Monday, October 31, 2011

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.

Thursday, October 20, 2011

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.

Tuesday, October 11, 2011

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.