World Autism Day

April 2 has taken on a new meaning in our family.  Yesterday we observed World Autism Day, now that we have officially welcomed Asperger's into our lives.  It's one of those days that snuck up on us. Although the fact is, it's been living with us for years.  Autism Awareness Month has a whole new meaning for our family.

It's been a rotten week for me.  Asperger's (with a little help from life in general) has kicked my butt from east to west.  I really don't know how moms with more autism in their lives do it because I've completely forgotten how to laugh this week.  I've been frustrated and angry, not with Noah, but with AS.  I'm angry with what I feel has been stolen from me and I'm frustrated for what my son goes through.  He deserves better than what I have been able to give him, especially this week.  I'm exhausted and frustrated by life in general, concerned for my mom and grandmother, still grieving over the loss of my grandfather, I'm frustrated for my son, my health is continuing to decline, and my meds are taking their own toll.  Depression has made a nest in my brain and my body.  And that feels like just the tip of the iceberg.  Frankly, I am surprised to still be standing after these past four weeks.  I am just plain worn out and in need of a break.  I'm feeling very weary, burdened and defeated.  But I have to keep moving because I'm the mom and this is what I'm supposed to do.


Saturday I felt like I had a pretty good handle on things.  Better than the rest of the week, anyway.  Until I got to the grocery store, was flipping through my grocery notebook and found a note that I'd written to myself several months ago to send pictures of the kids and notes to Denny.  I felt like I'd walked face-first into a concrete wall.  I couldn't help it, I just started sobbing in the middle of the store.  Poor Avery, sitting there in the cart, looking at me and asking, "Mommy?  Mommy?"  The week just caught up with me.  The enormity of all my responsibilities, the importance of the meaning of World Autism Day, and then finding the note to myself.  So, what happened next?  My guardian angel showed up.  She's the mom of one of my high school friends and has shown up twice to rescue Avery and me from disastrous grocery shopping trips.  The first time was right after Noah's diagnosis.  I'm sure my friend would find it amusing that I think of her mom as my guardian angel, but we live on similar planets.  She's raised (is still raising) a daughter with Down's Syndrome.  I don't share details with her mom, I keep it general, but just seeing her and knowing that someone else out there cares enough to stop and talk to me helps.  Mrs H, if you ever read this, thank you for caring and thank you for being my guardian angel.  You have no idea how much just your presence helped calm me yesterday.

Today, our church's children's ministry marked Autism Awareness Month by holding an Autism Awareness Workshop.   I'm very proud of our church and very grateful to our leaders for doing this. It was difficult for me to sit through and I had to keep wiping tears as I listened to the specialist describe my child.   Fortunately, I was with good people: children's ministry leaders and other parents who are on my planet, so it was okay (given how teary I've been all weekend and that I sobbed during church, I'm surprised I did as well as I did during the presentation! Yay me!).  We're one of the few churches in the area with a ministry specifically designed and trained to aide children with special needs so they can participate in the children's ministry activities while their parents attend praise and worship, worry-free.  Being a part of such an accepting church has made things with Noah's diagnosis much easier.  Knowing that he is Noah, and not "that ill-behaved child," or Asperger #1, has helped all of us.  Noah's case is mild enough that he is not officially part of the special-needs ministry (in need of an aide), but knowing that his Sunday School leaders are educated and trained to handled anything that may come their way because of him is a comfort.  Knowing that our church leaders and the congregation as a whole are educated and that Noah's behavior doesn't raise many eyebrows is a comfort. To belong to a church family where people do their best to understand Noah and his behaviors (instead of questioning me about the dosages of medications he's not on and if they should be increased) is powerful.

I'm still learning to embrace AS and everything that goes with it.  I've lived with it for Noah's entire life, but didn't know what to call it (well, I did, I just didn't want to.  Denial is a terrible thing to do to your child.).  Now I know he couldn't help it.  I'm trying to help him.  So this month, I'm lighting a blue light in my heart for my son because I love him dearly, he means the world to me and I will do everything and anything I have to do to help him through this.

For more information on Autism and Asperger's Syndrome, please visit these sites:
http://www.autismspeaks.org/
http://www.autism-society.org/
http://www.lightitupblue.org/