A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Wednesday, January 7, 2009

This too shall pass

Can we climb this mountain? I don't know. Higher now than ever before - The Killers
My friend Marni got a new tattoo this week. It says "This Too Shall Pass." This saying has beautiful meaning to her and reminded me that it's one of those sayings that can have great meaning to so many. I'm really "in it" and when we're really "in it", little reminders to get us through it really help.
A lot of friends are asking me what's going on, so here's the deal... My little baby bird is going through a very major regression. Without getting into specifics, just know that the word regression is the opposite of progression. Basically instead of moving forward, she's going backward. It's absolutely killing me. I'm devastated and completely puzzled. I saw a sign that said "children are like snowflakes: no two are the same". This truth should be totally exaggerated for kids with Autism. If you know nothing about Autism, let me tell you that there's a reason its a spectrum disorder. Two kids with the same diagnosis can be extremely different. Not all kids with Autism are non-verbal, non-social, don't make eye contact, flap their arms, cover their ears with loud noises, are savants, or bang their heads. I could go on and on. My point is that the whole disorder of Autism has no rhyme or reason and makes NO sense! You could only imagine how frustrating this is on a mommy. Anyway, you've probably heard loads of stories of kids who progressed typically as babies, hitting all their milestones, etc. Then around 18 months or 2 years they seemed to lose skills, language, eye contact, social connection, etc. If you haven't heard these stories, then where have you been?? Today 1 in 150 kids is diagnosed with having an Autism Spectrum Disorder and 1 in 94 boys are diagnosed. But I digress.... Anyway, my kid was NOT one of those kids to develop normal and then regress. She's always been developmentally delayed, hitting milestones, but very late. She's never regressed EVER- only slow, steady progress. Now all the sudden, this major regression. WTF, right? No one can figure it out- especially me.
So, if I've RSVP'd NO to your kids' birthday parties, canceled plans, or left events early, that's why. Things aren't going so well right now. But the good news is that This Too Shall Pass. I am doing all the right things and all the footwork necessary, I am praying, hoping, doing extra mitzvot, and trying to have faith that we will get through this. Thanks to all my friends for your support and for your encouragement. I'll keep you posted. That is, after all, the point of this little blogging adventure, right??

14 comments:

Elanah Hunger said...

I wish with all my heart that I could help, even in some small way. I hope you'll let me know if you can think of a way?

Michelle Twin Mum said...

Hi, I am visiting from Jen's blog gems. Wow, what a post, it must be so hard to go from progression to regression. I hope much has changed since this post and some of the heartache has passed. Mich x

jillsmo said...

Regressions can suck it.

It's been almost 2 years since this post, how far has she come since you wrote it?

Big Daddy Autism said...

"This too shall pass" has gotten my family through quite a bit over the past decade or so. We find it helpful to repeat this mantra when times are good as well as bad. In bad times it let's us know there is light at the end of the tunnel and in good times it forces us to enjoy and cherish the moment that much more knowing that it will eventually pass as well.

Alysia - Try Defying Gravity said...

powerful first post. thanks for sharing it with us all.
Have you seen this video called "this too shall pass?"
http://www.youtube.com/watch?v=qybUFnY7Y8w
from ok go...
gets me through the hard days...

Dani G said...

alysia- awesome video!!!

Cheryl D. said...

This was your first post? Wow! I'm blown away!

spectrummymummy said...

Wow, what a first post! THat is a mantra we could all use at times.

Life In A Pink Fibro said...

I love that saying. I also love 'Hold Fast', which you clearly are. Great first post. Visiting from Blog Gems.

@jencull (jen) said...

Mine did the regression at 15 months or so and sometimes we work so so hard to teach him something and then he just 'forgets' *sigh* I hope this period didn't last long and she came out of it quickly. Thanks for joining in Blog Gems. Jen

Chris P-M said...

"This too shall pass" is a good mantra. I try to remember it all the time.

We know the regression thing all too well, and it sucks.

Sunday said...

I could not agree more with the "This too shall pass" way of thinking. Its all we can do some days to keep our heads above water.

My boys have both hit milestones and regressed in a certain one step forward two steps back sort of way a number of times.

I know how hard it is to watch and to want to know all the answers and how frustrating it is knowing we don't have them.

Its days like that when I also try to remember "one day at a time".

Hugs to you, my friend.

Brenda said...

Love that you're re-sharing this - well worth it! Sometimes it's two steps forward, one back or vice versa, right. So ... has anything changed; how do you feel about this post now? wish something was different? or would you keep it all the same?

Tessa said...

What an awesome first post. I'm reading this during a time when "this too shall pass" is exaclty what I needed to hear. I look forward to reading more.

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