An Open Video Letter to Important People

Dear MN State Representatives, Senators, Governor Dayton, and anyone else who can help,

Hello!  I apologize in advance for the impersonal nature of this open letter.  I promise you, I don't mean it to be.  Indeed, this is an intensely personal letter, the contents of which not only matter to our family but to thousands of Minnesota families.

Minnesota families dealing with autism.

There is so much to know and understand about autism.  I cannot possibly explain it all.  You can check out some definitions and information by clicking HERE.  You can check out what is happening nationally about autism coverage and insurance reform HERE.  You can see where we are in the State of Minnesota HERE.

But all of this is just words and data.

This is J-man.

My son.  He is beautiful, good natured, and so incredibly smart.  He also has autism and apraxia of speech.  His brand of autism makes using language and forming words incredibly hard.  He often does not pay attention to social information and processes language and words differently than others.  He play appropriately with toys but not people.  His use of language is extremely delayed.

Autism and apraxia are both neurological conditions.  Without getting into a lot of detail, what we know about J-man's autism and apraxia is this: Each area of J-man's brain appears to be functioning normally, but that the organization between those areas and the way they communicate with each other is not.  He has difficulty forming words because the areas that control speech and the areas that control motor movements for speech don't "talk" to each other very well.  The areas emotions come from is not well regulated by the prefrontal cortex, which allows for excutitve functioning and 'control'.  He avoids social input because it is confusing, frustrating, and he has real difficulty using language to communicate.

One way to help organize these different areas of the brain is through an intensive early intervention behavioral therapy (IEIBT) regime.  It is also often known as ABA or Applied Behavioral Analysis. ABA/ IEIBT involve intensive 'training' and shaping of behavior.  This approach allows the brain to better develop those pathways between areas of the brain.  When that communication gets better, so does his functioning.  And his brain... this bright, brilliant brain... can interact with the world in a meaningful way.

We started J-man in ABA/IEIBT therapy in June of 2010.  He was 4 1/2 years old.  Up until that point, we had been doing speech and occupational therapy twice a week, early intervention via the school district (which was a sad state of affairs), and at home therapy.  And by "at home therapy", I mean I read some books and worked with him at home.  We had made some slow progress.

He didn't use his first word until 2 1/2 years old.
He didn't use language to actually communicate until after 3 1/2 years old.
At 3 years 11 months old (December 2010)... a little over a year ago... this is a pretty typical example of his communication:

No intelligible words and very little in the way of meaningful conversation.  And he was nearly 4.

Here he was in June 2011.  This was at about the time we started him at his intensive autism therapy program.  He is now using 2 words to communicate, but the communication is very immature and awkward.  The first words you will hear are at minute 1:30.  This is about as much communication and engagement that he would show on any kind of regular basis.

(What he is saying is "more puppy", referring to the movie.)

J-man has been in the program for nearly 7 months.  He started going for about 24 hours a week at first, and this fall we had him start going 40 hours a week.  When he started, he had 1-2 word sentences, an extremely limited vocabulary, was still in diapers (4 1/2 yrs old!), and could not really dress himself.  He would run into traffic or wander away if we didn't watch him every minute.  He couldn't say his own name.

This is J-man today.

November 2011 (6 months after starting)

Engaged in use of multiple words and negotiation.  And real communication.

And this, December 2011:

Trying to use words to communicate.   Apraxia is still a huge issue, making his speech very difficult to understand.  He is trying to tell us about how we are going to watch Netflix, then go to Target, and he tries to describe a scene from Power Rangers.  Oh, and yeah... demonstrating his ability to read (SELF TAUGHT).

And this, two weeks ago:

Did ABA/IEIBT teach him to read?  No, it didn't.  J-man taught himself.  ABA/IEIBT allowed him to develop the communication skills to be able to show us how incredible he is.  How capable and intelligent.  His language deficits and his social withdrawal kept him being able to show us how amazing he is.

He is potty trained.
He is safer.  He will stay with us and would now stop instead of running into traffic.
He can say his own name.
Oh, and did I mention... he can READ!

These skills effect everything...  future education, future employment, future social and emotional life.

This therapy works.  Period.  To deny a child the opportunity to get proper, evidence-based therapy that could impact the rest of their life is wrong.  Dare I say immoral?  We owe it to these children to give them every opportunity to have what J-man has.  

J-man turns 5 next month, and if you would have asked me a year ago if we would be where we are today, I would not have been able to say yes.  Now, I know, he will go to kindergarten and be successful.  I know it in my soul.  Please, give other families the opportunity to feel this too.

Pass legislation that requires insurance to cover ABA/IEIBT.  Do not allow insurance companies to discriminate against this neurological condition known as autism.  BCBS has now taken it away from over 200 families.  Other insurance companies refuse to cover it.  Do not allow this to happen.


Pia Prenevost
Mom to the Amazing J-man

PS:  Feel free to contact me at any time.  I am happy to speak more about this topic.  And if you want to hear more about J-man, just check out my blog anytime!

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