Six month update, and more random musings

six monthsHey everyone, thanks for taking time to read Gracie’s blog.  I appreciate all taking a moment to delve a little deeper into our lives, and gain a better understanding of those who have severe autism, the impact autism has on our lives, and so on.

I’d planned to update everyone on Gracie’s progress, post-stem cell therapy, after one month, three months, six months, and then after one year.  Well, it’s been six months now.  No effect to date, as far as I can tell.  Five thousand dollars for nothing, it seems.

Dr. Udell told us not to pursue stem cell therapy, as he didn’t think there was any benefit to be gained.  He told us a story of a mother who spent $60,000 $120,000 getting her child three separate stem cell therapy treatments outside of the United States, and how the mother stated she thought the treatments helped her child.  Dr. Udell asked the mother, repeatedly, if her child was talking yet.  The mother continued to prattle on about everything else, avoiding the doctor’s question.  When she could no longer avoid the doctor’s question, she finally admitted to him that, no, her child still was not talking.  Needless to say, I won’t be telling Dr. Udell we pursued the same therapy for Gracie.  I suspect he knows, though.

Oh, we received the results of the chromosomal microarray analysis, or the CMA.  We learned that as far as the doctors at Lineagen can tell, Gracie has no genetic variation known to have a medical impact. Although the cost was covered by insurance, that was another $5,000 dollars down the drain.

I’ve been pondering a lot of things, as of late.  All the things we do for Gracie, the ways her autism has affected our lives.  I think back to the time I was concerned about Gracie spending hours on end in her bedroom, constantly flicking the lanyard attaching her chewie to her shirt, with little else to stimulate her.  So we bought her a television with a DVD player built into it, and mounted the TV to one of her bedroom walls.  I parked her dresser in front of it, hoping she’d leave the TV alone and not destroy it.  I bought her a Baby Bumble Bee video set thinking that will stimulate her, along all the movies we have for her.  I even bought Gracie a Roku stick so I could stream movies to her television, thinking I could provide even more variety for her.  Gracie doesn’t seem to care for any of it.  She’d rather lay in her bed and flick her lanyard.  I still put her movies on.  The Baby Bumble Bee videos, not so much.  And the remote never worked for the stupid Roku stick.  Didn’t feel like messing with returning the Roku stick, so I downloaded the Roku app to my tablet to work the streaming stick from it.  Problem is, nobody else knows how to work the Roku.  Altogether, five hundred plus dollars for, eh, not so much.

A few months ago Gracie broke the keyboard on my laptop.  Inspired by a coworker of mine, I watched a Youtube video on how to replace my keyboard, ordered the replacement, and did the repair in less than 15 minutes.  For a lot less than what the Geeksquad would have charged me.  Then Gracie took to climbing up onto our desk in the family room (where my laptop resides).  Thus, we were forced to relocate the desk to our living room, which Gracie is unable to get into.  Then Gracie started messing with all the wires and cables running from the wall to our TV in the family room.  So I had to run channel raceways or cord covers along the baseboards to hide all the wires and cables.  Problem finally solved!  Another 15 minute job by Denny!  The cord covers look a lot better too.

There’s a family that lives in our neighborhood.  We see them in their front yard whenever we pass them by, going about our business.  The mom and dad, with normal children, all playing together, happy, having good times.  I am so envious of them, as Kristine and I could never do the same.  One of us always has to be watching over Gracie, making sure she’s not doing something to harm herself, or worse, doing something that might get her killed.  We live six miles from the nearest beach, yet we rarely go.  It’s just not a fun thing for us to do.  When we do go, Kristine has to hold one of Gracie’s hands while I hold the other, lest Gracie bend down to pick up sand and place it in her mouth, or place her hands in the sand and then rub it into her eyes.  When we do go to the beach, we have to control the situation tightly from the moment we step out of our car, until Gracie is safely ensconced back into our car.

This past October Kristine, Gabby, and I took a long weekend to visit family in Long Island, New York.  It was the first time I can recall us ever taking a trip somewhere without Gracie.  Just three days away, and I counted it as the first real vacation Kristine and I have had in fourteen years.  We spent the first day with Kristine’s extended family, the Surace’s and Piciullo’s.  One of Kristine’s cousins has a special-needs child also, and her name is Stephanie.  What a beautiful little girl she is, and I was touched by the love all of her family displayed for her.

We spent the next day in New York City and crammed as much as we could into that one day.  Took the LIE into the city to Penn Station, toured an exhibit, went to Central Park, hailed an Uber and a regular taxi ride, did a double decker bus tour during the day and in the evening, took a ferry to Ellis Island and the Statue of Liberty, went to Zucker’s for a bagel, visited the Ground Zero Memorial, had dinner at Bill’s Bar and Burger, and stayed overnight on the 34th floor of the Marriott in downtown Manhattan.  We were exhausted upon our return to Florida, but it was worth it.  I said to Kristine that we’ve got to do that again, get away.  We owe our little respite to my parents, who stayed with Gracie in our home to take care of her while we were gone.  Some have questioned why we didn’t take Gracie with us to New York.  The answer is simple:  there is no way on God’s green earth we could have kept her safe and have enjoyed ourselves at the same time.

Some time ago I had made a promise to myself, that Kristine and I would begin trying to enjoy our lives a bit more.  I felt like I was living in the movie Groundhog Day.  Wake, work, home, bed.  Weekend. Wake, work, home, bed. Repeat.  We attempted to have a monthly date night, but sitters we can trust are hard to come by.  We went a few months without date night.  I couldn’t take it any more.  I was slowly going stir crazy.  So recently I called a young woman who had watched Gracie before, and worked out an arrangement with her.  She agreed to watching Gracie every first Saturday of each month on a rolling three month basis.  Should things change, we’d get two more date nights and two months to figure something else out.

Three weeks ago we got our chance to finally go out and have dinner, Kristine and I.  We went to this Cuban restaurant on beachside that we’d been wanting to go to for a while.  Nice place with a romantic setting, including a guitarist playing Cuban music.  Had to put reservations in with the restaurant in order to assure seats.  The hostess seated us next to a party of three other couples.  Unfortunately, they were some of the most obnoxious people we’ve ever had the displeasure of dining next to.  They acted like the kind of people that get to go out on the town all the time.  One guy was a know-it-all, going on and on about all things related to computers, and one of the women with the party was saying stupid shit like, “The Spanish word for fish is pescado.”  Yeah, we didn’t stick around for dessert.

Sippy cup tethers… I’m tired of Gracie throwing her cups.  But the commercially available products that are out there in the world just don’t seem sufficient.  I did an online search for sippy cup tethers.  To my surprise, sure enough, you can buy almost anything on Amazon.  But the tethers are mostly made for toddlers in strollers or high chairs, not 13-year old autistic girls with a 90 mph knuckle ball.  And one I liked was made more for cups that are shaped like dumbbells (so the tether can’t slip off of the cup).  Then I found an article about how to make your own.   This past week Gracie threw her cup, once again, while we were eating dinner.  Without thinking, I reached up with my left arm and caught it.  I immediately regretted doing so, clutching my left shoulder, groaning in pain.  I’ve a partial tear in one of my left rotator tendons.  I’m getting old.  Or brittle, as one of Kristine’s nephews said to me.  Ha ha, I thought to myself.  Don’t worry, you’ll be in my shoes one day soon enough.  Anyway, I really should make that tether for Gracie’s cup, or at least stop trying to play outfielder with them.

Finally, the kicker for this post.  Back in mid-November we learned Gracie’s lawyer was finally going to move forward with our lawsuit against Brevard County Schools.  For those of you who might not know, last year one of the teacher aides in Gracie’s class abused her.  The person responsible is still employed with the county school system, despite my request to the principal to terminate this person’s employment or face legal action.  Once I learned the school wasn’t going to take what I considered to be appropriate action, and that the local district attorney wasn’t going to press charges, I felt that I had no other choice but to contact a lawyer.  I’ve never doubted for a moment that any lawyer who reviewed Gracie’s case would see the abuse perpetrated upon Gracie warranted a lawsuit.

About graciesautism

Father of Gracie, who is autistic, and her sister Gabrielle (who is a typical). Sharing our stories in Gracieland.
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