Thursday, February 26, 2009

Washington State Budget Cuts

I received an email detailing the proposed budget cuts in Washington. While it did not include all of them, it did detail the following:

• Reducing health coverage for up to 40,000 low-income people
• Eliminating housing, medical care and drug and alcohol treatment for 27,500 low-income individuals with physical and mental disabilities
• Eliminating adult day health care for 1,900 disabled and elderly people
• Eliminating the universal vaccine program
• Cutting community mental health treatment

This is shocking. To think that 40,000 people will no longer have health coverage. To think that people with disabilities will lose housing, medical care, and drug and alcohol treatment. The vaccine program is going out the window- which is shocking in a state that in some counties already has a vaccination refusal rate of greater than 15%.

While I know that money for our state has to come from somewhere, it is painful to see where it is coming from.

Without Little Bug, I wouldn’t be as aware of this and the impact this will make on people’s lives. It would be just a figure and maybe never even register. With my son and other adults with disabilities I have come to know, my awareness has grown. Little Bug has literally taught me more in his life than I ever learned in my life without him. I am grateful to him and for him.

Tuesday, February 24, 2009

So it begins

Yesterday was a super busy for us. We had a follow up appointment with the wizard. It was completely different because this time he was concerned and listened- about Little Bug's bowel movements, sleep patterns, and eating restrictions.

He wants us to consider completely changing Little Bug's sleep routine- the waking up in the middle of the night has started again- in order to encourage a new sleep pattern. If this doesn't work, he wants us to "reset" Little Bug's sleep patterns by giving him Benadryl. At this point, we aren't sure how we feel about this. When it comes to eating and bowel movements, he would like us to consider the GFCF diet. Nick and I aren't sure about this one. We look at what Little Bug eats and it is only G&C. We will have to consider this.

In other news, Little Bug is still over all 7 months behind or 2 years developmentally. For language, he is border line for what a 2 year old should be able to do or -1.6 deviations with a test score of 75 when the normal range is 85 to 115. This puts him at a scary place with the school. The doctor states that he may end up losing the option for services for speech with the school district due to being so close to the line, however he is hopeful that because he is ASD, he will stay covered. When discussing this with his Therapist A and FRC, they weren’t concerned as the bar for what a two year old should do is much lower than what a three year old should do. They both stated that we may find out that he will go right be into the moderate to severe delay range once the clock hits 3 years. One additional note the doctor had was that due to his overall delay, he wouldn’t recommend potty training for a year to a year and a half. As expected, he maintains his ASD diagnosis.

We also had our first meeting with the school. This is going to be difficult. The director was very defensive and willing to lash out. He explained that Little Bug should go to the school closest to him with an appropriate program. There are two options- a regular special ed classroom that meets 2 times a week for 2.5 hours or an ASD classroom that meets 5 times a week for 4.5 hours. I asked if we would be able to visit them so that we could make an educated decision. The reply was that they treat all classrooms the same and that it isn't appropriate to shop for a class for him. I stated that as the legal expectation for us as IEP team members is to make decisions regarding his placement, it isn't logical of the school to expect us to make a placement decision without knowledge about how the school's work. He was very willing to argue and quite honestly, it was hard not to take the bait. He was very dismissive in the way he spoke and often used air quotes when describing disabilities and symptoms and the extended school year process. He often made comments like- someone has read a lot of books.

I am hoping that this was a bad day for him and that this isn’t normal. However, we will prepare for this to be normal and to advocate for an appropriate placement in the least restrictive environment while having a behavior intervention plan ready. (I know, I do read a lot of books.)

Friday, February 20, 2009

Developmental Milestones

At our house, we believe that milestones and developmental charts are better left unread. They are great measuring tapes, but not something to dwell on or constantly consult. For one reason, Little Bug has too many discrepancies- his vocabulary is probably at close to 100 word and word approximations and yet he can do 48 piece jigsaw puzzles. Secondly, for us, it is painful at times to be confronted with the delays.
We do believe in checking in and we wanted to share that with you.

Motor Skills
feed himself (with some spilling)- does this with his hands mostly
open doors- are you kidding? We have an alarm system and a suspension rod on the window to keep him in. ‘Nough said.
hold a glass in one hand- not really. He is clumsy at this
hold a crayon well- he has mastered the “appropriate” technique
wash and dry hands by himself- not so much. If allowed, the whole bathroom would be wet, soap would be on the floor, the ceiling, and the dog, and somehow his hands would still be dirty.
fold paper, if shown how- never tried
build a tower of 54 blocks- the frustration level is strong in this one
throw a ball overhead- and over handed, behind his back, etc.
try to catch a large ball- can catch a ball
put on shoes (but not tie laces)
dress herself with help- nope, but he can take off his pants and diaper
use the toilet with some help- not even a blip on the radar
walk up steps, alternating feet
walk on tiptoes if shown how- he is a toe walker at times
walk in a straight line
kick a ball forward- he can dribble a soccer ball
jump with both feet
pedal a tricycle- doesn’t really understand the concept.

Sensory and Thinking Skills
recognize sounds in the environment
pay attention for about 3 minutes- if it is in an interesting topic
remember what happened yesterday- he can seem to remember what happened months ago at times and at other times seems to have no short term memory
know what is food and what is not food- he knows. Whether he chooses to limit himself to food only options is a different story
know some numbers (but not always in the right order)- We’re just starting this
know where things usually belong
understand what "1" is
understand "now," "soon," and "later"- no concept of time
substitute one object for another in pretend play (as in pretending a block is a "car")- has done this once a year ago, but never since
laugh at silly ideas (like "milking" a dog)- too literal for this
look through a book alone- if you want said book to have pages, then this isn’t an option
match circles and squares- He is a rock star at matching
match an object to a picture of that object
match objects that have same function (as in putting a cup and plate together)- We’re working on it
count 2 to 3 objects- Just started
avoid some dangers, like a hot stove or a moving car- Absolutely no fear or concept of danger.
follow simple one-step commands- selectively, but yes he can.

Language and Social Skills
use 3-5 word sentences- not yet
ask short questions- every once in a while uses the question intonation at the end of a sentence, but no 5 W, H, or E questions.
use plurals ("dogs," "cars," "hats")- not really as they are interchangeable to him- one cat can be a ditty, ditties, cats, cat.
name at least 10 familiar objects
repeat simple rhymes- Uh, no, but does scripting from movies count?
name at least one color correctly- he understands his colors
imitate housework or help with simple tasks- he loves to mop and vacuum.
ask to use the toilet almost every time- not even a blip on the radar
enjoy being read to
talk about feelings and mental states (e.g., remembering)- Nope
demonstrate some shame when caught in a wrongdoing- definitely Not!
try to make others laugh- He is a clown
play spontaneously with two or three children in a group- Nope
assign roles in pretend social play ("You be mommy;" "I be daddy")- Uh, no.
know her first and last name- Not really. He will repeat it and every once in a while refer to himself in third person as Yenna, but for the most part, he is baby.
understand "I," "you," "he," and "she"- nope
believe everything centers around him ("if I hide my eyes, no one will see me")
answer whether she is a boy or girl- Nope, but we are an extremely a typical family- in case you are just joining the program, I am a female to male transsexual and Nick does drag. In general, we don’t limit Little Bug’s interests to what is appropriate according to gender binary and also don’t tell him he’s a good boy, etc. Just not part of how we think.

Do you ever realize that something amazing has happened, but happened so slowly that you couldn’t perceive the change? One day, you wake up and are confronted with a miracle of some sort. Sometimes, every day mundane things that to most people aren’t miracles- like a flower blooming on a winter day, a phone call from a person you thought was lost. Other times, they are really big miracles. Yesterday was one of those days. We looked at Little Bug and realized the growth that had happened so slowly was tremendous. He is now using two word sentences without prompting most of the time. He was describing items and demonstrating that he understood the difference between things and what they are used for. Again, to many people this may be a mundane thing. To us, it was amazing. Suddenly, we feel capable and confident. We feel like being hopeful in certain areas and in small doses is warranted. Some of the fear is gone.

People often say that having a child with special needs is like a marathon- pace yourself. What they neglect to say is that while marathons can be grueling, frustrating, daunting, and ugly at certain points, you often get a second, third or fourth wind. Something happens where your legs just keep going even when your brain says they shouldn’t. That is what this is for us. A second wind. A welcome reminder of what we are working for and what we are investing ourselves into.

Tuesday, February 17, 2009

An interesting conversation

Nick and I were discussing Little Bug's auditory defensiveness- not sure if that is the correct name, but that's what we call it. Basically, Little Bug can't handle any sudden loud noises- no movies, no sports, no Pike Place Market, only certain restaurants, etc. We were talking about it because we went to Pike Place Market yesterday. We figured Little bug would love the famed fish throwers.

Not so much. I have the scratches on my belly from his spider monkey climbing to prove it. They would yell the order and he lost it. He covered his ears with his hands and used his feet to climb my body while screaming no over and over again.

So, I did the only thing I could- wrapped my arms around him and carried him football style through the crowd. If you have ever been to Pike Place, you know that the top floor is street level. To Little Bug, that was not okay- too many uncontrollable sounds- cars, buses, street musicians, crowds, and fish throwing screaming men!

Needless to say, we didn't stay long. While discussing it, I observed that it might be an adults only activity. Nick thought that maybe when he gets older we could try again. Then we looked at each other and realized that age doesn't change things. Time and exposure do.

Nick and I had tossed around the idea of therapeutic listening previously and now are more interested in doing this. We want Little Bug to be able to handle everyday uncontrollable sounds- garbage trucks, fire engines, train whistles, store announcements, fire alarms, crowds, etc. without it sending him into the fetal position while covering his ears and screaming.

If anyone has any ideas or suggestions, let us know.

Friday, February 13, 2009

Oh, how I love you...

Mr. White Noise Machine. You came into our home and have done something we couldn't- you helped Little Bug to sleep through the night consistently for the past four nights. Oh, and you helped the dog sleep through the night too! If you need anything- new batteries, a dusting, anything short of a night off, I'm your man!

Seriously though, I love our white noise machine. It's a truly simple solution- a $15.99 Homedics no clock 6 sound noise machine. It offers heart beat, ocean, rain, jungle, summer days, and something that sounds like zoo animals on speed. Little Bug has been very happy with it. He asked for it to be turned on when he laid down last night. He watched his movie, fell asleep, and barely woke up when they took me to the bus stop.

Hopefully, this is our sleep breakthrough. Little Bug hasn't slept through the night yet, so this is two and half years in the making. Granted, he has gotten past the point of needing a bottle every two hours, but it is still disruptive to your sleep to have a little guy sit up every two hours and whisper, "Hi Da. Da? Da? Hi Da." Until you roll over, make him lay down and say, "Hello Little Bug, now go to sleep." He does, but somehow he needed to say hello every two hours and be talked to.

Here's hoping that our love affair with Mr. White Noise Machine continues as it has been the best honeymoon period ever- lots of happiness and sweet, sweet, sleep.

Wednesday, February 11, 2009

Which really is the lesser of the two evils?

It’s that time again- open enrollment for benefits- and we are stuck between a rock and a hard place. On one hand, we can keep the policy we have which means that every month we will have $280 of co-pays for Speech and Occupational therapy alone. On the other, we can go with a different policy that will require us to pay a $300 deductible and then be done with it. Sounds like the logic solution, right?

It gets tricky when you start looking at anything else besides Little Bug’s therapy. Anyone who knows me knows I like to be prepared. I also am a worrier. Having Little Bug in my life has done a lot to assuage my worry- I am more in the moment. At the same time, it has also made me a better long term planner as we have to continuously look to the future and make decisions today for where we hope to be.

Sometimes, looking to the future can include planning for an unforeseen incident. With the second insurance option, we will have to pay 10% of any hospitalization, lab work, X rays, ambulance rides, prescription, rehab, surgery, etc. Given Little Bug’s medical track record- 4 CT scans, 3 MRI, 2 sets of x rays, 1 day surgery, 1 face lift that involved 3 surgeons, 2 anesthesiologists, 5 nurses, and a neurosurgeon, 16 trips to the emergency room, 7 trips to Urgent care, and so many doctor’s appointments we can’t count, it seems like a bad bet.

While both choices are expensive, at least one is certain- finite amounts for any situation- where as one is 10% of any number of unforeseen expenses. All it would take is a couple of ER trips, to make us financially doomed. For now, we will have to go with the lesser of two evils.

What neither of these policies cover is the additional therapy and supports that Little Bug needs- a behaviorist. Again, for this we are stuck between a rock and a hard place. Our first choice is paying someone roughly $100.00 an hour to come in 4 times a month to work with us and Little Bug on things that affect his home life. The second option is a much bigger immediate investment- parent training. Now both sides have their costs- the first is sheer financial to the tune of $4800 a year. The second is limitation. We cannot afford to pay for training in more than one type of therapy- ABA, Floortime, Rapid Prompt (pick one). Secondly, it is limited in that it would only be our input in the therapy. Nick and I are not experts in much besides Little Bug. There comes a time when you have to have outside influence and perspective in order to see the whole situation and make good choices.

We also have one other option that we are contemplating- working with what we have. Simply doing the best we can with the knowledge we have and using a behaviorist only as a last resort. For me, this causes feelings of guilt and worry. Am I considering this because of finances only? If we skip either of the other options, will Little Bug be missing resources? Can we do it ourselves? I know that Nick and I have read volumes of books when it comes to ASD and home therapy solutions. We have resources in the online community that have been amazing to us.

I think for now, we will have to take a leap of faith and trust that we can do this.

Thursday, February 5, 2009

A paper

A while back, I had a good friend from work and her daughter come over. Her daughter studies ASL and was extremely interested in how that is used with children with ASD. She came over to meet Little Bug and see how he used ASL.

This is going to be a continuing thing for her and has also morphed into a school project- she is working with Little Bug on ASL and will be visiting his school and in the process will be providing the school with reports. I received her first one yesterday and it made me cry. I thought I would share it with you.

Lennon

About a year ago my mother told me of a coworker's son named Lennon. His son was going through medical issues and was having a hard time learning to speak. Soon after a doctor diagnosed him with a form of autism. My mom and I began talking about it almost religiously since I was so curious to know about this little 2 year old boy. Once when discussing it I suggested that she (my mom) talk to Blake (Lennonʼs dad) about teaching Lennon sign language to help jump start his communication skills. Since then Lennon has been enrolled into a special school in Tacoma where he is attending a class which specializes with kids that have trouble with verbal communication due to mental or physical difficulties.


On January 11, 2009 I finally got to meet Lennon, Blake and Nick. Blake realized how much interest I had conjured up about Lennon when talking to my mom. So I was asked by Lennonʼs parents to meet him and possibly help them and him with his Sign Language. Upon meeting him I absolutely fell in love. Not just with how cute this little boy was when he signed but with helping him as well. I felt so blessed. When I first arrived he was very scared and very shy but as soon as I signed my name and showed that I can sign like him, he immediately warmed up to me and my mom. Even though he may not have been able to understand what I was saying he may have realized I wasnʼt a bad person because I knew how to do what he did. He also noticed that my mom had a shark figurine in her pocket which also helped break the ice. It should be noted that often times children with autism will focus on a word a thing and in Lennonʼs case this is anything shark/whale/ fish related. Watching him sign along to his videos was just heart warming and a great experience. I thought going over there I would be somewhat teaching him but in turn he wound up teaching me more then I expected. He knew signs that I never knew. Which I thought was awesome. While I was visiting Blake had told me that when he was two years old he could barely say ten words while the average two year old knows how to say about two hundred. Now after being at the school Lennon can say about thirty some odd words and can sign over a hundred. (BLAKE EDIT- Lennon's word surpass this but this was the last :"word update" she had from us.) I thought this was incredible. I was asked by Blake to come back and visit more so Iʼm hoping these visits become more frequent. Recently my mom was talking to Blake who told her that I have special permission to go to Lennonʼs school and see him in his learning environment. Upon hearing this I was so excited because I realized while visiting him that this was what I want to do.

I have found this experience that Jess speaks of to be true time and time again. With our son and other kiddos with disabilities at his school, we often try to teach them and in the process end up changing ourselves and being taught so much more than we had ever expected.

Tuesday, February 3, 2009

Serious Accusations

Before I get to the meat and potatoes of this post, I wanted to share how well Little Bug did this weekend. We went to the zoo on Sunday and it was amazing. He walked the whole way. He normally has to be carried or put in the stroller in public because he is a runner- loud noises, strange smells, quick events happen and he runs away, regardless of what danger he may be running to. Not on Sunday. He walked the entire zoo. He asked to see specific exhibits- efents (elephants), sharkkks, and whales.

We then went out to dinner- stupidly not realizing that on Super Bowl Sunday it would be insanely loud. He did a great job in self soothing. He would cover his ears and lean to me, but didn’t scream and get hysterical. Finally, he had had enough and he and I went outside while Nick paid. I sang the wheels on the bus and shake your sillies out songs for him and he was able to focus and do the motions with all of the commotion from the inside spilling out.

Yesterday during his Autism one on one therapy, we went shopping. We took him to Target to show his therapist the things he had difficulty with. This, of course, meant he didn’t have difficulty with those things. He normally will not hold Nick’s hand or let him push the cart when I am around. Also, putting Little Bug into the cart is more difficult than giving a cat a bath- I know, I have done both and it is officially easier to bath a 15 pound cat with claws than it is to put my toddler in a shopping cart.

Again, he walked through the store. He only refused to hold hands a few times. He had one meltdown about holding hands with Nick. It was by far the best shopping trip we have ever had. We are going to be sad to lose our Therapist A. She brings out things in Little Bug and ourselves that we didn’t know were there. We will be losing her in July when Little Bug turns three and is too old for early intervention services.

Now, to the meat and potatoes- some really serious accusations were made about me and Nick this weekend. It was outright stated that there was nothing wrong with Little Bug and that he is fine. It was inferred that we are causing these problems. It was stated that what we go through isn’t a big deal- all parents have to pay copays and get things for their kids and all kids have trouble with certain things. That our insurance is inadequate if it doesn’t cover Autism- which clearly isn’t something Little Bug has.

I have to say that we are deeply hurt and flabbergasted. It is astonishing what people will say without thinking or walking a mile in someone’s shoes. This came from a person who has no understanding of ASD. They have no understanding that we turned our lives upside down- Nick cut back his work hours, I have put any thought of career trajectory on hold and our money was rerouted from our previous goals- savings, vacations, 401ks- to what Little Bug needs- in August of last year.

This came from a person who has no idea what it is like to watch their child beat their face on the floor or bite the skin of their fingers for a reason unknown because your child at 2 has 10 words. This came from a person who has no idea how many times we have been told that we are bad parents in public. A person who has no idea how many times we have been told that we don’t qualify for this or that and then are left with a bill that is difficult to pay but we do because Little Bug needs it. This comes from a person whose child’s basic needs are love, food, clothing and shelter- nothing in there about therapy, lifelong support, or therapy tools- like a netted swing ($200), a white noise machine, Ps and Qs and chewie tubes, picture schedules, transition boards, Task analysis boards, litany of sensory activities, Signing Time and assorted other ASL supplements, and that’s just the tip of the iceberg. A person who has no idea what it is to not know whether your child will ever be independent or potty trained or what their full potential is. A person who doesn’t lay awake at night willing themselves to never die so that they can always be there to advocate and support their child.

Shame on you for judging what you know nothing about. Shame on you for lying. Shame on you for making an accusation that if heard by the wrong people could cause serious problems for our family.

People, seriously- take the time to think before you open your mouth. Think about that strange person in the hallway or that “brat” at the grocery store whose parents seem way too permissive. If that isn’t enough, think about the hard times in your life. Think about the time when you were perceived as rude but were distracted by something, which to you was life altering and yet the world still turned on it’s axis. Think of all the times people were incredibly hard on you and “just didn’t get it”. Think about how you would feel living under a magnifying glass.

If none of this is enough, then SHUT THE HELL UP AND MIND YOUR OWN DAMN BUSINESS!