Wednesday, September 30, 2009

Insurance Update

This week, we got a little more bad news and some really good news. The bad- Little Bug's therapy will need to be reviewed every 25 appointments to verify that it is medically necessary. Based on their communication, this will be based off his records as well as clinical criteria- which is about a 25 page document that we need to read and understand.

The good news is that just about everyone involved in this situation messed up. The information provided to us was wrong again. This time, confirmed with multiple people as my company and our insurance company, we were told that he has unlimited visits for OT and speech based on the fact that he has a neuro-developmental clause.

We also found out that the insurance company wasn't paying attention to the fact that Little Bug was diagnosed with ASD. This in turned messed up the billing, which is why several hundred dollars of claims were denied.

This means, that our average monthly health bills will go from $1166.00 to $700.00 a month! This is wonderful!

All by himself

On Monday, I was asked to attend part of the school day with Little Bug in order to make a picture schedule for his teacher. This entailed creating many transitions based on his daily schedule. This also gave me an opportunity to see his class in action.

I was really impressed on the sensory options that were available- sand and water play, play dough, a quiet spot, as well as an indoor fort. I also liked the way the room was set up- lots of options, yet displayed in a way that was not overwhelming.

I was concerned with some of the other things I saw. Little Bug was allowed to play trains for an hour without any interaction encouraged. By the staff, he wasn't prompted to share or have conversations. He wasn't encouraged to pick a new task by anyone but me.

The teacher and I had a discussion about his picture schedule. She stated that she had wanted a picture that says, "I share toys!", however the SLP stated that was a more behavioral approach. I told her I agreed with the SLP. The behavioral approach needed to be consistent as well as direct. For example, you could say, "Little Bug, share a piece of track with L." Once he complies, get excited. Do this over and over again.

I don't know how to nicely explain that the support level in class needs to be stepped up a bit. Little Bug should be directed to make new choices as he will perseverate on the trains all day if you let him- and they do. We get a letter telling us what he did each day; each day, it says I played trains!

I am concerned about our approach. This teacher is kind, patient, flexible, and willing to learn. She has asked for help and opinions. She has been very open in her communication. I want to make sure that we aren't telling her how to run her class, but what our son needs.

Friday, September 25, 2009

&)#^%*# Insurance

Nick and I were given a nasty surprise in more ways than one from our insurance yesterday. Let me give you a brief outline of our insurance situation.

Our insurance premiums are $400 a month. Our co-pays are as follows:
• Regular doctor appointments: $25.00
• Specialist Appointments: $35.00
• Urgent Care: $75.00
• Emergency Room: $100.00
• Hospital Stay: $300.00

Additionally, we each get 60 visits to short term rehabilitation a year- part of the specialist bucket and cost $35.00 each. Originally, we were told that Little Bug’s OT would be considered short term rehabilitation, but not his speech. We were also told that we would need a referral for each service ($25.00 each appointment) every three months- to be sure he still needs the therapy- from his PCP. Also, they would need confirmation of diagnosis from his neurologist ($35.00 each appointment) as well as updated case information, every 6 months. Just to be able to have therapy, we are looking at $170.00 in co-pays.

We found out yesterday that we were misinformed and his speech is part of his short term rehabilitation visits. This means that we only have enough visits for 6 months a year. The co-pays for these visits total $2,100.00. After the six months, we will have to pay for speech and occupational therapy out of pocket. Our speech therapist’s rate is $145.00 and the OT clinic is $210.00. For a conservative estimate of 20 visits each, that will bring our out of pocket expenses to:

SPEECH: $2,900.00
OT: $4,200.00

Our total therapy costs for speech a year will be $3,950.00. Our total costs for OT a year will be $5,250.00.

One year of medical bills for items solely related to Autism is:

$9,200.00

This doesn’t cover a behaviorist. Even if Little Bug only saw a behaviorist once a month that would be another $1,200.00. If he saw them 4 times a month, $4,800.00. Our total medical bills for Autism would be between $10,400.00 and $14,000.00.

This doesn’t include home therapy supplies. This doesn’t include doctor’s appointment for things that happen because of his Autism- when he hurts himself because he doesn’t seem to feel pain, when he eats glass or like last night, scratches his actual eyeball when self injuring.

Nick and I are lost. We don’t know what to do. We will run out of visits for this plan year in February. Our visits will renew in April, and then run out again in October.

There is one side that wants to say, we need to set reasonable goals and just do the best we can. Fudge a little- every other week appointments for speech and OT to get them covered with more home therapy. Maybe see a behaviorist on a consultant basis only- think, in case of Autism emergency break glass.

The other side of us says that we should sacrifice everything. Give up our jobs, apartment, and current lifestyle, move in with our family who has so graciously offered, and get it done. Again, this is a huge risk. We don’t know what we would qualify for in terms of assistance. We don’t know if Nick would be able to find full time work we are considering moving as it is a severely economically depressed area of Washington. We know that the area is much more conservative and this will create a whole new set of difficulties for Little Bug and our family.

Bottom line, this is with insurance. Total bills, including premiums, co-pays, and out of pocket expenses for just Speech and OT a year is $14,000.00.

I am assuming that this is normal or even low. Most people don’t put these numbers out like this. I know- its taboo to discuss money. But you know what? If people don’t discuss it, it will never change. People need to see the raw numbers. The debt. The choices faced. We are left wondering what enough is. What is enough for us? What do we do for Little Bug? How do we make this right?

I am certain we aren’t the only ones facing this. Unfortunately, I don’t have the answer. I don’t have a solution.

Thursday, September 24, 2009

Bus Update

Little Bug has had a substitute bus driver since Tuesday. Monday was an awful day for the bus- screaming, yelling, hitting, biting, etc. Tuesday onward was a complete 180. He was willing to get on the bus on Tuesday. The bus driver had an aide who helped Little Bug to his seat.

Yesterday, he was jumping up and down with excitement about the bus! Now, to me, this says that the root problem was probably with the bus driver. She is nice and all, but she did speak loudly with an incredibly high sickeningly sweet voice. If she comes back, we are going to try to give her some suggestions about dealing with Little Bug.

One final note about the bus- he saw a school bus last night and said I love the bus. I like Ms. Carla (Ms. Carla is the substitute who was done something amazing.)

Wednesday, September 23, 2009

Confessions

This post isn’t really about Little Bug or ASD, although they are featured heavily. It isn’t about getting suggestions or brainstorming, although that is always helpful. It isn’t about health insurance or co-pays, although they are a part of it. It is simply about some things I struggle with and wanted to get out.

Confession- this isn’t getting any easier. I expected that over time, it would. Somehow, I would accept certain things and move forward. I thought that I would be okay with people not understanding by now. I thought that at some point, I would let go of the sorrow I feel when someone brags about something their 2 year old can do. Something I watch Little Bug struggle with and can’t do. At some point, I wouldn’t be jealous for Little Bug.

Confession- money makes me insane. Now that Little Bug is out of the Birth to Three program, we are trying to cover all of the therapies ourselves and with insurance. Our insurance, good insurance, covers Speech and OT with a $35 co-pay visit. In a month, that is $280.00 of just co-pays. It doesn’t cover a behaviorist at all- who we have decided we need because for some behaviors, we are at a loss. The behaviorists I have found through my own research and recommendations from friends and local hospitals start at $100.00 an hour. One was $190.00 an hour. If we go with the cheap one, that’s another $400 in therapy costs a month. A total of $680.00 a month on just therapies. I have a feeling that the above amounts are typical for a family with ASD and probably on the low end because we have insurance. Like Ted Kennedy says, it does feel awful to look at someone you love and know that there is something that could help them, but not be able to afford it. If we try to pay for all of the above therapies, we are $200 short a month. Nick and I are left with the following dilemmas-

Do we save for retirement or pay for Little Bug’s therapy? How do we do either while keeping our heads above financial water?

Confession- I feel guilty a lot. I feel like I should have known what was going on with Little Bug earlier. I was so depressed and felt panicky about him all the time (even if I didn’t let people know it). I feel like I should have listened to myself. I feel like if I don’t spend every waking minute with him, something will go wrong. I feel guilty at times for the growth that Little Bug has made. It seems unfair the way this works out. How some kids progress and others progress differently. It makes my heart ache and tears spring to the surface.

Confession- I hate the term splinter skill. There are lots of people- NT people- who are really good at one thing; in fact, most of us are. This achievement isn’t looked at as an abnormality. It is expected. Yet when people with ASD are good at something, it is called a splinter skill and minimized as though somehow, because they are Autistic, having amazing skills is less amazing.

Confession- I worry insanely for the future. I worry about whether he will be able to work or live on his own. I worry about how to prepare for the worst case scenario. I worry about Nick and I being able to last through this turmoil of split shifts and only seeing each other part of two days a week only for another three years. I worry about what happens when Little Bug is too big for me to make him do anything. Right now, he is too heavy to carry for long and is over three feet tall. What happens when he is over 4 feet tall and 70 pounds?

Confession- his self injuring isn’t stopping. It scares me. It makes me hurt so badly to watch him bite, scratch, hit, and throw his head on the ground. I feel so small. At times, it is all I can do to stay with him and hold him while he thrashes. I hate watching him hurt himself. I hate that there isn’t anything that I can do. This weekend, he hit himself hard enough to bruise his face and hand and cause them both to swell.

Final confession- I realize that the answer lies within us. I realize that I must give myself absolution. I realize that I still need to work on myself in order to make this work. I realize that I can’t worry so much. I realize that I need to listen to Little Bug and be in the moment. I need to stop mourning for things that haven’t happened yet and appreciate what is happening now. I realize that I need to do my best and accept that mistakes will happen. I realize that I have the power to make a difference, in Little Bug’s life and in others. I realize that there is always hope.

What do you realize?

Tuesday, September 22, 2009

I know you're trying to tell me something!

Little Bug had a really hard time at school yesterday. It all started when he had to ride the bus. This week he has begun to ride it by himself both ways. Apparently, he cried the entire way there and also bit the bus driver when she attempted to buckle him in.

He also had a really hard time with transitions and his teacher has asked that we help make a better picture schedule for him as the one that they have simply isn't working.

When we asked him why he had a bad day, he sai, "On da bus.... lowyang."

We have asked the following questions and are no closer to the answer:
-Is there a person name Logan? NO
- Was someone laughing? NO (laughing is disturbing to him at times)
- Did someone touch you? No
- Did you sit with someone? No
- Was the bus driver nice? Yes...sad...lowyang

We have no idea what he is taking about. We both are somewhat frazzled as we can't figure out what the hell that word means and why it is so scary for him.

Thursday, September 17, 2009

First Day of School Part 2

The actual school part went well yesterday. From Little Bug's perspective, it was awesome because he was able to play Thomas and sign Wheels on the bus. He even ate some of his lunch.

From our perspective, it has worked out better than we had ever dreamed. Little Bug doesn't have an aide required by his IEP, but it has ended up that one aide in class is dedicated to him. The aide stays with him through out the activities to encourage social interaction, sharing, and to be an anchor for transitions. This is all because of his teacher. She has learned about ASD and feels that him having an aide is the best approach.

His teacher is AMAZING! We took the time to write a letter with areas that he struggles with and suggestions as well as commonly used signs. She not only read it, but responded with thanks as well as how she implemented our suggestions.

She has gone above and beyond. She and the SLP have created a picture schedule for him. The SLP is hoping that he will not need it based on language growth by the end of the year.

Last night, there was an open house- which Hama and Bumpa came up for. They loved his classroom and his teacher. We loved his teacher. She spent half an hour with us, asking questions, taking feedback, and actually writing things down. She was open minded and asked for help. Being that Little Bug is the first Autistic child she has taught, she was very eager to learn.

I was amazed that she listened to us. I am used to having our concerns down played and minimized. Suggestions ignored because we don't have a degree. Not her. She asked for help in making a support for "How is your engine running?" to help him stay on track with the speed of the class. We taught her how to pick him up when he is aggressive and she took our suggestions on how to create a better quiet spot. Hers was in the middle of the room under a play structure and bright lights.

Needless to say, we are happy and have lots of homework. I am glad to do it. She is willing to learn and try and it is our job to set her up for success and support her. For her, we are creating transition cards, "How's your engine running?", and providing feedback on how we are implementing goals at home. For the SLP, we are providing the sight words that Little Bug recognizes, what goals he has with his SLP, and how we are working on it at home.

There were some bitter sweet moments last night. When we walked into the school, a little guy from his class began yelling, "That's my MAN! I like him! We play trains!" Little Bug didn't even notice or acknowledge it. It took 6 prompts to get him to look up from the patterned tile floor to say hi. A little girl came over and introduced herself to me. She looked at me and said, "I play trains with him. I like him." Again, no acknowledgement from Little Bug. On the bright side, the kids didn't seem phased by his lack of response. They just accepted him for who he is.

I don't know how to say this in a PC way, but it is different seeing him with typical peers. At the last center, most of the kids had Autism and they all ignored each other except for rare spontaneous interaction. It is such a drastic change to see him with NT kids. I never realized completely how delayed his social skills are. How delayed his speech is compared to other kids. Don't get me wrong, he can chatter a mile a minute, but not in the same functional conversational way that these kids do.

Wednesday, September 16, 2009

First Day of School!





Well, it's official- Little Bug is in school. This morning was a bit rocky. In general, he was pretty high strung and resistant to any diviation from routine. He cried about having chocolate milk and not white milk. The wrong kind of cereal sent him into a 15 minute fit. The shower this morning sounded like he was being murdered.

We thought that things were getting better because by 8:30, he was playing with his toys. Unfortunately, not. While he voluntarily put on his shoes and harness, waiting for the bus was another story. There was lots of stimming and ear covering; verbalizing and trying to fling himself on the ground.

When the bus showed up, she had us hand him through the door so she could strap him in. Big mistake. His screams could be heard over the bus and soon she was asking for help. He was hitting and pinching his face while flailing and making it near impossible to finish strapping him in. It took the two of us to get him in. The driver asked me to ride with him this morning to make for a better transition.

He seemed to be doing beter once we got to school and he recognized the buildings and the aides. Hopefully, the rest of the day goes better.

Tuesday, September 1, 2009

School Woes

Little Bug has reached a new low when it comes to school. Any mention of school, school bus, new friends, results in NO. We saw a school bus yesterday. He looked at me with tear filled eyes and said. “No bus, daddy. Pease no bus?”

Hopefully this is normal, although he seems to be taking it to an extreme. We took him shopping for shoes yesterday and I stupidly mentioned school. That tanked the whole damn thing. He screamed and cried and stimmed and lashed out at the boxes and his parents.

This weekend, to try to ease the transition, we made a paper chain to count down until school. We thought he might like to pick one of his favorite colors- red or blue- for the first day of school. When I asked him what color should be the first day of school, he looked at me and said, “BLACK”. He *hates* the color black and yet this was the color for the first day of school.

When watching Thomas the Tank Engine, we saw an episode were Thomas had to help the children get to school. He immediately covered his ears, turned off the TV and then put away Thomas.

We have tried taking him to the school in order to make him excited about it as well as talking about other people who go to school. No dice. He isn’t interested in school.

He has also begun to regress and his speech therapist is concerned. He is unable to answer yes or no questions correctly 80% of the time. He has begun to show much more echolalia in his speech.

I need to email the school and tell them that they have a storm brewing. They need to know that he is petrified. They should have some sort of supports on the bus and to get him off of the bus. We also should get a recap of his first day.