Thursday, January 6, 2011

Amazing Grace(s)

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The Spirit of Faith
My heart is warmed by a few miraculous events in the last year, acts of grace which surprised and touched my family.  One day last fall, I found a card in the stack of mail.  It had no return address, which made me curious - such a rarity.  I opened it, inside was a funny inspirational card about coping.  The type of card that I used to send when I had time to be a better friend.  That was enough to get my tears rolling.  But, also enclosed were two gift cards!  No signature, no clues.  I called my husband crying (he's so used to that, emotional mama that I am).  He had no idea who sent it either and was as incredulous as I.  I put out a message on my Facebook, asking who my anonymous angel was...nothing.  I called a few likely suspects, still no answers.  I compared handwriting from other cards and mail, even Christmas cards when they came.  Now more than 3 months later, I still don't know who my secret angel is or if they saw, heard about or felt my huge thank you.  I'd love to hug them and express my gratitude.  They may never know how meaningful their action was to me, my family.  They "had me" (bursting with tears and gratitude) at the beautiful card.  The gift cards were unnecessary, as gifts always are.  But of course they were certainly appreciated and used wisely, shopper (Sale-er) extraordinaire that I am.  :)

When I was preparing for G's Independent Education Plan (IEP), I was surrounded by friends who stepped up to the plate to help me gain strength and confidence.  My sweet cousin Coco, a special needs teacher, called me to brainstorm, and she provided answers, research and very welcome hugs.  Trusted friend/G-care sitter Chris and long-time family friends Karen and Chris L. listened to tormented calls and offered comfort and stability.  I located an advocate, a friend from a local mom's group that I was in, and my friend Ellen took my reports and notes, reviewed it all and gave me tasks to be certain that I was prepared.  Armed with a file cabinet full of organized binders and Ellen, we advocated for G.  She evened up my side of the table, gave me confidence and security to fight for my son.  G got services, he prospered.  I'm grateful and impressed by our school professionals too.  As always, my BFF's Linda and Laura were available for counsel 24/7.

When I went public via Facebook about G, a delightful college classmate Susan reached out to me to guide me through the initial shock of autism's diagnosis and confusing maze. She brought me down to earth and let me know that I could do this. There IS life beyond diagnosis. I thank her for her many links, resources, phone calls, notes, kindnesses and a great book. Go Warrior Moms!

I was awestruck again when family friends called to invite my kids on a family adventure 3 days before Christmas.  I said yes immediately, but my heart and brain started racing at the thought of all I had left to do to prepare for the big holiday.  I was completely taken off guard next when the friend next suggested that his family take my 3 kids, including G, so that I could have time to get some things done (had he read my mind?).  :)  I was stunned into silence.  I stammered and told him, "I never get that offer, do you know what you're getting into?"  He said that he and his wife had discussed it and decided that as a family, and with my 2 older kids they felt sure they could handle G.  I told him I had absolute confidence in that, I'd strongly consider it, thanked him about 30 times and hung up, dialing my husband immediately.  Of course we both felt completely secure that this couple could handle G.  They have a beautiful family of polite, smart and kind children who take after their active and fun parents.  Their son is one of  N's best friends, and a rare friend who can "deal" with G effortlessly.   Steve is a baseball coach (my son N was lucky to have him as coach for years) and ski patrol during the winter months.  Julie's a lunch monitor at school and volunteer extraordinaire.  Both are very active in the community, family and friends.  I'll never forget one of my first impressions of this awesome family: for each of their children, they host a pool party after school lets out for the summer after their kindergarten year.  Wow, can you imagine hosting 25-30 five year olds and their parents?  That's beyond brave!  So, their offer was really hard to beat. 

Judging from everyone's demeanor,
G's tantrum had been going on for awhile.
Why I said no to a perfectly wonderful opportunity which NEVER comes up...aka: Am I stark-raving mad?  Really, it's only been necessary for G-care a few times.   My husband and I decided years ago to simply skip going out together - we take turns or don't go.  We have great neighborhood babysitters that we trust, but why take a chance that G will do something outrageous?  We don't want to burden a teenager, that's way too much responsibility.   Most often he'll go to his buddy's house to stay with strong, capable Miss Chris, who sometimes gives him bonus Sensory PT.  :)   For a couple of family emergencies the kids have stayed with Aunt Chris, Uncle Greg and their fun crew. :)  We love and trust them and so does G.  I'm pretty sure we've scared off everyone else with our wild child G, which is totally understandable, lol.  :)  We don't expect help and try to save our favors for desperate situations.  I can't offer to help friends much any more, but of course would if needed.  Okay, so you get the picture that we never ask for help, which is why this offer felt like a bonafide miracle.

Sensory Freakout:
G's panicked, in fight or flight mode.
Back to why I said no...It's hard to comprehend unless you live with special needs, but I feel tremendous guilt for the amount of stress that's put upon my 2 older children.  I try hard to shield them from the reality of G's issues: the pain and sadness, extra work, stress and downright ugliness.  But try as we may, they live here.  They experience difficulties kids shouldn't be burdened with, note my frantic calls and research, take up slack if I just can't multi-task enough to cover watching him.  They see me breakdown, have my own meltdowns, get crabby and frustrated.  They chase him when he impulsively runs...everywhere.  They weather his unruly tantrums.  They must rise above the embarrassment that G often causes in public, with their schoolmates, teammates, friends.  They're true team players in our family: they help, they hug, they comfort, they give, they love.  Our family dynamic is entirely G-centric, dependent on the moods and behavior spikes which we don't understand, can't predict, can't control.  I understand that our family dynamic will help them to be more sensitive and accepting.  I see the good traits that this inspires.  But: they deserve THEIR OWN FUN, their own friends, their own time to be away, to relax. 

Another Not-so-Kodak Moment
G's not cooperating. Check out N and M's
 uncomfortable body language
To that end, My husband and I strive to single out our kids for one on one time with us, so that we get a chance to bond, to connect, to enjoy our own time.  We've been doing this since the kids were tots: when we began to feel the sibling rivalry reach its peak, we'd head out for an afternoon of fun, each of us toting one child with our own plans.  My husband and I value these special times and hope they do too.  I'm thankful this year for the opportunity to connect daily with my 11 year old son since he arrives home an hour before his siblings.  This single hour has been fantastic, even if we just sit across from one another while he does homework and I cook or do the dishes.  He knows I'm here and he can talk to me casually, without fear of distraction or interruptions.  I'm approachable for this sacred hour.

The unpublished photos, the real deal.
I had a rough time hunting down these photos. I usually don't take photos in the midst of tantrums, or just delete them.  Maybe I should save a few to look back on someday.

Progression of Meltdown
Take 1:  G objects to random annoyance
The kids see it coming, disaster's on the horizon.
Mom tries to pull it off anyway...

Progression of Meltdown
Take 2: Change of scenery
G still objects to random annoyance
I still try to make everyone laugh, we can do this!

Progression of Meltdown
Take 3:  Resistance is futile!
Oh well, I'll just crop him out.
Poor N had to go sing happy songs at his choir concert.

If G were to join the kids on the outdoor adventure with their friends, the whole day would be completely different, even if G was perfectly well-behaved.  They'd be on constant alert that he'd make an impulsive move and run for it.  They'd be embarrassed if he was clumsy or said the wrong thing.  They're too young to have this stressful nervous undercurrent.  Let them be free for an afternoon!  That, my dear friends Steve and Julie, is more than enough gift for us!  So N and M went on a fun adventure, and I was afforded an afternoon with G to bond during a chaotic week with no schedule and lots of social activities.  Win/Win.  It turns out I made the correct decision.  The next morning my daughter said to me, "Mom, G would have run into the street if he would've come yesterday.  We were by a road and had to do lots of climbing and walking through the snow.  It would've been really hard with him."  This from my patient, easy-going child.  She thought about G and his difficulties even though he wasn't there.  She is tuned into his needs, so much that it follows her it does for me.  That's just too much, it breaks my heart and I wish I could make it easier for the kids.  The afternoon outing was a great gift of freedom to laugh and play with their friends.  Still, my husband and I are floored by this kind, generous offer, we can't stop smiling and feeling great about our friends Steve and Julie.  That's the true meaning of Christmas: an act of giving that's completely unsolicited and selfless, expecting nothing in return.  Bless you, friends!

Passing the candy bowl at the end of each meeting.
N tells his favorite part of the meeting,
and shares ideas for future meetings.
G (in stripes) wanders around
checking out costumes and candy.
A few months ago, we were blessed to find a sibling support group for autism families.  After voicing my concerns about the toll G was taking on my fam, I was referred by a friend to SibShops.  I emailed, called and found the leader of our local chapter to be positive, fun, energetic and open.  Going into the first meeting, the kids were nervous and unsure, and I hung out for several minutes when I dropped them off, worried that I'd thrown them into something they weren't ready for, or wouldn't like.  When I came back to pick them up, they lingered and stalled.  They chattered enthusiastically on our way out to the car and the entire way home.  My daughter exclaimed, "Mom, I was having so much fun I didn't want to leave!"  Epic win!!!!  The group opens up the floor to voice concerns, frustrations and challenges that sibs face.  The sibling workshops use team-building and confidence building to make the children more aware, tolerant, more open about autism.  The biggest boon for us: they found out they aren't alone.  My amazed son told me on the ride home, "They asked who got embarrassed with their sibling in public, and EVERYONE raised their hand!  I couldn't believe it!  I guess we aren't alone."  Then he expanded to talk about some of the examples the kids talked about.  Each example was an issue we face and find frustrating, isolating.  This from my "I don't know," child who clams up when I try to talk to him about his troubles.  Double epic win!!!!

Holiday parties: After their brief meeting,
SibShop kids make gifts and set up activity stations
for their autistic siblings and oversee the fun.
The SibShops program gets N and M thinking and talking.  After each meeting, they raise issues and topics at odd times.  I note how much they think about, how much they're affected by G's challenges.  I'm glad that they have an impartial forum for support to work through these troubles.  No matter how hard my husband and I try to remain impartial, the kids know we have G's needs in mind too and still may feel injustice or bias.  The kids both look forward to their monthly meetings, and during the holidays, ASD sibs were invited to join in the festivities for a portion of the meetings.  This gives my kids more exposure to other ASD kids, their diverse challenges and family dynamics.  G is high functioning, many of the other sibs are not: nonverbal, non-social, in wheelchairs, walkers, unable to care for themselves, etc.  This gives the kids perspectives that are truly priceless.

Lastly notable is my GLORIOUS find of a winner Autism center and SUPPORT Group!  Hallelujah!  I reconnected with an old friend who moved away to another school district (that's how awful ours is rated for obtaining special services) when she learned that her son was autistic a few years ago.  I'd been searching for her, but was disappointed.  The night before G's big "School Diagnosis and Recommendations IEP" last February, a former classmate Julie sent me a recommendation via Facebook to an ASD center I hadn't heard of.  I was surprised to learn that my middle school classmate is an ASD mom too.  I thank Julie so much for her timely referral - a moment in the middle of the night which I truly felt shaken, unsure, lost and ALONE.  I needed hope and a miracle badly.  I opened their website - just before logging off, I noticed my lost friend's name!  Talk about divine intervention!  I emailed my old friend, she sent info, and by the next week I was chatting with her about the center's services.  What a find!

Temple Grandin: Funny, gifted, inspiring, autistic.
I attended an ASD conference last spring and my friend toured me around, introduced me to helpful resources, and invited me to sit with her at the Autism Collaborative Center's table with professionals, therapists and key development professionals.  As it turned out, we were seated just one table away from keynote speaker Temple Grandin.  I was able to note her quirky ASD behaviors up close and personal.  What a great opportunity.  The center offers incredible programs and services.  My kids love it when they come along for family events. 
When I started in a support group at ACC in the fall after trying a couple others closer to home, I immediately clicked with the staff, met wonderful parents, and felt open to express myself.  I took advantage of a respite care afternoon together with 2 other ASD moms from my support group.  We went to a crowded art show/sale teeming with people bumping and pushing.  We lingered over a long, conversation-filled lunch.  Either activity would be impossible with our ASD kids, what a delightful treat.  3 hours of worry-free peace - a highlight of my year.  How comforting it was to speak the same language, compare notes and discuss our concerns and triumphs.  I love this wonderful center and the new-found support I've found at long last.  Bonus: I get to see my strong beautiful friend whom I missed when she moved away.  It turns out this can-do woman helped to start ACC from grassroots.  This amazing mom is caring for 3 children on her own.  She manages to find and provide therapies for her challenging autistic son, encourage them all in their education and activities.  She's a bright spot at the center, wears a comforting warm smile and appears relaxed.  Wow - I want her secret!  She's a wealth of knowledge and incredible inspiration.

I've learned that God sends help in rare forms when you truly need it.  The referrals and opportunities appeared when I was desperately in need of a beacon of hope.  The selfless acts renewed my spirit and faith in human kindness.  Someone understands how difficult my family has it right now.  Someone thought about us and took action to help out in some way.  How cool is that?

Thanks to each of you who has touched us and lighted our path...Gratefully paying it forward in any way that I find possible, always do.

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