Take Me Out To The Ball Game!

Sunday, May 8, 2011

Remembering The Good Ol' Days

  By most standards I have a stellar memory:  I remember friends from elementary school, I remember people I've met only once or twice and whatever details of their lives they've shared with me, I remember what I was wearing the day I met my future husband (a celery green cotton sweater and matching green jeans skirt--what was I thinking?  I'm a winter not a spring, but it was summer time in Denver and I had a wicked tan going), I also remember what my best friend Glynis was wearing the day I met her; she was rocking a Prince tee with a jeans skirt....size about negative to the 100th degree zero.  And I remember exactly where I was and what the weather was like the day God spoke to me and said, "what about Down syndrome?" 

  But for the life of me I can't remember the day my baby daughter waved at me, or started pointing with her fingers or did she "da da" before she said "focacia"?  I have NO IDEA.  A therapist recently asked me if I remember if she started using sentences at 2 years 3months....or was it more like 2 years 6months.  Are you KIDDING ME??  I had early intervention therapists in and out of the house at least five to six times a week, we attended playgroups, and we were transitioning our three year old son to preschool.  Our son who didn't walk, talk or feed himself.  Ya, I'm a little fuzzy on the subtleties of each of my daughter's days between birth and five years old.

  But, for those of you who haven't yet heard the giant sucking sound that is the vacuum of life sucking out your last six brain cells, you might find this article helpful, especially if you're wondering if there were any "signs" that your child was on the spectrum when he/she was younger.  As I read this, some things resonated with me and other things didn't.  Sometimes I think Asperger's "happened" to her when she was about five.  I don't know.  I don't know anything anymore and I'm mostly tired from trying to come up with answers for everything.  But I do think it's a good article, so enjoy!  Hope it helps you!  http://networkedblogs.com/hvhK5

Can We Do This Without The Hype?

  Before I launch into what to some will no doubt seem like an Anti-Mother's-Day speel, let me first say that I do "like" the concept of Mother's Day.  Sort of.  I like being appreciated for my efforts (which on some days require herculean emotional and physical exursion) to rear my children in such a way that they have a chance at becoming productive members of society: choosing to quit my radio career to stay at home, choosing to educate them at home with the hopes of maximizing their potentials and opening up the exciting world of learning to them, and making them a priority in a hundred different ways everyday.  I just don't necessarily "need" a special day for a Hallmark store thrown up on me in order to validate my daily efforts.

  This is where having kids with special needs comes in real handy because holidays always look a little "different" than a Norman Rockwell painting in our house: our 12 year old son is not the LEAST bit aware that today is any different than any other day and that's FINE by me.  He treats me the same everyday: I get hugs with almond butter and jelly hands, he carries on elaborate-but-not-necessarily-easy-to-follow-conversations in sign language with me and he wants to watch Signing Time EVERYDAY.  Today is no different and that's totally cool with me.  My daughter's love language is gift-giving and she made me a precious card that said she really does love me.  Ya, that was a kleenex moment because we've had a TOUGH week where all things in my mothering heart have been shaken to the core, so I needed that from her and I DO appreciate it with all my heart.

We're choosing to NOT go to church today on this overly-hyped American greeting-card holiday because this morning has been GOOD.  Our Aspie has been on HIGH alert ALL morning and enthusiastically brought me breakfast in bed (see photo), and made me a card before she came out of her bedroom this morning.  To herd everyone to church would most definitely be opening the floodgates of chaos and confusion for someone who's already given everything she can today.  I don't need Hallmark or a minister to validate my efforts today, I just need to remember to stay the course.  God didn't make a mistake when He put us together and we're on the journey together, no matter where it takes us.

Saturday, May 7, 2011

I Need A Clue

   Last week at church we decided to let our 11 year old daughter attend the children's church.  This is the first time in years that we've had our kids attend any kind of church program separate from the adults and  I stayed with her for awhile to make sure she was settled and comfortable and when she gave me the signal, I made my way to the main building to join my husband and son in the sanctuary.  As I walked through the foyer that envelopes the main sanctuary, a few people were randomly calling out for a nurse or a doctor, but not being one, nor ever having played one on televion, I continued walking toward the sanctuary to stay out of everyone's way.  By the time I got to the sanctuary, the firemen had arrived and were presumabley finding the person who needed help, who was apparently up in the balcony.  The first door I opened didn't lead me to where Jeff and Hayden were but it did give me a moment to notice the mood in the sanctuary, which was clearly very somber and serious.  The pastor was leaning against a stool and speaking very quietly to the congregation, which, to a person, seemed to be visibly upset.  Realizing that Jeff and Hayden weren't in that section, I walked back out to the foyer entering into the sanctuary in through a different door and when I opened it, almost everyone turned around and looked at me, wondering if perhaps I had any information for what was going on upstairs.  I quickly spotted Jeff and slid in next to him and Hayden, relieved that I was no longer the focus of everyone's attention.

  As I sat with them, most of the people including Jeff, were praying quietly to themselves and the pastor wasn't saying much of anything, or at least nothing I could understand from our pews in the rear of the sanctuary.  In the distance above and behind me I could hear a voice that was clearly electronically generated but I couldn't make out what was being said.  I thought perhaps that maybe it was a person with a disability who used a "talker" or some other type of device.  Every few seconds people from the main level of the sanctuary were turning their heads upward hoping to catch a glance of the action in the balcony. I nudged Jeff so he could fill me in but he was deep in prayer.  I focused on keeping Hayden contained so he wouldn't bother the people around him, while trying to decode the mood of of the place; the expressions on people's faces, what the minister was feeling, why wasn't Jeff Jeff responding to me when I nudged him? why were people crying?  was the person in the balcony having mental/emotional issues?  was he/she somehow acting erractically or in a threatening way and that's why everyone was so upset?  what was that electronic voice saying? why was it taking so long for the paramedics to deal with this person?  I just couldn't figure anything out.  By this time Hayden's Clock Of Good Behavior had run out and he was beginning to be just a little too happy and friendly for the general mood, so I took him out to the foyer and kept him busy with flashcard apps on my phone until the service let out.

  All this led me to wonder, "is this what it's like for a person with autism/Asperger's?  Do they often walk into a room where something has already begun and they're left to put together the clues as to what it all means?  Do they see people's expressions but don't know what they mean?  Do they hear people talking but sometimes can't figure out what their words actually mean?  Do they see people express emotion but don't know WHY they're emoting anger, fear, anxiety, sadness, grief, joy, etc...?  When my daughter was younger and we'd be watching something on tv that would make me cry (could be happy tears or sad tears) she would bend her body around me and look up at my face smiling and say, "Mommy your eyes are leaking!  Why is there water coming out of your eyes?", all the while very pleased with herself about this new discovery about her quirky mom.  It was amusing then, because I didn't understand that she wasn't going to easily and naturally be able to put herself in the same place as a character to feel what they were feeling....to have empathy come naturally to her.  Last year I read "Hachiko" aloud to her.  We love dogs and I thought it would be a great story to share as we learned about another dog lover from a different culture (dog lovers beware: Hachiko will break your heart and leave you in a puddle of tears but it is a GREAT story of abiding love).  Right up until the end (which I KNEW was coming because what dog lover doesn't know the beautiful love story that is Hachiko??  right?) I did GREAT.  I kept my cool and composure......until, well you know what happened:  I was a big hot mess sitting there on her bedroom floor with her facing me, completely engaged in the story and  befuddled as to why my eyes were spewing forth fountains of water. 

But I digress, back to my wondering........Is this what it's like for my daughter?  She's HIGHLY verbal but has significant problems in decoding the myriad of cues in any given social situation like facial expressions, subtle changes in someone's tone of voice, the meanings of jokes, word plays, innocent teasing and the normal give and take of typical conversations.  These are the things that are difficult for her to decode, not even taking into account the sensory bombardment she deals with everywhere she goes:  lights, smells, people brushing past her in crowds, how some people's voices actually hurt her ears, etc....Does she walk into rooms wondering what's going on?  I know she gets VERY frustrated when people don't answer her in the way she's expecting.  Is this why? Is she overwhelmed with trying to figure out what's going on at all times on every level and sometimes she just can't handle all the input??  I desperately want to understand how my daughter FEELS.  Maybe if I can decode the maze in her mind I can be more empathetic when she seems lost in our world.

Post Script: It turns out there was a woman in the balcony whose heart had apparently stopped working during the church service.  Just moments before I was making my way from the children's church, the pastor called out for any doctors in the congregation to help and many had responded.  Toward the end of the service (while I was back out in the foyer w/ Hayden) and while the paramedics were still working on her, her heart started beating again.  I hope the woman felt the prayers of the hundreds of people interceding on her behalf and that she goes forth with renewed purpose and passion in her life!