Where a husband and wife blog to: continue the story told in a book called Dancing in Cornmeal: Life with Autism; enhance the conversation about autism; relieve a writer's need to write; inspire (when the stuff here is really good); network; and share - especially recipes that follow the SCD and Paleo diets. See "Welcome" under TOPICS for a better description, then just keep reading along...

Thursday, July 12, 2012

The Real Story of the last 10 years: Part III: Dear Friends and Loving Gestures

Here is another of many valid perspectives on “the rest of the story” or “our family’s last 10 years with Lauren.”

We were surrounded by dear friends and loving gestures.   That’s also a great description of what our life with autism looked like over the past ten years. 

There’s no way I could remember the many blessings in the order they occurred.  I don’t have files with dated invoices and names on top for each occurrence like I do to help me recount the medical history.  (Wow, that makes me reflect on what I obsessively save in a highly organized fashion!)  But even without such memory aids, these events are what I can retrieve easily in my brain, whereas, for the life of me, I can’t remember the name or office location of the last neurologist Lauren saw.

So here’s more of the REAL rest of the story with a perspective of gratitude, with a promise that the first mentioned isn’t necessarily “first,” and the last mentioned isn’t necessarily “last.”  Every memory and person included should be considered FIRST in that it/he/she are important to who Craig, Bryn, Lauren and I are today, and was worthy of mention in this blog post. 

Before I looked through photos in order to choose some with which to tell this part of the story, I thought I would tell it in a timeline fashion.  But as I accrued photos, and couldn’t find certain ones (stored yesteryear on external hard drives), I realized that this isn’t necessarily a chronological story; it’s actually a circular story.  Or many circular stories.  But I’ll start once again back when Lauren was 10, and see where we head.
When Lauren was 10 and at her worst ever—health-wise and behaviorally—this was the best family photo one could capture of our whole family.
This photo was taken when my parents and my sister and brother-in-law were visiting us at a low point before Lauren began eating SCD.  The visit was a treat, as I saw my parents only once or twice a year and my siblings much less.  But they all have been a support over the years, each in their own way.  In 2005, my parents visited us for a week so that my dad could paint our wood-sided house.  Craig, Bryn and I helped, but Dad was the full-time painter in chief and I often wonder how we would have accomplished that without his help.  A few years later, after we had rid our attic of rodents, he found their access points and did the construction to close them all up.  He helped Craig to build a swing set for Lauren.  He did many things over the years that we strove to do, but were too tired and busy from triage-care for Lauren and homeschooling.  Craig and I are both thankful for my dad coming up with ways he could help over the years as a man with muscle, tools and compassion for our situation.

This is a picture of my mom and me on that same visit of the family photo above.
My sister and her husband were seated below us, but I cropped so I wouldn’t take prerogatives with other people’s photos on the internet.  (I don’t think Mom will mind.)  One of my mom’s amazing gifts to us throughout “the worst days” were the many, many outfits for Lauren—the houdinis I’ve mentioned before—she designed and made by hand.  You’ll see a few versions of them in the photos in this post.  I can’t even add up the time, effort, money and love that went into those.  I believe she was working a full-time job the entire span of years she was putting those out at a pretty significant rate.  The other thing I credit my mom with is something more expected of a mom, but not all mothers are there with it—she answered her phone any hour that I called, and could always talk.  Well, mostly listen.  (Dad answered the 3AM calls, but he knew to pass the phone immediately to Mom when he heard my squeaky, “Hi.  Is Mom there?”  Like duh, of course she’s there at 3AM, but what do I ask, “Hey, is Mom still up?”)  She even often surprised me with a new perspective by the end of the conversation.  The other thing she did is—she came.  Dad and Mom couldn’t easily make the 1200 mile trip between their youngest daughter’s school schedule and their work schedules, but it seemed like I saw them on a regular basis, and when I was absolutely about to melt, they appeared.

My older sister—she used to write me the loveliest notes.  They were silly, newsy, fun to read, provided me a moment’s break from whatever was troubling me, and made me feel loved.  She also sent me packages.  They were like the notes—often silly and fun.  She worked retail and I think when she saw something in her store that might make me (and often the girls or Craig) happy or laugh, she bought it.  As soon as she had a “box-worthy” collection of purchases (and maybe she’d throw in a really cool hand-me-down shirt or jewelry) she’d ship it out, usually with one of her great notes.  She’s not in retail anymore, and other things have popped up in her life (like married children and grandchildren!) so I don’t get these anymore; but when I think of the many blessings my siblings have been to me over the years, I think of those notes and boxes with a smile.               

My brothers are more callers.  I LOVE that they call me.  I’m horrible at remembering to call people, so I love that they think to call me.  If something can warm the cockles of one’s heart, that’s it for me—a guy who thinks to call his sister out of the blue and on her birthday, too. 

I think I’ve mentioned that Craig’s parents were here to care for Bryn and our critters when we went to New Jersey to see the DAN doctor.  They’ve done many other huge favors for us as well.  Like the many home improvement projects Craig’s dad led, supervised, provided tools for and manually labored on alongside Craig.  Hey, I remember Craig’s mom painting alongside me, too.  There have been many expressions of love from that side of the family, too, and if I had to imagine our journey through the last 10 to 20 years without their presence, I wonder how we would have addressed those humps over which they definitely eased the way. 

Okay, so now that I have named those important names (because I do NOT want to diss family when talking about the circles of love that have encased our family), I’ll move on to some less predictable parts of the story.

Church—another place where you may find a circle of love if you’re open to it.  I spent a whole chapter on it, “To Church or Not to Church,” in Dancing in Cornmeal.  But here’s something that happened after the publication of Dancing in Cornmeal.  Right before Lauren’s behavior took a huge turn for the worse, friends at my church involved a group called The [local town] Pilot Club to help raise funds for a special needs bicycle built for two that would allow Craig to take Lauren on bike rides on our local paved trail.  Lauren had a new healthy hobby, and her daddy had a way to escape, but with her, knowing she was safe and happy.  That bike was a huge blessing, and represented a lot of love.   Here’s a clear picture of the fabulous bike:
And here are some less clear photos of Craig and Lauren testing out the bike the day it was delivered:
You can see from these pictures that Lauren sat in the front, while her dad peddled from the back.  (I was not strong enough to pedal and steer with Lauren’s and my weight on such a long bike, so it was entirely Craig’s adventure.) 
The wonder of the bike was that the steering and pedaling were controlled from the back seat.  Lauren could passively pedal from the front seat, and her handlebars moved with Craig’s, but she didn’t have to do anything to enjoy a bike ride.  There was a 5 point harness seat belt to keep her safely in her seat.

Between Craig’s, Lauren’s and the bike’s weight, they were like a locomotive on the trail, getting up to pretty high speeds and needing quite a distance to slow and stop.  But they never got into an accident.  She enjoyed it for about 4 years before she outgrew its weight limit.  Thankfully, we were able to pass it on to a professional bike team that takes blind and physically disabled kids on bike rides.  The man who came to our home to accept it for the team told us that there were some physically disabled kids with too great challenges to ride on the bikes they have to offer, so he was thrilled that this bike would give those kids an opportunity to experience “the freedom and rush of air of bike flight” (as I like to think of it) for the very first time.  We mourned the end of Lauren’s use of that bike, because she loved it so much. 

Some other things my church friends did for us:  Rescued Lauren and me at the head of our hiking trail when I arrived back at the van and had a flat tire; Rescued our whole family when we were all out bike riding, Craig and Lauren on their bike for two, and Bryn and me on our good ol’ bikes for one.  Speaking of bikes for one—when a church friend realized that the funds needed for the special needs bicycle for two had been raised, he asked if Bryn and I had bikes.  When he found out that Bryn did not have a bike, he took her shopping and bought her a 3-speed bike and a helmet!  There are other things our church family did for our family when we were in need, and if they ever read this (not all are blog fans, you know) they’ll know who they are.  (Church friends tend to be modest and like anonymity in their generosity.)  So let me take this opportunity to throw out a big internet kiss to those who have helped us in big and small ways over the years.  Where charity in love prevails, there God is ever found.  Your charity in love will never be forgotten.

Though I mentioned our homeschooling community in my last post about homeschooling and celebrating life, I want to mention them again from the perspective of gratitude for their caretaking of our family, alongside our church friends.  (Few people in our church homeschool, so the two groups didn’t overlap much.)   I often credit Bryn’s amazing love and acceptance of her sister to homeschooling.  Bryn has been homeschooled since Kindergarten, so most of her peers have known Lauren since she was a little, cute, quiet toddler.  They never had a moment of “meeting” Bryn’s bizarre little sister, or realizing that she didn’t go to “their” school.  Lauren was always just Lauren to them.  She tagged along with us when she was able, and stayed home with Mom or Dad for less Lauren-friendly field trips and play dates.    We probably don’t have enough fingers and toes in our entire family to add up the number of times homeschooling or church friends brought Bryn to events with their families when it was too difficult for our family.  Fairs, festivals and circuses, theater and concerts, museums, paint ball, roller skating—all of these things Bryn experienced because another family took her into their fold and loved her like their own for a while so she could have a childhood experience that every typical kid should have.  This is probably one of the most amazing blessings our friends have bestowed on our family.  Bryn may not know what it’s like to have a typical sibling relationship—certainly she doesn’t “get” sibling rivalry or bickering, because her sister could never speak well enough to bicker—but Bryn knows what it is to have a brother and sister.  She knows what it is to have a weaker, needier sister who gets way more attention, thanks to Lauren.  And she knows what it’s like to have a mentor, a guide, a giggly confidante, a play partner, as well as younger ones to guide and care for, thanks to the many families who often took her in and included her. 
We met Elizabeth as a 10-year-old homeschooler.  Elizabeth started out as a mother’s helper and became a trusted Lauren caregiver for about 8 years.  She now lives far away and is a married lady, but still expresses her love for Lauren in the work she’s chosen, as well as via emails! 

Elizabeth and Lauren
Fall 2002

Elizabeth & Lauren
January 2003
There’s no doubt in these pictures that Lauren loved this girl!

Lauren had other kind caregivers I mentioned in my book, but my close friends, Jeanne and Patty, are generally the only people (other than Bryn) who have watched her for us over the past ten years.  This allowed Craig and me to go on a few dates, as well as run a few important errands, like going to court for Lauren’s guardianship hearing.  One especially funny childcare moment was when neither Jeanne, Patty nor my mom were available to watch Lauren on the day of Bryn’s Sacrament of Confirmation, because they were also attending the Confirmation.  (Fourteen-year-old Lauren didn’t yet attend church with us.)  I reached out to two dear homeschooling mom friends who weren’t trained or confident in Lauren-care, but were still ready and willing to help.  Lauren loves to ride in the car, so on this day, just before the church service started, Craig secured Lauren in her car seat.  Bryn and I were already at church, so these friends dropped Craig off at the church to join us, then continued on their way with Lauren for a long, casual car ride with the expected snacks, water cup and music repertoire at the ready.  As soon as the event was over, Craig called the friends, who came back to pick him up and bring Lauren and him back home.  Lauren was as happy as a clam with the ride and with the intrigue of having favorite lady friends being in the front seats.  And Bryn had both her Mom and Dad at her last Church Sacrament event.  Well, likely there will be a wedding one day, but our hope (and Bryn’s insistence) is that Lauren will be able to attend that one.   (After all, these two beloved friends will be unavailable to drive that day!  They’ll be at a wedding!)

In my book, I mentioned other people who actually did not need to love, but chose to love, such as our hairdresser, Kirsten, who still sees Lauren every time her bangs begin to cover her eyes.  Lauren loves a trip to Kirsten’s salon.  She’s usually pretty cooperative about holding still without Mom or Dad near as support, and she began looking at herself in the mirror occasionally (on super happy days) just over the past few years.  She seems quite happy after a trim when her wavy hair is bouncy again.

Even though Kirsten is a professional, trust me when I say that she has gone above and beyond the call of duty and has been a friend as much as, if not more than, a professional to me and my family.  I can think of no other hair salon at which Lauren would be comfortable enough to sit in that momentous chair, because Kirsten is what creates the comfort in Lauren there.  Lauren feels fully accepted by Kirsten so there is no “first hurdle” when walking through that door.  On a good day with no anxiety or tummy problems, there are no hurdles, only joy, because she gets to see her friend, Kirsten!  

Dr. Beth, Lauren’s first chiropractor, was another professional who showed love above and beyond the call of her profession.  Dr. Beth saw Lauren during (and tried to adjust Lauren despite) some of her worst behavioral moments.  Her heart simply went out to Lauren and our whole family as she tried to help, to advise, and sometimes just to be there with tears in her eyes and a hand on our shoulders.  It’s usually a hard thing to express such giving in a tangible way; but Dr. Beth did one thing in a big and tangible way that makes it quite easy to show you her incredible spirit, as well as the spirit of her friend and employee during that time (and our friend), Laurie.  Dr. Beth had been seeing Craig (incredible man, husband and dad) weekly for about 8 years when Craig turned 40.  Dr. Beth decided he needed to be celebrated in some super special way, and she came up with the way. 

This was back when Craig’s and my favorite show was Trading Spaces and we were always in the throes (or anguish) of DIY home improvement; but of course, DIY moves slow with a child with autism, and we had just moved into our 30 year old house in need of lots of updates.  So Dr. Beth had heard us make jokes about Craig’s office with its pink carpeting, pink chair rail and pink-on-white floral wallpaper.  I was in on the gift, so had supplied Dr. Beth with the info needed, and on the weekend before Craig’s birthday, Dr. Beth and Laurie showed up for a day, ready to paint, and with a truck full of décor.  (By this day, Craig knew what was up, as a woman had come earlier on 2 separate days to remove wallpaper.) 

Here are some before and after pictures of Craig’s office, his 40th birthday gift:





Shortly after this room transformation, Dr. Beth was in an accident that left her permanently injured and unable ever to go back to chiropractor care.  Our family has missed her greatly over the years, though we stay in touch.  There are some people I’m fortunate enough to know personally who I hold high as role models, and Dr. Beth is one of those—I think of her often as a model for pulling every ounce of precious life out of our time on this earth, and for helping others to do that, too.

Laurie continued working at the chiropractic practice for a while after Dr. Beth stopped working there, but she has since retired and we stay in contact, too. 

Some other professionals I hold dear:
Dr. Ray, who took over our family’s chiropractic care after Dr. Beth’s injury.  I’m not ashamed to tell that the first time Craig and I presented Lauren to Dr. Ray for an adjustment, it was with a bit of trepidation.  Lauren loved Dr. Beth and they had their weekly drill for getting the procedure done.  On days when Lauren was healthier and happier, it was a smooth drill with silly moments, like the time Dr. Beth massaged Lauren’s neck as she talked to Craig and me, and when she stopped and pulled her hands away, Lauren reached around, grabbed Beth’s hands and placed them back on her neck.  (Another AHA moment of “How necessary is speech?”)

Dr. Ray not only developed his own sweet drill with Lauren over time, they also now have a super special relationship.  In fact, on the day we could report to Ray that Lauren had said, “Reh Reh” when we asked if she wanted to go see Dr. Ray, it was like Ray had gotten a Christmas gift. . . or at least a better Christmas gift than his sibling, as he jumped on the phone to tell Beth that Lauren had said his name.  “Did she ever say Beth?!”  he asked competitively.  Which is one reason we love him so, and why we have always loved the practice still named after Dr. Beth. 
 Dr. Ray adjusting Lauren
Vicki, Lauren’s speech therapist, is another professional I mentioned in my book, because she’s been fantastic, and in Lauren’s life, for a whopping 16 years now!  Still today, Vicki’s office (no matter where it moves to as her practice grows bigger and bigger) is one of Lauren’s happiest places to be.  


Occasionally over the years, a bit of therapy had to happen in the car, and Vicki being okay with that is probably why Lauren loves her so, too.

Just this past month, Vicki was able (for the zillionth time) to advise and reassure me about decisions Craig and I were making about how to address Lauren’s latest behavioral challenges.  It’s great to have someone in our life who’s super knowledgeable about speech processes and therapy methods, as well as sensory and behavior challenges of autism; but having someone like that who knows Lauren’s complete history and can remind me of aspects I may not be remembering or considering at the moment—that’s PRICELESS!

As I mentioned, Vicki’s practice has steadily expanded over the past ten years and just about 18 months ago, she found an OT worthy of Lauren.  I mean . . . able to work comfortably with Lauren.  Melissa has become a new dear friend of Lauren’s for whom our whole family is super grateful.    Like Vicki, Melissa has a level of patience and empathy that allows her to celebrate whatever Lauren is capable of in each session, which in turn helps make Lauren comfortable and open to new challenges.  It’s a lovely cycle that often makes way for some happy surprises.

Speaking of cycles, I’ll end this post as I began, with another family photo.  I’ll end with a photo, because it reminds me of our next door neighbors, who took the photo when we had known them for only a year or two.  I love to put a family photo in our Christmas newsletter, because . . . well, that’s my favorite part of a Christmas card or letter from faraway friends I haven’t seen in a long time.  Getting such a photo with all 4 of us staying in one spot long enough, never mind looking at the camera, is always tough; the years when Lauren was at her physical worst, it felt impossible.  This particular year (2004) our neighbors came to our rescue.  At the time, we had a wheelchair which we used to bring Lauren to crowded public places, as well as to have her outside with us while we did yard work.  She could stay happily in those two, great, big, scary scenarios as long as she had that wheelchair as a seat, predictable boundary and home base.
For the photo, Lauren sat in her wheelchair in front of us (with a blanket on her lap—it was cold!) and we kept hands on her to encourage her to stay with us.  In the end, our neighbors took enough photos that we actually got a few of all 4 of us looking at the camera.  Though you may be able to tell Lauren’s not feeling well at the time, I think you can also see our great love for her.  Her permitting such craziness as sitting outdoors in the cold with us for no wholly logical reason shows her love for us, too!  (Or is it tolerance?) 

Much thanks to our super gracious neighbors who have continued over the years to look out for us, while we look out for them, like all good neighbors should.

We’re quite grateful for all the blessings we’ve experienced over the past 10 years, from people right next door to many states away, family, friends, professionals and acquaintances.  They each, uniquely, made our little family’s survival possible, mostly by re-inserting reasons for joy and hope—the stuff we definitely needed to get to where we are today.    


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