"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!

HOUSE RULES

September 17, 2014

I was thinking lately about our strange little family and how every once in a while you realize that how YOU do it isn’t how everyone else does it.

I have always loved family and grew up in a very happy one that valued our time together.  As Casey and I have begun to watch our kids grow up in our household we have realized that we have some HOUSE RULES that pertain to our family and are non-negotiable when you live with the Prince’s.   Even when we have fostered children we involved them in our home rules and we think that abiding by these rules is what keeps us happy and whole.  Our home is a place of PEACE and JOY and these rules help keep it that way.

So here they are in no particular order.

PRINCE FAMILY HOUSE RULES:

1. Wrestle-mania.  We like to wrestle and throw little people and put each other in head locks and yell and scream.  We wrestle and even autistic Keller who hates hugs LOVES to wrestle.

2. Family Dinner.  This is a non-negotiable that always is being ‘tweaked’ because Casey is a soccer coach and often gets home late.  MANY nights we have TWO dinners at the dinner table because I eat with the kids earlier and then we sit with Casey when he eats.  We eat together.  We are working on Keller on this one because his little autistic brain HATES sitting at the dinner table but coaxing and bribery is helping!

3. Say “I LOVE YOU.”  This one I got from my parents, but when you leave the home or say goodnight we must share that we love each other.  Even though we ‘know’ it we still must say it.  It’s good to know you are loved.  All the little kids that are in and out of our home are also told they are loved.  We are working on this with Keller but I have no doubt he will be screaming it out sometime soon!

4. Big LAUGHS.  We like to laugh in our home and even on the hardest days we find ways to laugh.  We watch funny shows, we do a lot of tickling, we tease each other and we generally try to just have a good time.  Laughter really is the BEST medicine.

5. PRAY.  We think it’s very important to pray together and so we do it with the kids and with each other as a couple.  This is just a non-negotiable that we started at the beginning of our marriage 12 years ago.  We do it when we need to pray, we do it when we are thankful, and we DEFINITELY pray when we don’t feel like it.  We just pray.

6. Dance.  When all else fails, just dance.

7. Make it work.  We are ALL in ministry together as a family, no matter what one or the other is called to be a part of.  Because of that we make our callings work for the ENTIRE family.  God won’t call one of us to do something for His kingdom to the detriment of another.  We are one as a family and whatever the call or need, we have to make it work for ALL of us.  At the end of the day we are in this together so we figure out how to do it together or not do it at all.

8. You are welcome.  People are welcome in our home.  You are ALL welcome.  Our home becomes a bit of a ‘train station’ at times, and we definitely have boundaries, but we want people to feel welcome and loved in our home.  So come on in.  Have some coffee, play with the toys, let’s pray about it, and feel at home.  You are welcome here.

What are your house rules?  We love our home and would love you to come by anytime!

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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.

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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

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.

Sunsets and Snuggles

This weekend was one for the record books.  We have been having the harshest winter Cape Town has experienced in a long time, which for us means long dark nights, LOTS of rain, sideways rain, crazy wind, and cold, cold days.   They call it the ‘Cape of Storms.’  Boo.

And we don’t have any indoor heating anywhere.  So imagine coming inside and it’s just as cold as outside.  You use blankets on blankets on blankets.  I sleep with gloves on many nights (super cool).  You become best friends with one of these: a hot water bottle.  A rubber bottle that you fill with hot water and keep in your bed all night.  It’s your snuggly new best friend.

But then… oh but THEN… winter gets lost for a couple days and the heavens rain down in glorious SUNSHINE!!

*HALLELUJAH CHORUS*

When it is nice we run outside and play and try to soak up EVERY OUNCE of the warm goodness.

We are still loving having our sweet niece Hannah here visiting and so we took her to the city to take in some of Cape Town’s fun sites.  We went to the District 6 Museum, played at the beautiful Greenpoint Park, walked around the V&A Waterfront, and finished the day by hiking up Lion’s Head which gives you a perfect view of all of Cape Town for the sunset.

EPIC!!

It’s so fun to make new memories with our family and the cherry on top was that Casey helped Kieren (and her sweet friend Leah) make it ALL THE WAY to the top of the mountain!  It’s very steep and hard climbing so we are VERY proud of her.  Super DAD strikes again!

Living in such a cold climate that can be so harsh makes you really enjoy the warm and sunny days.  It makes you jump for joy and create memories when you get a chance.  When the days are cold and harsh, rather than complain, we try to get more snuggles in and focus our thankfulness on our strong roof and dry floor.  Life is all about perspective, and we all have SO MUCH to be thankful for.

So here’s to days of sunshine and days of snuggles.  To the days that are warm and the days that are cold.  For the days that are joyful and the ones that are dark.  May we find the joy in them all.

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.

Little Gifts

Being in the midst of struggle really can be tough, but it also can help you REALLY APPRECIATE when life gives you little gifts.

We have a garden and greenhouse on the grounds of the OV Methodist church that was constructed by a recent mission team for weeks the ladies of the church have been watering and sewing and working… with no results.  It has just been patches of dirt.  Until yesterday morning, when Kieren happened to look out her bedroom window and said, “Mommy there are FLOWERS!”  I didn’t even know what she was talking about until later in the morning when we drove by the garden and recognized the yellow treasures that had confidently sprouted from the ground.  The flowers had bloomed!!  All of a sudden, when I hadn’t even been watching they appeared.

Dear sweet Jesus thank you for Kieren Joy Prince.  What a gift that little person is.

Little gifts of life seem to be springing up all around and out of nowhere in our world.  They are bringing me so much joy and very welcome in the difficult terrain that we seem to be journeying through.  Gifts like randomly meeting someone super amazing from the Congo where my good friends Mathy and Antoine live.  Or an incredible DOUBLE rainbow over Ocean View in the morning after a hard rain.

Little gifts like a beautiful warm day where I can wear flip flops even though it is truly winter here in Africa, or a little text from a friend remembering something about my life, or my superman husband going out of his way to start every day with a hug.  BIG gifts like when some of our greatest friends in the world come all the way from North Carolina and spend a week with you and just sink into the goodness of your life.  Like when these amazing friends bring you bags of gifts like Santa Claus and cards from home and little things that make you smile.  Like when these beautiful friends just LOVE the people who you LOVE and celebrate their amazingness.  Oh man, we have had some gifts here with Dan and Suzanne Kelly visiting.

Then there was another BIG GIFT because we got a DOG.  I had recently learned that kids with autism often connect with family pets and so we had been talking about getting a dog for Keller.  But then a friend of ours in Ocean View had a litter of Jack-Russel terriers and decided to GIVE us one as a gift.  Just like that.  So boom our week just got really wonderful.  Kieren is obsessed with ‘her’ new dog that she tried to name Rosie but we swiftly changed it to Beyonce.  For obvious reasons.  The jury is still out on Keller as I think he likes all the ‘cute’ attention in the house and doesn’t want to share with Queen B, but he will surely warm up.  She is a sweet little puppy that has brought some sunshine into our world.

I am thankful for beautiful little gifts that God gives us in these days.  Our God is a loving and giving God.  He lavishes His love on us. He is not hiding from us or keeping His goodness from our hearts.   If we look, He is always the gracious and abundant Father opening to door to meet us and running down the road to embrace us.

Where are the little gifts in YOUR life?

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.