Autism

The NEW Diagnosis

prince-fam017.jpg

We have entered a new chapter in our lives with a NEW DIAGNOSIS over Keller's life.  

A couple weeks ago we had a follow-up appointment with Keller's pediatric neurologist who diagnosed him on the autism spectrum in 2014.  We initiated the meeting because we felt that it was time to talk with her about Keller's diagnosis as it had become clear to us and his other therapists and community that he had truly lost all his symptoms.  

This appointment put me in a very tender and emotional state.  I was sure of what I had seen in Keller's life and deeply certain of the incredible and miraculous strides he had made since his diagnosis, but I also trust this expert and her opinion and wisdom into Keller's life.  Without her concrete diagnosis on Keller's life when he was 22 months we would NEVER be where we are today.  She sat at that first appointment and even before she had written up a full assessment she knew unequivocally that he was on the autism spectrum.  She left no doubt or questioning in our minds when we left her office and her certainty helped launch us into our new mission with Keller.  

However, as much as we are eternally grateful for this doctor, being on the doorstep of meeting with her again made me feel like my own fate was in her hands once more.  I felt vulnerable and extremely emotional the entire day leading up to the appointment.  There are times still in our journey with Keller when a wave of emotion, grief, or fear will wash over me about his life and I feel again like I might drown without the anchor of God to hold me in the storm.  We are blessed to have an incredibly supportive community around us and so some of our closest friends prayed with me during that day as we anticipated the appointment.

At last the appointment arrived.  Casey was confident, Keller was clueless and happy (as usual) and I was an emotional wreck.  Quickly in our conversation Dr. Schleigal asked why we were there and we told her about our desire for her to assess Keller's progress.  She asked Keller some questions and we continued to chat and then she said "Well he is obviously NOT on the spectrum!"

This sentence that just rolled of her tongue has absolutely has changed our lives.  Our son Keller does NOT have autism anymore.  Keller is NOT on the autism spectrum.  The new diagnosis is that we have NO DIAGNOSIS.  We just have a happy and full-of-life little boy.

This was what we had always hoped for but also were scared to dream of.  A couple years ago Casey and Kieren started praying every night that Keller would lose his diagnosis, but it was too scary and vulnerable for me to pray.  For me, God was still GOOD even if Keller never lost his diagnosis.  I didn't NEED that miracle, I just needed God in the midst of whatever our story was supposed to be.  But over the last year it has become glaringly clear that Keller does not have autism, and to let myself even begin to accept that has been huge.  But this appointment, this day with our doctor, was the confirmation of it all.  And it has been so good.

Honestly, it still feels unreal when I think that I DON'T have a son with special needs now.  It became a part of our identity as a family, not just for Keller, so it's strange that the term no longer applies.  We now look ahead to our future and dream with new lenses for Keller.  So much is possible, so much is tangible, so much is even beginning to happen now.  We have a new diagnosis of a son WITHOUT autism and our lives ahead look rich with promise and potential.

You Went BIG

f8b837c1-94c4-452e-aae4-48dc0b61acd4.jpg

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. 

a286f9f7-7b1c-40ec-aa3e-474aeac08413.jpg

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!

Choosing Bravery

8e06096d-8cf0-4571-aeed-93ecb9735e8b.jpg

Our son Keller is starting a new chapter in his life this year as he is now attending Grade R (called Kindergarten in the USA) and it's been a huge transition for him.  When we went to visit the school and had the 'meet the teacher' day, he ended the day crying because he was so overwhelmed and just wanted to stay at his playschool.  My heart was broken watching him struggle and we began to tell him over and over again that he was BRAVE.  He is BRAVE.

Now Keller has started school, and today was a true revelation in my heart that Keller doesn't need to become brave because KELLER ALREADY IS BRAVE.  Today Keller went to school just as normal but a friend who teaches in his school sent us a beautiful picture of him as he chose to be brave today and get dressed up as a skeleton which he had never done before.  He was smiling with pride and my momma heart soared to know he is choosing bravery in something that was an obsticle before.

2da14ef0-8be4-4796-9e98-b50909d753eb.jpg

Every day at school, without the help of his obsessively loving parents, Keller is choosing to be brave and step into new and unknown things.  We watch from the sidelines and cheer from the background and couldn't be more proud of him.

But as I cheer I can hear God speaking very clearly to me about my own path and the obstacles that are in my way.  Just as we have been telling Keller to be brave, God has been telling ME that it's my turn to be brave.  It's time for ME to choose bravery.

Having a child with special needs is a journey that is hard to even describe to those who haven't walked this path.  You live constantly planning, thinking, therapizing, sacrificing and praying for your child and each day is a challenge to tackle.  We have walked that road for three years, but now our little miracle is flying into his own world and living bravely all the things we have taught him.  It is stunning to watch your child thrive, but can I be honest that it's also strangely painful to see your child fly away.  I have walked with Keller every step of his past three years and what he is doing now is beyond my wildest dreams, and when I am honest it also causes a sharp pain in my heart because I am no longer needed.  This calling that was put on my life to be a special needs mother, the calling I never asked for and never-ever wanted is now part of my identity.  But what happens if it's NOT my identity any more?  What I never wanted is now so deeply who I am that I do not know how to separate from it.  Part of me doesn't want to separate from it.  All of me doesn't know how to separate from it.

And so in this confusion and heart pang God is telling ME now to choose bravery.  God knows my hurt and searching and has gone before every moment I am feeling.  God is telling me to choose to be brave, even when I would rather cry and be overwhelmed like Keller has in previous times.  God is telling me to BE BRAVE.  May we always choose to be brave.

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear. – NELSON MANDELA

The Edge of Autism

IMG_6321.JPG

Our days with autism, could be numbered.

We are walking a journey with our Keller James that is miraculous and unbeleivable.  It is at the same time hard to take in and yet all we have wanted to see for years.  It's the days we dreamed of... when we were brave enough to dream.

Keller has finished creche (preschool) and in January 2018 he began Grade R (kindergarten).  He attends the same school Kieren attends, a normal primary school filled with neuro-typical boys and girls.  The school does value inclusion and has a few kids on the spectrum and with other intellectual disabilities, but it looks likely that Keller will not be one of them.  For sure, he was nervous about the change to 'big school,' but he is ready, and we, his biggest fans in the world, know that he will thrive.

At this point we have been told by multiple therapists that Keller does not have ANY of the symptoms of the autism spectrum and some have recommended that we meet with our diagnosing doctor about taking away his diagnosis.  This can happen, where a child would 'lose a diagnosis' because of intervention and an overcoming of symptoms.  We see Keller still struggling at times with focus and other tasks, but we agree that truly his defining autism symptoms are no more.

I someone wonder, with a huge lump in my throat, HOW DID WE GET HERE?

How did we get to a point where our child has no symptoms of autism and absolutely thrives in every part of his life?  Was that other child we had just a dream or was that really our life?

We know that Keller's autism diagnosis at 22 months was very real and it was very accurate.  He met all the criteria for autism and had symptoms that were moderate.  Our lives were completely turned upside down by the diagnosis and our family became intervention experts and all personal therapists for Keller.  

We have walked a three year journey with Keller where every moment was an opportunity to have therapy and help him learn and our efforts have proven fruitful.

What has been the most fruitful in this journey with autism has always been PRAYER and the PRESENCE of GOD.  We have always known that God was with us and have always seen His hand on Keller’s life.  There are changes and advancements that could have only come by a miracle and we never will forget what God has done.

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!

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.