You Went BIG

New friends of ours showed up at Keller's 6th birthday party this weekend with their son, and the dad took a look around the kitchen and said, "WHOA, you went BIG!" It was just a passing comment to him but really struck me as I glanced around our decorated kitchen.  Ummm, yes it seems that after HOURS of party preparation for Keller's superhero party, we had in fact gone REALLY BIG.  There were decorations, games, themes, food, banners, and more.  It was SUPER BIG. 

I thought later about that comment made by the father about us going BIG because I hadn't realized it before.  We always love celebrating birthdays in our home and as a family love putting together a party, but this one had gotten pretty extreme.  What happened that made it so BIG?

A quick reflection easily revealed that my heart is overflowing with thankfulness and celebration as Keller has recently lost his autism diagnosis.  There seems to be SO MUCH to celebrate.  Keller's early birthday parties were only a few people, and even that seemed to completely overwhelm his little head and heart.  As the years have gone on we have added people to his parties and they have become more big and boisterous.  But this year we have been planning his birthday party for MONTHS and he has been filled with eager anticipation for it.  He loves his friends, he loves a party, and he loves to celebrate.  We were all looking forward to it.

But maybe I was the one most looking forward to it.  To gather a big group of people and have a ruckus and rowdy celebration for my son is a true gift and one that I don't take lightly.  My son, who use to have autism and would literally SCREAM if anyone walked into our living room, now planned an entire party (and dinner that followed) for the people he loved and relished in every moment.  Truly, he soaked up all the love, attention and friendship of every single person that was there. 

It.  Was.  Stunning.

So yes.  I went BIG.  I went REALLY BIG.  I made too many decorations and I made the whole family dress up like superheroes and I bought WAY too much food and the whole thing was super over the top.  I went BIG.  But for my miracle boy I absolutely love BIG and celebrating all that God has done in his life.

Happy birthday dear Keller.  For you, my son, we go BIG!

When You Try Again...

When your child has autism, things that are small challenges or goals for normal kids and families are anything but normal for yours.  Not only can it be a challenge but autism can make a normal event downright TRAUMATIZING.

At the end of 2014 we made a trip to the USA for our annual time of fundraising and connecting with family.  We had almost a year of therapy and intervention for Keller and his autism diagnosis and we were feeling encouraged at his progress.  However, the trip was disastrous on many levels.  Keller regressed and was anxious and upset much of the trip.  Those would be my feelings on all levels as well - I was anxious and angry.  I felt like my family and friends only were able to see the worst version of Keller and I was constantly filled with stress.  Truly, more than stress I just felt SAD.  Sad about the reality of autism and unsure of our future.

We came back to Africa, regrouped, refocused, and re-goaled.  Keller got back on track and continued to make significant progress.  We began to prepare for our next trip at the end of 2015.  We prepared Keller, we prepared our family and friends, and we prepared our hearts.  There was lots of work, but can I admit that much of the work was needed IN MY HEART.  There was a part of my heart that was terrified at having to take Keller back to America.  I feared he would regress, I feared he would be anxious, I feared it would be difficult, and I feared I would crumble under the weight of it all.  If Keller limped through the entire four weeks I know I would barely made it out alive.

There was no choice in the matter.  We had to make the trip.  We had to take Keller.  We had to DO IT AGAIN.

And we are on the other side of it all.

Can I just say that SO MUCH OF SPECIAL NEEDS is simply doing it again.  We fall and we fail and we HAVE to try again.  We simply must DO IT AGAIN.

I didn't want to travel across the world with my autistic son but I had no choice.  There are other things, however, that are also difficult with Keller and I do have the choice to try them again.  Often I try and often I do not.  Sometimes I am brave and sometimes the fear overcomes and cripples me.  

Our time in the USA at the end of 2015 was an incredible success for Keller.  He loved being with family, understood each transition and challenge, was incredible and calm on the airplanes, and overall just THRIVED in the USA.  

As he succeeded, so did I.  As he triumphed, so did I.

With children, with special needs, with LIFE, so many times we just have to TRY IT AGAIN.  We can't give up.  We can't be defeated.  We can't be overwhelmed.  We have to try again.

Because when you try again, you have a chance to triumph.  

Don't miss your chance.  

TRY AGAIN.

One Year

March 17, 2015

Today is the day.

March 17, 2015 marks one year since our fateful day where we received Keller’s autism diagnosis.

One. Year.

What a difference a year makes.

A year ago we had a little boy who didn’t say any words and mostly communicated through grunts and cries.

A year later we have a little boy who talks and laughs and sings and dances and points and TRULY COMMUNICATES.  Hallelujah.

A year ago we had a little boy who wouldn’t make eye contact and literally screamed when people entered his presence.

A year later we have a boy who has FRIENDS at school, in our community, adults who love him, and new admirers daily.

A year ago we had a little boy who was obsessed with trucks and elephants and nothing more and who would choose those objects above all else.

A year later we have a little boy who still adores trucks and elephants along with cars, all animals, dinosaurs, books, bikes, and almost any other toy you can think of, but MOST enjoys his toys when he can play WITH another person.

A year ago we had a little boy who wouldn’t eat hardly anything and we have battled with food every single day.

A year later we have a little boy who still struggles with food but is trying new food all the time and learning to love family dinner time.

A year ago we had two parents who were overcome with grief and fear by the word ‘autism’ and who felt their dreams and hopes were dying right before them.

A year later we have two parents who are filled with HOPE and VISION for their son and trust in a God who promises the best and abundant life for our little boy.

A year ago we had a diagnosis that rocked our world and threatened everything we knew.

A year later we have a diagnosis that is a gift, a challenge, a tool, and something we embrace so that we can help Keller to be the best little man he can be.  We live with joy, hope, and trust in God’s promises.

WHAT A DIFFERENCE A YEAR CAN MAKE.

God gave me this scripture at the beginning of 2014:

“The LORD is my strength and my song; he has given me victory” – Psalm 118:14

Even in my darkest days God was always my strength and song and truly He has already given us victory.  What a year it has been, one I will never forget.  I will SING from the rooftops of what God has done in this year.

Happy diagnosis day, Keller James Prince.

We love you and love this journey with you.

Image via

"It's Because He Has Autism"

November 12, 2014

Kieren is so super verbal.  She takes any moment of silence and turns it either into a song or a conversation.  If there is no one to talk to she will talk to herself as if she is having a conversation with someone.  It’s adorable.  And scary.  But mostly adorable.

One thing she talks to me about, and thus I suspect she talks with others about, is why Keller seems to be having a difficult time with one thing or another.  She will say:

“It’s because he has AUTISM.”

The problem is that she often says this sentence for instances that have no relation to autism.  If Keller won’t eat his dinner it’s because he has autism.  If Keller cries when getting dressed it’s because he has autism.  If he hits his head on the coffee table while playing it’s because he has autism.

Kieren’s reason for every strange and troubling behavior is “It’s because he has AUTISM.”

Now Keller does have autism and there are many moments in the day where his behavior reminds us of that, but we are also experiencing a difficult season of ‘the terrible two’s’ with our Keller and so sometimes “It’s because HE IS TWO.”

Honestly, it’s hard to tell the different between a two-year-old tantrum and autism at times. They can look similar but have two distinctly different origins.  When Keller is having a tantrum it is because he doesn’t want to do something and he is expressing his opinion on the matter.  But a tantrum happens when he CAN do something but he doesn’t WANT to do something.  An autism meltdown happens because a person is not able to process what is being told to them or what is going on in their environment and they become overwhelmed and anxious.  An autism meltdown is something beyond the control of the person because they actually can’t process through what is happening.

We have lots of both in this house.

Realizing Kieren that Kieren thinks everything unfavorable in Keller’s world is ‘autism’ has pushed us to really try to learn more what is the difference between two and autism for Keller.  My go-to-parenting-method is to never discipline or correct and only hug and kiss.  Obviously this method has a few flaws.  We need to know the difference in Keller’s meltdowns so we can help him to process in the anxiety and make better choices (i.e. not SCREAMING AT THE TOP OF HIS LUNGS) when he doesn’t want to do something.  Keller wears his heart on his SLEEVE which is beautiful but also won’t be okay in EVERY situation.  He has to learn to feel and then calm himself.  Oh but I pray he is always still so close to what he feels.  What a treasure that is.

At the end of the day my goal is to help Keller be the BEST KELLER HE CAN BE.  So sometimes the best he can do is have a meltdown because of autism.  That is okay.  Sometimes his best is LEARNING how not to tantrum and be a part of this world that necessitates things like bath time and eating.  That is also okay.

You know what, Keller is doing a pretty good job of working through both kinds of meltdowns and I am so proud I could shout it from the rooftops!

Five Tips on Taking A Child with Autism on Holiday

September 30, 2014

We recently were inspired to take a short family holiday (or vacation for you Americans) as it’s been such a hectic season of life around here.  A couple nights on the coast of South Africa in peacefulness and rest.

Oh and we were planning on bringing our son with autism too.

So I now would like to share five TIPS on taking your child with autism on a holiday:

1. DON”T EVER TAKE A CHILD WITH AUTISM ON A HOLIDAY/VACATION/DAY OUTING/ANYWHERE OTHER THAN HOME.  What are you thinking??  Your child has AUTISM?  Everything new and different makes them completely stressed out and scared.  If you are ever thinking of taking your child with autism to a new place for a rest take that thought and put it in a treasure chest, dig a hole, bury it and only retrieve it again in 10 years when life bears some sense of normalcy.  Do NOT take your child with autism on holiday.

2. Did you see number one??  Just wanted to remind you in case you were tempted to not listen to me.  If you are sure you want to try this holiday thing, get ready for major meltdowns.  Oh, you think you are use to your child with autism having meltdowns?  You haven’t seen meltdowns until you have experienced holiday/vacation meltdowns.  The travel and new environments will cause your child’s brain to completely short out and melt into a puddle.  This will result in LOTS. OF. CRYING.  LOTS.

3. Okay, so if you still determined to take your child with autism on a “STRESS-CATION” as Keller would have termed it if he could speak clearly, then you need to load down your car with LOTS and LOTS of __________ (whatever your child with autism is crazily obsessed with).  For us this is trucks, books, and the iPad.  Have them available at EVERY MOMENT.

4. Also very important for your “STRESS-CATION” is your own favorite __________ (wine, chocolate, cake, movies, books, heavy narcotics, whatever makes YOU happy as a parent).  Eventually your crazy kids fall asleep and the quiet noises will be as loud as a construction site.  Make sure you have something to do as parents because you will not be preparing for the next day of school/therapy/driving to activities/playdates/etc that you normally do.  You get to REST as shocking as it is, so make sure you bring some things to help you rest.

5. Last tip – even though your holiday may be a “STRESS-CATION,” count the costs and do it anyways.  GO!

It is hard and it is exhausting to take a child with special needs on a holiday but it’s worth the effort/stress/crying/trouble.  In the end the joy of being together and resting and making new memories is WORTH IT.

Keller struggled at first to get use to the long drive but he (we) made it.  Keller struggled being in a new house and figuifng out his new surroundings but he (we) did it.  Keller struggled to sleep in a new place that wasn’t home but he (we) did it.  Keller didn’t love our hiking adventures and outings but he (we) did it.  We all did it.  Together.  And it was special and beautiful.

So go!  Head out on your own stress-cation… I mean HOLIDAY soon!

The Other Side of Kids in the Bed

September 15, 2014

You know those nights where your kids are sick and miserable and have disgusting fluids coming out of every orafice and they will ONLY settle if in YOUR bed, disrupting your precious treasured sleep?  Those long nights with feet in your back and little snores and coughs and you wake up feeling more tired then you went to bed?  I just realized that I would do ANYTHING for one of those nights.

There is another side of kids in the bed.  The other side is when your kid won’t ever sleep in your bed.

Keller is an INCREDIBLE sleeper and always has been (PRAISE THE LORD HALLELUJAH).  Many kids with autism really struggle with sleep and so we are super blessed in this regard.  I remember Keller at about four months old when he suddenly WOULDN’T LET ME rock him to sleep.  He literally pushed me away and arched his back leaning towards his crib.  He WANTED to be alone.  He WANTED to fall asleep alone.  He still does.  I think his crib is like his happy alone-time-space.  He loves it.  This all sounds super great I know and what could possibly be the problem??  I found out last night.

I am in bed reading before I fall asleep and suddenly I hear Keller’s bloodcurdling screams from across the house.  I ran to Keller’s door but Casey was already in his room so I RESTRAINED myself and sat outside the door.  Casey was doing everything right.  He was cuddling Keller, rocking him, singing to him, and NOTHING WAS WORKING.  Keller eventually pointed to his bed and Casey put him back in his bed and closed the door as the screams continued.  We sat outside the door as Keller eventually quieted after a minute or so.  PAINFUL for a parent.  More painful that in about another hour Keller woke me up screaming again but this time I went in to rescue him in his bed only to have him again point back to his crib after I took him out. I put Keller back into his bed, un-cuddled and un-loved and walked out the door.  Again Keller settled in a minute and awoke in the morning happy as a jaybird as if nothing had happened.  My heart was still sore from the events (and even feels sore just writing about it now).

It is excruciating as a parent when your child is sick or in pain.  Let me tell you, it is FAR MORE EXCRUCIATING when your child is hurting and WON’T LET YOU COMFORT THEM.  This is a major part of the life of a parent with autism.  “Many children with autism have a reduced sensitivity to pain, but are abnormally sensitive to sound, touch, or other sensory stimulation. These unusual reactions may contribute to behavioral symptoms such as a resistance to being cuddled or hugged.”  Keller will hug and cuddle sometimes but evidently HATES to be held when in distress during the middle of the night.  We have had him react this way MANY times in the middle of the night as he seemingly only wants to be alone in bed.  So hard.

I was thinking about the many parents who discuss ‘co-sleeping’ and kids in the bed and the endless debate about how to get your kids to SLEEP in their own bed.  We had some fights with Kieren for sure, but now having a child who hates to be cuddled at all is the most difficult by far.  I would welcome many sleepless nights over a child with autism who cringes at touch.  Through therapy and lots of time with Keller he now likes to cuddle and snuggle at times, but we find out his real heart in the middle of the night and I can only pray that one day he will let us rock him to sleep after a bad dream.

I want some of your mommas out there to consider the other side of co-sleeping – what it would feel like if your child completely resisted your touch in the middle of the night.  We should always consider the other side of any situation.  Sometimes our present difficulties and hardships are someone else’s most cherished dream.  Maybe smile the next time you feel a foot in your stomach during the night and think of those who would give anything for that kick.  I know I would.

There is always an other side.

Image via

Fake Laughs

August 26, 2014

Keller and Kieren are loving their life.  And I know this because of the sounds they are making throughout the day.  They are both filled with LAUGHTER.

I am noticing it recently because as Keller begins to learn words and communicate with us, he often says a word and then laughs afterwards at himself.  Okay, it’s a FAKE LAUGH, but a laugh nonetheless.  I think this is incredibly perfect and awesome.

Keller has learned in our family that one of our values is LAUGHTER and we also value MAKING EACH OTHER LAUGH.

So he is already striving in his little brain, AS HE LEARNS TO COMMUNICATE through great difficulty, that one of his goals in communication is to make people laugh.

How great is THAT??

So lately Kieren and Keller are LAUGHING all the time and trying to make each other laugh.

They love being together and playing together.  And they LOVE TO LAUGH.  Kieren is constantly attempting to make her brother laugh by tickling, saying funny things, and playing with him.  What I am noticing lately is that Keller is laughing ALL THE TIME.  FOR NO REASON.

I call it ‘fake laughing.’

He frequently is walking around the house babbling to himself and then laughing. He looks at you and says something and laughs.  And Keller constantly is laughing at things he is watching or in reaction to another person.  This boy LOVES TO LAUGH and he LOVES TO FAKE LAUGH.

Evidently laughing is a highly regarded emotional response in this home.

My hearts bursts that my home is filled with laughter.  From early in the morning until the kids go to bed this home is brimming over with laughs and giggles.  To me laughter is one of the greatest gifts in this life and I love that my little people are valuing it already.  Even if it’s forced and fake, I’ll take this laughter any day.

These sweet kiddos remind me how healing laughter can be.  How laughter can change a mood, change the day, change the room and change a heart.  It is a rule in the Prince home that we must laugh every day… a LOT.

thank you Jesus for LAUGHTER.

“What soap is to the body, laughter is to the soul.”  ~Yiddish Proverb

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.