Susan's Blog

Monday, October 20, 2008

Unleash Your Mother Tiger

Okay, my darlings. I am getting close to the finish line. I just wrote the last sentence in the book! I write out of order; I write what I want to write when I want to write it. I have to have faith that I will get to everything I need to, and so I have.

Now I have to write the chapter on Us and Them. Our experiences with our kids out in the world, and how we handle it. How do we strive for contentment and happiness, given the responses autism gets in the world? Have you had good experiences? Awful ones? I want to hear both kinds, whatever you got. Strategies for handling the nosy clueless wonder in the supermarket. Or the doesn’t-get-it parent. The neighbor who shuns you because maybe autism is contagious. Or the school administrator, or the insensitive (or wonderful) doctor.

Does your spouse/partner help you, back you up?

As always, give me your name, city, state, kid’s Dx and age. I will likely publish what you send me so make sure that is okay with you/those in your life!

Get it all out! It will feel so good!


My daughter has been doing a lot better and I told her that if she did good at ABA, I would get her a movie. We went to Wal-Mart, picked out movie, walked through the toy department without stopping or melting down on the way to the check out, and the waited nicely in a long line. I was on cloud 9! You would think my kid had just graduated from Havard! She did say “Let’s go!” a couple of times while we waited on the clerk to fold one of the9 shirts a guy further up the line purchased or while we waited for a lady to get her 30 assorted snack foods checked out, but all in all it was a GREAT experience. The next week, I thought I would see if it was a fluke and we repeated the whole thing. I purposely picked the longest line to test the theory that she had improved and this time, you would think she had won the Nobel Prize. I was one proud autism dad! What’s your book going to be called so I can watch for it.


PS – I added your site to The Autism Retort,

— added by Fielding J. Hurst on Monday, October 20, 2008 at 9:45 pm

Thanks, Fielding!
Can I use your experience? If so, email me and tell me where you’re from.

— added by Susan Senator on Monday, October 20, 2008 at 9:51 pm

More great questions! I have a lengthy e-mail draft of responses for you but can’t seem to access your e-mail address anywhere. Do you mind providing it to me? My e-mail is Thank you!

— added by Audra E on Tuesday, October 21, 2008 at 10:13 am

Fielding: What a great story, and I know EXACTLY how you feel. Wal-Mart is really the Holy Grail for our angels suffering with autism. It’s way too crowded, much too noisy with bright lights and packed with merchandise everywhere. I’ve had parents of nonautistic children tell me that their child just could not take Wal-Mart. Anyway, here’s my Wal-Mart story: I kept my son Matthew in the cart because he felt “enclosed” and could deal with the crowds until he got too big. After that, he would walk right next to me with his hand on the cart rail and he seemed to be okay. One day, about a week before Thanksgiving, we were in Wal-Mart and it was packed. We had been in the store about 15 minutes and Matthew said to me “Mom, I’m going to have a meltdown. I can feel it.” I replied “really?” and he stated “Really.” So, I promptly picked up my purse, took him by the hand, we immediately left the store (sorry to whomever had to put the stuff back on the shelf). I was so proud of him for telling me what he was feeling and that we avoided a situation which is upsetting for both of us. Since that day, he tells me when he is in an uncomfortable situation and we avoid them.

— added by Sharon L. on Tuesday, October 21, 2008 at 11:00 am

I’ll let you know how our flight went next week.

— added by Someone Said on Tuesday, October 21, 2008 at 12:39 pm

Last fall, we took the kids to a a “family fun” event at an apple orchard. A local newspaper photographer seized on us (likely because we were sitting ducks on a picnic blanket). He tried to get Jack to cooperate and I said something like “Umm… he has developmental issues” (which I prefer avoiding having to say.)

The photographer asked “Is he a little autistic?” When I replied that yes Jack was autistic, I expected the photographer to give up instantly.

Instead he grew more intent on getting Jack’s photo. And a big photo of guess who ended up on the front page in that week’s paper!

To me, that was a watershed event — to learn that sometimes even strangers will try very hard to reach out to our kids. — Cathy in CT

— added by Anonymous on Tuesday, October 21, 2008 at 5:25 pm

Cathy: Isn’t it amazing at the extremes in behavior you can get from other adults in regards to our children who have autism? I am always in awe at the kind heartedness and considerate behavior shown our children; and at the downright meanness, coldheartedness, rudeness and sometimes cruelty. The worst comes from a woman who goes to our church and treats Matthew as though he had a sexually transmitted disease. I used to take whatever steps necessary to avoid these individuals. Now I simply pray for them.

— added by Sharon L. on Wednesday, October 22, 2008 at 12:31 pm

My son hates having his hair cut. So he was getting it cut at the local kid’s haircut place and having a grand mal melt down and it was all I could do to hold him from running out of the store and into traffic. This clueless heifer of a mom with a clearly normal 10 year old says to me calmly, like she’s sitting with me having coffe, “So how do you know if your child has autism?”
While holding my four year old with all my strength pratically sitting on him, I give her a “WTF” look and said, “Google it.”

— added by Michaels Mom on Friday, October 24, 2008 at 9:36 pm

A few years ago when Lena was three (soon after she was diagnosed with PDD) we took our annual flight to Florida to visit my parents. As soon as we sat in our seats, Lena proceeded to scream and writhe uncontrollably on the plane until we were at cruising altitude and I could put in her favorite DVD (“Veggie Tales – a godsend to us in more ways than one) to calm her down. My husband and I were a wreck by then and felt like all passengers were glaring at us and thinking “get control of your child for goodness sake”. The flight crew, thank goodness, were wonderful and did their best to help (not that anything did help at that time). Fortunately My 5 year old daughter was happy to use the satellite TV station and was unaffected by the whole event. Of course for the rest of our vacation we were dreading the return flight and did our best to pre-plan how we’d manage the situation: I would keep Lena in the gate area until the last possible second, while Mike would board the plane with Charlotte and set up Lena’s seat with all her favorite toys/books and snacks. I also told the gate agent that Lena may be noisy and scream because she has autism, in case they wanted to move us to the back of the plan (or where they check the bags in the bottom of the plane!). We proceeded as planned, with Mike taking Charlotte on board and apologizing to the fellow pagssengers in advance, while I let Lena run around the gate area and board last. We did, she settled in with all her favorite things and didn’t make a peep! We were so exhausted by the planning and anticipation of a noisy flight home that we just stared at each other in wonder and thanked our lucky stars. Two years later we’re not ready to get back on that flight “horse” just yet…

— added by Lena's Mom on Friday, October 24, 2008 at 11:56 pm

Between Jarrett’s autism and Max’s growth hormone deficiency ( also called pititary dwarfism) life can be very interesting. Explaining to a friend of a friends daughter at o Fourth of July party that Jarrett wore earplugs because the sounds of the fireworks bother him was fun since she persisted with ” But my dad bought kid friendly ones that aren’t that loud.” and I could not get her to understand that lots of things that don’t bother us, do bother him. My favorite invention is what we call the sound survival kit, which is an ID pouch from a summer camp Jarrett attends. It has a clear pocket on one side that we put two buttons in. One says Hello! I have autism. Please have patience. The other says I am autistic. Noise bothers me. Be quiet please. ( The other side has zippered pockets that we keep earplugs in and now excedrin for the headaches he sometimes gets. We are proud of his achievements. He won a sweatshirt in a nick mag contest for his character Joey the pirate monkey and you would have thought he won a million dollars, we were all so excited. And yes, sometimes the mother tiger comes roaring out. Earlier this year, a recess monitor (allegedly) grabbed his arm, pulled him off the swing and screamed at him for swing on his stomach. Another monitor told her you can’t do that, he’s autistic and her response was so what he’s special or something? This is a small town. Everybody pretty much knows everybody. The second monitor came into the store where my mom and I both work and told my mom about it. When my ex husband and I tried to get answers from the school,stonewalled. We had to eventually go to the school and threaten to go to the police department to dicuss our options with the chief before anything happened. Since recess monitor #2 changed her story and oddly enough, monitor #1 was not there that day, the best we could do was insist that she be allowed nowhere near Jarrett and is not to talk to or touch him for any reason. Recess is so short now , he should be able to enjoy it without being assaulted for swinging the wrong way. Monitor #2 no longer comes in to the store. I don’t think she can look us in the face after telling us what happened then changing her story to protect the guilty. Monitor#1… she came in the other day and from the expression on her face, she knew exactly who I am and was very uncomfortable facing me to make her purchase.

— added by cameramom on Sunday, October 26, 2008 at 2:43 pm