Thank you for all your prayers!

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I am so grateful for all the blessings we have in our lives! Our family has been loved and supported in the most amazing way over the past few months since the craziness started with Alex’s placement and talks of moving him. I am so grateful for all of your prayers and good thoughts!

The update is that in just about every aspect Alex is doing better. The high intensity aggression has come down, medications have been adjusted to the point where we think we’ve got the right amounts to help just where he needs it, and he is overall a happier, healthier kid. Alex’s direct staff seem pleased in general.

But on Friday, one of the administrators called me to “touch base” about my trip to New Hampshire to see a possible placement (a trip I’m leaving for now). He said plans are still moving forward to make Alex leave his current placement– the only place that has made serious progress towards helping him get home to us. When I asked why that was still the case given all the positive progress we’ve seen (which has eliminated doubts of their being able to treat him) I was told they’ve got a “quit while you’re ahead” type policy (my words, not his).

So I need your prayers again. Please pray that all of the people involved with my beautiful boy will see clearly the importance of keeping him near his family, and will advocate in every way possible to make that happen. Pray that I will know the right questions to ask in NH to get the information I need to advocate for Alex. And please pray that God will open the hearts and minds of any naysayers so that they can clearly see there is a win-win-win solution out there and we can find it.

This is not about a mother’s sadness at the prospect of missing her son. It is about the deep knowledge I have of what makes Alex tick and what will truly help him. I refuse to allow him to be punished by taking away the one thing that is most meaningful and rewarding to him– family contact.

Thank you for being here to listen.

xo

World Autism Awareness Day 2013

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Today we light it up blue, my beautiful boy!

alex something to say

In honor of you, my beautiful boy!

alex always loved

Because you are loved and handsome and fine,

mom and alex

And because I am honored you’ll always be mine!

In 2013, I want to make this place your home…

The song in my head on this New Year’s Day:

I know this song was not written about autism or me and my son.  But when I listen to it, it touches my mama heart in a unique way.  I hear the words and I envision a home where Alex can live happy, healthy and safe with the people who love him most.  I remember how our family worked hard to make the world okay for Alex, to enable him to enjoy everyday experiences, to show him new things.  I think of the anxieties and sensory issues that are so challenging for Alex and so many kids on the autism spectrum.

autism home rescue 1115201202Thank you, Phil Phillips, for writing a song that inspires this mother to think once again about creating a real, functional home for my son. 

For inspiring me to believe it’s possible for Alex to come home to us, and for helping me to see the detailed pictures of that transition in my head. 

I am grateful for your poetry and your beautiful music.

~*~*~*~*~*~*~*~*~*~*~

“Hold on, to me as we go,
As we roll down this unfamiliar road.
And although this wave is stringing us along
Just know you’re not alone,
Cause I’m going to make this place your home.
Settle down, it’ll all be clear.
Don’t pay no mind to the demons,
They fill you with fear.
The trouble it might drag you down.
If you get lost, you can always be found.

Just know you’re not alone,
Cause I’m going to make this place your home.

Settle down, it’ll all be clear.
Don’t pay no mind to the demons,
They fill you with fear.
The trouble it might drag you down.
If you get lost, you can always be found.

Just know you’re not alone,
Cause I’m going to make this place your home.”

~ Phil Phillips

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Par-Tay!!

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Today’s the online launch party for “Be Like Buddy!”

Go on over there now (click here or on the picture above)

to join the celebration & get your free stuff!

Be Like Buddy!

autism home rescue 081720121Ohmigosh have I got news for you! 

You all know how I love finding good autism resources to share, right?  Well stay tuned for more information on my latest discovery:

Be Like Buddy!

 

Created by the father of a child with autism, the “Be Like Buddy” educational videos and resources are right on target. 

I mean…  RIGHT.  ON.   

As in– the guy who put the videos together knows autism.  The website creators know autism.  The folks who made the educational materials know autism.  The entire team– plus the absolutely adorable and loveable puppet named Buddy who stars in the videos– really understand and connect with families like mine– and YOURS too!

Stay tuned to Autism Home Rescue for more info next week on how YOU can get absolutely free  resources for autism parents, educators & professionals this month at the online launch party for Be Like Buddy”

In the meantime, please go to the Be Like Buddy” facebook page and Like them to make sure you stay in the loop! 

And while you’re on Facebook, dear loyal readers, please Like Autism Home Rescue’s facebook page too!  (see the handy dandy button to the right on this page!)

the ride.

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I just wanna be the mom.

Alex’s head rests on my shoulder in the waiting room, my arm across the back of his chair.  He lets me kiss his hair.  He doesn’t feel good.  I know, his father knows.  We need someone to explain why.

Another puzzle.  His belly, his behavior.  Specialists.  A second appointment.  “You do know your child best.”  Consult, consult, re-evaluate, adjust.

The weight of Alex’s body against mine grounds me because I know he is seeking comfort and he finds it in that unspoken connection.  It is communication and I know what it means, I understand and don’t second guess.

I just wanna be the mom, the one to stroke his hair and bring him soup.  To talk softly or read books.  To let him rest on my lap.

But so much of the time that’s not how it seems to go.  Parents lead teams, fight for justice, find answers, forge new paths…. don’t we?

< sigh >

I am just the mom.  Maybe I’m supposed to feel as if I’m on a horse charging through the forest, riding on to victory!  Wind in my hair, a confident counterpart to a powerful animal leaping obstacles.  Adrenaline rush and excitement at conquering the challenge!

But no, my reality feels more like the Teacup Ride at the amusement park.  Tinny carnival music slightly off key, clanking of safety locks & bars, the whir of start up after a half-hearted warning about risks & keep-your-hands-and-feet-inside-the-car by a lazy, monotone, uninterested attendant.  Then the exhilarating feeling of leaning to the right to be abruptly yanked to the left into an endless circle.  Sliding along the seat, bumping into your cup-mates, grabbing the wheel in the middle to stay stable– and wondering who else might turn it at full force to make your stomach flip flop as you fly around again at nauseating speed.

If you resist the momentum or try to focus on real life beyond the ride, you feel sick.  If you yield to the movement, you find a fleeting thrill– maybe even a joyous freedom.  Then it ends too soon and you’re back to the hot, crowded line to wait for another try.  It’s the resistance that causes pain.  And whether you ride without resistance or not, you’re likely to make yourself sick anyway.

I just wanna be the mom.

I hold my breath and attempt a calm smile, an even tone, picturing a ballroom dancer in a flowing dress being led by her partner around the dance floor, poised gracefully to be turned and dipped and spun at will.  Giving the illusion of control and strength, able to dance without falling, to step without causing pain, to perform a role.

“Yes, we have the information you requested.  Could you please tell us when we might be seen?”

All the while, my mind seeks answers, spinning like a tea cup, trying to focus, feeling confused and frustrated, wondering why this all can seem so hard.

I just wanna be the mom.  I was born to be the mom.  Not the spinning performer, the equestrian archer, the triumphant solver-of-problems!

When it all comes to a complete stop, when my day ends and the safety locks slide apart, I find my footing and move again to the sidelines.  I feel tired.  My head rests on Aubrey’s shoulder and I sink just a bit, as her arms wrap around me, holding me still to stop the spinning inside.  There is relief in that unspoken connection.  It is communication and I know what it means, I understand and don’t second guess.

I still just wanna be the mom.

I will try again tomorrow.

“God bless our whole life together”

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Today I am grateful for:

  • Hope.  Plain and simple.  Sometimes I don’t realize that I’ve lost touch with hope.  I have all these quotes taped to my computer (“All is well, out of this experience only good will come” and “Optimism is the faith that leads to achievement” and “Leap and the net will appear” etc.) and sometimes I think I do have optimism and faith and I am trusting and leaping freely.  But then I realize somewhere along the line hope has actually slipped to the back of my mind, that I’m not as free as I had thought, there’s something heavy in the background sitting on a small but growing patch of anxieties.  When hope appears again, the relief I feel is like a cool breeze from the ocean on a hot beach day– I don’t realize how I had missed it or how sheerly *good* it feels until it comes again and reminds me.  This week I saw the movie Wretches & Jabberers for the first time.  It brought that feeling of hope back to me.  Not because of the story or the specifics, but because as I watched this film another window opened in my mind.  My proverbial “house” where God closes doors and opens windows became bigger and through the new open window created by these filmmakers came a gentle ocean breeze which awakened hope again in me.
  • Rainbows & nail polish.  I painted my toenails last night, each toe a different color like a rainbow, because Aubrey & I will be attending the Pride festivities in San Francisco.  Why something so mundane on a gratitude list?  Because I like pretty toes, because I can afford five different bottles of colors (cheap colors, but colors nonetheless!), because I like sandal weather.  And most importantly, because I live and work in a place where I can be open about who I am and I can show it on my toes.  How grateful I am for openness and acceptance!
  • Bedtime prayers & Alex’s words.  “Wretches & Jabberers” had a profound effect on the way I see the whole autism world.  One of the two main characters in that film, when asked what people with autism are like, responds:  “More like you than not.”  I know that.  Of course I know that.  But deep down that line stirred something in me.  It brought all the advocating, writing, fighting, learning, stretching, wanting, waiting, worrying, trying & planning & crying & wishing I do for Alex back to the realm of typical mother.  I do all that because I am mom, not because the autism needs to be solved.  The communication gaps need to be bridged, the awareness needs to rise.  But my beautiful boy is still– definitively– more like me than not.  Looking through this new, hope-full window last night, I cuddled up with Alex for bedtime prayers.  We said our usual stuff, we said thank you, we asked God to keep the people we love happy & healthy & safe.  I told Alex I am proud of him & I know how smart he is, that I’ve known it all his life, I have always believed in him and always will.  Then I asked if he had anything else to add to prayers.  He paused a minute, looked at me thoughtfully and said:

“God bless our whole life together.”

Amen.

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“Write Mommy”

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Alex’s Mother’s Day gift.

Alex-isms

wary of little sisterOkay, you all know my daughter Hannah can throw out the funniest one-liners.  She’s got the language, the attitude and the comic timing of a pro.  But she’s not the only kid in the family whose sophisticated sense of humor keeps me in stitches.  Alex’s humor is a bit harder to blog about– since most of the stuff that cracks him up is visual or slapstick (email me for the link to his YouTube channel if you like!)– but over the years there have been several memorable moments of perfectly-Alex funny which will always stick with me.

alex pumpkin2Alex loves to mix up words or find alternate meanings for words and phrases.  His receptive language, reading comprehension, spelling and writing abilities are right up there with super-smart typical kids.  Only difference is the challenge he has with expressive language and getting the words out.  For your reading pleasure, some of my favorite “Alex-isms” :

 *x*o*x*o*

alex grinMe (talking out loud writing a grocery list):  “… tomato sauce, diced tomatoes, kidney beans… ground meat, chicken… Alex, would you help me write the rest of this?  Write down what you want at the store.” 

Alex (taking pen & paper):  “ketchup, mustard… butter… mutter… Mommy!”  with a big winky grin.  Hands paper back with the rest of list printed and a smiley face drawn and labeled “mommy.”

*x*o*x*o*

At bedtime, Alex breaks into spontaneous giggles during cuddle time:  “Mommy, go to SHeep!” 

Me:  “Go to SHeep?  Silly boy, you mean go to—” 

Alex:  “Baaaaaaaah!”

*x*o*x*o*

charming alexAlex (huge charming grin, playing his version of Scrabble):  “Word!” 

Me (laughing):  “Dude, truck-azonkquilapsafo is *not* a word!”

 
*x*o*x*o*

alex's bowl and plate artAlex (age 3 in doctor’s office, singing to himself while Mom & Dad consult with the nurse):  “Bah-munty.  Da funty munty. .. Bah-munty munty…” 

Dad:  “Wait a minute, our son is singing ‘Brass Monkey’ by the Beastie Boys!” 

(and indeed he was– in perfect rhythm!)

*x*o*x*o*

alex goodbye pleaseMe (walking Alex to the door to let in a home program teacher he didn’t particularly like):  “Let’s open the door for our friends.” 

Alex’s welcome message:  “Goodbye, please.”

 
*x*o*x*o*

alex laundry chuteWhen Alex was a baby, I made up some ridiculous nicknames for him (as all new mommies do when they babble with their newborns).  One of my favorites was “Bunny Luv Pickle Pop” and I used to sing it to the tune of “Sugar Pie Honey Bunch” by the Temptations.  One of Alex’s first home program teachers finished a session of discrete trial training with him, spontaneously turned to Alex and in an animated voice said “Bunny Luv!!” to which 4 year old Alex responded without hesitation, “Pickle Pop!!”

*x*o*x*o*happy kiddos
 
 
 
 
 
 

:~) Quote for the Moment (~:

autismhomerescue11241101“Miss Rhode Island, please describe your idea of a perfect date.”

“That’s a tough one.  I would have to say April 25th.  Because it’s not too hot, not too cold, all you need is a light jacket.”

~from the movie “Miss Congeniality”

 

A re-publish of one of my favorite posts:  One hour in another time ….

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