Sunday, December 16, 2007

A Picture is Worth A Thousand Words

Jake started Kindergarten this year, and one of the bonus "fun stuff" items for me was waiting for "picture day" so I could put the very first "school portrait" in his education scrapbook. The day of pictures Jake and I picked out the perfect outfit, combed his hair, polished his glasses, and off he went. I know it seems silly, but this picture was a really big deal for me, because it would be the foundation picture in his school scrap book - the first picture of him turning into a big boy, and the last will be his high school graduation.

About a week before Randy came home on leave, I got the pictures back. My mom actually saw them first and called me into the room. "Jake's pictures came back today," she said. Her lack of enthusiasm was my first clue.

I pulled pictures out of the envelope and stared at them for a few seconds. "Uh oh," I said."

"What do you think happened there?" my mom asked.

"Ummm...I don't know, but HEY! We can do a retake!" I replied.

I sent the pictures back with the "unaceptable" and "take retake" boxes checked, and figured that all would be fine. Except it wasn't fine - because Jake was home with pneumonia on the day of the retakes, and we weren't able to get them re-shot.

I really wanted to put photos in with Christmas cards, so I knew I was going to have to do something. Since money was tight, I decided to take him to one of the discount stores that has an in-house photo studio. When I went sign him up for pictures, I told the lady taking apointments that we would need extra time, and that it was very important that not have to wait long upon arrival, so could we please get an appointment earlier in the day. She ended up scheduling us as the first appointment after lunch, which should have meant no wait, so I said OK.

We spend a lot of time at this particular store shopping, and so it's a place that Jake is both familiar and comfortable with, but even so, he only has about 1o minutes of "wait time" in him before he starts getting very restless, which leads to agitation.

When we arrived for our appointment, we were the only people in the waiting area, but both of the studios had people in them. Fifteen minutes go by and we're still waiting to just GET IN A STUDIO, and Jake's still hanging in there. He was really excited about having his picture taken, and we spent the time talking about how great it was going to be to get to go in the studio and see the big camera.

After we had been waiting for about 20 minutes, I went up to the counter and said the gal who was working, “Look, when I signed up I told them that Jake has special needs and that we needed to get in within 10 minutes and they assured me that we would.”

She snapped back at me, "Just a minute!"

About this time 2 moms and their two boys, probably 11 and 12 years old, come and crowd in the very small waiting area, followed by a man and his son, who was probably about 8. They stood right in front of the only opening, in effect trapping Jake in a very small, confined space that now has a lot of noise and activity. At this point Jake rapidly starting losing what grip on reality he had. He stood up and started batting at imaginary things in the air as the moms stared, the kids stared, the dad stared.

The dad with the little boy did not come across as a nice person. When his son went to sit down, he grabbed him by the arm HARD and said "I told you NOT TO MOVE,” which of course Jake responded to by mirroring him, "I TOLD YOU NO MOVE!" Jake shouted at the guy from the across the room, giving him is best dirty look. The man shot a dirty look back, and at that point I was about ready to come out of my chair.

The two boys that were siting next to us start talking to each other and Jake walked over and said, “Hi Boys!” He said it with a smile and was very friendly, and the boys looked at him like he had worms crawling out his ears. “My name is Jake! I'm Jake!” He said, again with enthusiasm, and again they just stared at him. In Jake's world, that must mean they didn't hear him, so he stepped closer. The one boy actually leans back in his chair like "get away from me" and the other boy goes' YOU ARE Weird! The moms did nothing, just stood there and stared.

Jake looked at me like he knew something bad just happened, but he wasn't sure what. At that moment, when my heart was about to break, one of the studios emptied out, so I took Jake in there to get him away from the crowd.

We waited in there for another ten minutes…so he has now waited for over half an hour, which is really an outstanding amount of time for him to basically just stand around and wait. Finally the "photographer" came in, and I explained to her that Jake has Autism, which means it will take a little longer to do his pictures, and that I had arranged for extra time when I signed up. She assured me that was fine and that she had a friend who has an Autistic child, so she knew all about autism.

I wish I had a quarter for every time someone said to me, "Oh, my niece/neighbor/friend/boss's sister/third cousin on my step mom's side has a child with Autism, so I understand!" At the same time I was taking my quarter, I would turn around and bet it double or nothing that the person claiming to "understand" is actually completely clueless. I would then take my one million dollars and open up the most amazing therapy center you could possibly imagine. But I digress.

Jake had to climb up on a table covered with a soft rug and balance at a weird angle for the "photographer" to get the shot she wanted. I explained to her that he has difficulty with balance, and that the longer you try to get him to hold still in one spot, the less likely it is that it's going to happen. (I'm quite sure that's why we got the "what is THAT" pictures from school). Finally she gets him right where she wants him and she says "SMILE" and Jake gives his very best giant, fake, over-the-top Cheshire cat grin.

I told her that wasn't going to do, and she started barking orders at him, "Turn RIGHT!" "Turn you head RIGHT!" "He doesn't understand that, " I said. And before the words were completely out of my mouth, she had darted across the room and grabbed his head to try and turn it the way she wanted. It never occurred to me say, "by the way, many autistic people do not like/want to be touched by people they love, much less strangers, so what ever you do, don't touch my son." Because, yanno, she told me SHE KNEW ALL ABOUT AUTISM.

Of course the unwanted touching and the barking of orders confused and annoyed Jake, so he immediately started to become agitated. Once he is agitated, you can pretty much forget getting him to sit still much less smile and take a pretty picture, but she did manage to snap three more fake smile shots.

At this point she tells me that she'd like to try a different style of picture that would be easier for him. She pulls down a black background, we get him to turn sideways, and she tells him to look up at the sky, to where there is a little teddy bear hanging from the ceiling. Jake looks at the bear and starts to smile, and SHWAMP!, the flash goes off on the camera, right in his eyes. Jake threw his hands up to his face like we do when the sun is in our eyes, and he slowly peaked out from behind his hands, all the time blinking wildly and now physically shaking. He dropped his hands for just a second and SHWAMP! she took another picture. "ENOUGH!" I shouted. He can't take THAT! (In my head, this was followed by, "what are you, fucking CRAZY??"

Jake started crying and he was shaking and I went and picked him up. "No more light," he whimpered in my neck. "No more." "No more," I told him, "it's all over now. We're all done."

"Well I guess that should do it!" the girl said. I looked at her like SHE had worms crawling out her ears. "Follow me and we'll look at his proofs!" The three that she took with the Christmas background were part of the $9.99 portrait special that I had signed up for. I wanted these for my Christmas cards, to send to all of the friends and family who haven't had a picture of Jake since he was born. There were only three choices, and he looked like a goof in every one. "I don't like any of these," I said, "but I guess the first one will do." So she says to me, "well usually I take 8 or 9 on that background, but since he was such trouble I just did the three.

You will be proud to know that I help my composure, and lucky for everyone in the studio that day, the first of the traumatic flash pictures was actually quite lovely. Of course those were NOT on special, so I had to pay full package price, which was $50.00.

Next time I know that I need to immediately lay ground rules for the picture takers. Through out this story you will notice that I refer to the gal who took the pictures as the "photographer." That is because while that is the title the studio gives her, she is NOT a professional photographer. My photographer friend, Cyndie Planck, would have gotten beautiful, joyous pictures of Jake without any trauma to him at all. I wish I could afford to use her all of the time, but I have to make choices while I'm dedicating our resources to getting Jake's Place up and running.

I also know that when people say, "I know all about Autism" I need to act like I didn't hear a word they said. I need to be proactive and educate every single place I go with Jake, because he can't advocate for himself and most people don't know nearly as much as they think they do.

If you have a story about getting your child's picture taken, please share it with me, I really care about what you're going through, too.

Calling all Moms!

If you are the mother of a child with Autism, I want to hear from you!

I'm looking for your day-t0-day stories on how you and your family are handling your daily struggles and triumphs with Autism for my upcoming book with co-author Jennifer Walker.

Jenn and I are putting together a series of questions that will be sent to our email list of selected moms, who will then answer the questions and send them back to us for consideration for inclusion in the book. Writing skills are not necessary, just the ability to answer specific questions in a fairly timely manner. A sample question would be: "What were the first 48 hours after your child was diagnosed with Autism like for you?"

If you are interested in taking part in our Q & A email sessions, please email me and I will send you detailed information.