parenting · special needs parenting

I am Asking You To Stand With Us In Solidarity

 

I have diligently tried to avoid political commentary.  I have plenty to fill my plate with caring for my children, but I simply cannot be quiet today.

Three is a significant number in many types of number studies, including Biblical.  A trifecta is considered a “perfect bet”.

Friends, we have a trifecta against my family.  I quietly called my Senators when Betsy DeVos demurred about IDEA, the law that protects my boys, and every child with a 504 or IEP in the United States.  I wrote an article about my concern about the ACA repeal without replacement and my concerns about how that will affect my family and many others with children who have complex medical needs.  It was conciliatory in tone, intended to generate conversation rather than make a bold statement.

Today I am not conciliatory.

I am sick, literally sick, this morning as I see the third strike against my family.  Trump’s team has disabled the disabilities portion of the White House website.

I can no  longer watch, I can no longer just make phone calls to my Congressional leaders to express my concern.  I can no longer use a conciliatory tone.

I am a fierce advocate for my children.  I don’t make a habit of making mountains out of molehills, rather, I use a calm and deliberate demeanor in order to give weight to my words.  I use persuasion and data to make my point rather than raising my voice to be heard above the crowd.  Today my tone remains measured, but my hands shake as I type.

Every single success I have enjoyed while advocating for my children has been based upon the foundation that has been built-in this country that says that people with disabilities are valuable members of society.  They enjoy legal protection which empowers them to succeed in school and work, and become the most productive people they can be.  It’s not too many years ago that newborns with Down syndrome were sent away to institutions and given zero chance of becoming a member of society.  It was parents that took the steps to make the changes that have given my children the opportunities they have to be educated and given medical care without exorbitant expense to their families.

I am not prepared to lose those opportunities.

I am going to fight, tooth and nail to keep them.

And I’m asking you to join me.

If you have ever said a prayer for Ben while he was sick.

If you have ever “liked” a photo of one of my children.

If their antics have made you smile.

If you want to see them continue to succeed and grow.

If you want Ben to continue to get healthcare that has saved his life a few times over.

I ask you please, stand by me, stand by my children, my family.  Contact your Senator, contact your representative.  Whether you’re Democrat, Republican, Independent, Green, Libertarian, or lean in any other direction, I ask for your solidarity on this issue.

Because right now I’m terrified for the future of my family. 

 

 

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3 thoughts on “I am Asking You To Stand With Us In Solidarity

  1. I share your fears. My son was born in 1971 before IDEA was passed and he was in the first class of children to go through the program. I had to fight for everything he needed, and now more than 20 years after he graduated from high school, I still here stories of parents struggles that sound just like mine. His education I fought so hard for has made all the difference in the progress he has made. And to have a Secretary of Education who has no idea of what the struggle is for parents to get an appropriate education for their child, or what constitutes an appropriate education, is not fit to be the Secretary of Education. So On Saturday, I will be protesting with others here in Holland, Michigan, where she has a home,

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  2. The government has no right to be doing this to education of children with disabilities because there are lives are already hard enough for them.

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