Wednesday, January 25, 2017

My Wish for You

Yesterday was a punch in the gut.

I want to write happy.

You have no idea how badly I want to write happy.

But right now I'm afraid.

As the mother of a child with rather intensive special needs I'm actually terrified.

I've been told I shouldn't be.  I was told after the election that there was nothing to worry about. That my fears were baseless.  The conservatives love life and wouldn't hurt the disabled.

People said I was liberal.

As in "look at these stupid liberals who get all their news from MSNBC and wouldn't know the truth if it hit them upside the head."

Which made me laugh.  Sadly.

I had actually voted a straight Republican ticket for years. I was on the board of our Republican Women's group in the county I lived in before we moved out of California.  I've posed for pictures with Republican congressmen.  I've been vocal about being against abortion. And MSNBC?  I don't think I've watched that in over a decade.  We don't actually have cable.

When Tessie was in the hospital I found that CSPAN was the only channel I could stomach, and then only barely.

I watched as the future Secretary of Education said that she thought that choosing to educate children with special needs should be left to the states.  When she was corrected and told that it was a federal law that made sure these kids aren't locked out of schools like they were in the past she said she must have been confused.

Our future attorney general has referred to children with disabilities as the greatest annoyance teachers face.

And yesterday we learned that there is a planned trillion dollars in cuts to Medicaid in the next ten years.  Block grants, that is to say limited amounts of money, will be provided for people with disabilities.

This is expected to be devastating to those with disabilities.

Kids like Maggie.

Kids who have preexisting conditions, will no longer be protected under the law.  Kids who used to go to institutions but who now are in regular classrooms interacting with peers and learning life skills will lose the protections that make that possible.

Since having a child with a disability I can tell you that there is one thing that has stood out to me over these last years.  People are often afraid of people with disabilities.  People get uncomfortable around them.  Many don't want to see or hear those who are differently abled.

I think a large part of that is because in the past these kids were locked away and not seen by previous generations.  I absolutely believe that the benefit of having them in the classroom is enormous.  It teaches compassion and wipes away fear of the unknown. And I think it's one of the prolife things that we can do.

Knowing other human beings that are differently abled takes away that anxiety I so often see when people hear Maggie's speech and joyful squeals and realize she's different.

People who know her, or who've even just read about her, begin to see a person not a stereotype.

People who know Maggie, when they hear the word autism, can think of her awesome sense of humor and amazing smile.  It's not just the terrifying diagnosis that some people believe is a fate worse than death (it's not).

A lot of my prolife friends have pointed out that many of the people I was marching with this last week are okay with killing babies in utero that have disabilities.  And obviously I disagree with that.  I've spoken out against abortion many times and for anyone who wonders I'll say it now:  Abortion is wrong.  Always.  I am absolutely against it.

But if you want to stop babies with disabilities from being aborted, stripping them of their healthcare and their chance to go to school, is not the way to do it.

Early intervention services are key to helping kids with disabilities before the gap between their development and their peers development becomes too large to be overcome.  These have been slashed, and my heart has ached to see that it is nearly always done by conservatives.

And now this attack on education and disability benefits?

If those disappear let me tell you, parents of babies with disabilities aren't going to be falling all over themselves to have them.  And those that do?  They won't have a future to offer these children.

It isn't realistic, someone told me a few weeks ago.  Helping all these kids.  Letting them all go to therapy and school.  There are too many of them and it costs too much.

I'm not sure I've ever heard a less prolife argument in my entire life come from the mouth of someone who claims to be for life.  We can't tell women to have babies, all the babies but then tell them that those children are just too much when they get here.

I never believed it when I heard pro-abortion people say that prolifers only care about babies when they're in the womb.  I've known personally too many people who embodied the opposite sort of generosity to believe it.  But I have seen it creep into the reality that I'm facing in the near future, here and there, and I have to say, I am terrified.

I'm sure someone will tell me not to worry. That whatever is coming will be better.  And I sure hope you're right.  Because the safety net has been cut down and striped away and we're about to be shoved over the edge as those therapies and education options are hacked out of existence (after all they can't exist if they aren't being paid for and with preexisting conditions back these kids aren't going to qualify for insurance).

Maybe some people will feel better if these kids are shoved away.  It's easier not to see these differences.  I know I have friends who wish I would stop talking about it.  I feel it keenly when close friends like every cute baby picture but are conspicuously silent every time I post about our worries for the future, or worse, tell me I have nothing to worry about.

Silly me.  Worried that the promises that have been made might come to fruition.

Because it's out of sight is out of mind.  At least if you don't love someone who has faced these challenges.

But I have a prayer.  I know many of you.  You're brave.  And maybe you voted for President Trump.  Maybe you're thrilled with him.  Praise him for the good he does.  I'll be right there beside you.  Pray that he is the president this country needs.  I know I will be on my own knees

But if you see this, these safety nets being cut that hold the hopes of our kids who need extra help please, please, don't stay silent.  You can like him and support him and still ask him, and your representatives to protect the most vulnerable of our population who are outside the womb.

No one else is going to if we don't.  So please I beg of you don't stay silent if you see the small gains of the last decades stripped away.

You don't have to chose between babies or kids with disabilities.  This isn't saving one or the other.  You can do both.  But you need to speak out to protect them all.  Advocating for kids with disabilities and babies in the womb aren't mutually exclusive.  In fact, they should go hand in hand.

I want to write happy.  And I will.

I am resolving to start sharing the glimpses of life that I've loved to share with you in the past, the happy moments that are here each and every day, even when the worries of an uncertain future weigh upon me.  But I will also be writing about the difficulties that families who love people with disabilities are going to be facing in the near future if we really end up plunging off this cliff.

And I hope that you'll be beside me in this, speaking out for the voiceless both inside and outside the womb.


  1. I'll be praying for you and your children, Cammie. Great things can happen when mothers rally together.

  2. I am probably not your typical reader--I think of you as more of an autism mom than a Catholic mom. I am here for *those* stories, more than anything. I just recently decided I even believe in God, though, and it's because there are people like *you.* So thank you for that.

    I have an autistic son. I am scared, too. I know a few moms with kids with Type 1 diabetes that are *freaking out* right now--because insulin isn't technically a medicine, it can't ever be on the market long enough to qualify to be "generic."

    I don't know how bankrupting families, kicking disabled kids out of schools, giving money to insurance company shareholders, and letting kids die is going to make America "great."

  3. Cammie - Thank you for writing this, and writing your blog in general. I, too, have an autistic child and am frightened about what the next four years will bring in terms of educational opportunities and insurance coverage. I wholeheartedly agree that the government should be in the business of taking care of those least able to care for themselves. This is not only the moral thing to do, but it makes business sense to pay for services up front to reduce the dependence in the future.

    It is really hard for me that people are scared of children like my son. So again, thank you for letting this corner of the internet see the joy of your daughter. I hope that the more people are exposed to people with differences, the more they will realize that we all have so much more in common.

  4. You should be afraid. I am. As a mom with autism, I am afraid that my son, who is at the top of his class and one of the top students in his grade, will no longer receive the services to help him succeed. He is smart, caring, and unafraid of the future. However, his teachers,, therapists, doctors, and parents are very much worried about what this means for him. He was able to build a working windmill, complete with motor, out of Legos at two. In kindergarten, he is the only student in his class working on multiplication. He can do a 100 piece puzzle upside down in half the time it takes me to do one right side up. He also has speech issues, and he can't sit in circle time (among many of his failings, but those are the two we are focusing on this week). Why do people believe those with disabilities are only made up of what their struggles are? Why can't we look past that to the wonderful person they are, and what they can accomplish?

  5. Just a heads up to anyone who plans on twisting my words I'm going to be heavily moderating these comments. I acknowledge it's a personal subject for me that is touchy right now and there's a difference between polite discussion and twisting what I've said. Thanks for being great.

  6. I think you have a particularly powerful voice, as a member of the conservative community and mother of a disabled child, to lend to these issues, and I hope you can rally fellow conservatives to your cause. Which is just and necessary, as any empathic, practical, believer-in-democracy would agree. All children deserve to be educated and provided with health care (and with food, if necessary). Surely Jesus would say no less.

  7. I'm so scared for the future right now. I don't know how anyone who calls themselves pro-life can advocate for the stripping of healthcare and support for the disabled.

  8. My heart goes to you and your children.
    Lucía (in Spain)

  9. I don't think you are wrong to be scared of what the future holds. These are weird times. I don't know what else to call it. The flux this administration has brought some really important issues to the foreground and I just don't know how it will all play out. I will hope and pray with you that these things don't come into fruition and I will gladly stand with you to advocate for those who cannot advocate for themselves.

  10. This is the best written post I have seen about this topic. God protect all our children--and all of us in these trying times. Thank you for your courage.

  11. I could not agree more. When I told a friend recently that I cannot support much of President Trump's agenda because I am Catholic he was a bit taken aback. Because, abortion. But what about the differently abled babies who are born,or the economically disadvantaged single mother who choose life - do we hang them out to dry? And what about the Church's teachings on social justice? Those matter too.

  12. The past few months have been breaking my heart. We can only hope compassion prevails, and in the meantime work to change hearts. It's as if people forget that there are real people when talking about healthcare, not just part of the budget to be cut.

  13. I really liked really your point of view. I tremendly respect it and admire you to stand up for it.
    Difficult times are coming but all voices need to be heard!


I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!