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.

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?

Nate's appendix

It's scary when my kids are sick because they can't tell you that they don't feel well.

A few summers ago, Nate started acting strange. There were times that he was walking all stooped over and then he would straighten up. He seemed to be ok. He was eating, drinking, and playing just fine. After a few days of this he started to vomit and sleep a lot. On July 3rd, he was much worse so we went to the emergency room at Childern's Hospital.

We have always received the best care for the boys at Children's. We get a private room (no one wants to hear the screaming), they try to get us helped as quickly as possible, and they can handle the boys. Nate was running a fever and decided to do blood work.....not fun. It took many people to hold him down. His white blood cell count was very high, sign of infection, but where? His throat and ears were clear so they brought down a surgical intern. He put Nate through the drill to see if his appendix had ruptured. Nate could stand up and jump. This convinced the intern that his appendix was fine. The doctor then wanted to test his urine. Nate was VERY confused. We now wanted him to pee in a cup??????

The urine test came back positive. Nate had a urinary tract infection. I sent Tim down to the cafe for some drinks so I could talk to the doctor in private. How did my 10 year old boy get a urinary tract infection? Did I have something more pressing to worry about? Like who was touching my kid?????? Nate and Noah would be perfect targets for a pedophile since they can't talk to tell anyone what happened. I wanted to have this conversation with the doctor without Tim being there. I didn't think Tim could handle it. He would definitely kill someone. The doctor suggested I talk to the teacher at summer school and start an investigation.

They wanted to give Nate an IV, but he was so agitated that I convinced the doctor to just give him a shot of an antibiotic and let us go home. I promised to keep him well hydrated and just wanted Nate to sleep in his own bed. We got home around midnight and Nate fell right asleep.

Tim had a pole vault expo he had to attend in the morning. When Nate woke up, he was much worse. He was vomiting and had diarrhea. I called Vicki to watch Nick and Noah so I could take Nate back to the er. As I was trying to get Nate ready, he was laying in my bed. He had diarrhea in my bed and was just laying in it. He couldn't even get up out of the mess. I called the er to tell them we were coming back in. They put me in contact with the same doctor from the night before who told me that the second urine test came back negative. This was definitely not a urinary tract infection. I rushed Nate back in.

My mom met us at the er. By now, Nate was dehydrated and needed an IV. It took 6 of us to hold him down. At one point, my mother told the doctor to come up with a different plan, because this one wasn't working. I begged them to sedate Nate, but they wouldn't. The doctor wanted to do a CAT scan. I begged them to sedate him. They assured me it would be fine. They gave him some medicine up the nose to relax him. Luckily, Tim got there before the CAT scan. It took Tim and I holding Nate down 3 times through the machine before it worked. By the way, Tim and I were totally healthy. Nate's appendix had ruptured. It looked like it had ruptured two days earlier.

Now a surgical resident came to see me. Here's the plan: we will go in and insert a drain into his side to drain all the infection out of his belly. We will send you home and the drain needs to remain in for 10 days. The words "Have you ever heard of autism?" came out of my mouth. I told him there was no way in hell Nate would leave that drain in and if he didn't rip it out, one of his autistic brothers would. You need to come up with a new plan.

They email the films to the surgical fellow who was at a 4th of July BBQ. His plan, get him prepped for surgery, he would be in within 20 minutes. Then everything happened so fast. They finally sedated Nate....he was so inconsolable and miserable. He was in surgery in no time. The surgery took so long. Not only had it ruptured, but it had turned gangrenous. The surgeon stayed and scraped every bit of infection out of his belly so he wouldn't need the tube up his nose bringing it out. He understood that Nate couldn't tolerate that tube. The IV would be bad enough.

We spent 9 nights in the hospital with the IV antibiotics. They kept him pretty heavily sedated the first few days. His pediatrician came in the next morning to see Nate. He commented that he'd never seen Nate so peaceful....he was sleeping and is usually screaming at the doctor's office. The nurses were great with his care. Nate got used to the IV, but hated it when the doctor would come in to check his wound. Everyone listened to Tim and I when we had suggestions of how to handle Nate. The poor intern who sent us home the first night was at rounds every morning at 5:30 am.

When we left, the staff made a point to tell us that this had been a great learning experience for them. We are so thankful to have such a good children's hospital so close.

I feel hope

It's now been 2 weeks of in-home ABA. I am beginning to feel like the tide is turning. We have been given more weapons to fight the battle with autism.

Nate is much more capable than I thought....or actually, more capable than I have time to let him be. It's so much faster and easier for Tim or I to do tasks for him in the morning. Now, the ABA staff can wait and give him the time he needs to be successful. I got the vacuum out last night to run and Nate actually took it from me to run himself. I couldn't believe it.

Noah's whole demeanor is improving. I don't know if it's the structured routine in the morning or the new school. He is sitting for longer periods at the table to eat and is holding his toothbrush himself and attempting to brush his teeth. He has had 2 great weeks at his new school. They told Tim that they are thinking about moving him to a higher functioning room. We hope they remember that he did this in the other building as well. He had 4 to 6 great weeks and then all hell broke loose. We will wait and see.

When I say that I am hopeful, don't think that I believe that Nate and Noah will be cured. I know they won't. I know that they will live in an assisted facility and never drive. I know that they will never marry or have kids. But, I do know that will a lot of hard work, they can gain small bits of independence and live productive, purposeful lives.

It's been a week....

Well, it's been a full week with new people in the house. I feel like a new woman! Nick and I are walking out the door at 7:30 (on time). I am no longer frustrated by trying to keep Noah dressed so we can walk out the door.

The second day the therapist showed up in Nate's room at 6:30, the look on his face was priceless. I'm sure he thought it was fun for one day, but this was an everyday thing????? He didn't get the memo. The therapist helps Nate make choose clothes and waits for him to get dressed. They then come into the kitchen where he helps fix his own breakfast (he choose pancakes the first 2 mornings....he loves his carbs). She sits with him while he eats and reviews his data from the day before. Then, he cleans up his dishes, brushes his teeth (with assistance), and washes his face (with assistance). He will now tolerate warm water to wash his face and hands. He also makes his bed (slowly). He then gets break and can choose a fun activity. He then comes up and helps unload the silverware from the dishwasher. Since he HATES the vacuum, he has run it all 5 mornings. He then gets another fun choice and then waits for the bus.

Noah has also been working hard in the mornings. I think his therapist has been working harder.... He threw a massive fit one morning because I thought he might try oatmeal for breakfast. I was wrong!!! Just the sight of the oatmeal sent him to the floor kicking and screaming. This went on for the better part of the 2 hours. His therapist is also learning how quickly Noah can take his clothes off. After the third morning, the stripping isn't getting further than his shoes. They are helping him learn how to put his clothes ON, sit at the table during a meal, use a utensil. and not shove all his food in his mouth at one time. After breakfast, he gets to choose a fun activity. Afterwards, he makes his bed (with assistance) and brushes his teeth (with assistance and no screaming). When all this is finished, he works on some academic skills. His body parts now include head, eyes, ears, nose, mouth, tummy, and knees. They are also reviewing his letters and teaching him how to sit and follow along with a book.

Nick is also reaping benefits. He no longer tries to follow after his brothers in the morning and keep them on track. He also remembers to make his bed when he hears Nate being instructed to make his. He did not butt in when Noah was having his tantrum the other morning. I was so proud of him! He let the therapist deal with it and just went about his own business.

Two other therapists came today from 9 to 1. They took Nate and Noah bowling and out to lunch. Apparently, Noah ran and slid down the lane a few times. His pants are covered in the oil from the lane. He used the restroom in the bowling alley and had a meltdown over the electric hand dryer. He dropped to the floor and screamed for several minutes. The therapist got him to quiet down and even made him turn it on again before he could leave the restroom. He will be using every public restroom they can find.

Noah is also adjusting well to his new school. I called to check on him one day and it was so nice that the child screaming in the background was not Noah. It made me smile.......