Friday, November 2, 2012

Brains, Music, Jackets and Jesus

To my friends and family on the East Coast, and all those who were touched by the storm this week... my love and prayers go out to you, be safe, and stay strong.

Today I begin with a word of testimony...this is the anchor to my story, it is the filter through which I experience and interpret life.  I love Jesus.  I am a messed up, sinful person in need of a Savior.  That Savior is Jesus Christ.  I am thankful for saving grace that Jesus gave to me (and everyone else) through His death on the cross, and His triumph over the grave. 

John 3:16

16 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.

My life with Jesus is beautiful...not perfect, not easy...but beautiful.  My life with Jesus is like a dance.  Sometimes He sweeps me off my feet like we are dancing a waltz.  Other times He has some fun with me and we do a little hoedown...other times He stretches me and challenges me with a little hip-hop or a cha-cha.  And then the invitation can be for a raw display of emotion and pain in a lyrical dance.  Always a dance, sometimes serious and hard to join in, and other times, joyful and a-whole-lot-of-fun.  Sometimes I trip over my own feet, or slip and get hurt...Jesus is always there with an outstretched hand to help me back up.  Unfortunately, there are times when I ignore His lead on the dance floor and let someone or something else take the lead.  Other times, I try to do my own thing, break out in a solo, or even turn and walk off the dance floor altogether.  But, because Jesus loves me, He does not give up on me...He has a way of bringing me back to the dance floor and sweeping me off my feet all over again.

That was the Jesus part.  Now, the brain part.

A couple of weeks ago, we brought Lars to a place called the Brain Balance Center.
http://www.brainbalancecenters.com/
Their approach to helping children with special needs is comprehensive and holistic...a much different approach than what is widely found in special needs care (at least in our experience).  They use an extensive assessment to find the areas of imbalance in your child's brain and then design a program that is specific to your child's needs to help strengthen the areas of weakness.  Using a combination of physical and cognitive (learning) exercises, emphasizing good nutrition and vitamin regimens, they facilitate positive behavioral, emotional, physical, and cognitive growth in your child.  It is brilliant!  This is certainly something I wish I had known about a few years ago!  The information we learned about Lars' brain and how it works was more in depth, and more helpful than anything else we have done to date! 

Lars' imbalance is because of of a weakness on the right-side of his brain.  His left-brain (the part that is like a computer, retains information, and can do math problems in his head at lightening speed) is really kind of amazing!  He has a brilliant, academic mind!  Lars' right-brain is where the wiring goes awry.  When it comes to coordination and emotional intelligence, he is struggling.  In some areas there is a 10-year age difference in the different sides of his brain.  That's a lot!  So herein lies the problem...when one side of your brain is clicking along, taking in information, and doing it's thing and the other side is struggling with basic operations and processes...things get lost in translation....you get STUCK!

As Tim and I were sitting in the follow-up meeting, listening carefully to what Lars' assessor was telling us about how Lars' mind works, it was like a million light bulbs were flashing on all at the same time.  No doctor/therapist had been able to put into perspective the specific challenges Lars faces as he processes life with a brain with autism, anxiety, and OCD, and even more specifically, how it all relates to an imbalance in the two parts of his brain.  There was a plan for Lars, a plan to address the areas of weakness on the right-side of his brain!  Brilliant!  I was hooked...Jesus was sweeping me off my feet into a waltz with this wonderful provision for Lars! 

Then we started talking about the cost.  The music stopped.  It felt like someone was giving us an amazing tool to help Lars...our Lars...specific for Lars...dangling it in front of us...but those pesky dollar signs just got in the way of getting to it.  There are frustrating changes with limits to our health care savings plan that are a direct roadblock to our ability to proceed with this therapy, and the reality of a having multiple children with different needs...college, braces, therapies, activities, did I mention college...

The weightiness of knowing there is something new and concrete to try, but not having the means to do so, then feeling bad about the whole deal (from the fact that we even have to deal with this, to not being able to anything and everything possible to help) was overwhelming...I was still on the dance floor, but I was not happy about the song that was playing...I don't know this dance, Jesus.

In the days that followed, Tim and I discussed every option possible.  And then, the light bulbs came back on...I could use the information we learned from the assessment and do what I could at home, until we can afford to do the full program with Lars.  With the resources they sent home with us, plus the plethora of information available on the Internet, I was feeling pretty good about our ability to proceed with this new plan, and at a fraction of the cost.

So I started reading, and gathering information, and the best part of all...making a new Excel spreadsheet to schedule a little bit everyday to address the areas of weakness in Lars' right-brain.  We added online brain-building activities, visual processing and auditory processing activities, yoga and balance exercises, strength and proprioceptive exercises, expressive language activities (both oral and written), fine-motor and gross-motor planning skills, music listening, and added some new, nutritious (hopefully yummy) gluten-free, dairy free foods to our meal repertoire.  It took many hours, lots of reading, patient planning...and you know how I feel about Excel spreadsheets...and voilĂ !  Jesus and me were doing a hoedown! 

Did you see that...in the list of activities...music!

First a picture of my wall of planning...the yellow and green stripped chart in the top-right of the picture is the new Excel spreadsheet!  Pretty geeky cool, I know!


The music part.  Rewind a few years to my childhood...

When I was a young girl, as I would play the piano, I would see color.  Pretty weird cool...I know.  It was like the air changed color before my eyes, everything would be bathed in beautiful tones of green, or yellow, or brown. It didn't happen all the time, but I began to notice that certain keys (like G major or D-flat major...think sharps and flats) would reveal very distinct colors. I didn't think much of it at the time, I assumed that others experienced the same thing...turns out that the gift of seeing colors with music has a name...Synesthesia.  Guess what?  Synesthesia can be associated with spectrum disorders (autism).  I am not autistic, however, I think we all do/think/say things that could be classified as "on the spectrum."  This thing, this seeing-color-when-I-play-music-thing-that-I-used-to-think-was-a-kinda-weird-kinda-cool-thing, is simply a part of the way God prepared me to have an autistic son.

Fast forward...more about music...this gets even better...

The Brain Balance center sent us home with a book, Disconnected Kids, by Dr. Robert Melillo.  His research is what helped create the Brain Balance centers...great read by the way.  In one section of his book, he addresses the power of sound and color in stimulating the brain.  He gives a list of specific music and their associated colors to help stimulate different sides of the brain.  As I am reading, I am blown away by the thought that something I experienced as a child would help me understand this part of the plan for building up the weaker parts in Lars' brain.  God is pretty awesome like that.  He stretched my understanding of the beautiful way He made made us.  Shall we cha-cha?

So here we are in this current week, except this week is unlike any other week in our family.  The Halloween holiday brings a yearly source of anxiety and OCD provoking issues for Lars.  He has some very unique triggers associated with this time of year...this means a little more anxiety than usual, plus a little more scripting and planning just to get through.  Add in a super-storm named Sandy, with family on the East Coast, plus Tim away on business this week, and you get one stressed out Lars.  Alright, we can handle this...I have my new Excel spreadsheet with lots of great things that will make this all better.  Hint, this is the part where I take the lead in the dance with Jesus...

The jacket part.

Tuesday morning is Lars' morning to walk the dog.  In the last couple of weeks, it has been kind of chilly early in the morning.  He needs to wear his warm winter coat.  PROBLEM!  His new winter coat is now a sensory issue...it doesn't feel right on his arms, it is too tight.  Cue tears and picking at his skin.  I get frustrated.  I spent good money on that coat.  I forgot that it was the day before Halloween, I forgot that I had the news was on in the background with pictures of devastation on the East Coast, I forgot to put myself in his shoes...and I watched him fall apart.  Lars was angry, he was frustrated, he was stubbornly refusing to do ANYTHING (not even the lure of quiet Lego time in his room was enough to pull him out of this funk).  Then it got worse, the OCD kicked in, took over his thoughts, and didn't let go...the things that came out of Lars' mouth were awful.  They scare me, they scare him.  I get mad at the OCD.  It feels like the OCD is in charge of everything sometimes.  I know I shouldn't, but I turned and simply walked away from Jesus on the dance floor.

In these moments, of course seen very clearly in retrospect, I see how much I rely on my own abilities, trust in my own strength, and then wonder why I get so upset when Lars has a bad day.  When I feel like the autism/OCD is in charge, and I let that dictate my day...guess what, I am letting the autism/OCD be in charge.  Sounds silly.  I am not saying that ignoring it, or pretending that it is something more/less than what it is will help, but just acknowledge that it is there and part of the dance too.  It will probably take me longer to let this life-lesson sink in...but in those moments when I am tempted to "walk off the dance floor"...I need to let Jesus lead the dance, just listen to the music, even it it's dark, or I don't know the steps, or I don't feel like dancing. 

It doesn't take long to get back on the dance floor.  Jesus is a great partner like that.  Even in a challenging week, we can dance.  When I spend time with Jesus, whether in prayer, or reading the Bible, or at church, or playing the piano, or simply just being...I can hear Him asking for the next dance.

There was a beautiful moment this week, when I saw Jesus so clearly, standing with His hand outstretched, just waiting for a turn on the dance floor...it came when I was at church getting ready to lead games for our Awana clubs.  Honestly, I was there because I felt like I had to be...it was Halloween night, and I knew Lars was at home knowing it was Halloween, hiding out in his room.  I wanted to be home with Lars...just in case.  At church, in the gym, there is a storage closet where all the equipment is kept, after I gathered what I needed and turned to go back into the gym, this is what I saw...


This verse has been our prayer/promise for Lars for awhile...

Jeremiah 29:11

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Shall we dance...
there is a lot of room on the dance floor...for you...and you...

So as we step-ball-change our way into the next weeks, please be praying for our new efforts in helping Lars.  As a side note, we added another family activity to our schedule...archery.  Thomas wondered out loud as we were signing the paperwork for the class, "Mom and Dad, with the TaeKwonDo and now the archery lessons, I am beginning to wonder if you are training us to be assassins."  Funny guy, that Thomas.  Speaking of Thomas, he is well on his way into his new college experience and excited about his upcoming graduation.  Little brother, Markus, is forever trying to let me give him complete rule in the kitchen so that he can create yet another masterpiece in food! 
Dancing, dancing, dancing...

Saturday, September 22, 2012

The hole that shaped Thomas...and prepared the way for Lars

What a flurry of activity in our house when we realized Thomas was indeed finished with High School and beginning to work on a Bachelors in Math with a Pre-Med add-on...what!?!?  I know, I was shocked as well...and I am the one who has been teaching him.  Thomas did a program called College Prep last year, earning college credit while working on his home school studies.  Because he did well, we knew that he was ready for more...us...not so much.  So, this school year began and we were thrust into a world of getting his transcript in order, getting tests scheduled, talking to admissions offices, and helping Thomas select his college classes...
 
Below is a link to the program that is helping us design Thomas' college degree.  He will be doing a combination of online courses, local college courses (his science/lab classes), and testing using CLEP/DSST.  One of my favorite things about this program is the intentional mentoring.  Thomas was assigned a mentor, who helps plan what comes next in his studies, challenges Thomas to think about the big picture of what comes next in life, and more importantly, prays with and for Thomas.  By the time he is 18 he will have a Bachelor's degree, no college loan debt, and hopefully, a clear understanding of "what he wants to be when he grows up"...pretty great!
 
But what about his high school graduation?  I quickly realized we had fallen into this next step in his academic career without being fully aware of the transition that had taken place somewhere in the last 9 months.  With our new college degree plan in hand, Tim and I decided we needed to take a step back and acknowledge that Thomas had reached a major milestone in his life.  Graduation.  Yep.  Homeschoolers get to do that as well.  I ordered his cap and gown, his diploma, talked with my Dad about officiating the ceremony...and there you go...it's going to be an awesome celebration!
 
Our prayer for Thomas, and the theme of his graduation ceremony...

Philippians 1:9-11 / New Living Translation (NLT)

9 I pray that your love will overflow more and more, and that you will keep on growing in knowledge and understanding. 10 For I want you to understand what really matters, so that you may live pure and blameless lives until the day of Christ’s return. 11 May you always be filled with the fruit of your salvation—the righteous character produced in your life by Jesus Christ[a]—for this will bring much glory and praise to God.
 
Being the kind of girl that loves to plan a good party, I immediately made a to-do list and started working.  I know I want pictures of my sweet Thomas, so I pulled out the old photo albums.  Hard to believe that for the first 5 years of his life, we had no digital camera...just an old-fashioned one with film and everything...

 
I came across this picture and stopped...
 

and cried...

Can you see the hole in his leg?  Looks like something took a big bite out of my sweet baby boy.  I have seen this picture before, but I never really noticed how well it shows that hole...the hole that shaped Thomas into who he is today.


If you don't know the story, here it is.  It was New Years Eve, Thomas was just a few days shy of being 25 months old, and he had a terrible case of the croup.  I called the clinic and asked if they could see Thomas...they could, but at the end of the day, just before closing.  When we got there, it was just Thomas, me, the doctor, and a tech.  Yep, it was croup.  The treatment...steroids.  The doctor gave me a choice between taking an oral, liquid steroid (which he assured me tasted awful and would not be a good choice) and a one-time steroid shot in the leg.  I chose the shot.  Sounded good at the time...

What I didn't know at the time was that the clinic was out of the prescribed steroid, and the doctor made a substitution...problem, he did not check the dosage of the new medicine.  It turns out Thomas was given a steroid shot to treat croup that was 40 times stronger than he needed.  Thomas recovered from his sickness, then we started noticing this weird indentation on his leg...it kept getting bigger and bigger.  Then his leg started to buckle underneath him when he was trying to play and climb around.  Thomas cried a lot, asked to be carried a lot...and we had no idea what was going on.


It is sad to me, how much angst was caused in that clinic over Thomas.  Other doctors in the clinic were not free to discuss with us what had happened...the brave one who was straightforward with us, got into trouble.  Sad.  We had Thomas scheduled to see all sorts of doctors, tests, and therapies...neurologists, plastic surgeons, MRIs, and physical therapists.  When the dust cleared, we understood the extent of his injury.  The fat and muscle had atrophied severely in his quadricep and he had lost much of his muscle tone in the rest of his body.  Lots of work ahead for Thomas...

And he did work hard.  Almost three years of physical therapy.  Later on we added vision therapy to address a weakness in his right eye...not confirmed as a side effect of the overdose, but certainly suspected.  Thomas got to play pirate for almost a year.  Fun...not.


The first miracle to come happened just before Thomas was scheduled to have plastic surgery to correct the hole on his leg.  Tim and I knew that surgery would probably be a part of Thomas' treatment plan, but we felt led to hold off, and pray, and wait.  Within the next month, the hole filled in.  If you looked at Thomas' leg, you would never know that there had been a problem.  The hole had filled in with fluid.  The damage to the muscle has never healed, but the outward appearance is perfect!

Moving on from that point, because playing sports was always going to be painfully challenging for Thomas, he threw himself at his books.  He has an amazing capacity to be a sponge for pretty much anything he reads, hears, or sees.  I believe that because of that hole in Thomas' leg, the thing he could do was be an awesome student...and awesome he is.  Of course I would not wish for this to happen to him...but it did...and because God is good...

Romans 8:28 / New Living Translation (NLT)

28 And we know that God causes everything to work together[a] for the good of those who love God and are called according to his purpose for them.

God has a purpose for Thomas.  A purpose that includes using that wonderful-sponge-of-a-brain to be a light in the world of chemical engineering (his pre-med add-on is not really for being a doctor, just to be able to take all the sciences).  I believe that his compassionate spirit, his thirst for knowledge, and his passion for problem-solving will be used to bring God glory in science.  He (God) is the one that came up with it all anyway.  : )

We are thankful for the things that Thomas has been able to accomplish physically, considering the hole and all..

Running a 5K!
 
TaeKwonDo...currently a green belt!
 
General mayhem and mischief with his brothers...

Then there is this other part of the hole...the way it prepared us for the journey we would take with Lars.  Before the hole, I never imagined walking into a neurologist's office, or being in physical therapy...but there we were, in a world we were not prepared for, learning the language of how our brains and bodies work...all of which have been wonderfully helpful as we are learning about Lars.

A journey with our sons...teaching us compassion and patience, learning to embrace the way we are created, learning to love the gifts that God has given us, learning to forgive those that harm or do not understand.  Grace.  Peace.  Reminders of where we have been, hope for what is to come.


Saturday, September 15, 2012

She turned me into a newt...

Forgive me for the Monty Python quote...it's been stuck in my head for a few days...

It got better.

I think Lars looks like he's saying, "It got better," in his best English accent...
plus I just love looking at his beautiful smile.

Big week for us.  Updated diagnosis.  New medications.  Biofeedback.  New orthodontic hardware.  New school schedule.  New activities with a new homeschool group.  Arranging college-y stuff and tests for Thomas.  Thomas on his first airplane-trip-by-myself-weekend-away-from-my family-adventure.  And our dog.

: )  Still smiling.

I love the start of a new school year.  New books to read, new languages to learn (it's Swedish this year!), new projects to tackle, new discoveries...I love teaching my boys!  This year had a funny start, with a steady stream of family staying with us up until the morning we began school, a new/old dog in our family to keep us on our toes (check out the cute picture of Charlie below), and an almost daily trek to a different doctor/therapist/dentist/orthodontist/allergist office, not sure what happens next...

So, in the midst of this week, it happened...another diagnosis...a change...

Lars is officially a child with PDD-NOS (still on the autistic spectrum...just not Asperger's).

Pervasive Developmental Disorder, Not Otherwise Specified
http://www.autismspeaks.org/what-autism/pdd-nos

I love the "Not Otherwise Specified" part...

Our new psychiatrist felt that the original diagnosis of Asperger's was not accurate.  I concur.  The issue was a big part of Lars' development did not fit with an Asperger's diagnosis...his severe language delay (Verbal Apraxia).  Anyhow...can't change the past, only keep on working for a beautiful future for Lars.

No big deal, really.  It does not change a thing about how we will continue to work with him.  Just a new fancy name for what is going on in Lars' brain.  The way his brain works and how he relates, or doesn't relate, to others is still the same, and this keeps him firmly on the Autistic Spectrum.  Changing the diagnosis only gives us a better picture of Lars from a historical/developmental standpoint...if historical standpoints are needed for this kind of thing...

The psychiatrist also added a new medication and changed the dosage of his current medication to help control his anxiety.  This is a bigger deal.  I am not a huge fan of medication, but I know that sometimes our brains and bodies need a little kick start to help them do their jobs.  The list of side effects is a bit alarming...but we watch and hope.

So why the Monty Python quote?  The psychiatrist has a thick eastern European accent and kept on saying, "Well, it got better now didn't it." And she was right, many things did get better...and I rejoice...but as we were talking about life-changing, developmentally-important events in Lars' life and I was thinking about Monty Python and how it would be cool if she had an English accent...

Figures.  Silly me.

Later in the week, Lars began working with a biofeedback program.  The therapist hooked me up to the machine...it was a lot more challenging than I thought it would be!  I understand the premise of this kind of therapy, hopefully it will click for Lars and add another tool to his workbench.  

If you haven't read my post about Lars' tools and workbench...here you go...
http://homeschoolgraceaspergers.blogspot.com/2012/02/its-all-about-tools.html

As we continue with this therapy, it will be a place to introduce his sensory and OCD triggers, hopefully allowing him to use what he learns to keep his mind and body in a more relaxed state...I really like this idea.

Lars has had a string of really great days.  Even this morning...I did not have much planned since Thomas is off on his big adventure, and it has been a crazy week.  Lars came to me shortly after he woke up and said, "Mom, whatever you want to do today, if we need to do something or go somewhere, I think I can handle it."  In a world where we script and schedule our way through every day, this is pretty great to hear from Lars.  Happy dance!

Honestly, God is at work in Lars, in our family.  I believe with all of my heart that God orchestrated this move for us.  I am floored at how much is happening for Lars...how much he is growing in his own understanding of how his brain works, growing in his ability to communicate and let us into his awesome thought processes.  God is good.  Believe me, there have been plenty of tears, plenty of heart-aching moments here, just as there have been anywhere else we have been...it's just different somehow.  I know that God doesn't change...so I am pretty sure it's me that's done the changing.  I dare to hope.  I continue to pray.  I know I share this Bible verse lots...but it reflects what I believe about Lars, about my family.

Jeremiah 29:11-13 / New International Version (NIV)

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart.

Where do we go from here?

We watch and wait, and continue pressing forward with our well-maintained structures, schedules, therapies...

and Charlie.

Best dog ever!

Thursday, August 16, 2012

Good pain.

Sorry for my silence...so much is happening...

We are settling into life in the Midwest, getting organized to start another year of homeschooling and activities.  We have a couple more weeks of summer vacation...to swim, to sleep in late (at least to 6AM), to finish getting the house in order, and to get my new Excel spreadsheets posted on the refrigerator.  It all seems so normal, so settled, so easy.  But there's a catch...

Lars' new therapist has thrown down the gauntlet in dealing with his anxiety and OCD. 

Hang on, this is going to be a bumpy ride...

Lars and I have been going for weekly sessions with his new therapist (known from here forth as N) for 3 months.  She is young, does not have the long list of degrees behind her name, and is often very enthusiastic about the process of dealing with stress and dark, twisty thought patterns.  I was skeptical at first, but in this short time, she helped Lars stop picking at his skin (something he has been doing for almost 4 years...and something every other psychologist and psychiatrist has not been able to get him to stop doing) and started the process of dealing with the sticky-OCD-thoughts that send Lars into a dark corner to hide.

It started with permission.  Permission to hurt, permission to feel pain, permission to be sad if sadness was called for, permission to be mad if that is what would help...permission.

Permission to pick.  Wait...what did you say?

When N told Lars he had permission to pick at his arm, I about jumped across the room to cover her mouth.  My thoughts were racing,  I could feel my own anxiety creeping up inside of me.  Why would you tell a child he had permission to hurt himself?

Here's the deal.  N gave him permission, but he had to take ownership and responsibility for his actions.  She told Lars she called a dermatologist to talk about what would happen to the open sores on his arm if he kept picking and didn't care for them properly.  He could pick, but he had to keep his arm clean and covered, and let us take him to the dermatologist if his sores weren't healing.  She told him before he picked, he had to write out the pros and cons of picking in that situation.  She told him that if he did those things and came to the conclusion that picking was the answer, he had permission to continue.

Guess what...he stopped...with one small exception while we were on vacation...he stopped.  A painful, almost daily habit of picking at his beautiful, perfect skin...stopped.  I was shocked.  I am thrilled!  I can't wait to see what happens next!

After about a month of working on coping strategies for Lars, even putting together an emotional band-aid box (a little box filled with sensory items, and other cool stuff, like a copy of The Hobbit by J.R.R. Tolkien, that helps him deal with anxiety), N began a process known as REBT (Rational Emotive Behavior Therapy).  It goes like this...

1)  Lars identifies actions or circumstances that cause anxiety, or an OCD response.
Example - The store was really crowded on Saturday, I felt anxious.

2)  He lists the consequences of the trigger event or circumstance.
When I felt anxious on Saturday, my heart rate increased, I felt like I couldn't breathe, and I secretly picked at my arm.

3)  Lars is challenged to think of the beliefs he holds about that event or circumstance.
When a store is crowded, there is not much room for me to have space, and people run into me, and some of those people are sick or might be eating a messy food.

4)  Lars disputes with himself about his beliefs about that particular event.
When I am at a store, is EVERY inch of the store filled up with people, or are there places for me to go?  Is EVERYONE at the store ALWAYS sick?  Are ALL the people eating while they are shopping?

5)  As Lars identifies and reasons his way through what he believes and identifies thoughts and beliefs that can be changed, he can lower his anxiety level and OCD response to that given situation.
When I go to a crowded store, there are places where there are less people and I can get a break and get my anxiety in check.  There may be one or two people in a store that have a cold, but most people there are healthy and out for a fun day just like me.  There may be someone having a snack while they walk and shop, but most people will eat in the food court or restaurant and I don't have to go there if I don't want to.

6)  Next time Lars goes to a crowded store, he will hopefully remember his new thoughts and beliefs about that situation and be able to keep his anxiety in check.

Got it?  This example is an oversimplification of the process and issues for Lars...but that's how it works...and it is HARD WORK!  Lars' mind is a wonderful and beautiful thing, he has an amazing capacity to remember the smallest details of what has happened (both a blessing and a curse), and he has already demonstrated a most mature ability to look at his anxieties, fears, triggers, and stressors and deal with them head on...but he has a long road ahead. 

Hope.

The last session we dug into the reality of how the perceived emotion of others in our family (namely me) can affect Lars' emotions.  I call Lars "my E.T."...he is my emotional radar, both good and bad, in the house.  He is the first to acknowledge his own lack of "emote-ability"...but he is cued into the emotional timbre of our house.  If I am having a bad day, he is having a bad day.  If he is having a bad day, he thinks that I am going to have a bad day.  In truth, this is often what happens.  He feels bad that he thinks that I think that his bad day is causing my bad day.  Can you follow that?  It's a vicious-cycle-thing.  It's uncanny how he is the first to ask (often, even before my husband) what is bothering me...and frustrating that he is often the first to ask what is bothering me.  I know and feel that I have to hide my emotions so as not to cause him further stress...this is tough sometimes.

N talked about pain and unnecessarily taking on the pain of others...this can be challenging for moms...and boy do I struggle with this one!  As a mom (and N is one herself...so she gets this), I/we want to take away the pain from our beautiful children, to shield them from the emotional roller coaster of pain and sadness, of anger and rage.  But is protecting them from pain always the best choice?  I believe that there is a balance of protection and experience, and admittedly, I do not always get it right.  I have gone to one extreme and tried to control Lars' world to get rid of things that I know are OCD triggers and anxiety-producing for him.  On the days when I am emotionally worn out, I have had the attitude towards Lars, just deal with it, we are doing this whether you can handle it or not.  Neither extreme is healthy. 


Pain is a part of life.  Sadness is a part of life.  Anger creeps into our minds and hearts from time to time.  Life.  But without pain, how can we enjoy the wonderful moment of healing?  Without sadness, the feeling of joy bubbling up from your belly?  Without anger, the feeling of serenity and peace that comes when the storms of life subside?

N gave us both permission to feel pain, to feel sadness, to feel angry, to feel scared...but we are both responsible for our own emotions.  I have heard this before, but not in this context or setting...not with my teary-eyed son looking at me for a nod of quiet confirmation.  Yes Lars, we will experience pain, we will experience sadness, we may even be angry, but it is OK, we will be OK.  I will love you through the pain, no matter what.

I think in this process of therapy, Lars and I have become emotionally glued at the hip...feeling in the most raw form, the ups and downs of OCD and Asperger's.  Good and bad.  N gave us permission to experience emotion, but be cautious about how we take on the emotions of each other.  Compassion is a wonderful quality.  Empathy can be a great place to begin in our desire to help others.  But getting lost in pity, guilt, and getting wrapped up in someone else's head isn't going to help anyone...good advice...

Pain is real.  Pain can be good.  Pain has a purpose in our lives.

With pain, we grow.  With pain, we are challenged.


This picture captures so much of how I think Lars experiences life...on the sidelines, head hung low, caught up in sadness and anxiety...the rest of our family, smiling...
Lars carrying the guilt of knowing he, at that time, does not have the capacity to fake a smile.



We have come a long way since that other picture...and how much I have shrunk...
I am thankful for each step along the way.


As a Christ-follower, I know that God uses pain for His glory.  I have seen this in my own life, and I pray this for my boys' lives.

“We can ignore even pleasure. But pain insists upon being attended to. God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is his megaphone to rouse a deaf world.”
C.S. Lewis, The Problem of Pain

So, we bravely dive in with permission...to feel pain, to acknowledge pain, to experience the hope that comes from understanding that God will use Lars' pain, all of our pain for a purpose.

Jeremiah 29:11

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

At this point, I am thankful for some of the simplicity of life that surrounds us here in the Midwest...more time, energy, and readiness to do whatever is next...

Hope.  Good pain.


Monday, July 9, 2012

Welcome Home.

As an act of faith, we brought our broken down moving boxes to the recycling center last Monday.  We are home.  Although, I was reminded by a dear friend, that this home is not our final home...heavenly perspective.

We unpacked.  We arranged and organized.  We wallpapered and painted.  We re-arranged and re-organized.  We planted and watered.  We sat down.  Unpacked a little more...and said, "This is pretty great!"

My husband and I keep looking at each other with a sense of wonder, a deep peace, and joy to the tippy-top.  We know that Wisconsin is not perfect...but for us, it is a place that holds a new adventure, wonderful family, and blessings galore!

We have been intentional in the way we have set up our new house.  We want it to be a place where we can serve our family well...we desire for our house to be a place where our boys will become the young men God is calling them to be...and Tim and I can enjoy every minute of it...

Welcome to our home.


It seems just right.  It sits on the corner in a lovely neighborhood.  Our neighbors have made us feel welcome...they are lovely too.  It also happens to be four blocks from the church we are attending...walking distance...love it!


Our front living room (the picture was not taken from the front door, but from the family room) with Markus enjoying his best-birthday-present-ever...a Kindle.  Hopefully, someday he will decide that the apps he can play are not as cool as the books he can read on it...Angry Birds is pretty fun addicting.


Our family/music room.  Come Christmas time, we expect you all to be joining us for hot cocoa by the fire while we sing carols...I love this room!  New paint color expected soon...


The kitchen.  Best place to hang out.  You can usually find Markus or me making something yummy to eat around here.  Markus came up with NKAS last week...New Kenosha Awesome-ness Sauce...and it was...awesome, that is!  Today, Lars actually helped me prepare chicken for dinner...and he ate it!  I tell you, good things are happening around here...in the past, you would be hard-pressed to find Lars anywhere near the kitchen unless there was his morning smoothie or ice cream involved.

NKAS (New Kenosha Awesome-ness Sauce)

My refrigerator is getting filled up with new lists, chore rotations, meal planning ideas, and goodness...no excel spreadsheets...yet.


The blue, dry erase board you see holds a new/old thing for our family..."Child of the Week."  It is something my parents did with my sisters and me when we were young...we did this for awhile in Missouri, and a little bit in Vegas...but it has been too long...so we begin again.  The child of the week gets four things...

1) His own box of cereal...kid's choice...and labeled with his name so it is off limits to everyone else in the house. 
2) To pick a favorite meal for me to prepare on Friday evening.  This can be anything from lasagna to pigs-in-a-blanket...whatever they want! 
3) To pick the movie for family "PPP night" on Saturday...pizza, popcorn, and a "picture show"...aka...a movie...I know, the name is weird...
4) A date with either me or Tim on Sunday afternoon. 

: )  Good things.

We worked hard on this room.  There used to be wallpaper with little pictures of cherries and cinnamon sticks on it...not my style.  It was therapeutic to pull down that paper...although I did leave one little cherry in the corner (under our new paper and paint)...just to remember.  We even bought a much larger kitchen table...just waiting for us to be able to eat together as a family.  It was Lars' idea...great idea...he is not quite ready...his chair with the orange ribbon is still at the counter...but his place is always ready at the table....


Yep.  Scandi-hoovian by design.


From the kitchen, Lars and I can escape to the basement, where he has his new hammock swing...a place to escape, swing, and twist...


And I have my 40th birthday present...a kick-boxing bag.  LOVE IT!  Don't mess with this Chiquita-banana...seriously...don't mess with me.

Back upstairs...


So these stairs...are Cooper stairs.  Apparently, they are the same model that Michael Jordan has someplace in his house.  Yep, we are that cool.


And look who I found at the top of the stairs in our loft and new home school room!  This is a great space, filled with books and computers...and Legos.  Ready for learning!


I even had time to set up a bookshelf with next year's curriculum for Lars and Markus.  This year we will be digging into history from 1850 through modern times,  physics, and SWEDISH!  Ya' sure you betcha'...

And then there is the Legos...here and there...and everywhere...



The boys' rooms look pretty great too...but they aren't quite ready for a photo...too many Legos on the floor!  You will notice that Lars' fidgets are out and ready for fidget-y-ness.  As a side note (and future blog post)...our new therapist is AMAZING!  Her approach is new and unique, and already changing our outlook on Lars and his well-being! 


One of my favorite little corners in the house...my husband's HOME office....where he works FROM HOME.  He has been working right in this spot for the last week and a half, and we are LOVING it!  Part of the blessings of being in Wisconsin and our new adventure, is having Tim around for quite a lot of it...God is very good!


Last, but certainly not least...our new, very little garden...three tomatoes and a basil.  Just waiting, to burst forth with a great harvest...

All in all, we are very pleased with our new house...our new home.  We are thankful, and giving praise to God, for this journey that has brought us to our new home.  We remember the steps along the way, the lessons learned, the friendships made, the wonderful memories etched in our mind...ready for this new chapter, this new adventure...




Thursday, June 7, 2012

Living 'In Between'

Still waiting...it may be a week, maybe two, to get into our new house.  Historically, I am really bad at waiting.  In the past, I have used it as an excuse...to not do what I know I should...to get connected...to build relationships...to take care of my boys' needs...to play...to laugh...to live.


The boys and I are 'in between'...not quite here, not quite there, just waiting...


Honestly, there are days I feel like it would be easier to stay in, in my pajamas, live online, catching up on movies I want to see, reading books I want to read...waiting...alone...not complicated...


In the current process of moving and waiting, I have felt a sense of challenge to jump into life...no excuses...no putting off what I know I should do...

I choose to live 'in between'...

Psalm 118:24 (NLT)

24 This is the day the Lord has made.
We will rejoice and be glad in it.


It is hard being the new girl on the block.  With my sister here, I have a bit of her life to jump into.  She has been gracious in including me and my boys in what is happening in her house...but there needs to be more...my life, my boys' life, our family's life...


It is hard being the new girl on the block with the strange family...a unique job for hubby, a homeschool family, a special needs family, a Lego-obsessed family, a TaeKwonDo-board-breaking-family...yes, we are a unique family (and proud of it) that loves the Lord and loves His Church...but there will be no excuses, no apologies...we are who we are, and we are living!


It is hard to walk into rooms filled with people you don't know.  To introduce yourself over and over again, hoping that you will remember a name, a face...or better yet, that someone will remember you.


It is hard to walk into rooms filled with people you don't know with a son with Asperger's and OCD...hoping that Lars will remember to make eye contact and speak clearly, not pick at his arms, and not freak out if someone offers a handshake.  No apologies, Lars is who he is...the Garretsons are who we are!  Today is a new day that God has given me and my boys.  I choose to live today with hope, with love, with a grateful heart, and with purpose!


I am excited about the new connections we are making here in Wisconsin...no waiting to start living...no excuses...no apologies for who we are.  Living 'in between'!

Going on adventures with my boys...to Cheese Castles, guarded by cheesy-knights!

Thursday, May 31, 2012

Woolly Bear Caterpillars, 40 Years, and The Paparazzi

For one of our longer trips in the van last month, I bought the Frozen Planet DVDs for the boys...we love it!  I am a sucker for cute baby polar bears and the sweet papa penguins that bravely protect their eggs in the dark and freezing cold.  I am continually amazed at God's creation and how much of it I have never seen, let alone understand!  Beautiful!  Something new I learned...

The woolly bear caterpillar can survive in the Arctic for many years, freezing every winter, thawing every spring, growing just a little bit every year, until it is ready for metamorphosis.

http://dsc.discovery.com/videos/frozen-planet-woolly-bear-caterpillars.html

http://en.wikipedia.org/wiki/Pyrrharctia_isabella

 
The Woolly Bear Caterpillar

AMAZING!

So here's my big thought for the day...what is going on in the caterpillar's little head when it starts to freeze?  I love that God created this little critter to be able to survive in the Arctic...but how inconvenient for the caterpillar.  Freezing to survive?  If I were the caterpillar, I would be praying for a well-made-parka, and the ability to build myself a little igloo.  Cool and thought-provoking.  Pretty sure the caterpillar doesn't fuss like I would.

Maybe it's the fact that I just turned 40, or maybe it's just that I am a geek and way over-analytical...but I can't stop thinking about this caterpillar and how amazing it is that it can be
FROZEN SOLID, YEAR after YEAR, and SURVIVE!  God is a God who protects and preserves.  He created us all just the way we need to be, to not only survive where we are, but thrive where we are.  God has demonstrated this YEAR after YEAR in my life.  I am thankful.

My husband, sister, family, and friends threw me an amazing birthday celebration.  Unbelievable, the surprises they were able to put together.  And I say again, I am thankful.  Thankful for the people that God has brought into my life, thankful for love, thankful for my 40 years.

Other than the never-ending string of surprises involving people that I love, great food, beautiful words from my boys, a trip down memory lane, and amazing gifts...the best part of the day was when Lars plopped himself down right next to me while I was eating my birthday dinner.  Yeah, this was one amazing gift from him...there were even tortilla chips being eaten in the same room.  Cue tears.  Big time happy-dance-in-my-head.

At the party, and in the days following, the paparazzi  my nephew stalked us with my camera (and anyone else's camera he could get his hands on)...





I will share more pictures later...the ones from the grown-ups...I didn't take many myself, being the birthday girl and all...

Quick update on life in Wisconsin.  We are still waiting to close on our house in Kenosha.  Currently we are in a hotel, just a few days away from a little trip to the Wisconsin Dells, looking forward to celebrating Markus and Lars' birthdays in the next couple weeks.  Lars and I went to a new psychologist last week...great first session, going back tomorrow, hopeful.  The boys have a new orthodontist...Markus may be in for braces...Lars is probably near the end of his treatment plan.  We were all allergy tested...I am apparently allergic to everything and need to start back up with the immunotherapy.  Fun, I was feeling like I needed more appointments in my life.  Good news...all of the doctors' offices have great magazine selections, so I will not have to buy any subscriptions.

We are already enjoying our new TaeKwonDo classes, busting through boards, and working our nunchuck magic. Thomas is enrolled in a dual-credit college program with a declared major of Math/Pre-Med (we forbid him to become a surgeon...see the post about the frog dissection)...and he is really excited about that, so much so that he will tell perfect strangers.  We are meeting some lovely new people here in WI (see previous sentence about Thomas), and enjoying life with my sister and her family!

As we continue to get set up, I will keep on telling our story, share our hopes and dreams, our successes, our failures, and our love for our beautiful boys!

I have so much more to share...