Therapizing

Keller’s world of play is more and more becoming a world of therapy.  I say we are ‘therapizing’ our entire lives at this point.  Wake up turns into a therapy opportunity.  School is a place where he is pushed toward therapy goals.  Afternoon play is time for therapy.  And then we end the day with bed-time play with a therapy spin.  Yep.  Therapizing our world.

We are now (finally!) starting ABA (Applied Behavior Analysis) therapy with some great therapists.   It is based around play but will really push Keller because the goal is to change his behavior to age-appropriate goals based on rewards.  Basically it’s changing his behavior to grow and learn.  A neruotypical child just naturally follows and mimics his or her parents and then learns behaviors, eating, talking, and social cues.  Keller does not do that and so has to be taught everything.  So we are starting with about 3 hours a week and will quickly move to 6 hours and more.  This is in addition to his occupational therapy goals to help him with his sensory problems and our new dietary focus to get him more nutrition and rule out any food sensitivities.

As we therapize our world I feel like I am the last to accept it all.  Keller is doing great (even though today included many tears, it ended in happy play).  Kieren desperately wants to help Keller with EVERYTHING and loves being his therapist, as she is already sister, momma, coach, and dance instructor to him.  Casey is taking it all in stride as he always does with life and is welcoming this new change seeing how much it will help Keller in the end.  And then there is ME.  I KNOW that the end goal is a Keller who can function and flourish in the world, which means he has a lot to learn, but his cries tear my heart apart.  His world is very different from normal kids and I just can’t seem to accept it.  But while it may not be fair, we see God is GOOD in providing so many to walk this new journey with us.  We have doctors, therapists, community, resources, and tons of advice and wisdom.  It may not be fair but it is full… FULL of God’s goodness and provision.

So Jesus we receive this new therapized world along with your great love for us that is so, so evident.

And YOU are welcome for bringing a new word into your world: ‘therapizing.’  Use it in a sentence right now so you don’t forget it.

Our Team

“Remember, we all stumble, every one of us. That’s why it’s a comfort to go hand in hand.” ~Emily Kimbrough

There is a lot of stumbling around here.  Most of it is my fault.  Or really it’s my DAD’s fault.  You see, he is such a klutz.  He drops, he spills, and he breaks.  EVERYTHING.  And then he passed it on to me.  And then I passed it on to Kieren.  Yesterday Kieren came down the hall crying her eyes out and when I asked what was wrong she said she bumped into the wall.  THE WALL.  Walls don’t move, but I wasn’t shocked a bit.  Kieren is constantly falling and breaking things.  The hard part is to not laugh at her while she is grieving her latest bump or bruise.

Emotionally the Prince family seems to be pretty clumsy lately, as well.

We are bumping and bruising and falling and breaking.  Things have been difficult over the past month.

There are many lessons we are learning now that Keller has brought us into the SPECIAL NEEDS community, and one of them is that you can’t do this alone.  We cannot bring Keller to healing and growth and fullness ALONE.  As great and intelligent as we are, we need a team of people to come around us and walk with us through the journey.

We are beginning FINALLY to assemble Keller’s ‘TEAM.’  Kids with autism need a team of therapists and doctors to help walk with them towards communication and social skills.  We have some great people with us and things are starting to look stronger.  But there are still many, MANY stumbles and falls on this path, and I know we need more than just a team of doctors and therapists.

We are meeting with one therapist named Bethany who lives in Scottland and feels that God wants her to come visit us on a MISSION TRIP.  Yep, she wants to do a mission trip to the MISSIONARIES.  It’s insane.  You can learn more about her trip here.  But even as we begin to meet with her and others, so often I feel completely overwhelmed and emotional.  It still seems surreal at times, like I am living someone else’s life.

And just when I need it someone comes and grabs my hand to help me walk the next step.  We need each other and I have never known it more deeply than in these days.  We couldn’t survive without people holding our hands.  Keller needs a strong team, but all of the Prince’s need a team to hold our hands and walk with us.

Thank you to those who are holding our hands both near and far.  We feel it and we will keep holding on as we stumble ahead.

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!

Little Things

When your life is suddenly turned upside down with a diagnosis of special needs, you need to learn to appreciate the little things.

Some days my heart and head seem to be completely swept away with the heaviness of what life may or may not look like.  We are kind of in a holding pattern as we begin different therapies and try to figure out what is going to work best for Keller.  We are having many initial and assessment meetings.  I am tired of the assessing.  I am ready for action.

So while we wait I am desperately trying to hold on to some kind of normal life.  Trying to make normal life.  Trying to take hold of the normal life that is always happening but slips by when you only look at the big and overwhelming things.

So as we wait, as we process, as we accept, we are LIVING.  We take walks, we go to the beach, we make great dinners, we laugh, we have dance parties, we have friends around, we hug and wrestle and play a LOT.

Much of life happens in the little moments, those that often go unnoticed.

“Don’t despise the little steps you know you can take every day. There are tiny miracles in each and every one of them.” 
― Israelmore Ayivor

I am reminded of how beautiful the little things are.  The Prince family might be weary but we are strong in spirit.  And the laughter and hugs AND WRESTLING MATCHES are slowly healing our broken hearts.  Thankful for the little moments of beauty in this world.

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