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.

Nate went to camp

Nate went to 'camp.  Let me rephrase that....I dropped off my non-verbal 13 year old Friday night at 7 with people that he didn't know.  We didn't pick him up until today at 4.  It was not easy.  I felt like such the bad guy.  My mom and Tim didn't want him to go.  They really made me feel guilty.  Like I would purposefully send my child to a place where he could be hurt.

Nate's ABA aide, Nick, and I dropped off Nate Friday night.  When we got there, I was surprised to see my sister's ex-sister-in-law.  It made me feel better that someone I knew was there.  Anne and Nick went with Nate and his "buddy" to the cabin and I turned in his meds to the nurse.  By the time I got to the cabin, his bed was made and he was ready to go.  I didn't stick around.  I figured it was easier to leave quickly than prolong the goodbye.  He was ready for me to go.  All I got was, "bye Mommy."  He didn't blink an eye.  I don't know that he knew what was going on.

Tim wanted to go out Saturday to check on him, but I wouldn't let him.  I didn't want to take the chance of upsetting Nate when Tim went to leave.  It was not relaxing having him gone.  Even though there was one less body in the house, he was always on my mind.  Were they serving food he liked?  Was he using his words to get what he wanted?  Did he miss us?  Did he think I just abandoned him with strangers???????

He was very happy when we picked him up.  He was happy to see us, but said he had fun.  I asked him if he wanted to go back and he said "yes".  His buddy said he had a good weekend, but not much else.  I was hoping for a more detailed account of his weekend, but didn't get one.  Maybe I am just spoiled by the specific details I get from the ABA people at the house.

It was a very big step...for Nate and Tim and me.  He needs to have opportunities for independence.  He also needs to be able to go places without us.  If we don't give him these opportunities now, what will happen in 10 years?  I want Nate to live in an assisted living facility with Noah.  He can't be totally dependent on Tim and I forever.  Tim and I will not live forever and need to remember that while it's easier to keep him with us at all times now, that's not what's best for his future.

Vacation

We took a family vacation this from Sunday to Wednesday.  Or course, we took Vicki with us.  This way, we had one adult for each child.  We returned to Holiday World, an amusement and water park in Santa Claus, Indiana.  This was our sixth trip in as many years.

We tried a different lodging option.  We stayed at Santa's Cottages.  It was perfect.  The cottage was bigger than the ones at the campground and better than two hotel rooms.  We had two bedrooms, two full baths, and a large great room.  There was plenty of room for the boys to spread out.  Each boy also had his own bed, which helped them sleep better.  It was nice to have all that space to come home in the middle of the day to give the boys a break from the crowds and the noise.

This is the first vacation that Noah did not throw one fit.  He didn't drop to the ground.  He sat and listened.  We weren't stared at.  We weren't asked to leave.  It was wonderful.  We finally had a successful family vacation.  It wasn't relaxing, but it wasn't stressful. 

The staff at Holiday World is great with the kids.  We get a paper from the Guest Services office that allows us to enter rides at the exit.  They will either put us on the next ride or give us a time to return.  That's such a lifesaver.  My kids could not wait in a hot, crowded line for more than 3 minutes. 

Nate and Noah each rode new rides this time.  That's a huge accomplishment.  We were able to walk past the swings and the carousel without Noah losing it.  Nick rode every roller coaster at least once.  The boys love the log ride and thunder river.  Noah loves to get wet.

We also had accomplishments in the water park.  They all 3 rode a water slide that had a tunnel.  For years, they wouldn't do it.  Noah rode the water roller coaster with Tim, Vicki, and Nick.  We were worried that he wouldn't hold on since they don't buckle you in.  Well, he did.  Nate managed to walk by the kiddie play area without crying because we won't let him go in. 

Finally.....a vacation just like any other family.  I am sooo happy!

I'm still here,

I'm still here. I had rotator cuff surgery on my right shoulder May 9th. I am just now being able to type with both hands. If it wasn't for the Autism Bill, I wouldn't be able to have the surgery. I was able to increase the ABA help to include after school as well as before school. So, this way, Noah had an adult with him while he was awake. We had to be so careful with him and my arm. He still sometimes grabs my right hand to show me what he wants and it hurts!

I am still sleeping in the recliner and Noah is finally used to it. He always climbs into bed with me to snuggle when he first wakes up. For the first couple of weeks he just came into my room and looked lost. I finally had one of the girls climb into my bed with Noah to give him the affection he needed so badly.

Our Occupational Therapist has left. She quit the agency she was with and decided to be an independent provider for First Steps. We will greatly miss her. She was outstanding with the boys and taught the ABA people many helpful tips. We still don't have a new OT. I hope it doesn't take long to fill the position.

I had an interview a few weeks ago with Action For Autism. They are a non-profit agency that provides financial aid to families with kids with autism. I asked for help with the co-pays for ABA ($480/week) and to send Nate to camp ($325). I am hoping to hear from them soon. I told them that even though the co-pays could break us, I can't stop the ABA. The gains the boys have made are too great. Thank God I don't pay co-pays for Speech and OT.


I am still waiting to hear from the Department of Mental Health for funding for Noah. Unfortunately, Tim and I just make "too much money". I still have to apply for Medicaid for Noah, just to be turned down. We've been put on the "waiting list".

I don't understand how parents with 3 kids with autism "make too much money". Does anyone have any idea what we pay out in doctors, medications, and therapies a year? I don't want to know. I think that if I figured it all out, it would make me sick. I know that I put the maximum amount allowed in my Flex Account and it never lasts a calendar year. Poor Tim, he'll never get to quit that second job........

We were on a break....

Dear Autism,

We were just on a break. I didn't totally break up with you. I mean, how could I? Even though I hate you, you are what made my boys who they are today. And I love them no matter what.

So, back to the break. I just needed a few days....3 to be exact. I needed to not be the mother of kids with autism. I needed to just be Stacey. I needed to not worry about meds and therapy. I needed to not check to see if progress was being made. I needed to not have to ask someone to use their words or to stop twirling my hair. I needed to not see a naked 6 year old boy running around the house. So, I took a break.

I grabbed some girlfriends and went to New Orleans. I walked around the city and enjoyed myself. I did not give anyone their meds. I did not talk to any of the therapists. I did not put Noah's clothes on him for the umpteenth time. I ate great food and sampled fabulous cocktails. I lived my life, not Autism's.

So now the break is over and I'm back with a vengeance. I am ready for anything you bring. The break did not make me feel guilty. Instead, it made me stronger and a better opponent. So Autism, just remember, I will never leave or give up. I will fight you tooth and nail. I will fight you for my boys.....you will not win.

$40,000 is not a lot of money........

I received the billing statement for both boys for the month of January......they each billed $4,000. At this rate, the $40,000 will only last through October. We will definitely be tweaking the schedule. We can't be left to cover $4,000 for each boy for 2 months.

We have cut the Sunday shift back from 4 hours to 3 hours. I can't shorten the morning shift.....it's too valuable. I hope to gain some money back over the summer by not using the morning shift every day. Since Tim and I will be home, we can implement the picture schedule and routine before they get on the bus.

The benefits from the in-home therapy have been priceless. They are doing so well with getting ready in the morning. Nate is struggling because they have raised the bar. He now has to get dressed without anyone in the room to keep him on task. In order to get his reward, he must get dressed within 12 minutes. There have been many days that it's taken him 35 minutes. Oh.....to not be driven by a schedule. Nate also loads the dishwasher after breakfast. The dishes are now placed in rows between the rungs instead of just laying across the rack. Noah is making his bed and brushing his teeth.

The Sunday outings have been both fun and beneficial. They have gone bowling, jumping, and hiking. They also go out for lunch. They always take Noah to the restroom whenever they go into a different place. We are determined to break the tantrums that come with the public restrooms.

I am in the process of starting the paper work with the Department of Mental Health. I am hoping that some money will come our way. Unfortunately, the process is long and slow. I was also sent information about United Healthcare's $5,000 grant to pay for medical expenses. The application is very long and it states that "behavior therapy" is not covered. I will need to call and see if ABA is not covered. Unfortunately, the application in daunting.....it also must include documentation and a letter from a doctor stating the benefits of the therapy. I'm not even sure where to start....the pediatrician or psychiatrist?