Normal...

When our son, Braden, was 8 months old, he was playing with one of those shape toy thingies. You put the correct shape in the correct hole. This one was musical and had a big center hole that had a reflective sticker in the bottom of it.

Braden was sitting in the center of our family room floor and dropping throwing the pieces into the center hole in a very aggressive and focused manner. I as watched with my 20+ year educator eye, I began to freak out.

I tried showing him what he was supposed to do, even did it hand-over-hand and he got it!

And then he immediately returned to his repetitive action. I could see that what he was doing was patterned and stimulating behavior.

And I knew.

I made some calls, and some evaluations done and although he wasn't old enough for us to make an official diagnosis, we began treating it like what I believed he had...

autism.

My heart broke. Our son was a child with autism and life as we had dreamed for him was not going to be a reality.  Even with five therapies a week and my husband, me and our sitter working with all day and evening we would not be able to change that fact.

He wasn't going to be able to have a "normal" future.

My worry was that he wouldn't be independent, he would never drive a car, get married, have children...all of the things we all assume will happen as a part of the normal growing up process.

I remember having coffee with a friend who had a son on the spectrum and explaining how I just wanted him to be able to play baseball with his brother in the yard like other children.

I just wanted things to be normal.

Then Braden was diagnosed with cancer and has been fighting for 6.5 years. It turns out the autism has been a blessing because he has no idea what "normal" is...

he doesn't know everyone doesn't feel horrible all the time, he doesn't know everyone doesn't go bald with treatments, he doesn't know everyone doesn't live a large percentage of their lives in hospitals hooked up to tubes and bags of chemo, he doesn't know everyone doesn't get shots all the time...

He thinks all those things ARE normal. And because of that...he is the happiest boy in the entire world even with his crappy circumstances. It's all about perspective.

The biggest benefit is that because of his autism, he doesn't know he is supposed to die. He doesn't have to be afraid because he doesn't even know what cancer is or that he is sick. He doesn't have to be afraid.

I'm grateful for autism now.

GRATEFUL!

And I'm not trying to "train" him out of his autism anymore.

This "different normal" is a gift. And this young man has taught thousands of people about HOPE and FAITH and BRAVERY and FIGHT!

But....my mommy heart still wants the normal things for Braden.

Last night after dinner, we went outside to play basketball...Braden's favorite thing in the entire world!

I noticed some bushes that were very overgrown so I got out the clippers and snuck two feet away from him to clip a few branches. Having a child with autism is like have a two year old all the time, you cannot leave them because you don't know what they will get into or where they will disappear to. There is no "me" time because you are always on watch and that makes things like simply trimming bushes two feet away from him difficult to do.

I could hear the basketball bouncing so I knew we were good...for a couple of minutes anyway.

Then I heard two basketballs...his brother, Zach who is 11, joined him.

Then I heard, "Braden, let's play baseball!"

Rats...I was going to have to stop trimming so I could help Braden play baseball.

So I hurried, I clipped fast and furiously so I could get as much done as possible while they got the wiffle balls and bats out.

And then it happened...the sound of Zach pitching and Braden hitting! Zach was telling Braden "Good hit Braden" and Braden was giggling.

I came around the corner and this is what I saw...

I gasped...took a picture and just stood and smiled.

It was happening....the dream I told my friend I wanted and was so sad we wouldn't get.

My boys playing baseball in the yard by themselves.

Holy smokes!!

As I watched smiling with tears running down my cheeks, they completely ignored me and switched places.

WHAT?

And they were sharing and taking turns voluntarily?

I didn't want anyone to pinch me because if I was asleep I did NOT want to be awakened.

And they kept playing for a long time!

Aren't they sweet and cute? (proud momma here)

I was able to go back to trimming the bushes, collecting the branches, and putting them in lawn sacks.

And that friends...has never happened in 9.5 years!

I went in the garage to put away the clippers and heard a loud scream and crying.

I freaked out!

Braden is only 66 days out of a bone marrow transplant. Zach was perfectly matched his bone marrow donor.

I SPRINTED outside and saw Braden crouched down on the drive way grabbing his eye. Zach was standing beside him trying to comfort him and crying too explaining that he had accidentally hit the wiffle ball into Braden's eye.

It left a mark.

A big, beautiful, red, swollen mark...

...that was an injury from playing baseball with his brother.

It wasn't from cancer.

It wasn't from the autism and not being safely supervised.

It was from playing baseball like every other kid.

It was "normal".

NORMAL!

That crazy red, swollen eye was a gift.

And they kept playing baseball. And  his eye was all better in about 10 minutes.

My dream came true! 

Maybe...just maybe...nothing is impossible...

HOPE!

The Short Bus...

Yes, if Braden rode a school bus, it would technically be what some people call “the short bus”.

I stopped being upset by that term years ago, but I still don’t like it. It doesn’t build people up…it does just the opposite.  

It’s just like the word “retarded”…I don’t get why people use that to be derogatory when it is so hurtful to people with children with low cognition.  

Not cool.

Braden had his “three year re-evaluation” and annual IEP a few days ago.  That’s always a big meeting because every three years, they have to “prove” that he still needs special education services and then target his new needs from the growth (or lack thereof) he has had in three years.

The report was sad because it pointed out so many things Braden Hofen is not good at, but it also is happy because it shows how far he has grown.

As a teacher and then Principal, I used to get frustrated when parents would act like the severe deficits we were showing them were no big deal and just more news. It felt like they were choosing to not accept the fact that their kids had those big deficits as they focused on “all the growth they have made”.

Well…

I get it now.

Hearing those deficits didn’t crush me;  I merely ignored them. I did read the report.

Most of it.

Sometime I got tired of hearing how bad things were and how poorly he scored, so I skipped those pieces after the first couple of sentences.

I get it…

He’s very delayed.

Extremely delayed.

And it’s their job to provide those data to show where he is currently functioning. Our team is FANTASTIC and I admire and value each and every one of them. They don’t mean any harm or to be negative or mean at all, just as I didn’t when I was in their shoes.

BUT…the Braden Hofen I know can do so much more than those tests showed. It’s just that we measure ability and strengths in one way…standardized tests and informal tests…common element of “tests”.

When he was three years old, when he was trying to say “mama” he would say, “ma…. And I would literally slowly count to 10…then came the second syllable….ma”  Now he talks non-stop at an appropriate pace!! AMAZING!!

He’s very delayed from his peers, I am not ignoring that and I’m not kidding myself but from when he started to where he is now…holy smokes!!  Just AMAZING!! 

I choose to focus on that!

I choose to focus on the gifts he brings….and I do get the deficits…but I want to make sure everyone else gets the amazing growth. Those deficits really ARE no big deal!

I “GET” it parents of mine from all the years I was in the Principal/Teacher seat. 

And I’m sorry I didn’t “get it” then!!

So much of what Braden knows is in his brain…it really is in there but his brain has a hard time outputting that information on a test.

And every time a parent used to tell me that I thought to myself, “You are in denial.  I appreciate that you believe in your child but we don’t see the same levels of functioning here that you are describing. Please listen to us when we tell you how far we have to go.”

So as I approached this meeting, I prepared for it.  I assumed they would roll their eyes, smile, pat me on the back and send me on my merry way. Which is kind of what happened.

Complete role reversal. 

Total 180 for me. And I had to laugh at the irony.

I had specific examples…so when they said that they were going to work on word problems with addition and subtraction and what a stretch that would be for him and how hard it was because of his delays and things that are not strengths…

I pulled out the book we had read the night before. One of the pages had three bowling pins lined up and one had fallen over.

Braden stopped me from turning the page and said “MOM!! Look!  There are three bowling pins, one fell over so take it away. How many are left?  Use your touch math!” 

Shock and awe…all around the room, well except for the three that knew him the best who just smiled and shook their heads in agreement.

Much of it is in there. 

I’m a realist, not everything is “in there”…but a lot more of it is there than we think.

The trick with autism is finding the way to unlock it to let it out so WE can see it.

Three years ago at his last re-eval meeting, I didn’t care what his goals were or what they wanted to do because I didn’t think he was going to live to see first grade. The words on that page didn’t matter.

I still don’t know that he’s going to be here for his next annual IEP or three year re-eval BUT…since he IS here and is in remission right now…we are hoping for it.

And we are continuing to search for ways to unlock all of that stuff and get it out.

He’s a bright boy. And we have a team that believes that he IS bright and capable and they won’t give up on him.

A mom can’t ask for more.

So no short bus for my B-Man….

I think he should have a stretch limo…

because to his momma,

he’s kind of a big deal!

TAKE THAT cANCER!

Holland...

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!
LOVE THESE LADIES!!

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!!

REALLY!

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!!!

CHILL!!!

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 transition...so 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.

"normalcy"

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"...

Life is about PERSPECTIVE, GRATITUDE, POSITIVITY and PARADIGM SHIFTS!

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

Change with it...adapt...embrace...like Tim Gunn would say,

"Make it work people!!"

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

HOLLAND

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!!

Deliece