To “Cure” or not to “Cure” – That is the question

**REPOST** But since Autism Awareness month is coming up…why not?

This is a subject that I’ve debated blogging about for quite a while.  Semantics aside, there is an intensely passionate volley of opinions to do with this issue.

Sometimes, I am pretty sure where I stand on this debate of whether to use the term “cure” autism or not.

Other times, I have no freaking idea.

Here’s what I am sure about.

Everyone is entitled to their own opinion, feelings, thoughts and ideas.  To judge someone based on these things, to me, really makes no sense.

How can one judge when one hasn’t seen, heard or felt the same?  This is what I base my opinions on.

Ronan has had his own unique path through autism spectrum, and we as parents and family have traveled our own, too.

What exactly is this “autism spectrum” anyway?  Is most of it a form of unique personality? Is it a neurological disorder/disability/assault/ damage?????  These are things I ponder on a daily basis.

When I think about “cure”, what comes to mind immediately is, “would this end anxiety,  stress, discomfort in social situations, the difficulty expressing what HE IS FEELING to the point of extreme and utter meltdown, and would he be saved one minute of frustration or sadness?

Would this help with his digestive distress?  His auto-immune sensitivity?  Would this be something that would give him the confidence to relate to others if he really wanted to, but was afraid to because he didn’t exactly seem to know where to find the words?

In opposition, would this be something that would take away his beautiful artistic expression?

Would it eliminate his insane word-decoding ability?  Would he be indifferent to the funny and quirky things that make him laugh for two hours now (and I’m sorry, but I love this about him!)?

Would it take away his beautiful, intricate vision on life, people and music?

Would his IQ drop below genius level?

Would he be another Ronan with less defining characteristics, or the same Ronan with less pain?

I wonder about all of these things.

But what I do know.  What I’m sure of…

I want him to have the choice.

Ro, in a rare moment where he is actually not awake and blissfully unaware of this debate. "Let me sleep, fools!"

Advertisements

BOUNCE FOR AUTISM!

The Autism Society is sponsoring these events at Pump It Up for Autism Awareness Month.  Ro LOVES Pump It Up!  Cool way to raise money for autism awareness.  Hopefully, it goes to the right place – it’s getting harder and harder to make sure that your hard-earned dollars are going to where they should with charities.

Anyway, at least it brings awareness to a good cause.  Click below.

http://www.autism-society.org/site/PageServer?pagename=bounce_landing

IT’S A START

Too bad it’s too late for us with that fourth bullet point, but at least things are moving in the right direction.

Now, can we PLEASE pass the bill in ALL states to require insurance to pay for autism therapies!!?!??

Here’s The Autism Society’s article on the health care reform and how it will affect those with autism concerns…

Click…

http://www.autism-society.org/site/News2?page=NewsArticle&id=15849&news_iv_ctrl=2182

Inclusion -Mama Needs You to See This, Now!

**UPDATE:  THIS IS A REPOST FROM AROUND THE SAME TIME LAST YEAR.  I JUST LOVE THIS DOCU SO MUCH, THAT I HAD TO GIVE IT PROPS AGAIN**

I always say that I haven’t slept for seven years.  I was so excited when I got pregnant with Ronan, that I had a really hard time catching some Zzzs.  When I had him…well, that was another post entitled, FOR THE LOVE OF GOD, WHEN WILL THIS CHILD SLEEP!?

It’s seven years later, and my Brain 2000 still can’t sleep.  I put both of the boys to bed last night, and when I finally got to my room, it was around 11pm.

Mama needs wind-down time, so I put on the tele and started flipping.  I paused on the New Hampshire public television station, because I spotted what looked to be a documentary-type program about children, and Mama is a sucker for those.

What followed were two hours of wide-eyed, edge-of-the-bed sobbing, laughing and nodding in agreement from Mama.

Ronan’s IEP for next year is coming up in June.  He will be starting first grade at a new school, and I am TERRIFIED.  It’s so hard to explain to other people who are not in this situation how agonizingly difficult this is trying to navigate what is best for my child with Autism, in all arenas.

Education, therapy, social skills, speech, ot, pt, ABA, Floortime, inclusion, partial inclusion, aides, 1:1 aides, 1:2, 1:3, or 1:not enough aides, different schools apart from friends he has made for four years because there isn’t a good enough program at the other school, transitions that may or may not be supported by administration the way Mama thinks will be best for Ro, depending on whether or not you ask, or don’t ask the right way, or get the right advocate or lawyer or BCBA or FBA or after school/ home-school hours and therapists (not BABYSITTERS) and the wait is TOO LONG at OTA…when is the extra speech coming that BC/BS will allow at $20 per session for only 20 times a YEAR!!!

And the financial strains from the biomed route, Whole Foods owns my paychecks, and I worry about every little thing that goes into his body…do I need to do GF/CF, everything F again?  Does he have yeast, bacteria, immuno-compromise, vitamin/mineral absorbtion deficiencies, phenol or mito problems, intolerances to foods, mold, environmental toxins, viruses, and what about VACCINES?????  And why aren’t the therapies he NEEDS covered by INSURANCE??  Come on, Barack, when will they pass that BILL??!!!!  Will L-tryptophan or melatonin or 5-htp help him sleep, or will he always be a night owl, with circles under his eyes, and exhaused 4 out of 7 days????  Am I doing the right things, enough things, do I need to be engaging him right NOW, or more times a day, and what would Stanley Greenspan say while I am typing on the computer and he is stimming while jumping on his bed, and am I a horrible autism Mom because I have my own spectrum issues????

pauuuussssseeeee….

This is just a 5 minute sampling of what Mama brain ponders on a daily basis.

I am not trying to dumb down what other parents go through with their kids, with any kids.  It’s all tough.  Every child has their own issues, and every parent is tested and pushed to the limits.  But this documentary really opened my eyes in another way, even though we’ve been immersed in the special needs world for 7 years…I think I saw more of Ronan’s side -separate from myself.  It’s that good.  And it needs to be seen by Mrs. C. (who has always been a huge advocate for the inclusion piece), Mr. F., Mrs. Superintendent, and every other person who advocates or should advocate for these kids, for all kids.

This is a society that consists of all types of individuals as adults.  What sense does it make to segregate one group from the other while being educated as children?  What are we saying with that?  How are these kids supposed to function after they are thrust into the world at 18 years old, without the skills they need to function???

We have been VERY fortunate to have found such WONDERFUL and caring and educated individuals to nurture and teach Ro for these past few years…but I am very afraid of what lies ahead.

This documentary gave me a little more hope…and I really wish that it would have the same impact on our little circle and all around…

www.includingsamuel.com

I am buying a copy, and I am giving one to all of his teachers, principals and administrators.

Huge kudos to Dan Habib for creating such a moving, informative and mind-altering look into his and other’s thoughts about his beautiful son and other lovely deserving individuals with special needs.

Here’s the youtube synopsis…

http://www.youtube.com/watch?v=Xfg1pswiOgM

Samuel Dan airplane

p.s. How beautiful are Habib’s two boys???  I, being a Mama of two boys, was especially touched by the relationship between Samuel and Isaiah.  I really believe that Ronan and Loudon will have the same love bond (they really already do!) that made me sob in this docu.

**UPDATE**  They are airing it tonight on NHPTV at 10:30 pm!  I am watching it again!!!

NAC’s National Standards Report

Another interesting read on National Autism Center’s National Standards Project – read their description below and then click the link at the bottom to download the PDF.

The National Autism Center is pleased to announce the completion of the National Standards Project and the publication of the National Standards Report. Click here to see the results!

The National Standards Project answers one of the most pressing public health questions of our time — how do we effectively treat individuals with Autism Spectrum Disorders (ASD)?

The National Autism Center launched the project in 2005 with the support and guidance of an expert panel composed of nationally recognized scholars, researchers, and other leaders representing diverse fields of study. The culmination of this rigorous multi-year project is the National Standards Report, the most comprehensive analysis available to date about treatments for children and adolescents with ASD.

http://www.nationalautismcenter.org/affiliates/

SCERTS = Interesting!

Description from the SCERTS website (click link below).   Sounds really interesting!  Mama has to investigate more.

The SCERTS® Model is a research-based educational approach and multidisciplinary framework that directly addresses the core challenges faced by children and persons with ASD and related disabilities, and their families. SCERTS® focuses on building competence in Social Communication, Emotional Regulation and Transactional Support as the highest priorities that must be addressed in any program, and is applicable for individuals with a wide range of abilities and ages across home, school and community settings.

http://scerts.com/

Behavioral and Disorder. Two Words that Don’t Belong with Autism.

Mama does not like the words “behaivoral” or “disorder.”  It’s time to smack those negative associations down when referring to autism.  Smack them down!!!  lol

You would be surprised at how many people still think of autism as a behavioral disorder, a mental illness or even refer to autism using the “R” word – which Mama hates SO much, that I won’t even reproduce it in reference for you – you can figure it out, I’m sure.  I tell people this all the time, and they are always surprised – Autism is a NEUROLOGICAL condition.   Yes.

Snackie and I were having a long discussion while watching the Oscars the other night (which I thought were really good this year, but that’s for another post) and we were griping about how even the words “Autism Spectrum Disorder” have such negative connotation to them.  We need to come up with another way to talk about this!

I’m not saying autism is a walk in the park for anyone touched by it, but the way some view the words associated with the labels, the depreciating way that someone with autism is sometimes viewed – well, Mama doesn’t like that!  I’m sure other individuals with autism don’t love it either.

First, we need to throw “disorder” out.  Does this mean that any pain suffered by those with autism or their families should be discounted?  No, but we don’t say Cancer Disorder, do we.  The person who has the cancer is not defective, it’s the cancer itself that is causing the pain.

Then, even the word autism is looked at in a negative light.  Like Mama said, so many people have no idea what autism really is, and they just assume that this means a child with a behavioral problem, or that the child is that stupid “R” word.  They assume that they are intellectually “less than.”  And Mama doesn’t like that reference for anyone, regardless of whatever “label” that individual has been “crowned with” from our society.

We ended up enjoying “Spectrum Processing.”  We thought it was important for the individual with autism to be able to categorize their challenges for themselves, but by doing so in a way that wouldn’t depreciate them.

Scientist Carl thinks that we should add another word to make it an even three-letter acronym, like HBP or ESP, because it’s easier for people to reference that way.

Mama has to think more about that one.  Hmm.

Click the link below for a good site to dispel some autism myths…

http://www.ninds.nih.gov/disorders/autism/detail_autism.htm

Previous Older Entries