Things about Autism you may not know

A friend of mine asked me today, "Seems that it [Autism] affects more kids than cancer, is that correct?"  My answer to her may shock you.  Did you know...
This year, more children will be diagnosed with autism spectrum disorder than AIDS, diabetes and cancer combined.
I know, right?!
**Autism now affects 1 in 88 children and 1 in 54 boys.  That means more kids on the spectrum compared to type 1 diabetes – 1 in 400; childhood cancer – 1 in 2,000; and cystic fibrosis – 1 in 3,500.  Yet Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
It 2012 the total NIH (National Institutes of Health Funds Allocation) budget was $30.86 billion.  Of this, only $169 million goes directly to autism research. This represents 0.55% of total NIH funding!!
Autism prevalence figures are growing.  

• It is the fastest-growing serious developmental disability in the U.S.  
• It costs a family $60,000 a year on average.  
• Boys are nearly five times more likely than girls to have autism.  
• There is no medical detection or cure for autism**

When asked what my thoughts are on what causes Autism, I say this; to me, the cause is irrelevant because it will not change his diagnosis.  I have my theories (vaccines is not one I believe), but something definitely needs to be done to prevent more children and families from being diagnosed.  What I need to see at this point is a cure, but with funding so low, how will we ever see the day Autism is cured or prevented.  This is why AWARENESS is so important.  And this means kids too!!  Kids need to be aware and taught tolerance, compassion, patience and understanding.  Because MY kids will grow up with neurotypical kids.  And so will many more kids on the spectrum.

**resource:  Autism Speaks website

This too shall pass...

Honestly I don't know what it is.  I don't know if it's the holiday rush, the excitement of the holiday season, sensory overload or what, but 'Milo has not been a very good listener at all.  Last Monday he started being distracting at school again and was on and off all week, but on Friday he called a boy in his class a loser...not once, but TWICE!  Even after being talked to about it the first time.  Over the weekend we had planned to go see the Dino movie on Sunday.  Just me and him since little bro has no interest in the movie.  But with that going on at school on Friday I told him if he kept acting up we wouldn't go to the movies. Saturday he was OK; still being loud and very silly.  Don't get me wrong, I'm all for being silly, but when it gets to the point of not listening and calling everyone names (me included), it's not OK.  And I'm no push over when it come to this stuff.  I love my kids, we have fun, I'm very affectionate with both of them, but I am stern when it comes to this behavior.  If I say I'm going to take away games or toys because of behavior, I stick to it.  If it's time out, then time out it is.  I'm rarely lenient with this stuff.  Saturday night I reminded him again and by Sunday morning I came to the conclusion we would not be going to the show.   I was still going to take the little to grandma's for his lunch date with her, but me and 'Milo came back to the house and did chores.  I felt horrible, but I stuck to my guns.  He knew I was upset.  I didn't say much to him, told him to make his bed and left his room.  Sometimes silence is louder than words and more effective than a heavy hand.  I limited my interaction to just answering his questions with short answers.  He was settling down and apologized for behaving badly.  By the evening he was getting noisy and acting up again.  I had to remind him again and ended up taking away Legos.  He seems a little settled again today so hopefully after this holiday bustle he stop bouncing off the walls!

The road ahead

During the evaluation on Wednesday it was suggested that ‘Milo’s pickiness to food was a behavior issue and not necessarily a sensory issue.  They said it may be a behavior he learned to get what he wants.  I have my doubts about that; parents usually know their kids best, but I am not oppose to trying techniques they suggest if it helps him overcome his food issues, whatever it may be.  This is the process I am most concerned about.  How will he react?  How much will they push him?  When will they know if they are right or wrong?  I know that kids react differently to different people, even differently when it’s mom or dad.  I am loving and caring, but strict.  I give hugs and kisses, but also discipline.  I know he is aware of right and wrong.  Just the other day ‘Milo’s teach said he was very disruptive in class.  Especially during singing practicing.  He said 'Milo was laughing and being very silly.  When I got home I told ‘Milo that I was not happy with his behavior in class.  I said when his is distracting that it keeps the other kids from focusing on their work and learning.  I told him he needed to write an apology letter to his teacher.  He did.  He wrote he was sorry for not behaving in class, and he gave the letter to the teacher the next day.  He came home that day and the teacher had said he had an EXCELLENT day.  He was very impressed with his behavior.  Things like this tell me that he is aware and can get thru the day exercising appropriate behavior.  I have no doubt that some of these issues are behavior… as I told the people we met with, afterall he is a 9 year old boy.  But I also want to give him the benefit of the doubt and I don’t make a practice of using Autism as an “excuse” for him to run a muck.  ‘Milo has great potential I know it.  I’ve seen it.  I am sure that some of these actions out of frustration happens so fast that before he’s realizes it he’s made a mess or starts to meltdown because he will say after, “I hate it when I’m crazy”.  And at those moments I tell him, “you’re not crazy.  You just need a better way to work out your frustration and learn to calm yourself”.
Thursday when I got home from work the first thing he asked was if he could check his dinos on the iPad.  My mom said, “you have to see his room”.  He had had time out and did not like that and proceeded to throw toys all over his room.  I told him that he would have clean his room and finish his homework before checking his dinos.  He did.  He also told grandma “I genuine apologize for not behaving”.  (smile)  Later that night I talked to him a bit about the meeting we had with CARD (which ‘Milo was required to attend) and I told him that people will be coming to the house to help us figure out a way to work thru those times he’s frustrated.    I told him that they would also be helping him to try new foods… he made a little face and I said this will be a good thing.  I told him it will be good for all of us so we can all learn to help him work thru times that make him upset or frustrated.  He smiled and said OK.  I’m expecting this is going to be a rough road.  The people we met with on Wednesday said it could very well get worse before it gets better because they expect him to be resistant to change.  I think that is the part that weighs on my heart the most, is that he may/will get upset.  I am trying to stay positive and hope this will not be as hard as I am making it out to be in my head.

And so it begins....

ABA process is in the works.  Below is some info on what exactly this is, but in short, a team will come to the house for observation and help strategize to reduce problematic behavior.  Many of you who know 'Milo personally may say, he's well behaved and well mannered.  I do not disagree, when we are out he does very well.  His social skills have improved so much and his interaction with people is great.  Other than making direct eye contact, he does well holding a conversation now.  But at home when there are things that he is struggling with or just challenging authority (as all kids do at times) it can lead to meltdowns, excitability, uncontrollable laughter or lack of focus.  As a parent, it can fell like YOUR under the microscope.  YOUR parenting skills are not up to par.  YOU need to learn how to control you kids from outsiders who don't even know you.  But it really isn't' about the parents, so you have to really not take it personally.  Trust me, I know I'm a good mom.  And part of being a good parent is knowing when to be vulnerable and allowing others to help.  Both my kids are respectful, polite, and well behaved, this I know.  This is not a decision I made lightly, there is a lot of commitment in this.   I have struggled for the last two years wondering if this is the right thing.  At this time, I feel it is. 

ABA RESOURCES: WHAT IS ABA?

What is ABA TherapyBehavior Analysis is the scientific study of behavior. Applied Behavior Analysis (ABA) is the application of the principles of learning and motivation from Behavior Analysis, and the procedures and technology derived from those principles, to the solution of problems of social significance. Many decades of research have validated treatments based on ABA.

The Report of the MADSEC Autism Task Force (2000) provides a succinct description, put together by an independent body of experts:

Over the past 40 years, several thousand published research studies have documented the effectiveness of ABA across a wide range of:

    populations (children and adults with mental illness, developmental disabilities and learning disorders)
    interventionists (parents, teachers and staff)
    settings (schools, homes, institutions, group homes, hospitals and business offices), and
    behaviors (language; social, academic, leisure and functional life skills; aggression, selfinjury, oppositional and stereotyped behaviors)

Applied behavior analysis is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior (Baer, Wolf & Risley, 1968; Sulzer-Azaroff & Mayer, 1991). **resource: CARD website**