Holland vs. Italy: the tale of parenting a special needs child

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......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."
"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 guide books. 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."

Mike and I went to the first night of a six week seminar for parents who have children with emotional, behavioral and/or mental illness issues.  It is put on by NAMI (National Alliance on Mental Illness).  This story was the first thing that was shared.  It struck me in a way I didn't expect.

While listening to this, I heard it from the perspective of the first adoptive parents of children who have gone through a disruption.  They had an idea of what international adoption would look like, feel like and be like.  As it turned out, the true story is that it isn't all a "dream come true".  It's hard.  Parenting a child from a hard place is very hard.  It's exhausting with little to no pay off on your end as the parent.  I'm lucky that my children all have very minor attachment issues and are able to form a loving relationship with me, but a lot of adoptive parents are not so lucky.

The two disruption situations we have been through were vastly different.  The one commonality is that both families also had biological children in the home.  This is not something that I can relate to, since we chose not to have any bio kids in our family, but I have often wondered if adoptive parents who already have bio kids when they adopt expect the feelings they have for their bio kids to be exactly the same for their adopted child.  Maybe that's their Italy.  I'm not saying that that scenario isn't possible, but it has to be different.

A bio kid comes out of the womb knowing no one but you.  They need you, they learn unconditional love from you.  They are protected by you.  When you adopt a child, especially when it's not a newborn, you receive that child along with all of their trauma.  You have to do the work to bond to that child.  It is not automatic.  It's not easy.  You have to learn to love one another.  Our children spend a lot of intentional time on our laps, we fed them at the dinner table when they were 4 & 5 years old.  We look for any kind of interaction we can in order to mimic the kind of bonding that a newborn and a mother would share.

It takes a very long time, it doesn't always work and it can be heartbreaking.  If you have bio kids as well I can understand how this would put so much stress on your relationships with each of them as well as stress on the family as a whole.  This is why I can empathize with families who choose to disrupt.  Even though I do not understand it in most instances, I always try not to judge them.  That has to be one of the hardest decisions of someone's life.  I have to assume that they would only go forward with the disruption if they believed in their heart that it was in the best interest of the child.  This is where my faith in God comes in.  God has plans for all of our lives, and sometimes those plans are messy, but if we trust Him and listen to Him the end result will be a blessing that we could have ever imagined.

Maybe most people like Italy.  It's pretty there, the food is decadent, it's gorgeous and the weather is great.  I happen to love Holland.  I have always lived a bit off of the beaten path and had to be the one swimming upstream, against the current.  Most people can have Italy.  I'll hang out in Holland, where it may be messy, but it's a beautiful mess.

Jazzercize...not for the faint of heart

I went to Jazzercize tonight for the very first time.  Here are my observations.

First of all, my mom went to Jazzercize, like 20 years ago.  I remember being in the childcare with my buddy Elizabeth.  Am I old enough to go to Jazzercize?  That's for moms, right?  I mean, I know I'm technically a mom, but I'm not a MOM!  I know that I am 32 years old physically, but I still consider my mental age to be that of a 16 year old, and I think I always will.  Also, I danced my entire life, there is no way this is going to be challenging enough for me.

This was my expectation of Jazzercise

Roxanne kicked my butt tonight.  Roxanne, who was at least 10 years older than me, kicked my butt.  During the first song, I got cocky.  "I knew it", I thought, "this is too easy."  "A lot of these women are older than me, and there's no way that if they can do this that it will challenge me."  Well, those ladies showed me.  By the end of the 2nd song I needed a drink and was starting to sweat.  By the end of the 3rd song I was short of breath and finding it hard to do it all full out.

I'll tell you who wasn't having a hard time...those older ladies in front of me!!  Damn!  They hardly ever even stopped for a drink, and here I am trying to make it through an entire song before I run to get a drink and steal away a 5 second break, while pretending that I don't need a break.  I'm young, I shouldn't need a break!

Then we started using weights.  I chose my weights at the beginning of the session and I chose 5lb weights.  I knew within the first 5 seconds that 5lbs was too much, but it wasn't too much for those little ladies in front of me.  So, you better believe that I toughed it out.  I may not be able to even grasp a pencil tomorrow, but I toughed it out.

I found myself checking the clock to see how much longer this would go on, how much longer would I have to pretend that I was young and in shape.  I couldn't keep the ruse up much longer.  I wanted to punch Roxanne.  She was making it look so easy, hardly even sweating, and having fun!

So folks, when I am in bed all day tomorrow because I can't walk, just remember that Jazzercize is no joke.  It's a hard work out, a fun work out, but it's hard!  I want to give mad props to all of the wonderful women in my life who swear by it and I want to apologize for my preconceived notions.

I will go back, just as soon as I can walk.

Praising God for a Splinter and Busted Knee

We have had 2 experiences in the last 2 weeks that have been true blessings in disguise.  

I’m sure you would be rejoicing and praising God for a trip to the ER and a splinter lodged in your child’s leg…right?  Stay with me here.

Only about a month after being home with us, Celia was at my mother in law’s house with us and thought it looked like fun to wrap her legs around Grammy’s wood banister and swing around.  This stunt resulted in a big splinter in her thigh.  The main problem with this was that she DID NOT trust us enough to let us remove it.  I was told that if we let her soak in a hot tub, put baking soda on it, (along with many other tips) it would work itself out.  I couldn’t afford to traumatize her in this crucial stage of our bonding, so against my better judgment, I left it in.

You have probably caught on by now that our lives are crazy.  Two weeks passed and I had forgotten about that splinter, she only brought it up after those 2 weeks had passed.  Now it hurt and the skin had healed over top of it.  CRAP!  I went online and searched for a solution that wouldn’t involve breaking the skin, but it wasn’t happening. 

 I had to weigh my options.  The only time we had taken her to the doctor she was terrified.  It was clear that a visit to the doctor’s office was some kind of a trigger for her, so that was out.  I couldn’t risk her fears of the doctor’s office being verified.  I put on my big girl panties, sat her on the kitchen table, put some orajel on the spot and went to work.  Mike sat next to her on one side with her sisters both on the other side.  Not once did we have to hold her down, she trusted me!  I kept taking breaks and kissing her and trying to calm her fears and tears with my words.  I finally made progress and pulled out the biggest splinter I had ever seen in my life!  

 

We all celebrated by eating ice cream (cause let’s be honest, ice cream makes everything better).  I was on a high that she LET me do that!  She didn’t even squirm.  When she said stop, I stopped.  When she was scared she held Mike’s hand.  Her sisters used words of encouragement and rubbed her back.  We not only got that huge splinter out, but we bonded through it!  It was beautiful!

Fast forward 2 weeks.  Apparently Caroline decided that it was time for her to get some one on one time (just kidding) so she bit it while playing tag and jacked up her knee pretty good.  I am one of those “just brush it off” kind of moms, but even I had to admit that it was bad.  So we packed up the healthy, grain free dinner that was nearly finished being prepared, went through the drive through at McDonald’s and headed to the ER.

The other 2 went to their Grammy’s house, so it was just Caroline and me, and I must admit, we had fun.  Yes, you heard that right, we had fun at the ER.  She enjoyed being in a wheelchair.  She got to watch Sam & Kat on Nickelodeon, which she isn’t allowed to watch at home on account of it being the most annoying show on television.  Plus we both agreed that she probably had the cutest doctor in the hospital.  

 

All was good though, the x-ray showed no break.  It was just a bad bruise.  This was only 2 days ago now and since then she has had a couple of episodes where she was in quite a bit of pain.  I’m still not sure if she’s in that much pain or if she has realized that she can get my full and undivided attention, but I have to assume the former.  She is learning that she is my priority, that if something is wrong with her I will drop everything to take care of her.  It has been a wonderful bonding experience for both of us.

When you have children from hard places, children who have been through a kind of hell that you or I could never imagine, the most important, and difficult, value to obtain is trust.  It takes years to undo the harm that other people have done to their young psyches.  It is for this reason I am grateful that God provides us opportunities like these to earn our children’s trust.  If you are an adoptive mama, look for opportunities to use unfortunate or unpleasant situations as a chance to bond.  Silver lining.

There Must be a Miscommunication...

I have seen a lot of posts on Facebook lately about that fateful expression “God won’t give you more than you can handle.”  I hate that phrase.  I hate it with all that’s in my soul.  

I believed it for years.  I was diagnosed with a chronic, painful medical condition at age 19.  I spent years convincing myself that God must really have some serious faith in how much I could handle and I used that phrase to empower myself.  

Then, I got married…young.  “Marriage is hard!” people tried to tell me.  I remember thinking to myself “Well YOUR husband must just be a jerk.  My husband is perfect!”  Guess what?!!  MARRIAGE IS HARD!  We were both going through graduate school, living paycheck to paycheck trying to work and go to school full time.  This is when I began to suspect that, if God really does only give you what you can handle, then there must be a miscommunication somewhere.  He must have me confused with someone else.

The next phase of my life is when I became convinced that not only WILL God give you more than  you can handle, and he will give you sooooo much more that it forces you to rely on Him, (or start drinking heavily!).   We started out on the journey of adoption.  At first it was all rainbows and butterflies.  Sure, the paperwork was endless, people didn’t quite understand why we were taking this path, we didn’t quite receive the overwhelming joyful reaction we had hoped for from those closest to us and there were tears.  All in all though, it was good. Stressful, but good.

Once we got the call about the twins though, the bottom dropped out.  We took over the disrupted adoption of twin 4 year olds who didn’t speak any English, were in diapers, had only been in the country for 6 weeks and didn’t know us from Adam.  They were terrified, traumatized, and behaved like wild animals…no exaggeration.  

The first night, once they finally went to sleep, I remember turning to Mike and asking him “Can we really do this?  What have we gotten ourselves into?”  I am sure a lot of first time parents can relate to that feeling, especially those of multiples.  

That first year consisted of hardly leaving the house.  There were tantrums and rages that lasted hours.  We became very familiar with the art of physical restraint, in fact that became our method of bonding because it was happening every day.  The worst part about it was that we couldn’t really get to the core of why they were so angry, because of the language barrier.

If you know our adoption story, then you understand how we knew that God had these children planned for us.  The confusing part was HOW IN THE WORLD DID HE THINK WE COULD DO THIS??  Yes, I have my degrees in early childhood education and developmental psychology, but no class can prepare you for this.  This was beyond.  Every book we read (and we read a lot of them) said we were doing everything right.  You may think this would be comforting for us, but instead it was infuriating.  If we were doing everything right, then why were they acting like this?

The independent, control freak in me waived the white flag.  I had to surrender.  I had to admit I couldn’t do this alone.  If God gave me these girls, then He was going to have to help me through this, but that meant me letting Him.  That meant me leaning on Him, praying, reading His word and living it through my life.  I had to stop caring or listening to what everyone else was telling me to do and listen to Him.  

Guess what?  It worked! :)  Slowly, my anxiety waned, the girls began trusting us, and our marriage was actually strengthened through this very tough time.  I began to see God working in our lives in incredible ways.  I learned to trust Him and His timing in my life.  It took time, and it’s still a work in progress.

If you are in a place in your life where you don’t understand why, why would God do this to you?  Know this: He will use this to draw you closer to Him, you just have to let Him.  Throw up your hands, throw in the white flag and surrender.  You can’t do it alone.

Christmas Break...I'm so over you!

The kids have been home with me for 20 days.  TWENTY DAYS.  I feel like I am writing this from beind enemy lines, in the trenches of motherhood.  It's not been pretty, although I've been told that when I look back on it...years from now, it will be funny, so here goes.

It wasn't just that it has been 20 days of Christmas break.  These past 20 days in particular have included the days with the most sugar and chaos of any other time of the year, along with the least amount of routine.  For any child this combination is a recipe for disaster, but for kids from hard places, we are talking nuclear meltdown.

Poor Celia was so confused.  First of all, she had only been in our family for 6 weeks at Christmas and if you've ever met my family, we are a lot.  A lot to handle, a lot to get used to and a lot to take in, just a lot.  Secondly this child has never celebrated Christmas the way we do.  She asked why we were hanging those socks on the fireplace.  Her other family didn't do Santa and stockings, so who knows what else they didn't do.  I must say that on Christmas day she did so well and wasn't at all overwhelmed. In fact all of the girls did great on Christmas day, when Christmas was over it was a whole different story.

This happened on December 26th.

This happened after she started crying at 8am that her shoes wouldn't fit over her "funny pajamas" aka footie pajamas, so I told her to take them off.  I meant that she should get dressed, but this worked too I guess.  That smile was forced, my friends, through a lot of tears.  This child was worn out from Christmas but she really wanted to roller skate at 8am.  Also, note that her necklace plays Ariel's voice from Little Mermaid when the sea witch takes it...over and over...and over again.  Sadly it's been "lost" for the last week.

That night my sister and her family came and stayed with us for a few days.  While it was super fun I found out that while 3 children can make a pretty serious mess, 5 children can make a tornado level mess.  Once they left we worked on getting the house back in order.  Right after I had vacuumed the girls asked to eat some popcorn that they had received for Christmas.  I said "Yes, but if you make a mess I will destroy you." I'm not exaggerating when I tell you that this next photo happened within 2 seconds of me finishing that statement...and then Charlotte was destroyed.

I am trying to learn to laugh at these things in the moment and to take a picture because people think I make this stuff up!  I couldn't!  I'm not that creative!

Another great idea I had was to switch up Caroline's medication over break.  I knew it would cause some behavior issues and I wanted her to be able to work through those at home rather than at school.  That was dumb.  Basically the other medication got out of her system before the new stuff could build up so we had a few days where I thought I was going to have to resort to drinking heavily.  One day we went out to get in the car and she had left a light on in my car overnight, so my battery was dead.  While Mike and I were outside for, at most, 8 minutes, she decided to take a wooden wand and hit a light on the Christmas tree.  I came in and saw broken blue glass all over the floor.  Assuming it was an accident I asked what happened.  What I got was that basically she meant to break it and didn't know why she did it.  What the heck do I do with that people?!  None of the parenting books tell you about how to deal with this, I've checked!  It's so hard to have patience with a child who doesn't understand why she makes these choices.

In the midst of all of this madness, it was time to celebrate Ethiopian Christmas. This was fun because it was Celia's first time going to the Ethiopian restaurant and meeting a bunch of other kids who looked like her.  I think it was also her first time trying Ethiopian food and she loved it, all of it!













Thank God that Caroline's meds finally started kicking in and I got to see some of her joy and contentment come back into her eyes. She was so excited to go back to school.  My kids crave routine and predictability.

Then snowpacalypse 2014 happened.  They couldn't play outside.  They couldn't go to school.  It was cancelled 3 days in a row.  THREE DAYS IN A ROW.

I decided to try to be the fun mom and let all three sisters from different misters sleep on the floor together when we found out about the snowday the night before.  They loved me that night, went to bed with all of their little dolls, and I scored some points for sure.  How did they repay me?  They were up and LOUD by 6:50am.  On their day off.  I have learned my lesson.  I will no longer try to be fun.

This morning, 2 out of the three of them were in tears before 8am, before anyone even went downstairs!  Charlotte "handed a book" to Caroline by throwing it at her head and it left a nice goose egg.  Celia had an accident in her bed and while Charlotte was trying to help her take her sheets off Celia began wailing because she didn't want to take her Hello Kitty sheets off of her bed.  This is like trying to negotiate with terrorists at this point, three little lady terrorists.  They don't understand logic, nor do they have any desire to.

I realize how blessed I am that my family lives close and are brave enough to take the three of them for a couple of hours at a time so I could get some work done.  When I picked the girls up today from my mother in law's house she looked like she'd been through a war.  We're tired.  These kids NEED to get back in their routine.  The past 20 days have reminded me why, although I have my teaching license, I should NEVER homeschool my children.

Someone asked me tonight if the girls have school tomorrow.  I said "I hope they do, because they are getting dressed and I am dropping them off at the school doors at 8:45am.  No matter what."