Large Family Happenings, Life or Something Like It

6 Month School Update

6 Month School Update6 Month School Update

It has been a bit over but here is our 6 Month School Update.  As you may or may not know, I am a former homeschooler.  I homeschooled my children for about 20 years.  Successfully, I have graduated with 4 children.  For my younger 3 kids, I decided to try public school.

Myriad of Reasons

I love homeschooling, for the most part.  It has been a bit harder because I do have 4 special needs children, so it was also not the easiest.  Our decision to put them in school was a quick and swift decision.

I knew when I was done, I would be done.  Honestly, I was just overdone.  My exhaustion level had reached an all-time high.  When you have a child who is medically fragile, life changes.  Our traveling had hit another level and I wasn’t doing anyone any justice by being 1/2 in.  Their education is far too important for me to let it slide by.

Ben and Bug

They are well.  Almost ready to celebrate 2 years of marriage.  They are both working hard and learning so much.  Bug is moving through some things and she has made some brave decisions.  I’m incredibly proud of her.

Peach

She just started the first day of her last semester of college.  **Cue the angels singing.**  I have no idea why it seems she has been in college for 549 years, but it sure has.  She has done well.  There is that excitement mixed in with the “oh crap” mixed in with the thrill of fixing to truly start her “adult” life!  She is also working and loving her dog.  I’m incredibly proud of her.

Gigi

Thankfully, she has finished high school.  Good gracious that was a chore for both of us. She was about 6 mths late in doing so, but she worked 7 days a week to get finished.  A good friend hired her to work and that is going well.  She has MASTERED getting ANY types of stains out of clothes and she is really good with kids.  There is still a lot to figure out, but we are taking one step at a time. I’m incredibly proud of her.

Boo

He has started the last semester of his freshman year of college.  That seems unreal to me.  He is working part-time and helping out at home.  Still, though, uncertain about his major, we have ruled things out and then put things up closer to the front.  He will figure it out.  There is a little female that he has been spending time with…I just can’t talk about that right now.  I’m incredibly proud of him.

Catfish

For a kid with SEVERE dyslexia and FASD…he is rocking school!  He has had great grades and is learning to navigate life.  There have been some social issues that we have had to work through.  Mostly learning who is safe and who isn’t.  How to work around bullies.  Oh, and have there been bullies.  Bullies are not limited to children, ya know.  Adults bully too and we have certainly dealt with that.  I am not well-liked, at the school, by some people but I really do not care.  I’m incredibly proud of him.

Jude

He has excelled, as well.  Academically and with sports.  He is so much fun to watch when he is playing ball.  We have, again, dealt with bullies.  Also, sadly, lots and lots of racism.  Racism now is more underhanded and calculating.  Methodical and intentional.  There isn’t the outward act of separating out things just the subtle undertone.  It has been so sad to see and to deal with.  Again, I’m not well-liked by many.  I really do not care though.  I’m incredibly proud of him.

Kid

He has made great strides in school and in his therapies.  For a little guy, he is in a different therapy 5 days a week.  He has OT, PT, SLP, Vision, and Horse therapy (the best one of them all)!  One major accomplishment is he has learned to spell and write his name.  The thrill is unlike anything I’ve ever had!  Our hardest thing has been treatment monthly, steroids monthly, and keeping him well.  He has had 2 flare-ups since starting school.  One attacked his hands and legs.  The other attacked his hands and his speech.  I’m incredibly proud of him!

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Trying Differently Rather Than Harder

Trying Differently Rather Than Harder

Trying Differently Rather Than Harder

Trying Differently Rather Than Harder is a book is by Diane Malbin, M.S.W.  I have had this book since 2016.  There are times I wish my brain would soak up and retain all the things that I have read.  This is one of those books that I need to retain about 98% of what it says.

FASD

Fetal Alcohol Spectrum Disorder (FASD) is COMPLETELY preventable.  First and foremost, it is NEVER okay to drink while pregnant.  I would go as so far as to say do not drink EVER during your childbearing years if you are sexually active.  No birth control works 100% of the time unless of course, it is ABSTINENCE!

I do not make those statements lightly and I am fully aware that I will get flack for it.  Frankly, I don’t give a damn about your flack.  Why you may ask?  Because I am raising 2 humans that didn’t ask for the cards they were dealt in life.

Types of FASD

There is Fetal Alcohol Spectrum Disorder (what my kids have), Fetal Alcohol Syndrome, Fetal Alcohol Effects, Alcohol-Related Neurodevelopmental Disorder, Alcohol-Related Birth Defects, and Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure.

This begins at conception, people.  It can also carry through sperm, so there’s that little tidbit.  I was talking tonight, to a friend, about this book.  She asked I told her what it was about.  This young girl, 16 or 17 maybe, overheard our conversation and she said “I thought it was safe to drink wine while you were pregnant.”

Guarantee, I scared the crap out of this girl.  Unintentionally.  My friend and I looked at each other and then at her.  We both raised our voices and said “NO!”  It is NEVER safe to drink while pregnant.  EVER.

This Sweet Girl

She was genuine in her questions.  Truly, she thought it was okay.  I explained to her the problems/issues/medical side of the dangers of drinking.  She was thoughtful, curious, and asked very appropriate questions.  Then she smiled and said “You taught me something today.”  I kindly replied with “remain abstinent and pass the dangers of this onto your friends.”

Their Story

I will not go into their stories because it is a violation of their privacy.  However, the things we deal with, on a daily basis, are hard.  We deal with memory loss, no cause/effect, misdiagnosis, the physicality of FASD, learning disabilities, executive functioning issues, sensory, speech, receptive/expressive skills, simple tasks, confabulation, and so much more.

What I see, in a “typical” child as being defiant, lazy, or just finding their way is different in a child with FASD.  I am struggling.  There is no reason to lie.  The last 5 years have been HARD.  I don’t mean a little bit hard.  Seriously, I mean H.A.R.D.

Picking It Back Up

As I was looking for another book to read, I saw this on my shelf.  It had a layer of dust and lots of coke stains (and tears).  As I was reading it again, my eyes were open to the difficulties that we have been facing with one of our children.

I am *so* tired.  This child is in a stage of stealing and has been for a few years.  Sadly, it has amped up to an alarming level.  Yet, this child can justify it because the “intentions” were to ask but the reality is “there just wasn’t time to ask.”

Hurts my soul.  I called my sister and said “there is no amount of punishment or discipline that affects this child.  I don’t know what more I can do.”  In the preface of this book, in the second paragraph, it says, “A common misperception that “nothing works” surrounds people with FASD.”

Cue…this is the book I need to read at this moment.

Co-Morbid

So many times, these kids are labeled as ADHD, ADD, OCD, ODD, DMDD, Bipolar, etc.  When in reality, they have a form of FASD yet since they don’t have the “classic” facial features, they are misdiagnosed.  These kids may have been adopted and don’t know the history.  Sadly, out of shame, a mom doesn’t tell the whole truth about drinking or the father drinking some.

There is no hard evidence to show how much drinking is too much.  How scary is that?  One time can change the course of a child’s (and parent’s) life.  These kids are medicated, sometimes heavily, and then we wonder why the meds don’t work.

Cause ya can’t fix BRAIN DAMAGE.  That’s why!  See, that pisses me off.  A doctor will medicate for anything.  You can’t sit still, ADD, here is a pill.  Struggling with depression, here is an anti-depressant.  Anxiety?  Here’s a pill.  Can’t sleep?  Oh, here’s another pill.  This cycle is vicious.  Unless you are trained in knowing the signs or look deeper, if the facial features or history is not there…they overlook the obvious.

Not Here to Shame

I am not here to shame moms.  Really, I’m not.  I want to educate, bring awareness to doctors, schools, and therapists.  Not gonna lie…due to my EXTREME frustration with one child (and the fact this child was getting violent), I had to send her to another place for several months.

It was not the answer but it gave my family time to heal and this child the space needed to realize that violence is not the answer.  We were (are) SOLIDLY looking at a facility for another child, again, no shame, because behaviors at home are reaching high peaks.

No Easy Answer

There is no easy answer to the questions I have, daily.  I guess the only easy solution is to not drink while pregnant.  For the love, not while you are breastfeeding, and if you are super extra do NOT put it in a child’s bottle.  Yes, that is done all too often.

This Book

This book is not the be-all and end-all in FASD.  It does give a different perspective that I needed to see, at this point in my life.  I will reread it tomorrow and probably the next day.  Also, the school needs a copy.  They have zero clues as to the effects of alcohol on a child.  Oh, that is for another day to blog about because I am still fired up.

Pay Attention

For now, I will encourage you to pay attention.  If a behavior is a constant pattern, it is likely not defiance…it is something deeper.  This book can be geared towards those with neurological deficits, as well, without FASD.

There will not always be facial features, be aware of that.  Kids from hard places that are adopted…learn as much as you can.  I’m not saying do not bring them into your home.  I am saying, however, to become a student.  Watch.  Get them and you into therapy.  Read, learn, implement what you learn.

My Kids

They had a crap beginning.  I’ve always been honest with them about their diagnosis.  There is no reason for them to just think they are stupid because they aren’t stupid.  My kids have areas where they are BRILLIANT.  Then, there are areas that they struggle in deeply.

They will have a bright future.  I will do all that I can, provide what I can get the services they need to ensure that they have every opportunity that anyone else has.  It is hard.  Every day is hard.  I have had to make some hard decisions and I will continue to do so.  Though, I will ignore the judgment of others.  I’m doing the best that I can do.  Until you jump around in my skin or the skin of my children and walk around a mile…shut your freaking pie hole.

Can You Tell?

Can you tell I have faced intense judgment?  Honestly, can you tell my children have been made fun of and judged?  Can you tell my kids have been picked on and bullied by kids AND adults?

Mama may be tired but I am still fierce.

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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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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.

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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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Living in Reality Versus Fantasy

Living in Reality Versus FantasyLiving in Reality Versus Fantasy

Living in Reality Versus Fantasy is a hard thing to do with most people.  The other night, when I was cooking supper, G came in the kitchen with 2 pages worth of notes that she wanted to discuss.  When she does this….it is exhausting because it is difficult to explain things to her.  She does not process things the way a “normal legged” person would process them.  If you wonder what that statement means, you can go HERE and I have posted on our conversation.

With her FASD, she either A) do not understand what I’m saying B) doesn’t think it applies to her C) doesn’t realize the processes that have to occur C) gets her feelings REALLY hurt.  I don’t, personally, like any of those options.  We have been talking a lot about her future past high school.  She is almost 17 and she is *just* heading into 10th grade, so she is extremely behind.  She caught up, some, while at MILITARY SCHOOL, but still not enough to go into the 10th grade.  Now, this past semester, she has rocked it and I think in January we can advance.

Her Natural Talents and Abilities

G has some natural talents.  She is very personable and can talk to anyone.  Lately, she has been honing her craft in hair, nails, and makeup.  Also, she is good with kids (for the most part) and is tenacious.  She had, at one point, decided to go to cosmetology school.  That would eliminate the need for taking the ACT and she could be successful, have a career, and be able to live on her own (with some guidance).  The last little bit, though, she has declared her intention of pursuing criminal justice.  The things she is interested in (Judge, Federal Marshall, Forensics, etc) is just not in her wheelhouse.

Living in Reality Vs. Fantasy

I did not and do not want to discourage her in any way, but I also do not want her to live in this fantasy world of hers.  She bases all her “knowledge” off of movies, tv shows, and books….not real life and certainly not what is required to accomplish these things.  So, as she named off her choices, I told her that she could go to any college, in KY, for free until she gets her bachelor’s degree….that that would not be a problem BUT in order to get into a 4 yr school (or above), she would have to take the ACT.  That did not register.  Now, for our local trade school or 2 yr school, she can take a compass test.  This type of test just lets the administrators know if she needs to be in more remedial classes or regular classes.  We know we have the option to have an aide (which she DOES NOT want) and the tutoring is free.  I explained to her all the things she could do or would be good at…none of those things mattered because she is so tunnel-visioned that all she can see is a field in Forensics.

Explanation of Reality

In an effort to help her understand, I pulled up an ACT prep site.  I read off the simple grammar questions (what is a colon, what is an apostrophe, what is a pronoun) and she did not know any of the answers.  She was so sad after I went through a few questions and she did not have the answers.  I explained what the ACT test was versus the Compass test and that one had to have a certain score and one was just a placement test.  This did not go over well….so she retreated to her room.  What I did not realize was was that she was in her room, crying.

The Dams Burst Open

I called her back in the dining room to see what the problem was.  She burst open with sadness and anger at her birth mom for drinking while she was pregnant.   Now, G was “reaping” the consequences of it.  I let her go on and I let her cry.  Finally, I answered her questions and then I took the opportunity to talk about crutches.  I told her that I would let her cry for about 5 minutes and grieve the choices her mom made.  In the end, though, she needed to go and wash her face.

Dealing with the Choices of a Birth mom

I explained that she was not going to use her biological mom’s poor choices to dictate her life.  That God gave her things that are easy for her (hair and good with kids).  She is genuinely talented and could be really good if she allowed herself.  Also, I gave her options in the medical field that she could absolutely do and be great at it.

She was not going to use her FASD as a “poor pitiful me” person, but she was going to count it as a strength.  Just because she can’t do something like being a Federal Marshall, doesn’t mean she can’t have a fulfilling and successful life.  I told her about some of my friends who owned their own business and how much they love their job and are so good at it.

Things that Can Help

I told her that there was no shame in having an aide or extra tutoring because that was going to help her go even further without the stresses that college can sometimes bring.  That by looking at her, you can’t even tell that anything is wrong with her, that she can be a success but she has to throw away the crutches, forgive her biological mom and then move on…..there is no reason to run the race of life looking backward.  We only get one shot at life….there are no dress rehearsals.  I asked her if she wanted me to set the timer for her 5-minute pity party and she said that she didn’t need it.  She asked for some help in researching and that is something that we can and will do.

For now, she is at peace.  The enemy will not dictate her life…God has her.  He has a mighty plan for her.  I just get the privilege to sit back and watch from the sidelines.

What is your crutch?
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One Leg Shorter Than the Other Leg

One Leg Shorter Than the Other LegOne Leg Shorter Than the Other Leg is an analogy that I used as I was cooking supper.  G was asking me if I knew of a tattoo cream that could fade unwanted tattoos.  I said yes, but I doubted if they worked.  Most people get them lasered off and that is WAY more painful (so I’ve heard) than actually getting the tattoo.  Then she proceeded to tell me ALL the tattoos she was planning.  I sat, listened, and cooked.  She talked some more.

Tattoos

I am not against tattoos…I have 3 and I’m planning a 4th.  My first tattoo is my life verse.  Isaiah 61:3.  My second is a daisy that my kids each drew a petal and they colored it in with their favorite color.  Bart’s initial is on the bottom.  My third tattoo is Ruth 1:16 in Hebrew because that was the verse that came to me during one of the most difficult times in my marriage.

I always say, by looking at this, it remembers me to stay married LOL.  My fourth will be the symbol for faith, hope, and love with a semicolon.  I put A LOT of time, though, and design into anything I’m going to put on my body.  Flippant is something I am not.  I was over 40 when I got my first one…..so I’m not against them.

Lack of Wisdom in Choices

What I am against is just randomly choosing odd things that have no meaning, no purpose, not even a good design or misspelled words….G wants barbed wire around her wrist.  Barbed Wire.  There are some other insanely ridiculous things she wants.  I have no doubt she will, one day, rather spend her money on a tattoo than food or shelter.  That is just how her brain works.  She also does not feel pain, at all….not even when she cut her toe-off.  She does not feel it.

Good and Bad Choices

I took the opportunity to try to talk to her about choices and her decision-making skills.  This was a hard conversation because I did not want to cause her to have bad memories, which yields bad behaviors.  I did not want her to think I have given up on her because I have not.  It is just tough.

FASD

I found this website The Lifelong Effects of Fetal Alcohol Syndrome Good Parenting Is Not Enough that was written by Deborah Hage.  I scanned through this document, all the while nodding my head.  Then, I asked G to get some paper and a pencil.  She read the article and wrote down what her thoughts were.  Next, she listed what were similar characteristics that she had.  She did what I asked, though 1/2 through, she said she really did not understand what she was reading.  That did not surprise me, so I sat down with her and I broke it down for her.

Normal Legs versus Abnormal Legs

I drew her a stick figure of a person with normal legs…then I drew a stick picture of a person with one normal leg and one that was about 3 inches shorter than the other leg.  I explained to her that I had 2 legs and she had 2 legs.  We could both walk…one walks evenly and one walks sort of wonky.  This is where I drew her brain.  I showed her pictures of brains that were affected with FASD.  They are both brains. They both function.  One brain is regular size and one brain is smaller.  That is due to things that happened that were out of her control.

How am I Walking?

This is where the stick figures come into play.  When she starts thinking about something (walking wonky), ie a boy that shows interest in her (just an example)….all she sees is he loves me he loves me he loves me.  What I see (walking with 2 normal legs) is that he SAYS in love with her, but he is daily beating her, doing drugs, cheating, drinking, etc.  She doesn’t see the bad, she hyper focuses on “he loves me he loves me he loves me.”  That made sense to her.

We talked about her love of tattoos.  She hyper-focuses on the fact that she wants to be seen, be noticeable….so she wants all this art all over her person.  What she doesn’t see is the fact that something is misspelled or the tattoo artist is using dirty needles and she ends up getting sick.  This is how the brain of an FASD person works.

Chronological Age Versus Mental Age

We talked about the things on that list, I linked to above…..how she is physically 16, but she does not think like a 16 yr old and she doesn’t “feel” 16.  She realizes she is immature for her age.  Sadly, she does not have a phone or access to electronics (for a reason).  Also, she does not have her license (per her request).  There are days when she feels more like 13 in some areas.  When she is emotional, that age drops down to about 8.  Then, when she is escalated we are in the 3-4 yr old range in her reactions.  This is typical.

Kids from hard places are normally chronologically an age (16), but mentally they are 1/2 that (8), and when things are bad they are 1/2 the 1/2 (4) that age.  I drew that out and we talked about real experiences she had that supported that.  She wants to be “normal”.  She has a desire to do and reacting like a normal 16 yr old you.  Again, back to the stick figures.

Yes, she will ALWAYS have “one leg shorter than the other” and that will never change BUT she can adapt.  She can make concessions….she can put a “lift” in her shoe.  She can ask questions, privately if it is too embarrassing, and have me explain things in a way that she can understand and she can get have a normal response because, together, we come up with that normal response.

Brain Tracks

I believe a brain can be retracked.  I believe that the train in her brain goes in one direction, right now, but with the proper “lifts” in her shoes and her asking questions, that train track can be slightly alternated.  There will be things that we have to do a bit differently.  She needs to be monitored more when she does have a phone (and she will) and when she does have access to the internet (as all my electronic devices have parental controls).  There will be some school subjects where she will be required to read the material, research out what she finds interest in, but have no tests.  She will not get above pre-algebra in math.

She will never take the ACT, but she will get a trade.  The subjects she excels in (reading, writing, history) she will go above and beyond and then some.  She has no desire to get her license but she can get her permit if she so chooses.  She can’t hold a “real” job but she can work for us.  We can leave her alone here for a couple of hours and pay her to watch her little brothers.  This is not something I have ever done for my older kids but this is something that I will do for her because she needs to learn the value of money.  That she needs to work hard, have a bank account, be responsible and make money decisions wisely.

Raising Special Needs Kids

FASD is no joke.  I have 2 kids with it.  One kid, it affects one way and the other kid it affects completely differently.  I do parent them differently because I have too but I will not say “well, you can’t do this because you have brain damage.”  Heck no.  I encourage all my children to try.  If they try 1000 and fail then to never try at all.  Once my kids were officially diagnosed with this, my brain track shifted.  I eased up on myself and I altered my expectations.  We have had very open conversations.

Before military school and diagnosis, she would have a response.  It was bad, she would escalate HUGELY.  I would escalate and it got ugly.  More times than not, I am able to control my responses.  In my head I am thinking “brain damage, she is not 16, she is 8 or 4.  How would I respond to Hunter (he is 3)?”  I simply look at her and say (sometimes through clenched teeth and REALLY close to her face) “Do you need a lift in your shoe?”

She immediately looks at me…usually stops in her tracks…and she listens.  Then, she will go to her room and do her exercises which always cools her jets off.  Finally, she will step outside, I will send her and an older child for a walk.  I will go and wash my face or go to my room.  Within about 15-20, she comes back, apologizes and we talk things out or she is at a place where she will listen to me.

I can’t say this will always be the case, but for now, that is all I have to say.

God is good…..even in the short-legged moments.

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Relaxation A Beginning

Relaxation A BeginningRelaxation A Beginning

Relaxation A Beginning.  I live in the land of stress.  It is not a nice land…..lots of moles, vermin, sewage issues, etc. My Lady fusses at me all the time about my stress level and how much I take on.  I mean, I care for her (I see that more as a privilege).  Also, I have 7 kids.

My Kids

There is one who is trying to find love and a job in her field.  Oh, and one just left love and is heartbroken, as well as going to college.  We have one in military school because of her behavior.  Then there is one who is finding himself as a “man” and beginning to drive.  Also, one with FASD and depression, along with learning disabilities.  Another one is hearing impaired.  Lastly, we have one with Opsoclonus Myoclonus Syndrome (OMS).

A Bit More

I have the counseling I do when I have the time, I have parents who I think/worry about, sibling issues, work issues, Big Daddy’s health stuff…..blah blah blah blah.

The first one, I experienced tonight!  The weather is starting to turn, so it isn’t too hot and it isn’t too cool.  My favorite times of the year.  I love love LOVE to have my windows down when I drive.  To hell with the snot that flings out my nose and hits the child in the seat behind me.  To hell with the bird’s nest that resides in my hair and I cannot get a brush through it.

Exhibit A:

This is what happens when you get a bright idea to be a girl and curl your hair…using LOTS of hair products.  This happens to be the same day that your daughter has therapy and it is one of those glorious cool/warm days when I drove 40 miles to the therapist’s office.

I got out of the car, with my daughter who never said a word.  I walked into a room full of clients who are staring at me.  My first thought was “I am on fire today and I look like a girl and they are all being jealous.”  I smile…I go to sign the register.  The receptionist looks at me and gasps.  I smile and say “yep, I know you never see me looking all nice with my hair curled, so yes…it is still me…just with my hair done.”

She gives me this weird smile.  We sit.  The daughter does her school work and I decide to run to the bathroom…and this is what I found.  This was the result of freshly fixed hair, lots of product, and my obsession with the window being down.  “It’s All About Mary” came to mind.  I about died.  Died.  I just about died.  There was no laying this sucker down.  Short of me sticking my head in the toilet to wet it…..I just decided to embrace it.

I Can’t Stop

As we were driving home from a family movie/dinner night…we rolled the windows down and I just sat there, with my eyes closed and the wind blowing in my face…I was at peace.  I couldn’t hear the children because of the wind in my ears (and hearing loss LOL).  I couldn’t see anything around me because it was dark.  Just glorious wild wind.  I’m glad Big Daddy was driving so I could enjoy the full scope of it all.

Try it sometime…..but carry a brush with ya 🙂

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