Saturday, May 4, 2013

Our Story

 I have been the wife of a wonderful man for 19 years and a Christian for 17 years.  We have been blessed with 3 beautiful boys, that I have the opportunity to home school.  Our youngest son, George, was born with Down syndrome and we could not imagine life without him.

 From the time we found out George had Down syndrome, I quickly went into research mode checking into all the health issues involved, therapies and strategies we could use to help him be his best.  I have tried many things to help him including medical intervention, early intervention therapies, natural therapies, diet interventions and early learning approaches.  Once I realized George was not being held back by Down syndrome issues so much as his autistic issues, then my focus had to change.  The list of behaviors that the world calls autism became the number one focus for me.  I know if I can help him with his autistic behaviors and sensory issues, then I can reach him and teach him.

My background is Elementary Education, but I am also a researcher and love to learn.  I have been fascinated with natural health since 1996.  I am always looking at ways to improve the quality of our lives and those around me.  I had been interested in the rise in autism way before George was born, but didn't imagine it would ever personally affect me.  I have my own theories as to why we have this epidemic and I believe there are numerous ways to treat it.  It is about finding the way that works for your child.  I have seen kids totally recover from it, not just manage it.  So I know it is POSSIBLE.  

My research led me to the Son-Rise program in Massachusetts, where they have a large Autism Treatment Center.  They have been working with families for decades now with great success.  Certain things about their program made them unreachable for our family at this time, such as having to fly out for a 5 day intensive training.

More research lead me to Julie Sando.  She is the director of a company in California called Autistically Inclined.  She is a Natural Play Therapy Family Coach.  She actually volunteered in a child's Son-Rise program for several years.  She wanted to be a graphic designer, but working with a special child changed her whole course of life.  She trained at Son-Rise in Massachusetts for nearly 7 years.  I was drawn to her approach for many reasons.  One reason was because she works with the whole family.  She helps all family members relate better with each other and with the special needs child.  Her program "fits" our family.  I experimented with some of the techniques with George and he responds beautifully.   I want him to have this experience all day with a variety of people, so he can learn that people are unique and more fun than being in his own world.  Really what is life without our relationships? 

What is having a child with autistic behaviors like?  All children are different, but here is an idea.  Many parents see a quick or sometimes a gradual regression.  This means at one point their child seemed perfectly typical, then all of a sudden they were gone, some even expressionless, losing any skills they may have had before like being potty trained or speaking.  Imagine caring for your child 24/7 and not knowing if they really even know who you are and wondering if you will ever hear the words mama or dada.  They don't respond to their name and they don't treat you much different than a stranger they may meet.  It is as if you are just someone who feeds them and takes care of them.  People wave and smile at them in public and they totally ignore them, not making eye contact at all or really even acknowledging them.  They don't know how to "play" with toys or anyone.  They can't speak so they may make frustrating noises all day and you don't know what they need.  It is hard to teach them sign language or anything because they don't look at you or know how to mimic you.

I have tried to teach George for over 2+ years to touch his head, noes, etc....He will look at me as if to say, "I know where my head is but I can't make myself respond to touch it!."  It is literally like he is trapped in his body.  I remember thinking this early on and the first time I heard a boy tell about his experience when he "was" autistic he said the exact same thing that he was trapped in his own body.  It is a heart breaking thing to witness.

When children don't get the help they need their behaviors may even become violent and they may get to a point where their parents can no longer care for them.  The CDC admitted this year that the current rate for autism is now 1 in 50!  This is a huge statistic and affecting so many families. 

Many people may not be aware of this epidemic, because most times these parents are pretty isolated in that for them to go places with their child it is very stressful for everyone.  People with autism receive much different sensory information than we do.

For George certain noises really upset him like laughing or crying.  It is as if it is painful for him.  He also gets over stimulated visually and will start shaking his head a lot when this happens.  He throws objects to stimulate his peripheral vision as well.  It is getting much harder to take him places the bigger he gets.  He runs off with no concept of fear. 

During the last 5 years many of my friends and family have wanted to help me/us.  Being able to verbalize the help we really needed and then being able to accept it, was a huge obstacle for me.  Now I realize that this whole project can be a blessing to so many others.  Not only can it give George a chance to be the best he can be, but it will help educate others on the possibilities for their children with autism.  Also, anyone who is able to volunteer locally will be enriched by the whole experience and come away with a valuable skill, learning how to connect with a person with autism, brain injury etc... and even being able to totally recover someone.  This will be huge in the world we live in today!

2 comments:

  1. Hi Yvonne,

    Wonderful blog post! I can't believe how much George has grown since I last saw him!

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    Replies
    1. Thanks Vixie. The blog world is new for me! I still have a lot to learn. I don't see George's growth as much as others who have not seen him in awhile. I do know he is a lot heavier, I feel that daily!

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