What it's like

This is a piece of writing that has been shared with me since Keller’s autism diagnosis and it really rings true to my hopeful and brokenhearted little spirit.  I know that WHEREVER our journey with Keller takes us, it’s going to be the BEST place.

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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.

c1987 by Emily Perl Kingsley. All rights reserved.

Love Beyond What I Deserve

“Only goodness and faithful love will pursue me all the days of my life,mand I will dwell in  the house of the Lord as long as I live.” -Psalm 23:6

In this journey of Keller’s autism diagnosis we have received heaps and heaps of love and support from Africa and the United States.  It has been humbling and overwhelming.  People have poured out their love for Keller and our family.  We have been loved far beyond what we deserve.

It’s hard to accept people’s love sometimes.  I like to be the one serving and loving and giving.  To be on the receiving end of love is just plain tough.  It makes me feel vulnerable and needy.  I am still learning how to ask for help and I know I will get better at this.

But the earthly love that has been poured out to us has only been a reflection of what God has shown us.  God doesn’t send e-cards or bring you dinner, but his love is showered upon our lives… if we only will open ourselves up to it.

Even though I wish God would come to me in these days like a storm, He always shows up in a whisper and I have to lean in to hear His words to me.  But His love is perfect and He is the definition of love.  As much as I want to believe that the earthly love I am experiencing will last forever, it won’t, and His love is never-ending.  He will always be pursuing me with His love.

Psalm 23 has been on my heart during these days of Keller’s diagnosis.  And God’s love has been very real to me, as in other times of crisis in my life.  Psalm 26 tells us these two things about God’s love:

1. God’s goodness comes from His nature, not our worthiness.

2. God’s love comes from His character, not our virtue.

 God is being Himself, being all GOD when he loves us and lavishes it upon us.  It is more than we deserve and meets us exactly where we are.  For me, this diagnosis and facing grief and loss of dreams has been difficult, but much of it is that is has revealed parts of my heart that I didn’t know that were there.  My own selfish dreams.  My desires to be normal and accepted.  It’s fine if ‘other’ families have special needs but that won’t happen to our family.  The list goes on as I have thrown many temper-tantrums before God about this situation and how IT’S NOT FAIR.

But even when we are unlovable, even when the darkest parts of our hearts are exposed, God still moves towards us with his LOVE.  He doesn’t sigh and wait for us to get it together.

He RUNS to us.

“And while he was still a long way off, his father saw him coming. Filled with love and compassion, he ran to his son, embraced him, and kissed him.” -Luke 15:20 NLT

I have felt this from God in this newest trial in our lives.  As the gross parts of my heart have been exposed and as grief and worry have washed over me like waves, I have felt God close to me.  And after the confession and sorrow then I have begun to hear Him with me.  More, I have sensed Him with me.  Holding me and holding these things together.

People have remarked about how ‘strong’ our faith has been in this trial.  I have never felt further from strong, but there is no where else to run but to God.  Without God’s strength and love I could not make it through this.  There is no time to be mad at Him because I am desperate for Him.

And HE comes for me.  Thank you Jesus.

Different

Kids with autism are different.

They act differently, they see the world differently, and experience life differently.

From now on, Keller will have the label ‘autistic’ and will be different.

I love Temple Grandin (noted doctor, professor, author, and autism activist) who says that autistic men and women are “different but not less.”

I like that.

I’m not sure if the world agrees with it.

In our world it’s not good to be different.  I learned this early on.  I don’t know how it happened but around 6th grade I started copying and mimicking anyone.  My poor, poor best friend Laura Riley received the most imitation.  It was not flattery in her eyes.  I had very few friends and spent every day desperately trying to be like everyone around me.  My clothes were never good enough, my body didn’t look like theirs, I wasn’t as successful at sports or school like them, it was exhausting.  I even literally tried to mimic the ‘cool girls’ handwriting.  I do have good handwriting these days.  But none of these exploits ended in friendship.  I was lonely and not cool.

Austic children don’t know how to mimic and copy.  It’s actually a natural part of our development, that as children we mimic our parents and those around us to learn language and social skills.  Thus why Kieren is a ‘mini me’ (for better or worse).  However, since Keller has autism, he doesn’t know how to mimic and copy and so hasn’t learned language, communication, and social skills.  We will have to TEACH him these things.  It will be a painful and arduous process.  He WILL learn, but social skills may never be like his peers.

He will likely always be DIFFERENT.

This is a painful reality as a parent.  I had already been processing this for months as we began to realize some of Keller’s unique personality quirks.  He is an introvert and doesn’t like a lot of people around.  He loves dirt and sand and enjoys covering everything in it.  He doesn’t want to hug or cuddle most of the time.  We thought these were just quirky parts of Keller.  But autism is a whole new world of different.  A painful different.  A special needs and disability different.

I love Keller’s quirks, but I don’t want him to be pushed out or ostracized because he is different.  I don’t want him to be talked about behind his back or made fun of.  I want him to be accepted and loved.  I want him to be the most popular kid in the history of the world.

Okay.  Maybe my dreams are a TINY BIT shallow.

We hate for our kids to struggle and we just want them to be loved.  But maybe struggle is a part of the journey. Maybe being different and knowing from the beginning that he isn’t like the rest of the world is a positive thing.  I have spent so many years of my life trying to mimic others and fit in.  It was exhausting, fruitless, and never worked!  Now I live in a colored community where I am the weird white lady who is different from EVERYONE… and I love it.

I have learned that it is FREEING to be different.  It’s fun to just be you.  It brings peace to be who you were created to be.  Keller was created to be a unique and special boy.  He is definitely different but CERTAINLY not less.  He is more.  He is joy.  He is special.  He is OUR Keller.

I have a feeling that this is one of a MILLION lessons I will learn in walking through autism with Keller.  Being different is okay.  Being different maybe is even… good.  Being different can even be more.

I Have Something to Tell You

Telling people about Keller’s diagnosis of autism has been an interesting and foundational part of our new journey.  People obviously will want to process a diagnosis like this differently.  Some might want to keep it private, others want to share it with people they care about.

My tactic is to basically have verbal diaherrah and tell EVERY PERSON I SEE.

It’s seriously been insane.  I don’t know, but there is NOTHING else on my mind since Keller’s diagnosis and I can’t think of anything else.  Nothing else matters.

“How are you?” someone asks.  “Fine, but Keller has autism…”  “I’m hungry but Keller has autism…”  “Feeling sleepy but Keller has autism…”

It is the filter through which everything comes through.

We have been completely overwhelmed by the love poured out towards us.  People are praying for us and cheering us on.  It fills our every moment and my head spins with it all the time.  We are so thankful for those who are entering into it with us.

It has been surreal to tell my friends, my close community, here in South Africa.  I almost feel like there is a terminal illness in the family, as it shocks people and brings tears to the eyes.

What has touched me most as we have shared this news, is the simplicity and profound connection that can be given in love.  I have felt most loved when people have just listened.  When people have just been present.  When they have kept eye contact and just felt the moment.  People want to ‘cheer’ us on and I treasure that, but I haven’t felt like being cheered on.  I feel like we are hopelessly human and feeble and God is going to have to carry us every step of the way on this journey.  I am not perfect for this path, GOD IS PERFECT.  But not all have cheered us on.  Many have just grieved.  They have just been present.  They have just felt with us.

And then people have just been the hands and feet.  They have brought us food.  They have babysat.  They have come to see Keller and connect with him.  They have prayed for us in the middle of public places.  People have just done.  I honestly have felt similarly to what I felt when Kieren had her severe skin burn in 2010.  At first I couldn’t eat, I couldn’t get dressed, the most basic of functions were inconceivable.  Our friends have just come around us and helped us to live.

Friends, if someone you know or love tells you news similar to ours, I want to encourage you to just be with them.  Just be present.  Just cry.  Say ‘it’s not fair.’  Stomp your feet together.  And then help them to carry on.  Bring food.  Force them to go on dates.  Keep showing up and giving hugs and kisses.  Pray in public.  Just be with them.

Thank you, to those who have been on the other end of “I have something to tell you…” in the past two weeks. You have loved us well.  We pray you will keep loving us well.  We will need it.

Wonderfully Complex

“You made all the delicate, inner parts of my body
    and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex!
    Your workmanship is marvelous—how well I know it.
You watched me as I was being formed in utter seclusion,
    as I was woven together in the dark of the womb.
You saw me before I was born.
    Every day of my life was recorded in your book.
Every moment was laid out
    before a single day had passed.” 

-Psalm 139:13-16 NLT

The first person I contacted when we got Keller’s diagnosis of autism, after crying and blabbering with Casey for a while, was my sister.  My sister lives in Charlotte, North Carolina, and I am in Cape Town, South Africa but living across an ocean has somehow made us closer and stronger.  She is my favorite person in the world outside of the crazy three that live in my house.

I texted her.  Blabbered.  Sobbed.  You know how ‘real’ it makes something when you tell other people?  Was feeling that.  And she responded with sadness and shock and love.  And then later she sent me a piece of Psalm 139.  She said her spirit was telling her to share that Keller was ‘perfectly and wonderfully made.’

In the New Living Translation (above), the passage says that each person is ‘wonderfully complex.’  The Prince family is hilariously and glaringly complex; that is obvious.  But now my soul has to wrestle with Keller being wonderfully complex, including his autistic brain.  He is perfectly made, including a brain that isn’t properly developed and keeps him from making social connections and communicating.  He was brought into OUR family by the way.  Our family’s life mission is to communicate and socially connect with people.  And now our perfect little boy was somehow woven together BY GOD inside me… but he does not have the parts of his brain that teach him how to do… what we DO.

It’s a painful place to wrestle, and I know I am not the first.  God, why would you allow Keller to be developed so wonderfully and yet his brain doesn’t process the same way we do?  How could he not be able to hold eye contact, be hugged, be a friend?  These are things that are very possible, but we will have to TEACH Keller how to be social.  We have no idea what the future holds and what kind of kid Keller will be.  He might be the most outgoing kid ever or grow up to have only one friend.

At least I will always be his friend.

There are no responses to my questions shot up to God.  Just his promise that even though Keller doesn’t SEEM to be perfect and wonderful in this moment, he IS.  God has made Keller and allowed autism to be a part of his story.  I might never know why, but I can be sure God thinks Keller is wonderful.

So now we wrestle with Keller’s wonderfully complex brain and ask God to expand our version of perfection.  I have a feeling I am going to like God’s version of wonderful more than the one I have always held…

Love Him Now

I found this excerpt from a beautiful book called “Ten Things Every Child With Autism Wishes You Knew.”  One of my gut desires right now is to understand sweet Keller James.  In a moment I realized he wasn’t grumpy but misunderstood.  We don’t understand his world and what comes into his little mind and heart.  And so this piece really spoke to me.  I want to love Keller.  Love him ridiculously and lavishly because the world is hard for him.  This gives me a peek into how I can do that.  Join me in loving Keller (and ALL those in our lives) NOW.

Love me unconditionally.

Throw away thoughts like, “If you would just—” and “Why can’t you—?” You didn’t fulfill every expectation your parents had for you and you wouldn’t like being constantly reminded of it. I didn’t choose to have autism. Remember that it’s happening to me, not you. Without your support, my chances of growing up to be successful and independent are slim. With your support and guidance, the possibilities are broader than you might think.

Three words we both need to live by: Patience. Patience. Patience.

View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, or pass judgment on other people?

I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my guide, love me for who I am, and we’ll see how far I can go.”

-Ellen Notbohm, “Ten Things Every Child with Autism Wishes You Knew”

Hiding

I have never liked the game of hide-and-seek.  I’m not very good and it and I don’t like hiding in dark or dirty places.  And the second I hide I always need to pee.  Anyone relate?

However I have been hiding a bit in my world here.

I just realized it this week, but since Keller has been about 12 months old, he started to exhibit habits and characteristics that were… well… embarrassing.  He would cry whenever we went to a new place.  He would frequently throw tantrums.  He would HATE whenever we would meet anyone new.  He was all around a little grumpy.  So I started staying home with him more.  We called it ‘grumpy Keller’ or ‘introverted Keller’ but I began to manage his world and MY world so that we wouldn’t have his meltdowns.

Inadvertadly, in my hiding, I started hiding from my friends and community.  While Kieren as a baby loved visiting new people and staying at friends homes in Ocean View, Keller just couldn’t do it.  Not only did it make Keller upset to visit new places but it made me incredibly tense.  So we started hiding. Friends and Ocean View neighbors would ask why they hadn’t seen Keller and I would just say he slept a lot or was home or…. I don’t know what I said.  But I was hiding.

Then last week Keller was diagnosed with autism.  Suddenly it made sense why he was always ‘grumpy’ when we visited new places.  I now understand why he seems to HATE new people and tantrum at any transition.  He is isn’t being naughty; he is autistic, and the kinds of things that were always normal for Kieren are hostile and scary to Keller.

Yesterday I got a call from one of my dear Ocean View friends who lives on our street.  Kieren spent countless hours at her home as she has grew up.  In fact, this family were some of our first true Ocean View friends.  She asked how we were doing and said she heard about Keller and his diagnosis.  She wanted to hear about it.  And then she said… no she insisted that they LOVE Keller and that he must come to her house more often.  She described in length that he loves it there and how he acts and how comfortable he is, even if he cries for a minute when I leave.  This dear friend was reaching out and saying she wants to be a part of Keller’s life and she wants to see him grow and flourish even with autism.

I realized in that moment that I have been hiding.

I hide because I don’t want to overwhelm Keller, but I also hide because it’s embarrassing to be the mother of a child who has huge and uncontrollable meltdowns.  But now I have no excuses.  It’s actually a NEED of Keller to learn how to interact, how to be social, how to make friends and be comfortable with it.  We are going to have to TEACH him how to do these things and I can’t do it alone.  This also means that I might need to just be embarrassed at times.  I might need to ask for help.  I might need to burden other people.  I might need to ask for help.

No.  Not ‘might’ need to ask for help… I ‘DO’ need to ask for help.

We live in a community of broken and vulnerable people and I love to serve and walk alongside them.  Evidently I don’t like to be the broken one.  It’s easier to hide and cover it all up but, I can’t hide anymore.

As I come out of hiding I think of my God, who never hides from me.  God is always wanting to be found by us, and always ready to help and heal.  Keller needs therapies but my broken heart needs a lot of healing.  And my God is already here.

Time to stop hiding.

“You will seek me and FIND me when you seek me with all your heart.” -Jeremiah 29:13

The Big Sister

(Written on Thursday, March 6, 2014)

This morning we told Kieren.

We had to sit down our sweet, angelic, fun little girl and tell her that her little brother has special needs.

Kieren is only five, so there is only so much of this she can even understand, but I couldn’t help but gaze into her beautiful eyes as she listened to her daddy and nodded in understanding.

We told her that Keller is different, and his brain works differently.  Keller isn’t naughty but doesn’t learn the same way other kids do and will need special help with it.  Keller needs special patience and love from us because of how he has been made.

No parent should have to have this conversation with their daughter.

I can’t help but think of how Kieren shouldn’t have to give up so much.  She shouldn’t have to be patient when her brother can’t share.  It shouldn’t be normal that her brother is crying every time we leave somewhere.  It shouldn’t be that her brother gets so much attention and NEEDS so much attention every day.

But we don’t get to create our normal.  Keller and autism will be our new normal.  Her new normal will be therapies and strategies to help Keller.

But if there was ever a big sister who could rise to this challenge, it would be Kieren Joy Prince.

Kieren is full of compassion, creativity, laughter, and faith.  She will be the perfect BIG SISTER.

Thank you Jesus for the challenges and the difficulties and bringing us ALL on the ride.

The Day After

(this post was written on Wednesday, March 5th, 2014, one day after Keller’s autism diagnosis)

These days will now always be labeled differently.  There will be the days before the diagnosis and the days after the diagnosis.  We will vividly remember the feelings before and after the day.  We will remember the tears, the questions, the pain, and the unknown future.

I want to share on the day after the diagnosis.  I want to remember these days.  Remember my choices.  Remember the raw emotions.  And remember the hope that God brought into my broken heart.

Yesterday felt like a movie.  We sat in a  doctor’s office and she was talking to us, telling us of Keller’s diagnosis and beginning to explain things to us.  But I couldn’t move past the word ‘AUTISM.’  And I was having an inner dialogue as she spoke.  I thought, wait did she just say autism? No surely she just meant sensory issues or quirky personality.  She didn’t say that word.  She couldn’t have said that word…

And then I snapped back into reality.  She had said that word.  Keller had just been diagnosed with autism.

We will always remember yesterday.  The day of the diagnosis.

I often feel that labels can be hurtful and hold us down.  God is bigger than labels.  But in this case, a diagnosis is helpful, as I am already learning.  We will always have a different journey with Keller in helping him to learn, speak, eat, and interact with others.  He will most likely have a full and joy-filled life.  But it will be a journey.  And we will always need and WANT to consider autism.

Keller has always been a different kid.  He is introverted.  He loves certain toys like trucks and his pillow.  He doesn’t want to stand still.  He has his own ‘language.’  He does things his own way.  Some of these things that were once cute and now concerning.

Don’t get me wrong, we couldn’t love Keller more than we do.  We adore him and enjoy him.  But he is different.  And we have realized that these ‘different’ things are not just things he will grow out of.  We will need to work through them.  Either he will grow out of them or we will learn to accept them.  Our lives will look different.  Kieren’s life will look different.  Keller’s life will be different from other kids.

When you have a child you have so many dreams.  As they grow your dreams for them grow.  You hope for so much.  You yearn for so much.  But overall you just want a healthy child.  Keller is physically perfectly healthy, but his brain isn’t working as it should for his age.  So we have a new journey.

Autism is described and defined in so many ways, and Casey and I now have lots to learn.  To my pea-sized and heartbroken brain, it seems that it is a complex developmental brain disorder.  It affects the way Keller perceives the world and can make social interaction and communication difficult.

Honestly, just in our beginning reading we know that this diagnosis is true.  There are many, many cases that are much more severe, and so we are thankful, but it is autism.

I am writing this today to mark this day.  I want to mark the day after the diagnosis.  The day after a sea of tears.  The day after more questions swimming in my brain then I have ever had.  The day after I started to see Keller in a completely different way.  The day after I realized that many of my own dreams and goals would be put on hold.  The day after after it all changed.

But God’s small voice is calling to me on this day.  In my tears HE is speaking and drawing close to my broken heart.  He is already reminding me that all my dreams are nothing compared to HIM.  He defines my life, He defines fullness and abundance.  He is everything.

This worship song came on today and it focused my heart on Him.  I pray in the sea of the feelings I will encounter ahead that God will continue to reach into my darkness and show His love.  I know He will.

“Everyone has their obsession

Consuming thoughts, consuming time

They hold high their prized possession

That defines the meaning of their lives

You are mine”

-Mutemath

In a Moment

They always say that your entire life can change in just a moment.

For the Prince family, it just did.

This past week Keller was diagnosed with autism.

“Autism is a mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.”

We aren’t sure exactly where he is on the ‘autism spectrum’ as we haven’t received the full written report from our doctor, but we are sure it is a correct diagnosis.  We had some concerns about some sensory issues and delays in Keller and took him to see a neurologist who specializes in children and special needs.  We knew there was some work to do, but were blindsided by the diagnosis of autism.

Now everything has changed.  We are a family with a special needs child.  Autism is now personal.  We are a fury of sadness, confusion and exhaustion.  There are many more questions than answers.  There are many places we know we will get to.  We know we will accept it.  We know we will become warrior, advocate parents.  We know we will get a clear diagnosis and have clear therapies scheduled.  We know the diagnosis will be freeing at some point.  We know it will become our NEW NORMAL eventually.  But for now we are not at those places yet.

We are just feeling these feelings and trying to get our minds around this new life of ours.  We are inviting God into the darkness and just asking Him to be present.  We don’t want to just attach Christian language to this or will ourselves to feel better.  We want to truly ask God to do miracles placing this challenge before Him.  We know He can and we know He will.

A new  journey is ahead for the Prince family.  We will seek therapies for Keller right here in South Africa and will see him grow into the Keller God intends him to be right here in Ocean View.  Our story is to be told in this place.

In a moment everything has changed.  We invite you to pray for us and pray for the days ahead.  We know they will be painfully difficult at times and yet also believe that in them we will see the glorious presence of our GOOD GOD.  Join us.

“I cry out to God Most High,     to God who will fulfill his purpose for me.” -Psalm 57:2