Thursday, April 12, 2012

Undiagnosed Children's Day is tomorrow!

Tomorrow is Undiagnosed Children's Day!

This may lead to some questions, such as, what is Undiagnosed Children's Day, and why are you only telling us about it a few short hours before the big event?  I'll give you the long answer to the first one, but for the second let's just say that there was a bit of date confusion and I thought I had an extra week to get my act in gear (oops). 

What is Undiagnosed Children's Day?
Undiagnosed Children's Day is a day where you get to support (and, if you're feeling motivated, raise awareness) of the kids that you know (like Maya) who are undiagnosed.  It's an awareness day that was invented last year by another blogger, Heather of Team Aidan, whose son has an undiagnosed developmental disability. 

Why did Heather invent an awareness day?
A year ago, Heather wrote the post that kicked off Undiagnosed Children's Day, and she started it like this:

When people ask me for Aidan’s diagnosis, I say he has development delays and hypotonia (low muscle tone.) Those are words that get you nowhere. When he turned 6, he lost some services because that diagnosis was no longer valid. Happy 6th Birthday, poof, your disability is gone. No wait, the disability is still there but your services aren’t. In school he is labeled as multi-handicapped. That only works for school. Many agencies have different qualifying criteria. Don’t try moving to a different state because they may require a different name.

Yeah.  Getting older without a diagnosis is really difficult (she goes on to qualify, by the way, that having a diagnosis comes with its own pros and cons---we're certainly not saying that having a diagnosis is a cakewalk, just that it sure can be handy when you need it).  It's something that would keep me up at night, if I allowed myself to think about it for more than two minutes at a time.

There are other challenging things about not having a diagnosis, too.  One that gets under my skin is the skepticism that can come from inquiring minds.  Maybe someone that has a child with disability and is asking about Maya, or maybe it's from someone within the education/services world, or maybe we're visiting a new doctor . . . and when I say "She has a undiagnosed genetic syndrome" there's a flash, a little lightening bolt that flits through many of their eyes.  Some hide it better, while some fully commit with a raised eyebrow, but there's often a flicker of Oh, come on, don't beat around the bush, just tell me or Haven't you even taken her to get checked out or If it's 'undiagnosed' then how do you know it's genetic or whatever.   

You know what's especially biting about those skeptical folks?

I think I could have been one of them.

I'm a science girl. (I was a zoology major, a science teacher, an EMT, I have a masters in teaching science, and my mom's a nurse.  I was always kind of biology-nerdy, even before Maya.)  I like data and tests.  Had someone told me that their child was undiagnosed I'm fairly sure that I would have been very curious and asked a lot of questions (hopefully politely, but who knows).  My level of skepticism probably would have depended on what I thought of the parents and their capability to find the right doctors and push for tests and advocate and whatever.  My outer opinion would have been sympathetic. My inner voice would wonder when they would be able to get the diagnosis-------when, not if, because this is 2012 after all, and we're sequencing DNA and all that jazz and how could there just not be a test to run that would bring the answer in?

This is why a little awareness would be helpful.  Because I would have been skeptical of someone in my own position.  Because despite being a graduate-degree-educated-big-city-science-nerd, I had never been aware of the limitations of medicine and science in their ability to diagnosis children who are struggling with nameless syndromes or disorders. 

What does one do to participate in Undiagnosed Children's Day?
Wear blue!

That's it.

Ok, that's not totally it.  First, wear blue.  Then, if you can, share something about Undiagnosed Children's Day---on your Facebook, via email, with a tweet, dropped into a phone conversation, however you want.   You can share this post from Heather, or her original Undiagnosed Children's Day post, or share this post that you're reading right now.  Share a picture of yourself rocking out in blue, and let people know why you're wearing it.

And if you're wearing blue, share it with us, too!  Because if there's one thing that's tough about the undiagnosed world, it's the going-solo-ness of it all.  Heather wrote:

The whole “undiagnosed developmental disability” thing happened slowly, much like a gentle slope you didn’t realize you were on until you hit the bottom. The bottom: left behind by state workers who need to check a box, left behind by the moms who said, “but you must know what caused it,” left behind by the support groups who rally around kids with CP or Down Syndrome (ok, to be fair, I’ve met awesome moms who have asked me to come to their groups anyway), left behind by foundations that research specific diseases. Alone.

If I had had Maya 20 years ago, pre-internet, I would have been lost.  If not for the ability to seek out bloggers, therapists, AAC specialists, and other parents (and then badger them via email, FB, and twitter until they answer my questions and beg me to leave them alone) I'm really not sure what I would have done.  I push into other online communities and try to glean what might work for us, but there is a loneliness that comes with not having a group that totally gets it.  Even the undiagnosed community is so hugely variable that it's tough to find a great fit.  We're so lucky to have wonderful families, supportive friends, and online allies . . . but there are many other undiagnosed families who don't have that, who just wish more people understood.  And tomorrow, when test results come in to doctor's offices around the world and more parents hear "The results were normal.  Let's just wait and see, and check back in 6 months." our ranks will grow.

So tomorrow, wear blue.  And share Undiagnosed Children's Day, and the fact that even with today's advances in medicine, technology, and science, there are large numbers of families who are still looking for an answer.



Colette said...

Hi Dana,
Another great post and I will wear blue for all our SWAN kiddos. Thanks for helping bring awareness to our situation. I agree wholeheartedly that while having a "name" doesn't make it easier it certainly can make a difference in a lot of situations. Love your blog!!

Anonymous said...

Thanks for sharing! I had no idea such a day exists. I'm happy to share and spread the word. Here's a link to my blog write-up:

Katie said...

Your amazing and I love your writing! You say what we all are feeling.

Anonymous said...

My angel Zach died undiagnosed 3/13/12. From an undiagnosed genetic syndrome, still waiting to see if he got qualified for Medicaid since he was medically fragile, and was told from many non profits "call us back when you get a diagnosis". I also got the "science has to catch up with your son" speech, and well at this point we feel that having answers is important to set up a purpose for treatment, to get help, to find a group for children with syndrome Abcd or Xyz, to at least have something to tell people when they want to know about your kid, etc. Now I wear black & white only because I'm grieving, but I will definitely wear blue tomorrow!

Beate said...

Hi Dana,
Just shared your post on my Facebook wall. Your post says it all! Thank you!

Clara said...
This comment has been removed by the author.
Clara said...

Hi!thanks for your lovely post. I'm anonymous comment (Zach's mom. Just didn't want to be anonymous, I'm having some operator problems to add my profile to the comments. This is my blog that's still a work in progress:
Wearing blue today!

Emmett's Fight said...

I sent a link to your post today to a friend with a daughter who is undiagnosed. Thank you for sharing! Helpful to have support.

Lauren said...

Sadly saw this post 3 days too late but will put in the diary for next year to share with all the SWAN UK members!

Lady Esther said...

Yep it puzzles people. They wonder how can she not
Have a dx. My short answer is doctors nor science are God and only He knows at this point!

Melissa said...

Hi Dana,
I have just discovered your blog and am really enjoying it! Thank you!!! I have a little girl very similar to Maya and I am currently in the process of trying to convince my husband we should get a therapy dog buddy for her, so it's lovely to read about Parker and Maya together. I missed reading about Undiagnosed Children's Day too but will look forward to wearing blue here in Australia next year.

Also, they're not Communication apps. but my little one is enjoying 'Sound Shaker' and 'Wood Puzzle'. Easy to use and clear sounds and graphics.


the mommy psychologist said...

I'm sorry that I missed this day. It is a fabulous idea. I will be on it last year!

Adam & Kimberly said...

Wonderful post! I am Addison & Audrina's mom over at

Love this - you said everything I wanted to say.