Please Don't Tell Me That "He is Fine"

August 20, 2014

There are a list of things that people say about Keller when they hear that he has autism, or when they watch him and try to reason how it’s not that bad.  One of the worst is: “He is fine.”

People want to tell me that Keller is fine for a number of reasons.  Possibly they don’t understand what autism is so they don’t know that the ‘cute’ things he is doing are really markers of special needs.  Possibly people are trying to make me feel better and want me to know it’s not ‘that bad.’  Possibly they are uncomfortable with special needs and so they want to make themselves feel better about Keller’s situation.

I want you to know that it is not helpful for a parent of a child with special needs to be told “HE IS FINE.”

Keller is NOT FINE.

Keller has autism.  Keller’s language milestones are ONE YEAR behind where they should be.  Keller cannot go to the grocery store without melting down.  Keller will not sit at the dinner table to eat a family meal.  Keller can’t sit in our church for an entire service.  Keller is not fine.

And that is OKAY.

Everything doesn’t always have to be fine and okay.  Sometimes things are hard.

When you tell me that Keller is fine, instead of making me feel better, I feel like you are trying to minimize the issues we are facing, and thus I feel alone.  I want people to enter to battle with me.  To celebrate the milestones and to cry when it feels too tough to handle.

Today one of our favorite Ocean View families sat at our house for thirty minutes watching Keller eat a cup of yogurt on his own and then counted and chatted about the letters of the alphabet.  They were amazed and cheered on every little step.  This makes my heart deeply happy.  My son is 26 months old and so should be using sentences now and running around eating everything in sight and he is not.  But what he is doing is being celebrated and as he grows I love when people come into the journey.

For all those of us who are going through a time that ‘is not fine,’ what we need is for you to enter our ‘not fine.‘  We don’t need you to minimize our ‘not fine’ or even to blow out of proportion our ‘not fine.’  One thing is very ‘not fine’ but the rest of life is probably pretty good.  So we can talk about the ‘not fine’ or the other things that are super fine.  But the ‘not fine’ is NOT fine.  Make sense?

So now four months into Keller’s autism diagnosis, there are so many things that are fine, good, and even great.  Kieren is excelling, I am loving ministry, Ubuntu Football is building a house, and our family is loving life.  Keller is not fine and I sometimes want to talk about that but sometimes I don’t.  I am thankful for those that enter our ‘not fine’ and have helped to make the rest of the world super amazing and wonderful.  At the end of the day in the super great and the ‘not fine’, we most want to be KNOWN and LOVED right where we are.  Thanks for those of you who do that so well.

Hooray

August 13, 2014

Hooray for these days.

Since Keller is involved in therapy for most of his days and is always being pushed forward, he is very accustomed to people clapping and cheering for him.  So he cheers for himself very often too.  It’s pretty awesome.

Hooray for Keller.

Hooray for therapies.  Hooray for THERAPISTS.  Hooray for friends who come into our house daily and love on Keller.  Hooray for information and advances and organizations and lots and lots of information about autism.  Hooray for Keller working so hard every day to grow and learn.  Hooray.

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Hooray for Kieren

Hooray for her little voice and her sweet little face.  Hooray for her overbite that is cute… for now.  Hooray for how much she loves friends and EVERY person that enters into our home.  Hooray for how smart her little brain is and how she is loving reading and math.  Hooray for all of Kieren’s little hugs.  Hooray.

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Hooray for SUNNY DAYS.

Ya’ll it’s WINTER here in South Africa and our winters are pretty fierce.  They keep saying it’s the ‘worst winter in ages’ but I don’t care.  It can be the best or the worst winter, I just think winter is mean.  Like the mean lady at the grocery store yelling at the clerks.  Winter has had some mean days and what did we ever do to winter to make it so mad?  But someone made winter happy because this week we have had SUNNY DAYS.  HOORAY FOR SUNNY DAYS.  Hooray for playing with dump trucks in the front yard.  Hooray for playgrounds.  Hooray for NOT wearing rain boots.  Hooray for sunshine.

Hooray.

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Hooray for LIFE.  Hooray for friendship.  Hooray for time with family and date nights with Casey.  Hooray for Jesus weaving himself into our world and holding ALL things together.

Hooray.

The Surprises

“Each day holds a surprise. But only if we expect it can we see, hear, or feel it when it comes to us. Let’s not be afraid to receive each day’s surprise, whether it comes to us as sorrow or as joy It will open a new place in our hearts, a place where we can welcome new friends and celebrate more fully our shared humanity.” -Henri Nouwen

These days have held many surprises.  But they were not the surprises I would have expected.  I guess that is the definition of a surprise.  Yep, thanks.

I would have thought that these months would be filled with just therapies and reading and learning and connecting ALL ABOUT AUTISM.  My mind is constantly filled with autism and I want to attack it each day.  So each morning I hope that the day will be filled with therapies and autism details.  And then each day is not.

I continue to be surprised by this new world of autism… because often it’s not much about autism.  I am surprised that instead of allowing me to wallow in autism-land and focus solely on Keller, God is calling us out into his world to love and heal others.  I am surprised that God doesn’t want  me to spend every waking moment obsessing over Keller but he wants us to look out and reach out.  It is surprising.  And it is hard.

Something that I continue to hear from God is Him saying “Take care of my people, and I will take care of YOU.”  Hard.  Because I want to lock the doors, throw away the key and spend every waking moment with my sweet family.  I don’t want to do ministry, I don’t want to preach, I don’t want to lead, I don’t want to reach out.  But I desperately want Jesus.  And so Jesus says go and love and that He will love me.

So I am pushing myself to be OPEN TO THE SURPRISES OF LIFE.  To be open to the people in my life.  To be open to others.  Others’ needs, others’ wants, others’ lives.  To be open to the SURPRISE that as I take care of others, God will take care of me.

God is ALWAYS SURPRISING us, but never how we expect.  How is He surprising you?

Peaks and Valleys

Casey has recently taken up hiking as a hobby.  Hiking is very popular here in Cape Town as there are endless mountains and trails.  Last week he took Kieren and her little buddy Dunte on another long hike to visit a waterfall.  They had a grand adventure.

I took a nap.  It was also grand.

I have been thinking a lot about the peaks and valleys of life.

There are so many highs and lows that come with every single day.  We expect and look for the highs and we are shocked and discouraged at the lows.  But both should be expected.  Both are NEEDED.

Now being a special needs family has really highlighted the peaks and valleys in our life.  We are on a journey of early intervention for Keller’s autism and there are MANY highs and lows.  Both are to be expected and even both are NEEDED.  But the lows hurt pretty bad.

We are seeing progress in Keller in certain areas of his life through therapy.  He is learning new words all the time and LOVES celebrating with us for every new word.  His new favorite word is ‘bulldozer’ which he says ‘fur-oh-duh.’  He is so proud.  I AM SO PROUD.  But we are also seeing Keller really struggle with some other parts of his life, and sometimes his struggling is INTENSE.  Recently bath time has become ‘oh so you are trying to murder  me?’ time in Keller’s head.  HE HATES BATH.  HE SCREAMS AT THE TOP OF HIS LUNGS FROM THE MOMENT YOU SAY ‘BATH.’  It’s pretty painful for me; so much so, that I recently came to the conclusion that children do not ever needs baths and we will now skip them forever.

They are cute and will still be loved when they are smelly.

Our therapist didn’t agree with my new life choice and says we should keep bathing our kids.

So the torture continues.

But it got me really thinking of the peaks and valleys in autism treatment and IN LIFE.  Sometimes you are moving forward and sometimes you are being pushed backwards.  Sometimes you are swimming in blessing and other times you feel you must be cursed.  One moment you are on the top and then next minute you are down in the ditch.  This is life, and there are things to be learned from both parts of the journey.  We need the HIGHS and LOWS.

So when you see pictures from our family on social media that look like this:

There was probably just a moment that more looked like this:

That pillow is Keller’s BEST FRIEND.  It’s disgusting and sewn up so many times and full of holes and his WORLD.  Without it, and often times WITH it, Keller melts down.

This is life.  We learn and we grow.  We have highs and we have lows.

And sometimes life seems to give us HUGE mountains that we must climb, and so we climb and build our endurance along the way.  We are definitely building some endurance and can’t wait to see the view from the top of THIS mountain.

Remember the Rise

This year for Ascension Day 2014 I was able to preach at Ocean View Methodist.  It was nice to personally reflect on the ascension of Christ and what difference it truly makes in my own life.

When I think of the ascension I always immediate recall Jesus saying, “But in fact, it is best for you that I go away, because if I don’t, the Advocate won’t come. If I do go away, then I will send him to you” (John 16:7).  This is such an incredibly ridiculous line!  How could it ever be BETTER that Jesus leave us!  And how eerie it must have been for the disciples as they stood looking at the sky with those words ringing in their ears?  This was something that Jesus was always trying to teach his followers, that he needed to leave in order for the real work to begin.

Even today I feel like we are often sitting looking at the clouds still in disbelief that Jesus ever left us, and wondering if he will truly come back.  We miss the promises that come with the RISE.  There is great promise in the rise but we have to stop REMEMBERING THE RISE and start RECEIVING THE RISE.

To truly receive the rise that Jesus gives us through His Holy Spirit, we need to do three things.

1. Embrace the MYSTERY.  Our life being filled with the Holy Spirit, without Jesus literally walking by our side is a total mystery.  We can’t predict the future and often times we can’t even understand what the heck is going on RIGHT NOW.  We need to stop trying to know and figure it all out.  We need to embrace the mystery of God and the mystery of what He wants to do.

2. Allow our EYES to RISE.  So often we are stuck looking at our present circumstances and deciding how to change them or looking behind and wishing the past would be different.  But Jesus wants our eyes and hearts to always be rising just as He did.  He wants us to not only look ahead but be MOVING ahead and always reaching out for what is next.  It might be hard, it might take all our energy, but the things of God are ABOVE and we need to go there.

3. We can’t just remember the rise, but we must RECEIVE the rise.  We can’t just recognize it or celebrate it but we have to receive it within our own lives.  “No longer do I live but Christ lives in me and the life I now live I live by faith in the Son of God” (Galatians 2:19, 20).  The Holy Spirit is ours to receive but so often we just go on talking about what Jesus could do but not receiving and claiming it for ourselves.  God is alive and active, we just have to open up to that work!

How can you RECEIVE the RISE today?

Remember the Rise Sermon

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.

Surfing and Autism

Going to high school in Florida, surfers were all around and normal part of the makeup of life.  I wanted to be one and be with one and be in their world.  It was so sandy and effortless and tan.  And surf boys were cute.  So one day a friend of mine took a group of us to the beach (something we did a lot for the surfers to surf) but he taught ME how to surf on a longboard.  Well, let’s just say that it turned out to be not as effortless as I thought.  I don’t prefer salt water going in and out of every opening in my body, so it wasn’t really for me.  I wanted to be a surfer but learning how to surf was HARD and I don’t like being bad at things.  So that was it.  Tried it and it’s not for me.  Add surfing to the list of many other things I have tried and failed at such as soccer, card games, volleyball …

I don’t like HARD.  Really, more than that, I don’t like BEING BAD AT SOMETHING.  In our world of autism, once I tried out being Keller’s ‘mom-therapist’ I quickly realized it was HARD and I was BAD at it.  Now I am not being modest here; to be a ‘mom-therapist’ means you break from normal mom-mode and engage in therapy goals and games all the time.  It’s HARD and COMPLEX… and HARD.  So my go-to move was to just quit, but I can’t quit being Keller’s mom OR being his mom-therapist.  With early intervention for autism you need to use EVERY moment for therapy and growth.  Even my moments being a mom.  I am good at being a cuddle mom, I am good at being a knowing-every-need-before-it-happens mom, I am good at being laughter mom, and I am good at being take care of every-thing-you-need mom.  I am not good at being autism ‘mom-therapist’ mom.  But there are no take-backs in the world of special needs and this is something I am going to need to get good at.

Enter Bethany Covington, our ANGEL who came from Scottland, raising her own money, to do therapy for a week with us and get us all to see it from a different perspective.  Our time with her helped us all learn how to do therapy with Keller; even ME.  It’s complex and unnatural and hard, but it’s possible.  Something can even be hard and be good.

You don’t have to be naturally great at something to learn it, or even to dominate it.  We all have things in life where we have to push through even when it’s hard.  Surfing and special needs are my hard things.  How can you push through what is hard for you?

The Other Side of the Mission Trip

Last week we finished up our #Mission2Missionaries, which you can read more about here.

It is strange to be on the other side of a mission trip!

It was an incredible and exhausting week.  It took us a couple days of processing to even figure out what had actually happened after it ended!  Bethany was incredible in our home and empowered us to take on every part of Keller’s life as therapy for him.  He is actually loving it and really enjoys the growth and challenges.  We watch him to see when it gets too much but we know we need to push him daily.  He is doing awesome.  We had two incredible community workshops about autism and special needs that were very well attended and are still getting ‘rave reviews.’  People were given knowledge and steps in how to engage people in need wherever they are at.  It was brilliant.  Bethany met with the principal at the special needs school here in Ocean View and even met with one mother who had a recent autism diagnosis of her son.  Amazing.

But for us as a family her time here goes beyond what words can express.

It touched us deeply.

Through our hours of conversation, learning, and engaging in EVERY part of our life, we somehow now find ourselves in a different world with autism.  I feel like before autism was hovering over me like a dark cloud, making everything dreary and impossibly sad.  NOW I feel like I am bigger and stronger than autism and looking down on it like a challenge but one I know we will overcome.  I think Casey would say he learned a lot and understands it all more.  Can you tell who is the feeler of the two of us?

Truly, something shifted in both of us over the week, and I can only give the glory and honor to God for that.  God moved within us and helped us to see everything from a different perspective.  We can do this and we will do this.  Keller is excelling but it goes beyond the physical and palpable signs of growth.  God is in our midst and He will do amazing things.  We are ready to see miracles and looking for every single little miracle He gives us.

In Bethany and her husband Eric we have made new life-long friends.  We are now family.  In our community of Ocean View (and beyond) we are now known as a special needs family who is passionately and loudly advocating for those who were previously overlooked.  We are in it together and we are dragging a BUNCH of people along with us on this crazy ride.  Casey and I are good, we are strong, we are one, and we are THANKFUL.

All the glory and honor and praise to our MIGHTY GOD!

Oh, and it seems that being on the receiving end of a mission trip can be good.  Really, REALLY good.  Amen.

#Mission2Missionaries

We are in the middle of a crazy nine days.  It is what I call #Mission2Missionaries.  We have an incredible new friend, Bethany Covington, who is here all the way from Scottland dong a MISSION TRIP in our own home.  A mission trip to the missionaries.  She works for the Brent Woodall Foundation for Exceptional Kids, located in Texas, but helps direct their international outreach to families all over the world who have kids with autism.  Bethany is training our family in how to do therapy with Keller at all times and has introduced a new therapy this week to us called PECS (Picture Exchange Communication System).  It. Is. AMAZING.  But IT. IS. EXHAUSTING.

We are spending every waking minute with Keller trying to push him in these therapies so he can advance and then we can learn the next stage while Bethany is here all week.  It’s all based around play, so he is having a blast in all of it!  The therapies are very specific and complex so we are also continually talking through them and making sure we are doing it right.  Casey always remembers the details.  I can tell you a story about how I FEEL about the details… does that help?

Part of Bethany’s mission here is to do workshops and reach out to our communities here as those with special needs often don’t have the abundance of resources found in the USA.  It has been super heartwarming for me to see so many people come out and learn about autism.  Last Thursday night we had our first workshop on autism and developmental disorders here at the Ocean View Methodist Church and 45 parents, teachers, and community members attended.  It was insane.  I was overwhelmed with emotion because two months ago I wouldn’t have been at such a workshop and now autism is rocking my world.  It was beautiful.  Then on Friday, Bethany and I went to the School for Disabilities in Ocean View to meet more with the incredible principal who has been working there proudly for 25 years.  She is a mighty woman and I loved seeing more of the school and hearing about their vision.  These teachers are living and working and serving in a world that is all new to me, and I am in awe of them.  Every day my worldview and what I value is being challenged and these people are my new heroes.

So we find ourselves in the middle of #Mission2Missionaries and I have learned that we missionaries still need a lot of change and mission in our own hearts and lives.  I am so thankful for a God who is in the changing business and loves us enough change our hearts.  And as we are changed I can only pray that we can change others.

“Even the smallest person can change the course of the world.” -JRR Tolkein

Someone Else's D-Day

Yesterday was a first of many.

On Monday I took someone else to the specialized pediatrician for an autism diagnosis.  A dear friend of mine in Ocean View has suspected her child has autism and has been researching and studying it for the past two years.  She was WAY further along than I was on my D-Day (diagnosis day).  I was blindsided, but she went in knowing what was coming, more or less.  However, the anxiety and questions were still just as palpable as they were for me.  Knowing something is coming that is not good.  Knowing that the journey ahead will be difficult.  Knowing that this day will mark a change in direction for the rest of her life.  They say that a diagnosis can be relief.  It’s not a relief.  It’s like you are waking up from your worst nightmare to know that it’s real life.

The doctors are so kind.  Other families walk in and out.  There are toys all over the floor.  Magazines to read. Resources to pick up.  But your mind is spinning.  You keep thinking that how could others possibly act like everything is okay when your world is literally falling apart.  Life goes on unscathed but your heart is in two pieces.

For me it drug up some memories as just two months previously it was me in that doctors office hearing a diagnosis.  I remember glancing at the resources and thinking where do you even start.  I remember feeling like I wanted to scream as the doctor pushed Keller to do things I knew he wouldn’t want to do; couldn’t do.  I remember Keller’s exhaustion and my exhaustion.  I remember talking about autism for the first time and my head spinning.  I remember crying in the car on the way home not able to take in the words that had just been spoken over my son.  I remember not knowing how I could possibly face what was ahead.

And then I remember that I did face it.  The world kept moving along unscathed and eventually I did too.  I didn’t pick myself up and move forward because I was a superhuman, but because I was human and that is what we do. We pick up the pieces and we move on.  We make a plan and we carry it out.  We cry a lot and then we stop and eventually we even laugh again.  It’s a new world but it’s still a good world.  That is what will happen for my friend. She will pick up the pieces and move on.  She will find her inner strength through Jesus and make a plan.  And she will laugh again.

This time it wasn’t my D-Day but I am glad that I got to be there for someone else’s.  I know the pain and confusion but together we made it through and prayed at the end giving it to Jesus who is the lover of our souls.  I hope God allows me to be a part of other families’ D-Days.  The tears will fall but the laughter will eventually return.  God is good.