Orlando Part 1

As usual, I packed the night before and the morning of our trip. That doesn’t really bother me. I work best under pressure, or at least tell myself that. I prefer packing summer clothes because they take up less room. I actually remembered all the things I usually forget: Swim suits, swim diapers, plenty of toys and books for the plane and snacks for the plane.




I tried a new accessory this trip. I have seen Todd’s schoolmates’ parents use a backpack with what essentially is a leash attached to it. I know, I know. Autistic kids have a tendency to just “take off” and it’s hard to chase after them or physically keep them in one place when you’re also trying to juggle luggage and keep an eye on your other child. I thought I’d try it for this trip. It actually was very helpful. I initially tried to ignore the ugly looks and judgmental stares. There was one pair of women, appeared to be a mother and daughter, who exchanged smug smiles and I heard one of them say, “He’s going to choke on that,” even though the harness only goes over his shoulders. I should have said something bitchy to them, but I was in too good a mood. It really helped at the airports and at Magic Kingdom. It didn’t hurt him and he didn’t seem to mind it. I actually saw several children in similar restraints at Magic Kingdom.



There’s an episode of “Modern Family” where the family is going to Disneyland and the fathers of the youngest child break out a harness. Someone asks, “Is that a leash?” One dad answers, “No, it’s a child safety tethering device.” The other dad answers, “It’s a leash. Please don’t judge us.”



Midway Airport is about a 20-minute ride down Cicero Avenue from our home. The planes fly in very close to Cicero and make my kids giggle. My brother checked us in online, so when we arrived at Midway Airport, we went straight to security.



Now, I understand the TSAs have an important job to do. I’m not naïve to the fact there are terrorists out there who want to kill us all. That said, I have my doubts about the effectiveness of the TSA system. All I ever see at the airport are families with young children being harassed and old people, many in wheelchairs, being molested because their fake body parts set off an alarm.



I was happy to see some new rules. There was a sign that if you were born before this date in 1937, you don’t have to take off your shoes. That pertained to my dad, who was born in 1934. Also, children under the age of 12 no longer have to take off their shoes. This is great, because it was a huge pain in the ass to take off my own shoes and those of my two children, plus try to get all our stuff in the plastic bins, take out the laptop and put that in its own bin, take out the standard 3 3-oz. liquids in the ziploc baggie, separate the iPad, cell phone, etc. Old habits die hard, though. My 7-year-old kept trying to take off his shoes anyway, since I’ve trained him to do that for past vacations.



But, as usual, they had to scold me for something. The TSA complained that my kids weren’t holding their individual boarding passes. I got snippy at this point. “I have two special needs kids, one on a leash, six bags and you expect the kids to hold their own boarding passes? And this is important, why?”

Another Mom Blogger's Reaction

Another mom blogger's reaction to Morning Joe - found this on Twitter.

http://adiaryofamom.wordpress.com/2012/07/23/dear-joe/

All I can say is WTH, no, WTF

http://www.mediaite.com/tv/autistic-journalist-demands-joe-scarborough-retract-comments-linking-autism-to-aurora-shooting/

Article on Autism & Musical Talent

http://www.coastmusictherapy.com/articles/diagnosisautistic.html

Shameless Plug-"Into the Woods" for Charity

For those in the Chicagoland area:

This weekend, I will be performing with my husband and many friends in Sondheim's "Into the Woods."  Part of the proceeds of this production will benefit the Veterans' Outreach program in Oak Lawn, IL
Opening Night Arts Group proudly presents:
"Into the Woods"
Director/Choreographer: Cassie Dawe
Musical Director: Peg Mooney
Assistant Director: Kathryn Sullivan


PERFORMANCES

Friday, July 20, 2012 - 8:00 PM

Saturday, July 21, 2012 - 8:00 PM

Sunday, July 22, 2012 - 3:00 PM

Auditorium Theatre
A.A. Stagg High School
8015 W. 111th Street
Palos Hills, IL 60465

TICKET INFORMATION

Tickets for all performances are $20

$1 Discount for ONAG Members, Seniors & Students and Military Personnel with ID.

*Purchase tickets online for $20. Then any ONAG Members, Seniors, Students with ID and Military Personnel with ID will be given a $1 discount at the ONAG box office, after presenting the proper identification.*

Purchase tickets through our website (www.onag.org), through our hotline number: (708) 232-ONAG (6624) or contact our ticket coordinator, Barb, at blenihan@onag.org

Cast: 
Kristina Caputo (Cinderella), Matt Murphy (Jack), Kim Brines (Jack’s Mother), Brian Brady (Baker),
Sara Carlson (Baker’s Wife), Eileen Casey (The Stepmother), Lizzie Calombaris (Florinda),
Emily Lyons (Lucinda), Stephanie Seweryn (Little Red Riding Hood), Sara Martin (Witch),
Bebe Bollito (Cinderella’s Mother), Tim Casey (Mysterious Man), Vasily “Bill” Deris (Wolf), Jan Hood (Granny), Mary Quinlivan (Rapunzel), Don Fitzgibbons (Rapunzel’s Prince), Nick Shine (Cinderella’s Prince), Drew Dicksen (Steward), Allison Sokolowski (Snow White) & Leandra Ward (Sleeping Beauty)

July 14, 2006

Reflecting on six years ago.  It was an easy pregnancy, despite gestational diabetes and taking care of my other baby, Sean.  Sean was only 8 months old when I got pregnant again.  The baby’s gender was undetermined at the ultrasound because the cord was bunched up between his legs.  He hasn’t been that modest since! The doctor predicted it was a girl.  As soon as I found out I was pregnant, Tim said that if it was a boy, he wanted him to be named Todd, after Tim’s brother who died as an infant.  Personally, I like the name because of the complex character of Todd Manning from One Life to Live (and now General Hospital).  My Dad didn’t like the name because of Bill Murray’s character Todd, who was the boyfriend of Gilda Radner’s Lisa Loopner.  I figured kids of Todd’s generation wouldn’t be familiar with those characters anyway.

When he was about a week old, I took him for a check-up.  The pediatrician was concerned that he had lost weight, was listless and a bit yellow.  He had me go over to Hope Children’s Hospital to get Todd’s bilirubin checked.  Good thing we did.  He was seriously jaundiced.  He was also severely dehydrated.  I had been trying to breast feed him, but apparently my breasts don’t produce enough milk.  I’m a D cup, who knew? Todd and I stayed in the hospital for a week.  He was laid in what looked like a tanning bed with tanning bed type goggles over his eyes that he kept yanking off.  He really hated the IV, too.  They had to anchor it to his little arm with a splint because he kept pulling the needle out.

Of course I was still hormonal and blamed myself and my incompetent breasts for making my baby sick.  All that was put into perspective very quickly.

The only room Hope Children’s had for us was in the cancer ward.  Over that week, I was both heartbroken and amazed at the strength of these kids’ spirits, as well as their parents.  I spent time with several parents in the vending machine area, which was also the only place you could use your cell phone.  In that room are wall art tiles in honor of Hope cancer kids who made it and in memory of kids who didn’t.

In that area of the hospital, the visiting hours are very lax.  Both my family and my in-laws stayed late into the evening with us.  Several times that week I heard a “code blue” and it was so awful knowing it was for a little kid.  One night the nurse was late bringing me some formula for Todd.  She apologized saying, “one of my cancer kids has a nose bleed and that’s never a good thing.” I so admire people who work in that area of medicine.  I couldn’t do it.  I’d be crying constantly. 

Todd got better and we went home.  I was very grateful my child was otherwise very healthy.  Now he has autism.  He’s not suffering physically.  I worry about his future, but I know he has a chance at one. To this day, every time I drive past Hope Children’s, I say a prayer for the wonderful staff, parents and all the kids that are patients there.

We're not the only ones

Our sitter last night commented on Todd’s obsession with banging doors, cabinets, etc. She was curious if our neighbors have ever asked us about the noise or made any complaints.  I filled her in.

She previously told me about an autistic boy she babysat for many years. This child’s parents could not handle caring for him, so he was in the custody of his grandmother. She stopped watching him when he had to be moved to a group home as a teenager. Physically he became too much for his aging grandmother to handle.

Anyway, after I told her about our neighbors, she told me about how the grandmother’s neighbors would call the police all the time. The boy was not only noisy with banging like Todd, he was also a screamer. I can understand initially a neighbor not understanding the situation and suspecting abuse and calling once, but after knowing the reason for the noise and screaming…to keep calling the police? What is with people?

My sitter said the grandmother’s response to police was the same I usually give, “What more can I do?” I want to meet this grandmother someday so I can give her a big hug.

Mary Miles Minter

Watched “Our America with Lisa Ling.” The episode is called “Sparkle Babies” and the subject is little pageant queens and their stage mothers. I anticipated the episode would make me sick for the same reason I don’t watch “Toddlers and Tiaras.” It was actually very interesting. The episode reminded me of the old Hollywood story of Mary Miles Minter and her mother and that how some things are always the same, such as desperate Hollywood dreams of parents being projected onto their children and the often sad consequences down the line.

Mary was born in Shreveport, Louisiana on April Fool’s Day in 1902 named Juliet Reilly. Her parents divorced when she was 5. Her mother, Charlotte, fancied herself to be a talented actress and moved with her two daughters, Juliet and Margaret, to New York and changed both their last names to her maiden name of Shelby. Charlotte worked on the New York stage in supporting roles. Juliet Shelby caught the eye of Broadway producer Charlie Frohman and began a stage career at the age of 6. Charlotte realized her daughters had the talent in the family and both girls began auditioning and being cast in films. Little Juliet caught the attention of the Gerry Society, a child protection agency of the era. This was when Juliet Shelby became Mary Miles Minter. Charlotte actually borrowed the birth certificate of a deceased niece to make her daughter officially 17 years old, instead of her actual age of 9. She was initially hired by Paramount to replace Mary Pickford as their star ingenue, at Mary Pickford’s recommendation. Her body of film work was fairly sparse, but she received good reviews for that work.

She is most famous for her connection to Paramount director William Desmond Taylor. Her first film with him was “Anne of Green Gables” in 1919. She claimed she had a romantic relationship with him, even though he was 30 years older than she was. He allegedly ended their affair for the same reason. In 1922, William Desmond Taylor was found dead, shot in the back. Mary and her mother Charlotte were both suspects at the time. Other suspects included Taylor’s valet, who had a history of embezzlement, forgery and U.S. military desertion and disappeared after the murder; silent film star Mabel Normand, who was the last person to see Taylor alive; and Normand’s drug dealers, who were supposedly angered by Taylor’s attempt to help Normand with her cocaine addiction. This came on the heels of the Fatty Arbuckle scandal and Hollywood was already knee-deep in tabloid gossip and embellished media coverage. A neighbor claimed to have seen a man leaving Taylor’s bungalow the day his body was discovered who smiled at her. An actress named Margaret Gibson confessed to the murder many years later, and although she appeared in films with Mary Miles Minter subsequent to the murder, there is no indication she had any connection to Taylor at the time of his death.

Mary did four more films for Paramount, but when her contract was up in 1923, they did not renew. Although the studio chose not to renew her contract, she received many other offers for work. She declined them all, stating she was never happy as an actress. She sued her mother in 1927 alleging faulty accounting of the money made in her Hollywood years. They settled out of court and Mary went on to invest in California real estate, making enough to live comfortably.

She proclaimed her love for Taylor until her death in 1984. The murder of William Desmond Taylor remains unsolved to this day.

A Letter from an Elim Mom, to You | Elim Christian Services

This letter is in regard to the wonderful school my children attend.  My favorite part is where she speaks of the sense of peace you feel as soon as you enter the building - so true!

A Letter from an Elim Mom, to You | Elim Christian Services

Brown sugar, Goldfish & wayward trucks

Something new every day. I keep the brown sugar in a Tupperware container. Todd’s never been tempted by it before. This morning, there was brown sugar everywhere and of course, 15 minutes before the scheduled arrival of the school bus. I can’t get mad at him. He truly doesn’t understand.




The trigger for Sean this morning was Goldfish crackers. I saw that Sean still had some peanut butter-cheese crackers in his backpack, so I figured that would suffice for snack today. I put Goldfish in Todd’s backpack. Yes, I usually give them the exact same thing to avoid conflict, but there was just to time to spare today after the brown sugar incident. Sean wanted Goldfish, but I told him to just live with what he had in his backpack because the bus was waiting outside.



That set off the fit of all fits. He threw his shoes at me. I had to literally drag him onto the bus. The bus driver was as dumbfounded as I was – Sean usually gets on the bus no problem. He loves the bus. Todd is generally the one who has to be dragged kicking and biting onto the bus. Once on the bus, Sean got away from the aide, ran off the bus and directly into the path of a work truck that was pulling into our driveway. I screamed and the truck stopped. I don’t think they would have seen him otherwise.



Went back inside, sweaty and out of breath and in a hurry to catch the train downtown.



When I switched my hours to accommodate Tim and the kids’ schedules (I go in at 10 a.m. these days), one woman pulled me aside: “Admit it, you just want to sleep in.” All I could do was laugh!



Ahh, a typical morning on the spectrum! So, so happy to go to work!

Hi, Officers, haven't seen you in weeks!

My son was his usual self today.  Loud.  Slamming his bedroom door, kicking the walls, slamming the fridge, freezer and dishwasher doors. (See previous blog post where he broke my new oven by slamming the oven door.)  First of all, it’s extremely annoying for me.  But that’s not the half of it.  What’s worse is the feeling of dread, waiting for one of my neighbors to call the cops, like that ever accomplishes anything.  (Please see previous posts for the history of the neighbor-police drama.)

There was a knock on the door.  I tiptoed over to the peephole and saw a woman with her hands on her hips.  I was already on the verge of tears because of Todd’s behavior, so I couldn’t answer.  I wasn’t in the mood to get yelled at.  If she wasn’t there to yell and just wanted to patronizingly ask me to control my child, I probably would have snapped and verbally ripped her a new you-know-what, so I didn’t answer to door because I didn’t want that to happen.

There was a second knocking on the door.  I called my husband at work.  He suggested I call the police and tell them what was happening.  What could they do? Call the police to report someone knocked on my door?

The ironic part was that each time I finally got my son calmed down, the door knock would get him all worked up again.

Finally, there was a loud pounding on the door.  I knew who it was before I looked through the peephole.  Officers! Hi guys!  Wow, slow day, they sent three of you to deal with my criminal 5-year-old.  This time, they were very kind, compassionate and understanding.  Not confrontational, judgmental, accusing, as they have been in the past.  I told them I understand they have to respond to all calls.  However, I personally would only contact the police in regards to a crime and I felt my tax dollars were being wasted by their trip out to my home when they could be out actually doing their job by oh, apprehending actual criminals.  I told them all they were accomplishing was making me feel worse than I already did and they were sympathetic to that.  I told them I had given my son some melatonin and was waiting for that to kick in.

No crime was committed.  The noise ordinance in our village states that in order for it to be a nuisance violation, the noise has to be willful and wanton.  Legal Terminology 101:  For it to be willful, I would have to be encouraging or making my child be noisy.  Wanton implies it could be stopped, but I’m choosing not to stop it.  Neither is the case here and I confirmed that in my meeting last month with the Chief of Police for my village. (See previous blog post on that.) I understand noise is annoying to others, but I’m doing all I can, really!  Calling the cops is just selfish and malicious – it accomplishes absolutely nothing.  Have I made it clear it accomplishes absolutely nothing?

I assumed the people who called were the renters next door who call several times a week.  The police told me, believe it or not, this time it wasn’t them.  This only leaves our neighbors upstairs, who are usually nice and are moving July 18^th.  All this time they’ve never called and now they can’t suck it up for 17 more days?  They’ve even told me before that they would never call on our kids because we’ve never called about their noise.  They have a dog that yips all day.  They are young and blast their music a lot. One time, the wife was out of town.  At 2:30 a.m., we heard power tools going in their unit – woke up the other neighbors too – we were all out in the lobby and you could get a contact high from the pot smell wafting out of their condo and reggae music blasting that was louder than the power tools.  No one called the cops that time.  But my autistic 5-year-old?  That somehow calls for police action.

Devil’s advocate – maybe the wife was truly concerned when we didn’t answer her knocks and wanted to make sure we were ok.  That’s what the cops said, “we want to make sure everyone is ok.”

My husband was so upset over all this, he ended up going off on a customer at work and was sent home without pay. 

What are we going to do?  We’ve been for sale for over 2 years.  Can we sue for harassment?  I certainly feel like we’ve been subjected to mental cruelty and emotional distress. 

I have wonderful friends and the positive feedback was helpful when I was bitching about all this on Facebook.  I wondered if I really should share so much on Facebook, was I putting too much out there, but decided I have to.  If people don’t want to hear about it, don’t read my posts.  But I really feel I need to put it out there – let anyone know who cares to know what our family goes through.  We aren’t the only ones – I know families of my boys’ school friends who go through a lot as well.  I want people to know what our experience is like so they hopefully won’t pre-judge others they come across that are like us and hopefully cut them some slack.