Keller Turns TWO!

Be. Still. My. Heart.

Today Keller James turns TWO.

Two years of sweet joy, two years of being a mother of a little boy.  Two years of lots of laughter, two years of a full and fun family.

Two years of much learning and stretching.  Two years of being broken and watching God build us all back again.

Two years of dreaming so many dreams and then re-dreaming them again with a fresh perspective.

Keller has changed our world.  He has made us better.  He has made us closer.  He has made us stronger.

We love differently now.  We see others differently now.  We are gentler.  More patient.  More thankful.

This boy has had my heart from the beginning and made me into something I had never expected.  Casey was the one who wanted a son, but since day one I have been obsessed with Keller.  I call him “little daddy face” because he is a little Casey-face staring up at me. As Keller grew so did his joy, his laughter, and the LIFE that sprung forward from him.  Even the hard days have been brighter with Keller in our world.

Keller’s second year of life has had many more challenges than we could have ever imagined with our autism diagnosis.  We have worked through it and every day I feel like we are unlocking the REAL KELLER beneath the stress, babbling, frustration, and confusion.  The real Keller isn’t autistic Keller, the REAL KELLER is full of laughter, loves learning new words, holds tight to those in his ‘inner circle,’ adores his family, and loves waking up every day to new adventures.

We are changed now and I look ahead to the next year of Keller’s life with different eyes.  I don’t wish for him to be successful by the world’s standards; I wish for Keller to be HIS kind of successful.  I don’t wish for him to be at the top of the class but just IN the class and a part of the class.  I don’t wish for easy days I wish for rich days.  I don’t wish away autism, but I wish that we would ALL be better because of autism.  I don’t wish for safety but I wish for God’s kingdom come.

Happy birthday sweet Keller James.  You are adored and treasured by this family and we thank Jesus for the two years in which you have transformed our world.

Why Be Aware of Autism?

Today, April 2, is “World Autism Awareness Day”

It’s our FIRST autism day.

In 2007 the UN adopted this date to bring awareness to the disorder of autism.

“This UN resolution declares WAAD as one of only four official health-specific United Nations Days and will bring the world’s attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.”

So today the world stops and recognizes this disorder and the Prince family DEFINITELY recognizes it.  We can’t do anything else.

So why does KELLER want you to be aware of autism?  Well let him tell you himself.

“Be Aware of Autism, From the Heart of Keller Prince, 21 Months Old”

1. Be aware of autism but know that Autism is not who I am, it’s just a way to help you understand me.  I am not my diagnosis, I have a diagnosis.  I am not an autistic child, but I am a child with autism.  It just means that I learn and see the world differently.  It’s not a reason to look down on me, but a reason to stop and try to see the world through my eyes.  Maybe you will learn something new.

2. Be aware of autism because kids with autism feel the world differently.  To you it may be a normal day, or a normal mall, or a normal gathering, but to me it’s overwhelming and hostile.  That doesn’t mean that my meltdown is because I am a bad kid, it means I am overwhelmed and don’t know how to express myself.  Give me grace and I promise you will also see the happy, fun loving, bright-eyed side of me too.

3. Be aware of autism because it’s changed my world, but more be aware of autism because it’s changed SO MANY OTHERS’ WORLDS.  In Ocean View, if you have autism it can be almost impossible to get even a diagnosis or treatment.  Because I have so many people who love and support me I will get the best care possible and will flourish.  Everyone isn’t so lucky.  Be aware and lend a hand so OTHERS can have the therapies and doctors that I will have so easily.  Every person with autism deserves the best care.

4. Be aware of autism because it makes me special.  Autism doesn’t make me less, but it makes me different.  That is okay.  It’s okay to be different, it’s okay to be vulnerable, it’s okay to need help, and it’s okay to take a different road.  I didn’t choose this road of autism, but it’s going to make me the most incredible Keller Prince in the world.  And that is more than okay; it’s great.

Thanks for BEING AWARE OF AUTISM with us!

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.

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.

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