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August, 2011:

Sail On, Sail On, Sail On…

Hopefully, as the school year is getting to a start, changes are being made in your schedules and life is abuzz, you are doing well.  For families on the autism spectrum, change is not usually met without difficulty.  Many children do not do well with change and that is even more true for us.  Having said that, we press on because we have hope, belief and faith that these transitions can open up doors for our children and our families.

We have 5 children and homeschool our oldest, whom is 11 years old.  Today we cracked open our English book and ventured on a new journey.  The opening poem, about perseverance, I believe rings true for our families, also.  And so with that, I leave you with this poem.  I KNOW the light at the end is brighter, bigger and more than we could ever imagine.

Columbus

by Joaquin Miller

 

BEHIND him lay the gray Azores,
Behind the Gates of Hercules;
Before him not the ghost of shores,
Before him only shoreless seas.

The good mate said: “Now must we pray,
For lo! the very stars are gone.
Brave Admiral, speak, what shall I say?”
“Why, say, ‘Sail on! sail on! and on!’”

“My men grow mutinous day by day;
My men grow ghastly wan and weak.”
The stout mate thought of home; a spray
Of salt wave washed his swarthy cheek.

“What shall I say, brave Admiral, say,
If we sight naught but seas at dawn?”
“Why, you shall say at break of day,
‘Sail on! sail on! sail on! and on!’”

They sailed and sailed, as winds might blow,
Until at last the blanched mate said:
“Why, now not even God would know
Should I and all my men fall dead.

These very winds forget their way,
For God from these dread seas is gone.
Now speak, brave Admiral, speak and say”—
He said: “Sail on! sail on! and on!”

They sailed. They sailed. Then spake the mate:
“This mad sea shows his teeth to-night.
He curls his lip, he lies in wait,
With lifted teeth, as if to bite!

Brave Admiral, say but one good word:
What shall we do when hope is gone?”
The words leapt like a leaping sword:
“Sail on! sail on! sail on! and on!”

Then, pale and worn, he kept his deck,
And peered through darkness. Ah, that night
Of all dark nights! And then a speck—
A light! A light! A light! A light!

It grew, a starlit flag unfurled!
It grew to be Time’s burst of dawn.
He gained a world; he gave that world
Its grandest lesson: “On! sail on!”

 

The beginning of a new school year- with autism…

I received an e-mail today, from the principal at the Catholic school where my 9 year old will attend this year.  Now, you need to understand that this child had to be taught to walk and talk and has attended at ABA school for the past two years.  A year and a half ago, she could not read- at all- and was too overwhelmed to be a classroom with more that 4 or 5 children.  But in one week she will attend private school, all day, with minimal accomadations, AT Grade Level.  I could not be more excited for her.

So, I received an e-mail from the principal, after they tested her last week, that she would be in 4th grade for almost all subjects and they would simply split grade her for a couple classes.  They can’t wait to have her and she can’t wait to have them.

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So this is to all the parents out there, who go day to day, not seeing the milestones…. not seeing the strides… wondering if their child will ever make it in this world.  Keep doing what you are doing!  Whether your child simply learns to type, “I love you,” or learns to ride a bike or ends up solving all the political battles, one day, that hold our kids back….  you are making a very big difference for your children.

I wish each of you a wonderful start to another year full of joy, tears, blessings and prayers… little steps and giant ones and most of all, I wish you those quiet moments when you can look back and know that YOU are making a difference.

 

 

Autism Advocates

As many of you know, we have 5 beautiful children, three of whom are on the autism spectrum.  We are not rare in that 1 in 91 children are now considered to be on the autism spectrum.  We are also not rare in that many families have more than one child on the autism spectrum.  And, I will go one step further and say that we do not believe that I am not rare in that I will do ANYTHING necessary to reclaim our children.

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It was about 8 years ago, when our third daughter was just 9 months old, that we realized something was not right.  She had been our healthiest pregnancy and nursed better than any of our other children, yet she was failing to make her milestones.  By 10 months old, she was screaming everyday in pain, from digestive issues.  While she would not be formally diagnosed on the autism spectrum for several years, we set on a coarse to help heal what we simply believed to be digestive issues.  As a nutrition consultant, that much I could handle.

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Autism, however, stumped me.  I had done childcare for a child with autism, as a college student, but the diagnosis for our daughter left me numb and screaming, “Where is my manual?  Where is my guidebook?  What do you mean there is nothing you OR I can do?”  I am a fixer by nature.  More than anything, it really hit me that so many families were battling the day by day battle ground that we know as autism with NO guidance.  I have all kinds of beliefs, now, on why that guidance is NOT there and not coming anytime soon from the government or the medical community; however, that is a book that has already been written by others.  (Read them all!)

Out of this frustration, came a determination, on our part (my wonderful husband, Chris and myself) to help families (and the medical community), help children with autism.  Over the past few months, we have be laying the ground work for an Autism Advocacy Program that will enable us to take the programs we do for families and train other advocates to do the same.  Ideally, we are looking for parents who have a child on the autism spectrum, have had a diagnosis for at least one year and who believe that children and families can begin or continue to heal.  We are very committed to keeping families intact and empowering families to break down the doors that we know as autism.

If you or someone you know are interested in learning more about becoming an Autism Consultant/ Advocate, we would love to hear from you.  Please drop us a note at www.asdperspectives.com to get on our information list for our next conference call, info session or to set up a personal time to talk.   If you are a parent and would like more information about consulting, please feel free to contact us, also.

Difficult transitions….

My 6 year old is an interesting child.  She can be the sweetest child one moment and the meanest the next.  The fact of the matter is that she cannot handle change…

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It took us quite awhile to figure out exactly what was going on with her.  She would walk up to strangers in an airport and pinch them… slam doors on people coming to visit after our youngest was born and has the most interesting love/ hate relationship with people who have any meaning to her.  We actually have to warn sitters that she will hate them when they arrive and hate them when they leave, but be their best friend every minute that they are at our home.

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Clearly this is a difficulty for people who love her the most, like aunts, grandparents and even babysitters.  We have found that the best way to handle this issue is to prepare people who come into our home.  I am always amused at the people who simply try to tell her that she is being unkind.  Please don’t misunderstand.  Of coarse we tell her that she needs to be kind and try to help her adapt; however, what she really needs is time.  After all, as an adult, I do not necessarily like situations that I consider threatening.  For our daughter, she has an even bigger issue.  At 16 months old, she was diagnosed with Juvenile Diabetes.  In a matter of hours, she went from complete security to a world of needles, insulin, doctors and hospitals.  She never really quite knows whether someone is coming to hurt her or love her…

Over the years, we have made progress.  She no longer pinches strangers, hits friends and can better regulate her reactions to others.  We can once again have guests over for birthday parties and most of our sitters and family are now prepared for the greetings and goodbyes.  I imagine this will continue to be a process as she gets older and look forward to the day we can look back at this and laugh.

How do you handle change and trust for your child?  We would love to hear your techniques.