It's Letter Day

It's Letter Day in St. Louis.  Today is the day that incoming Freshman get a letter letting them know which private high school they will go to next year.  Nate should be in 8th grade.  He should be getting his letter today......not that Tim would agree to private school....but all the same.  It's another childhood ritual that my child is not able to participate in.

The kids at school were very excited about it today.  They couldn't wait to get home and check the mail.  I know that Tim would never agree to send the boys to a private school, but it would be nice to have the option.  For the first time I realized that Nate is their age.  It's so easy to think he's younger, since, developmentally he is.

Here are more rites of passage that autism has robbed me of:

first boy/girl party
calling a girl for the first time
driving Nate and a date to the movies and either sitting 5 rows behind them or waiting for them in the lobby
teaching Nate to always open the door for girls
watching Nate play football while Tim is his coach
studying and practicing for his driving test
teaching him how to drive a stick shift
looking at collages
studying for finals
helping him with his homework

I knew it would be hard for me when Nate got to be the same age or older than the students I am teaching.  Before, I didn't really have anything to measure the amount of divide between Nate and other kids his age. Now that I do, it kinda sucks.

Maybe I should file a civil suit against autism.  Can I put a price tag on what autism has taken from us?  Is it possible to define your dreams in dollars and cents?  Would any amount of money fix my broken heart?

I think I will always be mourning the loss of the child I thought I was going to have.

A non-preferred outing

The insurance company is stipulating that Noah have a non-preferred family outing once a week. So, today I took Nate and Noah to Kohl's, Macy's, and then lunch. Of course, I also took Brittany and Travis.

We practiced Noah's proximity to me in the stores. He did pretty well. He can handle walking with me with or without hand holding. It's the waiting in line that is difficult. We had to wait at both Kohl's and Macy's. He only slipped away from us once and didn't do any dropping to the floor. He actually went into a dressing room and tried on a pair of pants without any problems.....a first.

We worked on Nate's ability to keep up while walking in the mall. He is soooo slow. He helped by carrying my bag. He had a small meltdown in Macy's. I took Noah into the dressing room and Nate stayed outside with Travis and Brittany. He was not happy with me being out of s sight. Luckily, the store wasn't crowded. He kept yelling, "There's Mommy!". I had to open the door of the dressing room so he could see me to calm him down. That is something we will try again.

We then had lunch at a non-preferred restaurant. When we were walking in the mall, Noah kept saying "I want pizza, I want pizza!". So, we did not have pizza. We went to Qdoba. Noah ate tacos and part of a cheese quesadilla. Nate ordered and paid for his lunch himself. The guy working was very patient while Nate took out his wallet and counted his money.

Since Noah was so good, he deserved a reward. He and Travis bought gummy bears at the candy store. Travis told him, "Gummies in the van.". Noah was on a mission. He walked throu the mall, into Macy's, down the escalator, and to the door. He really wanted his gummy bears. He didn't drop to the floor when we only rode the escalator once. He put his jacket on and zipped it himself. It was quite something to see.

The insurance company is getting tricky. Suddenly, the boys' treatment plans are being scrutinized by someone new. They are now claiming that school hours plus outside therapy hours should not exceed 40 per week. Hmmmmm......this is all new. They want the boys hours to decrease since they have made progress. Don't they realize that they are making progress because the staff is here so much? Someone from UBH needs to live in my house for a week.

What a Difference a Year Makes

The Autism Bill went into affect on January 1, 2011.  The therapists started on January 2.  The progress has been amazing.  You wouldn't believe the difference in the boys.  I don't have the official summary from the new treatment plans, so I will give you an overview of the skills acquired.

Nate:

• He showers in the morning, almost independently.  He has a list of steps that stick to the shower wall and a staff member is standing at the bathroom door to keep him going.
• He dresses independently (except shoe tying).  He just has trouble with putting the belt through the belt loop at the back of his jeans.  He can do this in less than 8 minutes.  When staff started, it took over 30 minutes.
• He independently washes his face and brushes his teeth.
• He independently makes his bed.
• He can follow 8 step written directions.
• He can write out a short grocery list and pay with cash up to $25.
• He can answer "What can you do with?" about 17 items.
• He can measure items to the nearest 1/4 of an inch.
• He can unload the dishwasher and run the vacuum.

Noah:

• He is almost potty trained!  He hasn't spread poop in at least 6 months.
• He has independently asked to use the restroom.
• He can tell you his name, his parent's names, his phone number, and address.
• He can follow 39 rote commands (clap, pat tummy, stand up, etc.).
• He can count up to 27 items.
• He can answer 27 "What" questions?
• He has mastered 7 different 2-step commands.
• He has 6 communication reciprocation phrases.
• He can show understanding of "on, under, and inside".
• His tantrums have significantly decreased.

We are so lucky to have our wonderful team!  They are dedicated to see the boys grow and succeed.  I can't wait to see what the new year brings.  I have so much hope.

Giving Thanks

This year, I am so thankful for the Autism Bill.  Since we began services in January, all of our lives have improved.  The boys are making so much progress, and Tim and I aren't as stressed as we once were.

I am giving thanks for the wonderful team of people that comes to the house and devotes so much time and attention to the boys.  Every team member truly cares about them and is always happy to be here.

Beck- works M-F 6:30 am to 8:30 am
Travis- works Sun 9 am to 1 pm, M 4 pm to 7:45 pm, and F 3 pm to 7:45 pm
Anne- works M 4 pm to 7:45 pm and W 4 pm to 7:45 pm
Cassandra- works T and R 6:30 am to 8:30 am
Frank- works MWF 6:30 am to 8:30 am
Laura- works T and R 4 pm to 7:45 pm
Lauren- works W 4 pm to 7:45 pm and F 3 pm to 7:45 pm
Danielle- works Sun 9 am to 12:30 pm and R 4 pm to 7:45 pm
Joanna- fills in when needed
Kyler- writes the programming and behavior plans
Lisa- does all the scheduling
Ruth- SLP who sees the boys T, W, and R after school
Mikaela- OT who sees the boys once a week

Action For Autism- an organization that is helping to pay the co pays for all this therapy

I can only hope that these people realize what a profound effect they are having on our family.  I am eternally grateful to them.

Halloween is hard....

Halloween is hard. It's hard for both the boys and me.

It's hard for Nate and Noah because they don't understand. It just doesn't make any sense. Nate doesn't like to put on a costume. He used to scream like crazy when we tried to put one on him. Now, he just dresses as a Cardinal's fan.....very appropriate this year. Also, he doesn't understand that you don't go in the houses. He has been pretty grouchy the last 45 minutes. Noah put on his costume this year without screaming. He made it to 2 houses without laying down and screaming in the middle of the street.

Seeing all the kids in the neighborhood in their costumes makes me sad. Some of them are the same age as my kids. They should be their friends. My kids should be out with them tonight having fun. My kids should be laughing and telling their silly joke to get some candy. They should have been planning their costume for weeks. My kids should not have to be different......

I will get through tonight. I will be happy for all the parents that are out with their kids. I will be happy that they aren't dealing with the challenges that we are. I will be happy that each child that comes to my house tonight does not have autism. I will be happy that they did not have to sit in the doctor's office and hear those words 3 times.

I love my boys. Don't get me wrong....I love my boys. Halloween is hard.

no more services....

I received an email yesterday telling me that due to a "miscommunication" between the provider and the insurance company, I was out of hours for the boys for October.  Yesterday was October 20th.  There are 31 days in October.....  I informed them that I had "unlimited" money.  Yes, I did.  However, when the plan is sent in by the provider they estimate how many hours per month it would take to accomplish the goals.  when the plan started in January, we requested 97 hours per boy a month.  In June we requested more hours for summer.  When school started this fall, we added the evening shift...thinking that we still had all those hours.  The insurance company assumed that the extra hours were just for "summer" and put us back to 97.  Noah alone was slated for about 150 hours in October.

Sooo.....tonight was the first night of no help.  The speech path was here for all 3 boys (that was a huge help).  Vicki was unavailable and Tim had parent/teacher conferences.  I lost the fight of keeping Noah's clothes on him.  I gave up after the 8th time.

Some members of the team are coming in to help in the morning so I can get to work on time.  The bus doesn't pickup until 8:30 and my work day starts at 8:15.  I have to pay $10 an hour for each person to be here.  My co-pays are $20 per kid per day.  This means, that for Nate, the $20 per day covers both the am and pm shift.  Now, I am paying $20 per boy for only the am shift.

Also, their programs aren't being run.  This means 11 days without direct instruction.  It's like your child missing 11 days of school.  I don't even want to think of how much regression we will have.  I certainly hope this "miscommunication" does not happen to another family.  No one should have this stress put back upon them in this manner.

It's always 2 steps forward, but 1 step back.

Would you rather?

At lunch the other day, a coworker posed a question: would you rather be able to raise any one person from the dead or have 3 questions answered? No offense to anyone who has passed on, but I need some questions answered.

1. Why do all three of my kids have autism? I mean really, one wasn't enough? It had to be all three?

2. What caused the autism? Even though they tell me otherwise, I still wonder if something happened during pregnancy to cause this. Did I do something wrong to cause it? Are either Tim or I carrying a gene that passes it on? Could Nick pass it on to his kids?

3. What is going on through Nate and Noah's minds? Tim and I really want to know. Do they know we love them? Do they like or hate the clothes we dress them in? Did Nate have fun at camp? These are some of the things that I don't know about them.

I need another question: Will they find a cure for autism? Don't get me wrong, I love my kids, but no other parent should have to sit in the Neurologist's office and hear those words.