A Dream for my Daughter

At this very moment, Ryan and I and the girls are in Aspen.

Bliss.

So maybe I've got just a little too much free time right now.

Or maybe I'm on a "Rocky Mountain High".

But I've been thinking just a bit about the Bird's future.  I mean, way-off future.  Since thinking about what the future might possibly hold for Lily typically produces nothing but a bunch of anxiety and fear in me, I try to avoid it at all costs.

I think it makes me nervous because there is so much unknown.  Will she talk?  Will she graduate from high school?  Will she drive a car?  Will she ever live on her own?

I just don't know.

Raising a child with special needs is challenging.

Challenging because our kids don't fit the mold.

They are different.

And the general population doesn't always know what to do with different.

Yes, we've come a long way since people with special needs were sequestered away from society in asylums.  Or when parents were told to place their children in homes because they would never progress and would be a burden on the family.

Yes, we have learned that many of these special needs individuals are highly intelligent and very capable of learning.

Yes, there are many services available today for our kids to help ensure that they can be contributing members of society and have a bright future.

But here's where my thinking starts to veer off course just a little.

Many of those services are about conformity.  Teaching our kids how to function in society with their peers.  How to sit in a classroom with others without causing interruptions.  How to write with proper pencil grip on lined paper.  How to appropriately walk the halls of a school.  How to check out a library book.  How to do a project for the science fair.

Yes, exceptions are made so that our kids can participate in these tasks and be successful.

But at the end of the day, the goal is to end up completing those same tasks as their peers.

Our kids may take a different route but the final destination is the same - do what their peers are doing.

Now, I don't have a huge problem with that.

Our kids do have to learn how to appropriately attend school and all that entails if they are going to attend school.  I don't believe we should be sending them to school for free babysitting.  There should be active learning taking place, even if the starting place is simply learning how to behave at school.  Let's face it - it's going to be hard to teach a kid how to read if he can't sit still.

But it is an undeniable fact that our kids work hard.  When a typical child attends school, things like lunch, recess, and PE are essentially breaks.  For a special needs child, there are no real breaks.  Lunch, recess, and PE are just more opportunities to practice skills that help them "conform", to blend in and be more like their peers.

As long as a child is continuing to learn, to meet educational and behavioral goals, and is progressing successfully, then there is no reason to assume that the course of "conformity" is having any negative impact on him.

But I can't help thinking beyond the school years.  To the time when Lily is 18 or 20 years old.

What if she doesn't want to conform anymore?

What if she's still nonverbal and doesn't really want to use a special device for communicating?

What if she's happy just doing something simple, something that gives her immense satisfaction and joy, but doesn't really count towards the statistics showing that she could be a highly functioning member of society?

For example, what if sketching all day long makes her happy?  Or tending chickens and goats brings her joy?  What if writing stories makes her feel peaceful?  Or gardening makes her feel productive?

Will I be ok with that?  With allowing her to do just that?

Or deep down inside, do I want her to keep pushing, to keep working so very hard, to keep "conforming", like I might expect her to do if she didn't have special needs?

While I obviously can't see 12 years down the road, and many things will change between now and then, I do want to reach the day when Lily is able to make her own decisions.  And when that day comes, I want to be respectful and supportive.

I want to help her achieve whatever it is that brings her joy.

I am not concerned with my child being a special needs success story in the eyes of the world.

I am concerned with my child being a special needs success story in her own eyes.

And in the long run, isn't that what really matters?

Enough Awareness. More Action.

Here we go again.

Wednesday, another CDC survey was published stating that autism numbers are continuing to rise.  Last year it was 1 in 88.  This year?  1 in 50.  Click here if you want to read just one of the many articles. 

I'm not going to lie.  

Raising a child with special needs is hard.  

Like mind-blowing, body-aching, brain-sucking, emotion-wreaking, heart-grieving hard.  

And as a mother of two older daughters who are far too quickly approaching marriage and childbirth, I am seriously concerned about the high, high risks of them giving birth to children who are almost destined to be diagnosed with autism, not because of anything genetic, but simply because of the growing numbers with nothing being done about it. 

Most of you know how I feel about Lily and autism.  I don't believe she actually has it.  I believe she is ill and with proper medical treatment, in time, she can recover.  Click here to read the story of the Bird.

When I bring up the story of Lily's regression with most doctors, they don't have any answers for me.  I even questioned a neurologist about it once and her response?  "Oh, lots of kids regress."

Umm... excuse me?  Really?  And don't you think that's strange, Doctor??  I mean, if I was a neurologist, I might be trying to figure that one out.  Just an idea.

Maybe nowadays lots of kids regress but I can assure you that regression has not always been such a common, matter-of-fact aspect of child-rearing.  I certainly never heard anything about it 19 and 16 years ago when I had Ryley and Reagan.

And I can promise you that not one single one of them will ever admit that a vaccine could've triggered something in Lily Bird.  Because even though the number of vaccines we give our children continues to rise right alongside the rise in the numbers of autism diagnoses, by golly, vaccines do not cause autism.  And even when I remind them that I am not saying that vaccines might have caused Lily's autism but rather triggered some kind of negative process in her body, they are just adamant.  Because vaccines are the holy grail of modern medicine.  And the government offers them to us out of the goodness of their hearts because surely they want all of us to be happy and healthy. 

Sorry.  I snuck up on my soapbox for a minute there.

Y'all.  Awareness is not the answer.  It's time for some serious action.

First, let me ask you a question.  If you are the parent of a child with an autism diagnosis, did your child regress?  Was he or she developing normally and then for whatever reason, suddenly start regressing? Losing skills?  Did you watch your child disappear right in front of your eyes, helpless to do a single thing?

Then maybe, just maybe, your child does not have autism.  

And maybe, just maybe, the reason for some of the high number of diagnoses we're seeing today are because what looks like autism may not actually be autism.

Again, I'm not talking about all kids diagnosed with autism.  Just the segment of those who regressed.

Lily is a patient of Dr. Michael Goldberg, a pediatrician in California who has totally narrowed his practice down to treating those children like Lily, who were just fine for a while, and then began losing skills.

If your child fits that profile, will you take just six minutes and watch this video?  

I'm not asking you to become a patient of Dr. Goldberg.  I'm not getting paid to promote his practice.  I'm not selling his book and getting some kind of kickback.  I'm not asking you to change what you're doing, to stop all therapies, and quit all biomedical treatments.

You're already good at thinking outside the box.  I'm simply asking you to do a little more of that outside the box thinking.  To consider the possibility that maybe, just maybe, your child could be more successfully helped if you quit thinking of his or her diagnosis as autism.  And if you started demanding real medical treatment for your child who is ill - not with a psychological disorder but a real physical illness.

If we parents will come together and start demanding that our kids receive the medical treatment they deserve, we will be heard.  And when we unite and share a common voice, the right people will ultimately hear us.  And change will happen.  And our children will get well.

Because, really, our children are what this is all about.

My child is what this is about.

And for her, I will do what it takes.

No more awareness.  It's time for action.