Friday, January 25, 2013


I came across a story several years ago when I was a teacher.

I had no way of knowing that my own son would show me how very true it is.

It can really be applied to any situation in life, not just having a child with a disability.

We've believed Braden had autism since he was 8 months old.

And we have been doing therapies for that very thing from that time until now.

Braden with Miss Fuller and Miss Kim...his paras in 1st grade!
It's just the cancer mess got in the way and we didn't have time to get a diagnosis until this fall.

The psychologist, or whatever her title was, did her tests with Braden and then asked us to come back into the room.

I knew it was going to be autism...I had told her I was 99.9% sure it was.

And she confirmed it.

A few weeks later, her formal report arrived in the mail.

I read it and cried.

It boiled my sweet boy down to test scores and numbers and generalizations...

according to her...

he was going to need immediate, intensive programming.  We needed to take advantage of these million resources they had available to us and we needed to do it now because time was important...and we would have to reach out this this and that group...and do this thing and that thing....and......on and on and on....

They followed up with repeated phone calls to try to get me to ACT NOW...

It's not a Ginsu Knife commercial people...

I don't have to call in the next 30 seconds or the offer goes away!!

(and...we have been doing intensive programming...they just haven't been in the loop!) :)

I appreciate the available resources, and I appreciate the concern, but...

what the psychwhatever didn't "get" was that the autism diagnosis was really okay with us.

They were SWOOPING in to "fix" it.  In a BIG way.

All of these demands to fix things and change things and blah blah blah blah blah...

I'm beyond "fixing" it..

I embraced it years ago.

Now, don't doubt that we try very hard to help Braden become all he can be, and we want him to grow and learn and become independent.

We work to make Braden's life as good as it can be, we push him to learn and grow and he has gone through INTENSIVE therapies...I mean INTENSIVE therapies.... but

autism is NOT the end of the world!!


It is TRULY just a speed bump for us in comparison to everything else!!

And they were acting like Henny Penny...

the sky is actually NOT falling people!!!


I know they are worried about what is going to happen when he goes to middle school...what program is he going to be in and then what will happen when he's 18 and then 21...what will we do, where will he many questions and decisions!!?

So very Henny Penny-esq...

Frankly, I'm still stuck on the less than 10% chance of being alive in 2016.

THAT is a BIG deal!!

When Braden was 8 months old, I was hysterical, thinking my son had autism and wondering what kind of future he could possibly have...

I just wanted him to be able to play ball with his brother in the backyard, drive a car, go on a first date, go to college, get in trouble, have successes, and live a full life.


And then the cancer mess hit and I didn't care one bit about any of those things anymore.

My definition of "normalcy" is no chemo, no pain, no holding him through horrible procedure after horrible procedure, no NG tubes, no central lines, no PICU stays, no more life/death decisions every week, hair, living at our home, seeing Zach every day instead of every now and then...

The fight was to keep Braden alive...not to fix his autism!!

(and we did a lot of therapies along the way and the academic and social growth this child has accomplished is truly AMAZING!!!)

So that report made me cry...Braden Hofen is NOT a generalization or a recommendation or a number...

...oh the numbers....

The report gave his IQ score.

UGHHH!  I had NO idea she was doing an IQ test or I would have stopped her!

Having been an educator for over 20 years, that number hit the hardest.

Autism is a lot like having a brain that works like it was a piece of swiss cheese.

Some things (MANY things) are completely normal and solid for Braden...he's a hugger, lover, loves to play with others and he learns things...

and teaches me even more!

Someday, I will tell you about the lessons that boy has taught me...they are the most important lessons in the world!

BUT...there are a lot of holes in his thinking.  Many things are just incredibly weak...abstract concepts being one of those, speech/language is another...

And that IQ score was a reflection of those holes.  They didn't measure what Braden Hofen was GOOD at,

they measured the holes...

I knew that yet...

even knowing that, the number was devastating.

I feared that some people reading that number would think, "ohhhh....poor baby...he's an "X" on his IQ test so there's no WAY he's going to understand what we are trying to teach him...we should stop.

So I sat on the report for a bit...and then took it to our school Principal (who I admire greatly. I've known and worked with for about 16 years).

I told him my concern and asked him to please make sure no one interpreted things that way.

I believe that the holes can be compensated for...not necessarily filled, but compensated for...

and I didn't want anyone to give up on Braden and quit because he's an "X".

Braden has shown us that over and over and over again!!

Our Principal smiled and said that everyone knows IQ scores are invalid for kids with autism.

I really like that man!! 

Braden's teams at his preschool and his grade school are amazing and I will tell you about them one day as well!! I can't WAIT for that day...we are the most blessed people in the world to have a team of educators and a school of kids that are 110% behind Braden!!!

As I read that report, I wanted to send this story about Holland to the psychodoc...

It says it all...much better than I could ever do.

I hope you enjoy it!!

Life is about "Holland Encounters"...


Shoot...shift your perspective no matter what you have a pair of.... ;)

Change with Tim Gunn would say,

"Make it work people!!"
This is Braden with his "Miss Kim" who works with him every day! LOVE HER!!!


c1987 by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Have a "Holland Day" friends!!