If you focus on the rain you might miss a rainbow

I've become quite a recluse in the past year. Since my accident in November of 2008 I have had pain in my back everyday. I can't get comfortable and everything makes it hurt. Sometimes I get severe muscle cramping in my right buttocks that creates weakness in my thigh and cramps up my calf and makes my foot go numb. All this physical pain reminds me of my accident every day. I avoid driving. It just plain scares me. The world in general scares me. I have suffered a lot in the past and dealt with a lot of jerks and scary situations. Since my son's diagnosis of Autism we have had to fight so many battles with the school and other people's ignorance. But somehow I have developed a positive attitude about life. I really try to find the silver lining.

But my accident has really done a number on me. The world outside my door has come to represent endless opportunities for pain, frustration, injury and death.

I think God was trying to tell me something this morning. Something that I really needed to see.

I went to put Stephen on the bus and this is what I saw.

A big ole tree limb had fallen where we normally have our car parked. I thanked God Pat had taken the car to work this morning. This freaked me out when I thought of what could have happened to our car if it had been parked there. But it wasn't. God spared us that drama. This fallen tree limb symbolizes how I have viewed the world lately. Full of potential drama, disaster, damage and things that could make my life more difficult.

And then.....

I went to put Olivia on her bus and this is what I saw.

A flippin' rainbow! This is what God wanted me to remember that I have forgotten. The world outside my door does offer the possibility of rain and fallen tree limbs but there could also be rainbows. If I never leave my house I could be avoiding not only the painful things out there but also the wonderful things.

I also think that this experience clearly illustrates that even when we are going through pain or hard times there is always some lesson that can be learned or something wonderful that comes out of it that we never would have expected. I guess I have to start stepping out more often or I could be missing a lot more rainbows.

How many doctors does it take to diagnose my daughter's skin disorder?

I'll let you know when she's 20!!! Seriously, that seems to be the consensus. The 2 appointments to the Geneticist in the past year gave us the diagnosis of Segmental Neurofibromatosis but she said 100% certainty can't be reached until she is an adult. The appointment with the Neurologist gave us the same diagnosis. However, she suggested taking her to a Pediatric Dermatologist, when I brought up the missing pigment she has on her left shoulder and left side of her neck.

So, the Pediatric Dermatologist we took her to last week says she has THREE different things going on with her various skin markings! I am not kidding! She thinks that the large cafe' au lait spot that goes from the underside of her left arm starting at the elbow onto her left chest and left side of her back with the gazillion freckles in it is Unilateral Nevoid Lentiginosis or the other name for it, Segmental Nevoid Lentiginosis. She thinks the missing pigmented areas are Nevus Depigmentosa and the small cafe' au lait spot on her right calf with the moles in it is Nevus Spilus (it occurred to me that it looks like a chocolate chip cookie while the nurse was taking photos, lol). One new discovery she made is a lightly depigmented area on her left eyelid when she examined her skin with a Wood's lamp (looks like a black light). She said that it could mean that her missing pigmented areas are Vitiligo but they would have to be white for that diagnosis which might develop later.

In conclusion she said that all the different things do not have complications or any negative side affects. However, when I asked her if she was sure about this not being Segmental Neurofibromatosis she said we wouldn't know until she is about 20! For reals, people. So we just have to wait and see what does or doesn't develop.

She said we don't have to do any more hearing tests or Neurology check ups which is good. Lord knows we have enough other issues to keep us busy!

Why I hate the "R" word

This topic is a thorn in my side, a bee in my bonnet and every time I hear the words retard or retarded I want to scream or break something. Just typing those words, which are so offensive to me, makes me feel like I am committing some horrible crime against humanity. I am all for freedom of speech but those words and there common usage to describe someone or something as uncool, stupid, lame, bad or less than human makes me feel that they are just as bad as the "N" word or any other hateful slur.

The "R" word is used because people fear being different, dependant and defenseless. They use the word in an attempt to distance themselves from something they know deep down inside they have every chance of becoming due to stroke, drug and alcohol abuse, illness, traumatic brain injury from war or an accident or old age.

I love my son. He is very special and precious to me. I am overflowing with pride at all the things he has accomplished in the face of all his challenges. He has taught me so many things and made me a better person. The fact that anyone looks at him with disgust or hatred for being mentally challenged makes me angry, sad and fearful.

I'm angry because most people still pepper their conversations with the "R" word like it is no big deal. Even people close to me use it. I get tired of telling them not to. They should know better. These are people who know and love Stephen. But the fact that they say it to me and probably everybody they know shows you how accepted it's use is in our society. I have very rarely used the word and when I have it has been in reference to other's use of it and how much it upsets me. I never said it before I had Stephen. Now, I swear like a sailor but I won't use that word or any other slur against a group of people. All those hateful words have always disgusted me and I have never used them and don't understand why others find it necessary. I judge people as individuals. I don't discount or hate whole groups of people based on their skin color, sexual orientation, weight, mental and physical challenges, etc.

I'm sad because the people who use the "R" word are reducing all people with mental challenges to something less than human. It is spoken with the intent to insult someone or something. It is not a positive word no matter how you look at it. My son is one of the sweetest and well behaved kids I know. And he has every excuse not to be. And even if he wasn't so well behaved because of his Autism, he doesn't deserve hatred or disrespect. I see some of the worst behavior in "normal" kids on "Supernanny" and those kids know better. They are usually the result of horrible parenting which is preventable. My son did not ask to be born with Autism. He can't help his odd, repetitive and obsessive behaviors. My son is trapped inside a body that won't act the way he wants it to. He knows he is different. How cruel is it that people target and pick on and hate on people like my son who can't verbally respond to their ignorant comments?

I think that people who use the "R" word are saying more about their own emotional and intellectual impairments than the people they are describing.

I am fearful because the prevalent use of this word means my son is a target for abuse, neglect and worse. What is going to happen when I and my husband die? Who will protect him from this rampant hatred of people with mental challenges?

The next time you "slip" and use the "R" word or brazenly pepper your conversation with it in an attempt to be funny remember you are spreading hatred about people like my son, a vet who has a traumatic brain injury from being in a war, somebody's loved one that had a stroke or Grandma with Alzheimer's. Remember, someday, when someone uses the "R" word they could be spreading hatred about YOU or someone you love.

I haven't been blogging for months. Sometimes I feel like there is no point when I don't get any comments on my posts. I assume no one is reading what I write. I figure unless something "amazing" or "exciting" is happening with my life than there is no reason to blog about it. Then, I read and see all the negative things about Autism and people with mental challenges and I realize that is exactly why I need to keep blogging about our mundane life with Stephen. It IS "amazing" and "exciting" that I have a loving family that functions and thrives because of all our challenges in this hateful dysfunctional world. I need to keep showing how wonderful our life with Stephen is because it just might change one person's view of people with Autism and make them stop and keep their mouth shut when they are tempted to say the "R" word. Maybe just one person will use one of the millions of words in the English language to more accurately describe something bad, uncool, stupid, lame or less than human without insulting millions of human beings that need and deserve our love, patience, protection and understanding.

Olivia at the Fall Festival

We bought the vampire teeth right before we went and they are clearly made for an adult. They are soft rubber and I will be trimming them down before Halloween.

Olivia with her friend Domenick

Trunk or Treat

Waiting to go into the haunted classroom.

I love it when I don't have to squeek to get the grease

Well, Stephen came home early on Wednesday because he threw up at school. It was totally random. He was just sitting there and then he ran to the bathroom. The fact that he knew to go to the bathroom is a plus. He hasn't thrown up much in his life, thank God, and when he has it has usually been with a seizure. We have only been able to get him to the bathroom a couple times before he has thrown up. He was fine right after and no signs that it was seizure related. I kept him home on Thursday just to be on the safe side.

I got a call on Thursday from my daughter's school principal, she is also part of Stephen's AT team because she used to be the PT and has training to do this type of evaluation, and she said that they would be bringing some devices to the school on Friday. Well, I talked to the teacher on Friday and she said they had postponed it until Monday. Hopefully, this is not the start of more delay tactics. I asked the principal if he was going to be able to bring the device home and she said yes. I also asked whether or not we would be able to get one through our insurance that we would own once they found one that worked for him and she said yes. All good so far. Now, I am hoping that he will take to something and be able to use it to communicate. Prayers and finger crossing are welcome : )

I have found many many times in my life that when I am trying really hard to make something happen and it isn't that I need to let go and let God. And sure enough things come to me and my family that we need. I have learned to get up everyday and go with the flow. Yes, I plan ahead for as much as I can but I remain open to things not going as planned and accepting it because I always find out later that it was for a good reason. Does this happen to any of you? It has made my life so much less stressful and strengthened my faith that God is out there and knows what we need better than we do and is always guiding us down the path we should be on. Even the "negative" times in my life happened for a reason, to teach me something I needed to learn or make me appreciate the good times more when I have them.

Don't believe the hype! My universal healthcare crusade

I just watched "Sicko"twice this week. The first time I watched it by myself and cried harder than I have cried in a long time. If you have a heart in your chest that is beating you can't help but be disturbed by the content of this movie and how it exposes the health insurance companies as nothing more than corporations out to make as much money as possible while injuring, making sicker and killing people in the name of profit. I have become obsessed with researching this issue. What I am finding is making me want to shout from the hill tops that others need to stop believing all the lies and propaganda about how universal healthcare would be worse than the system we have now.

Do you realize our country is ranked 37 in the world for healthcare quality!!!!???

We spend the most per person on healthcare and we are the only industrialized nation without universal healthcare! If it is such a horrible system than why are we the only ones without it!?

Why should you pay for other's care? Because it is the right thing to do! I believe we are judged as a society by how we treat the least among us. I also believe healthcare is a RIGHT. I have actually had people who identify as Christian say to me,"Why should I have to pay to take care of other people?" Hello! Hyprocitical!

Plus, we already have free services that are paid for with our taxes and private contributions-free library, free police and fire service, free mail delivery and free public education. I guess if you are so against free healthcare for all because you are going to have to pay for other people to access it than you are probably willing to get rid of these free services and institutions as well. Yeah, right. I don't see that happening.

If everyone got more preventative care and sought help for minor ailments before they became seriously ill it would save money on healthcare and we would be a much more productive and happier country.

Even people WITH health insurance are allowed to become sicker or even die because they are being denied care for things as serious as cancer treatment and life saving surgery so the insurance company can make a boat load of money. Isn't health insurance there to help you when you are sick or injured? Can you imagine being forced into bankruptcy or foreclosure because you are trying to pay medical bills not covered by your insurance? Can you imagine watching a loved one die because the insurance company is refusing the treatment their doctor is recommending they receive to save their life!!??

I have been researching and talking my hubbies ear off about it since my first viewing. All of my research has convinced me further that we need universal healthcare now!

I watched it a second time with my hubby. Now he understands my motivation and obsession with this topic. My hubby is not as easily upset and driven to action as I am and after seeing "Sicko" and listening to the other info I have gathered, he is on a mission to talk to anyone who will listen about this issue.

Our family is poor enough that we have free health insurance funded by the state. As any avid follower of this blog knows we have 2 kids on medication and they both have visits to specialists frequently and have had a lot of dental problems. My children would be very sick and we would become homeless trying to pay meds and for insurance through my husband's employer. My husband works for a very small company and that is why the health insurance is so expensive. I don't know what we will do when one day we make a penny over the cutoff for income and have to start paying for health insurance and co pays and deductibles...it makes my heart and head hurt just thinking about it.

Have any of you had problems with being denied care by your insurance company or God forbid, known someone who died as a result of a denial of care?

Do any of you not have health insurance and if so how has this impacted your life and the decisions you make in seeking treatment or not paying bills so you can afford medicine?

The squeeky wheel is demanding the grease

So, I'm sick of making phone calls to the Special Education director in my school district about where the imaginary evaluation report is that was done for my son to get a communication device! No more Mrs. Nice Gal!! I have had it with the phone tag! It's time to start writing letters and documenting the intentional delay.

I tried calling my son's pediatrician for a referral to someone to do an AT eval outside of the school. This guy turned out to be a dead end and was so negative about the subject that I regret talking to him at all. Buddy, it's time to find a new job when all you can do for a desperate parent who is just trying to find a way to make her son's life better is to try and talk her out of pursuing it!

Outside of starting a paper trail and possibly filing a complaint with the DOE we are exploring cheaper and more accessible alternates to the traditional AT devices. My wonderful friend Jenn gave us a kids' speaking dictionary that was her son's that he no longer uses. Peeps, it is a $60 toy that has a voice output!! It is a Franklin Speaking Dictionary and can only be found online. You can type in a word or sentence and hit speak and it talks for you!! The words it has is pretty limited so we are looking at the Collegiate version which is about $100 new on ebay or cheaper if you buy it used. I will definitely let you know if the Collegiate version is worth purchasing once we get it and try using it with Stephen.

Even if we get him a more expensive AT device I worry about how difficult it would be to replace if it broke. At least if we can have him use one of these speaking dictionaries and it craps out it is much more affordable to replace!

Stephen is doing great and I think some of it is because he is using his trampoline A LOT now that it is in his room. We have it right next to his computer and he will listen to whatever he is doing on the computer with his headphones and jump on the trampoline at the same time. His legs are getting quite buff! He has broken his addiction to the Internet and is now into watching movies on his computer and likes to turn on the subtitle feature which I think will help with him learning how to type his needs and wants on a communication device.

**UPDATE**

His wonderful teacher just called me and said that she spoke with the OT and the vice principal in our district that were part of the team that did his AT eval and they are supposed to have something in writing to her by the end of the week!! They are also recommending a voice output device....hopefully not something archaic. I am optimistic but not holding my breath. I will hold off on my letter writing blitz for now....but if they don't follow through by the end of the week, look out!!

Olivia's MRI results looked fine according to her Neuro so we will just follow up with her in six months : ) She has been doing great in school and not had any more issues with the teacher since our little drama at the beginning of the school year. Yay!!

I cut of all my hair. I love it! One less thing to deal with and worry about : )