still angry

A friend and I were talking today about Easter plans and church. I mentioned that I wouldn't be going because I was still so angry about the boys. She corrected me. I was angry about Noah. Not all the boys, just Noah. She was right.

When I was pregnant with Noah, I prayed and prayed that he wouldn't have autism. I was convinced that God wouldn't let it happen again. Twice was one thing, but a third? He couldn't be that cruel. I said these words very often to myself and others. I actually thought that my third child would be able to help Nick care for Nate when they were older. I thought that Nick would have a sibling to play with. I thought everything would be ok.

I still can't let go of my anger. It fuels me in my war. It's what helps my fight for all the help and services that my boys need. I just hope it won't consume me.

Getting Noah's diagnosis broke my heart......and, worse, it broke my faith.

Autism Could Bankrupt Us

Nate got into the Teens in Motion program for this summer.  That's great!  He will have so many experiences and chances for independence.  It's $900.  I know that is reasonable for an 8 week camp, however....autism is very expensive.

We always try to do what is best for the boys.....meds, therapies, and good doctors.  Unfortunately, everything comes at a price.

ABA-
$120 co-pays/week for Nate
$120 co-pays/week for Noah
$60 co-pays/week for Nick

OT-
$20 co-pay/week for Noah
$20 co-pay/biweekly for Nate

Psychiatrist-
$30 co-pay for each boy every 3 months (or sooner if needed)

In-home help-
$11/hour, it varies from 40 to 100 hours a month

Speech-
It's free through the Home Health Care section of our insurance.  Please tell everyone you know to explore this avenue.

Tim and I both teach full-time.  We make too much money to receive help from the government and don't have enough to cover all the expenses ourselves.  When I applied for SSI benefits for the boys, the woman basically laughed at me.  We are on many wait lists for financial help, but are not "needy" enough.  Organizations like Action for Autism are helping.  They pay for one ABA co-pay per boy, per week.  They also covered the $350 for Nate to attend Spring Break Camp.  St. Louis ARC reimburses me $6/hour for the in-home help for up to 250 hours per boy, per year.  I go through those hours like water.

I know there are some expenses we won't have.  I won't be paying car insurance for Nate and Noah.  I also won't be sending them to college.  However, if I had compiled a list of autism expenses since their diagnoses, I think it would rival car insurance and college tuition.

So, gone are some dreams.....bigger house, no.  Condo at the Lake, no.  Tour of Europe, no.  Hello, bigger dreams.....Nate and Noah living in an assisted living facility, yes.

What's best for kids......

Nate and Noah should not be in a "typical" school.  I know this.  Tim knows this.  Anyone who has met them knows this.

Not all parents know this about their kids.  It's a shame.  Their kids are sitting in a class and not getting anything out of it.  They need an adult with them at all times to "survive" the day.  They are sitting through lessons about writing a 5-paragraph essay.  However, they struggle to write a paragraph and will never hold a job that requires a 5-paragraph essay.  Not all kids need to know the names of all the Presidents.  Sitting in classes and not learning anything is such a waste of their time.  Don't parents know that when you have a special needs child time is your enemy?

Putting kids in an alternate educational setting does not limit their potential.  It does just the opposite.  It opens so many doors for them.  My kids are learning skills that will help them survive the "real world."  They will never be able to write a 5-paragraph essay, but they may be able to hold a job that is commiserate to their ability.  Some things aren't important for everyone to know.

I don't know why parents are so opposed to putting their kids in an alternate educational setting.  I think that one of the worst things a parent of a special child can be is unrealistic.  I have always asked the boys' teachers and therapists to be very honest with us.  Putting our heads in the sand does not help our boys.  Telling a parent that their special child is doing well when they are barely staying in the room or understanding what is going on does not help.  What will these parents do when their child "graduates" from the "typical" high school and does not have any real world skills?

Unfortunately, there is a stigma on "special schools".  When my boys got into the "special school", my friends and I went out to celebrate.  I felt like I had gotten them into Harvard.  For my boys, it is their Harvard.

Nick's Valentines

Nick was sitting at the table tonight writing names on Valentines for his class party tomorrow.  He suddenly got up and ran down the hall.  I asked him where he was going and his reply was, "You'll see."  I followed him just in time to see him coming out of Nate's room.  I asked him if he made a Valentine for Nate.  His answer, "Yes, and I hid it under his pillow.  It's a surprise."

This is just another example of how much Nick worships his older brother.  It has never mattered to Nick that he has surpassed Nate in so many ways.  All he knows is that his older brother is the best.

I am sometimes amazed by his adoration for Nate.  I know he loves his brother, but this is more than that.  He truly accepts Nate for who he is....and who he isn't.  He has never complained when Nate has been the cause of a sudden change of plans or making us late for something.  He doesn't make fun of Nate when he is having a meltdown or exhibiting some strange behavior.  When we moved Nate out of the room with Nick, Nick was a little sad.  When I asked him why, he told me that he would miss all the conversations that he and Nate would have when they went to bed.  Now, you know as well as I do, that Nate never said a word.  However, Nick is convinced that Nate was a very active participant in these conversations.

I only hope that when Nick is a teenager, he still thinks that Nate is as awesome as he does now.  I hope that peer pressure or outside influences won't tarnish his love for his older brother.  Just think what a great place the world would be if everyone thought like Nick.......

Now if I could only get Nick to feel the same way about his little brother........

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.