I’ve mentioned her many times here but I seldom blog about my oldest daughter Elizabeth, even though as a rule our days revolve more around her than any other aspect of our lives. She is autistic, and not the kind you see on TV where the autistic person is of a high functioning kind like Asberger’s syndrome, and manages to be an “America’s Next Top Model” candidate or write novels or otherwise basically function in society. Elizabeth is the rocking back and forth, hand flapping, repeat everything six times Rain Man sort of Autistic kid. I shouldn’t say “kid” anymore… she’ll be 18 in January. Of course in a way she’ll always be a kid, and she’ll likely always be with us.
There are lot’s of challenges with having an autistic child. Most are daily things like dealing with problematic sleep patterns, destructive OCD issues, extreme swings in mood or temper, having little or no response to you or anyone else or just trying to keep your cool when it all gets to be too much. Those things seem tough at the time but it’s the bigger issues that can really get to you… like is my child happy? Am I doing the right things to give her the best life she can have? How can I know what she is really feeling? Autistic kids have trouble internalizing and externalizing emotions. Elizabeth doesn’t often respond to anything outside her ordinary routine. We seldom find anything we can do for her that she will genuinely respond to… something she will peek out of her shell for. When we do, it is as magical for The Lovely Anna and I as it is for Elizabeth.
Routine and repetition are big with autistic people, and Elizabeth’s big thing is videos. She grew up watching and singing along with Barney, Sesame Street, Blue’s Clues, Kidsongs, Disney Sing Along Songs, etc. Music and video was something she routinely responded to. Unfortunately she gets easily overstimulated by them and has a frequent habit of breaking the videos and DVDs she loves. Anna and I have become expert VHS repair techs, able to disassemble, remove, splice and reassemble VHS tapes as well as replace parts or entire damaged cases in a matter of minutes. We also have a high tech DVD reproduction facility in our living room (i.e. Anna’s computer) with ripped copies of all Elizabeth’s DVDs on two giant hard drives with which we can make a copy of any of her DVDs right from the hard drive to a fresh disk in about 10-20 minutes. She averages about 10 copies a day.
A few years ago when we first got TiVo Elizabeth started watching some afternoon TV and sitcom reruns. Most she didn’t respond to but her favorites are Roseanne, Friends and Full House… mostly Roseanne. We have all those on DVD now. The channel she watches the most is the Food Network, and her favorite show on that channel is anything with cooking show star Rachel Ray. We’ve got whole TiVo units filled up with Rachel Ray and the rest.
This may not sound like a big deal, but it was to us when Elizabeth started asking not for just cheese on her spaghetti but “Parmigiano-Reggiano”, somethings Rachel talks about all the time. Next to Roseanne Barr, Rachel Ray is the biggest non-dinosaur TV star in our house.
On Monday of this week Rachel Ray was going to be at the Mall of America just 10 minutes from our house doing a book signing of her latest cooking book. When I told Anna about it we were excited and tried to figure out how to get Elizabeth there to meet her. Knowing what a zoo that would be and how hard crowds, noise and people are on Elizabeth, it did not seem likely that it would work out. We decided to try. We were hoping Elizabeth would get a chance to meet someone she’d been “spending so much time with” via the TV and maybe it would be one of those rare “out of the shell” moments.
The day rolled around and by sheer luck Anna and I happened to be at the Mall to run an errand when we found out they were giving out wristbands at noon just for the option of being able to get in line at 7:00 pm when Rachel made her appearance… no wristband, no place in line. We waited and got the wristbands. I tore mine off with my teeth and told Anna to tell the security people that Elizabeth tore it off of herself, so she’d get my place in line. Underhanded? Maybe… but you do what you need to sometimes.
Anna and Elizabeth arrived an hour or so early to find about 200 people in line in front of them. I was at our daughter Victoria‘s choir concert and would be coming in right at 7:00. Anna was armed with a full compliment of anti-autistic-meltdown gear… folding chairs, blanket to hide under, magazines to scribble in, other kids to go on food runs if needed, etc. Elizabeth zoned out under the blanket for a while and did her best, but as the time got closer she started losing it. The noise and people get to her and she becomes overstimulated, which results in her becoming very upset… sobbing with lots of rocking, screeching and other unstoppable behaviors. Anna was trying her best to calm her down, but there comes a point when that becomes impossible. I came at that time and it was getting obvious Elizabeth would not make it. She was reaching the tipping point. There was no way she’d last another 15 minutes let along the hours it would take to get to the front of the line.
Then came our little Christmas gift. One of the event coordinators saw that Elizabeth was a special needs person, and that she and Anna were struggling in line. She approached and ushered them both to the front of the stage, where a few other special needs folks were waiting. Apparently it’s Rachel’s policy to spend some time first with those with special physical and mental challenges before commencing with the rest of the book signing. Elizabeth went from 200th in line to 4th. She and Anna were right up front. I had a great view from the second floor overlook. After a few more minutes, Rachel Ray arrived.
Anna and Elizabeth and about 1/2 of the crowd visible
A big smile on two of my girl’s faces!
She didn’t sit down behind her table, she walked down to the front and spent one on one time with the people in wheelchairs, with guide dogs and other difficulties. She signed everything they had, made sure they got pictures and took as much time as they needed. When she got to Elizabeth, Anna introduced her. Elizabeth had become very quiet. She looked Rachel in the face and smiled at her. Rachel called her “beautiful” and squeezed her hand. Anna told her about how much Elizabeth loves her and the whole time Elizabeth was quiet and calm, and looked right at Rachel with a big smile on her face. Then Rachel insisted we get a good picture of she and Elizabeth, checking the first one and taking a second one to be certain we were happy… that picture is at the top of this post. Anna picked up all her stuff and took Elizabeth by the hand and left tearfully thanking everyone.
I met them downstairs and both of us were moved deeply by Elizabeth’s reaction to meeting one of her TV playmates. You’d need to be a parent of an autistic kid to really understand the power of that moment… when your child makes a real connection to the outside world and you feel certain that, if even for that fleeting instant, she is experiencing something that is meaningful to her. Maybe it’s something that she’ll remember for the rest of her life.
Now we are back to making spaghetti with Parmigiano-Reggiano and perfectly legal copies of purchased DVDs, among other Elizabeth-related damage control. Elizabeth is insisting that the framed picture of she and Rachel Ray hang in her sister Victoria’s room. Why? If I knew the answer to that, I’d be the world’s foremost expert on autism. All I know is for once Elizabeth got a Christmas present that really made her happy…. and that is the best present I’ll get for Christmas this year, guaranteed.
756 My cover art for the next issue of MAD, exclusive sneak peek from @entertainmentweekly website
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