is getting her feet wet in the world of being in a fast-paced last year.  I’m so proud of her.

Grayce Plugging Away

She is still working on finishing her last year of high school.  I was hoping that she would be done by the end of December but I am not sure.  For a fact, according to the state of Kentucky’s requirements, she does have enough to graduate.  I, personally, just have some things I want her to complete.

We have many irons in the fire with what our next step is.  Yet, we just don’t know where to move.  Until I have a clear direction from Jesus…we stand still and do what we have been doing.

Ben and Bug

They are not in school but working hard.  I’m super proud of them both too!  My children bring me such joy.  I’m blessed beyond reason.

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Large Family Happenings, Medical Issues

Feeling all the Things

Feeling all the Things

Feeling all the Things

Here I am, almost midnight, the eve before 2 of my boys start middle school.  I am Feeling all the Things and then some.  Fear creeps in and then I hear my sister say “Fear is a Liar.”

There is so much I worry about.

Will Jude remember NOT to go through the metal detector?  Then my thoughts swirl to “I cannot believe my children have to walk through a metal detector.”  Will he lose his hearing aid?  What if he doesn’t wear it?  He may fall asleep during class…will he get in trouble?  Did I tell all the teacher’s about his hearing and his sleep problems?  Do I have all the things he will need to get started?  Will he be bullied?  What will he do if he is bullied?

Then there is Daniel

He is not like other kids.  I know that he knows that but others don’t know that.  They don’t know what he struggles with, internally that can manifest in strange ways externally.  What if he can’t handle the class load because his brain works a couple of steps behind the “typical” kid brain.  Will he be made fun of?  What about testing, he doesn’t test well and needs more time.  Will they know that?  He eats a lot.  What if he is still hungry and his brain slows further because he needs an extra protein or water?

Friday

On Friday, I send Hunter for his first day.  I have loved, hovered, protected, fought for, rallied with, held up, spoon-fed, and more for the last 3 years.  The last 2 years we have literally been to hell, knocked on the door, and then fought off demons with a water pistol.

What if he gets sick?  Will that put him back in a wheelchair?  What if he can’t sustain?  Will kids make fun of him and bully him?  What if he shakes so much he can’t do the things that he wants to do?  If he gets lost in the hallway, falls in the toilet, rages, struggles…what then?

Peace or No Peace

The past month, I have had such peace with this decision.  So ready.  Theoretically.  Now that it is here.  I am an anxious ball of stress.  Living on the edge of the mountain and looking down thinking…”It doesn’t seem so far…I’ll just jump.”  I can’t sleep and my mind is going 1000 different places and all at the same time.

Knowing the Right People

I know a lot of people in the system.  From the top dog to the bus drivers and that is all a good thing.  They know my kids and my kids know them.  I know that I am 5 minutes away from Hunter and about 8 away from the boys.  There have been a lot of words spoken over the course of the week but for the life of me, I cannot remember a single conversation.

Homeschooling Has its Own Struggles

It is not all peas and carrots.  I am strict, focused, and on it.  The bar is set very high for my standards whether you are “special needs” or not.  We aim high and do our best to get there by any means necessary.  I feel accomplished in graduating 4 of my 7.  Yet, there is guilt for not “finishing the race.”

That is Satan, whispering in my ear.  I know this, deep down.  Yet, I still turn my head as I hear that voice.  It still penetrates me and makes me question all the things.  I see all these “got it together” homeschooling mamas.  Yet, I know.  I know the struggles.  I’ve lived it for 20 years.  Secret time.  I HATE teaching a kid to read.  I’ve done it with 6 of my 7 but it is not something I enjoy.

I Miss My Lady

If she were here, I would drop the kids off and go to her house.  We would sit at her kitchen table and talk about all the things.  She would tell me that it was going to be fine.  Then, she would line me out on listening to Satan instead of Jesus.  Next, she would tell me the newest and latest sandwich at a particular restaurant and we would go and partake.  Finally, she would make me cry and then nap in her green chair.  I can play this all throughout my mind.

It Will All Be Okay

We will get into the flow.  Pray for the best for Hunter.  Hopefully, he will not get sick and flare-up.  If I cry, that is okay.  I know that at any point, I can change my mind and so can the boys.  My plate has been overfilled for the last 5 yrs due to many many things.  I know that I can take this time to heal, mourn, work on my health, and my passions.

For the last 23+ years, I have wiped butts, noses, educated, loved, kissed boo-boos, and more.  I sort of forgot who I was in the process.  That is okay because I have pretty awesome kids.  Jesus gave me the privilege of borrowing them for a time.  I will continue to treasure each and every new moment.

For Now

Let’s just pray that we will all bloom where we are planted.

Related Posts:

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Medical Issues

Dys- Learning Disabilities

Dys- Learning DisabilitiesDys- Learning Disabilities

This is a breakdown of the Dys- learning disabilities.  Honestly, growing up (up to adulthood, I guess), I only knew of Dyslexia.  In that, Dyslexia meant that you saw/spelled a word backward.

Pretty amazing that that is all I thought it encompassed, huh.

Over time and with the help of some amazing therapists, I have learned so much more.  By stepping out of the “box” I had created with LD’s, I was able to expand my mind and have many “aha” moments of realization.

Dyslexia:

According to the National Institute for Learning Disabilities (NILD), “Dys” means difficulty with and “lexia” means words – thus “difficulty with words”. Originally the term “Dyslexia” referred to a specific learning deficit that hindered a person’s ability to read. More recently, however, it has been used as a general term referring to the broad category of language deficits that often includes the ability to hear and manipulate sounds in words as well as the ability to read and spell words accurately and fluently. When breakdowns occur in these foundational reading skills, dyslexic students often struggle to understand what they read as well as develop vocabulary at a slower rate.

Dyscalculia:

“Dys” means difficulty with and “calculia” means calculations and mathematics – thus “difficulty with calculations and mathematics”. This term refers to those who struggle with basic number sense and early number concepts as well as have difficulties with math calculations and math reasoning.

Dysgraphia:

“Dys” means difficulty with and “graphia” means writing – thus “difficulty with writing”.  The term dysgraphia refers to more than simply having poor handwriting. This term refers to those who struggle with the motor skills necessary to write thoughts on paper, spelling, and the thinking skills needed for vocabulary retrieval, clarity of thought, grammar, and memory.

Looking Back

In my years in school, this all makes sense.  When I was young (even now), I was made fun of terribly in school.  Teachers would put me in the hallway, alone.  I had to go to a special ed room.  There is this clear memory of standing in line, with other children, behind the teacher.  She marched us to the special ed class in front of everyone.  My “friends” pointed at me while laughing because I was going to the “stupid” room.

That phrase gives me anxiety, to this day.

I had to be kept in from recess because I wouldn’t do what they wanted me to do.  Memorization of math facts, in second grade, was a nightmare.  I had to miss fun outings, sit alone, and worse…I had my name at the bottom of the list of kids who hadn’t learned these facts.  Everyone saw.  Everyone made fun of me.

Things I struggle with

Telling time on an analog clock is one of those things.  If the watch (I no longer even wear a watch) has no numbers or Roman numerals…forget it.  I can do it but it takes me a hot minute to think about it.

Directions…just don’t even.  I can tell you landmarks because I became an expert at knowing my surroundings.  Cardinal directions, ordinal numbers, place numbers, Roman numerals.  Hard pass.

My right from my left…nope.  Luckily, God created me with this issue, so he gave me a mole on my right hand.  Ask me to look to the right and then watch me look/feel for my mole on each hand.

When I have a series of numbers, I always flip the 2 middle numbers.  Always.  Needless to say, I have messed up balancing checkbooks, appointments, phone numbers, etc.  I have to write it, say it, write it again, and clarify now.

To get through math, through all grades, I cheated a lot.  My mom is a math teacher.  She is brilliant, but I simply didn’t get it.  I didn’t understand and I felt stupid when I would ask.  Seriously, I should know this stuff.  She is brilliant and available, yet I would not ask because then she would know my secret.

Do you know how long it took me to learn how to tie my shoe?  Luckily, velcro came on the scene and saved me.

That’s what I thought it was

My secret.  As long as I had my mole, knew landmarks, cheated, got a digital watch…no one would know.  Sadly, I knew.  I have no clue how I managed to do all that I did with the degrees that I have.  Pre-Vet has A LOT of math and calculations.  I would have little tricks that would help me along the way.

Then Came D

When D entered my life, he was 2.5 yrs old and non-verbal.  We knew he had some issues, so I immediately got him into First Steps.  He got tubes, twice, and finally learned to talk…with a speech impediment.

No biggie.  After he graduated from First Steps, I got him into Home Health.  He worked hard on his speech.  Over time, I realized that due to FASD, his memory was fresh every morning.  No matter how hard he worked or working with him, he would forget everything I taught him.

Public School

While we were in the process of adopting Jude, we had to put the kids in public school.  D was in Kindergarten.  Guess what?  He was in the special ed classroom, but not an all-day thing.  Just long enough to work on his alphabet and phonics.

He finally got it, but the writing was a no-go and reading was not happening.  The sadness of seeing him struggle was palpable.  It brought up a lot of repressed memories for me, that I had to trudge through in order to help him.

MSU

I pulled him out of school for many reasons, none of which I will go into because it is his story to tell, one day.  In doing that, I knew that I needed to get him back into speech.  We had his hearing checked and doing that, he was checked for Sensory Processing Disorder.  Luckily, all that was good.

Across the hall was the speech team.  We met with Alison for a “get to know you” and see if he qualifies for their program.  Well, he did.  She didn’t ask me how he was at reading or spelling.  There were questions like “does he know his right from his left” or “how long did it take him to tie his shoes?”  I answered them all as honestly as I could.

Verdict

When it was all said and done, she said that he did qualify for the speech aspect of their program.  Then she patted me on the back and said: “we do not diagnose, usually, for dyslexia until a child is older.”  I was like, alright…that ship didn’t even enter my harbor.  She got really quiet and patted me on the back.  Quietly, she said “Your son has severe dyslexia.  I knew within 5 minutes of meeting him.”

I started laughing.  She was startled at that response, so she kept on patting.  While asking if I was okay, I said:  “We just discovered my 6th child has single-sided deafness, so this diagnosis for D is just like a teardrop in the ocean.”

After that, I just stated that I thought it was me and I just was not able to teach him.  She said that is not the case, that he just learns differently.  As we continued talking about the red flags of dyslexia (and dysgraphia), she asked me a few questions about myself.

Revelations

In a moment of clarity, she looked at me and smiled.  She said you do realize you are smart and that you have been able to overcome your learning disability.  I must have had a blank moment because I did not comprehend what she even said.  She asked me when I was diagnosed with Dyscalculia.  I told her that I had never heard of that.  That I just thought I was stupid in that area.

Cue emotions.

She explained what that was and that it was crystal clear that that is what I had.  Back when I was younger, there was not a name for it.  Now there is.  I almost felt vindicated.  It is what it is.  I have compensated for my shortcomings and confusion.  So has D.

New Lease

Now, we are armed with knowledge.  D cannot spell worth a crap.  Therefore, I got him a pocket speller.  He has all these ideas and thoughts, but can’t get them on paper.  I bought Dragon Speak so he could speak out what he needed to.  He has written some awesome things through this program.

We bought an amplifier so he could hear what I was saying and his speech is corrected.  Also, we did many years of speech/reading/language therapy.  I had him write books from the Bible.  His penmanship is meticulous because he has worked incredibly hard.  Cursive was something I thought he would not be able to do…guess what though?  Writing the book of Genesis in cursive has changed that too!  We got a dry erase cursive board and he practiced until he mastered it.

He loves to read, so any series that interests him…we get.  Also, Librivox and Audible have been game-changers.  Both of these programs have real lived people (as opposed to the computer voices) reading stories.  He gets to hear it all, but he also gets to hear their inflections.  This has helped his speech tremendously.

Fear is a Liar

I lived in fear.  Now, I am armed with Truth and knowledge.  By being armed, it has given me clarity and understanding.  Learn all you can about something you are afraid of.  You are strong, brave, kind, and good.  We no longer live in fear.  We are empowered!

 

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Things You May Not Know About Homeschooling A Child With Dyslexia

Things You May Not Know About Homeschooling A Child With Dyslexia

Things You May Not Know About Homeschooling A Child With Dyslexia

There are things you may not know about homeschooling a child with Dyslexia   Homeschooling a child, with Dyslexia (and other learning disabilities), has been one of the most stressful, difficult, undesirable times of my life.  Dramatic?  Maybe, but it is my truth.

I was ELATED when we found out our child had dyslexia.  I mean, I giggled.  It was such a loud giggle that my child’s therapist thought I was fixing to have some sort of breakdown.  She even patted me, and I got a hearty “bless your heart.”

By the time my child was diagnosed, I had had this child in public preschool, homeschool, back to public school, and then when that crashed and burned, back to homeschooling.  I have homeschooled this child for the majority of his life, but I wanted to see if someone else could figure out what was wrong.

Luckily, our local university does specialized testing that does not cost me an arm and a leg.  Add that to the fact that his therapist (and all of the grad students) were beyond amazing with my child (and with me).

Getting Tested

Getting tested was not a hard thing to do, once we got going.  We first had him tested for Central Auditory Processing Disorder (CapD).  That yielded the result of nothing was wrong, and his hearing was excellent.  No help, no answers.

We started therapy because I thought maybe it was depression or anxiety.  That was another plane flying into a mountain kind of moment.  It yielded no results.  Next, we tried medication for ADHD/ADD to see if that would spark something.  The meds did nothing.

It was an exhaustive list of things that we tried.  There was no amount of anything I could do or that I tried that helped him.  He was falling further and further behind, educationally, mentally, emotionally, and otherwise.

Finally an Answer

Once we got our appointment, at our local university, the therapist said she had to “score” the results.  That was when the back-patting began.  I asked her why she was patting my back and had a look of sympathy on her face.  She just smiled that sweet smile and kept on patting.

She said that she could not definitively tell me anything (until the scoring was done), but she knew within 5 minutes that he was SEVERELY dyslexic.

**Cue giggles**

Working Hard

She and the grad students worked really hard with him.  He worked very hard, as well.  They did the Barton system with him, that did help.  He was “well enough” to leave intense therapy.

Since he has been out of therapy, life has been hard.  He is not progressing at an average rate, at all.  He struggles, at times, with even spelling his name.  Spelling, well that is a thing of the past.  I’ve finally yielded and bought him a spelling calculator.

We have the Dragon software, so he can “tell” stories instead of having to write them physically.  This does not help with his grammar, however…I feel like that could be a lost cause.

He does have an insatiable love of reading.  I am incredibly thankful for that aspect of his life.  He may skim over words that he doesn’t know, but he still reads.  He prefers the Encyclopedia on any type of war.

Other Issues

Other issues play into the delay that this child has, but I’m not going to go into them.  I just know that I hold onto a lot of the guilt for how behind he is.  It is not for lack of me holding him to a higher standard or for seeking outside help…it is just a mom’s guilt.

I know that I am not to blame for things his biological mom chose to do, while pregnant.  Logically, I know that, but still…I wanted to be able to fix it.  To make it better.  Help him learn.  See him thrive.

I almost feel like I’m 1/2 way up the mountain.  I’m not sliding down the mountain, and I’m not going upwards either.  A treadmill…I’m standing on a treadmill, going THROUGH the mountain.

Here’s to all the mama’s going through the mountain.  Cheers.

The More You Know

Test for Dyslexia

Dyslexia: Symptoms and Causes

 

Life or Something Like It, Medical Issues

Part 3 Welcome Home

Part 3 Welcome Home

 

Part 3 Welcome Home.  My flesh screams and I’m hanging onto the armrests of my airplane seat.  I refuse to move.  This is my anniversary.  This is our planned TRIP.  We are not moving.  I do not want to stay.  Honestly, I would live in France, if I had to, but guess what?  I don’t have to.  We are traveling, that’s it.  No more, no less.  I sit there, stunned. Unable to move or comprehend what all I’m about to see/smell/witness in this country I have never planned to go to.

What I Envision Versus Reality

The door of the plane opens…we grab our luggage that is packed for France….and we get off the plane.  My first thought is the drabness of the airport.  The busyness of it.  I felt like I needed to wash my hands because so many people were touching me.  They were all speaking in different languages.  I found myself watching their mouths move, trying to read lips or get a nugget of information, but I couldn’t.  I couldn’t understand any person or sign.  There was also not a single person who spoke English.  I felt trapped in this foreign country.  There was nowhere, no one to guide me, no vehicle, no home, no food, nothing.

Overstimulated Moment

I picture us grabbing our stuff and trying to find our way out of that blasted, loud, big, busy airport.  There was a moment when I needed air.  Sadly, I was overstimulated by the news and anxious because this was completely out of our control.  Air, I needed to breathe fresh air and take a moment to regroup.  I was thrown into something that was not of my doing.  There were two choices, I could either curl up in a ball and sob or I could find a way through the fear and uncertainty.

Ray of Sunshine

As I processed this news, I felt a ray of sunshine hit my face.  I felt a cool breeze as we walked outside.  In one moment, I opened my eyes and from as far as the east is from the west, there were tulips.  I love tulips.  Honestly, I love the beauty of them, the array of colors, the smells.  Tulips come up every single year without fail.  Far off, in the distance, I saw windmills.  The most gorgeous background, I have ever seen in my life.

Absorbing my Surroundings

As we walk around, absorbing our surroundings, we think about Paris and what we will miss.  The art, the food, the atmosphere……all of our plans, all the cool things we would see….we had to mourn that because we knew, we were “stuck” in Holland.  Don’t get me wrong, Holland is phenomenally gorgeous, it is just where I wanted to be.  I don’t mind a visit, but why must we live there.  We had to mourn not seeing our family, our home, American food, the freedoms we had in America.  There was just a lot to process.

Once our mourning time was done and we settled in to this new life….this new place with all these new sites, new foods, noises, smells.  We began to acclimate to our surroundings and we began to learn about the cultures and the foods.

Holland and Its Beauty

Holland has its own beauty, but it was not what we had originally planned for.  We had to learn to adapt and compensate for the things that we wanted to see in Paris and what we wanted from home.  It wasn’t bad…just different.  It was a change and I’m not one to like change.

I had to learn that I could not “fix” my children…only God could and will do that.  I had to learn to let go of control of what was and begin to love what is.  By mourning, so deeply, the loss of what was going to be a 10-day vacation to Paris, I was losing out on what was surrounding me.

Seeing Things from a Different Perspective

New colors, new foods, new scenery…..I began to love my new home and by loving it, I began to change.  Ironically, I began seeking God more and seeking help for my depression.  Also, I learned that FASD, RAD, Single-Sided Deafness, Opsoclonus Myoclonus Syndrome does not define my children.  Finally, I learned how to love again…I learned how to love my God, my husband, and my children for who they were and not what I “envisioned” them to be.

Be open to change.  Be open to new things.  Stop trying to fix things.  Stop trying to control what you are not meant to control.

Live life and love without abandon.

 

 

Life or Something Like It, Medical Issues

Part 2 Uhm NO

Yesterday, I wrote the FIRST PART to my story…..today, Part 2 Uhm NO continues.

Part 2 Uhm NO

 

Part 2 Uhm NO

Uhm, WHAT??????!!!!!!!!!!!!  Holland?   Uhm, no.  No thank you.   I know nothing and I do not have an itinerary.  Sadly, I do not have a place to stay, I don’t know where to eat, I know nothing.  NOTHING.  I can picture myself asking the stewardess if this is a layover.  How long it will be before we arrive in PARIS, FRANCE.  Then, she says that this is our destination.

Our ticket is one way…..they will be adding our children/pets, onto the plane, over the course of the trip.  This is where we will live out our days until the Lord sees fit to move us somewhere else.  I had planned on staying in France for 10 days, not my life.  I certainly did not plan on LIVING in Holland and what the heck do you mean, you will bring our kids during the flight?????????

When we started creating our family….we had definite plans.

Big Daddy wanted 1 child and I wanted 4.  We compromised on 3.  Our oldest was high strung, motivated, and determined.  She is also super sensitive to bright lights, noises, and does not care for lots of people.  Our second was a pistol.  She was creative, loved animals, told you like it was regardless of if it was appropriate or not.  She has a bit of a lazy streak and wanted things done for her more times than not.  Our third, our only biological son, was an easy baby until he wasn’t.

Noah’s Journey

He was the first to crawl, he babbled, talked, loved eating and then he had his 12 mths shots….life changed.  Maybe that was when we were “packing” to go to Italy.  It was like shades pulled down over his eyes and he stopped talking, he threw lots of fights, he had sensory issues…..it was tough.  Our life was now full of speech therapy, occupational therapy, and physical therapy.  It was hard.  The Lord guided us and helped us and allowed me to have a great deal of soaked in knowledge….and today, you would never know anything was ever wrong.

So…Victoria, we started planning the trip.  Alyssa, we started saving for the trip.  Then, with Noah, we got on that plane and we headed to Paris, France to see all the things we could see on a 10-day trip.

Then….there was God.

As we were flying, God saw fit to allow 2 more kids to join our crew.  These kids were older, than came from severe trauma physically, mentally, and emotionally…amongst other trauma and He thought it’d be a good idea to have Big Daddy and me to raise them.  It was almost like He threw me into the lion’s den as he did with Daniel.  I was totally unprepared.  Realistically, I thought I could love the FASD (Fetal Alcohol Spectrum Disorder), RAD (Reactive Attachment Disorder, Behavioral Issues, Dyslexia, Developmental Delays, Food gorging/hoarding/stealing out of them.  Sadly, I wanted to fix them.  Plain and simple.

While I was “trying” to “fix them”…..God showed up again.

This time, it was a brief detour, on our flight, to Ethiopia.  The trip there was ROUGH.  It was full of turbulence and engine problems.  We thought and we were told we would not make it BUT GOD had other plans.  We made it…..instead of a 24 hr flight, it would take us 15 mths to get from where we were (on a plane headed on vacation to Paris) to Ethiopia because He wanted us to add to our dysfunctional crew.  He was another older child and he had malnutrition brain, some behavioral issues, and we came to find out that he was deaf in one ear…not a little bit hearing impaired but deaf.  Again, I could fix this.  I could continue raising all these kids will “fixing” their issues and problems.  I was content, tired, and overwhelmed but content.

But then……..there was God again.

Several years and tears from our first child to our sixth child…..I was sitting on that plane, wishing to be at our destination so I could have some respite and time to breathe.  God decided to be my breath and to breathe for me…He did this in the form of our seventh child….our Zebra.

I thought the stress of trying to fix my FASD, RAD, ADHD, PTSD, Dyslexia, Learning Disabilities, Deafness, Autistic tendencies, Opsoclonus Myoclonus Syndrome, blah blah blah was going to bring me to my knees…..oh, heck no….this little dude came into my life and turned it upside down.  He has taught me so much and he has given me such joy but he also went from a normal little boy to a medically fragile kid in about 4 hrs.  Please hear me say…..I would not change a thing with this little guy.  He brings us such joy and happiness….even in the midst of uncertainty with his health.

Part 3:  Welcome Home.
Life or Something Like It, Medical Issues

Welcome to Holland

 

Welcome to Holland is a poem that I have always loved.  It is a different way to look at things when life does not go as planned.  There are 4 of my 7 children who have special needs.  We have dealt with Dyslexia, learning disabilities, Fetal Alcohol Syndrome, Reactive Attachment Disorder, Sensorineural Hearing Loss, Generalized Epilepsy, Functional Neurological Disorder, and Opsoclonus Myoclonus Syndrome.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

Planning a Trip to Italy

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

Discovering You are in Holland

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved.

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Let Us Pretend for a Moment

Let Us Pretend for a MomentLet Us Pretend for a Moment that you were a mom of an elementary school aged boy.  You get all excited because it is a local church’s Bible School and this boy wants to go.  Let’s say you forgot about VBS, so no one went on Monday, yet you remember on Tuesday and all goes well.  Let’s say again, that you took said the boy on Wednesday and when you went to pick said boy up, you quietly observe his interaction with his teacher, whom you do not know.

Again, pretending.

As you quietly observe, you see your son “flip” his teacher the bird.  Not once, not twice, but three times.

Possibly, because we are pretending here, you feel your blood pressure rising and you *try* to get to your son as quickly as possible….all the while, you are feeling like you are in the Matrix and you are moving in slow motion.  As you are moving, your eyes are on his “bird” finger and it, in slow motion, continues to move up and down at the teacher while the other children look on in horror.  HORROR.

As your slow-motion body gets to your child, you see that “look” on the teacher’s face.  That look that says “oh, my, goodness….this kid is driving me nuts and I have to put a happy face on because this child’s mother is standing before me and I have to seem like I am enjoying his presence when I really just want her to take this child home and never return.”  Seriously, anyone who has worked with kids knows that look because we have all given it.  Now, the tables are turned and it is *your* child (pretending…glorified mind).

Once home, you ask said child why they would continually stick out their middle finger when the teacher told them that that was not appropriate behavior and that he really must stop.

Child’s answer?  “I don’t know.”

What would you do?

What would I do, you ask?  I would call my mama and ask her for advice. Then, I would drink a large coke.