Sunday, April 29, 2012

What Makes It Harder To Be Disabled - Media & Money

Ready to get mad with me? Read this article on Autism. I'll wait while you read. The comments are worth a look as well. 

***Sips tea, counts to 500, sips more tea*** Back now?

So what did you think? Do articles like that help or hurt the cause, the people who care give, or the people with the disability?

If you didn't read it, I'll summarize the New York Post article in my own words. (beware of my own side comments because I was just sooooooo pleased with what it said)

~~ Autism is a fad. We want to label everything we don't understand or find bothersome in a false sense of control. Just yesterday, Autism was like really rare and now everyone has it... and more than everyone in Korea has it.

Parents are freaking out and buying into quack doctors and conspiracy theories. They are even refusing to give their kids the life saving shots the government demands all kids to have in their best interests. They are also blaming silly things like environmental toxins for the strange but false rise in numbers.

They article writer seems to think, though doesn't provide any references, that the rise in numbers is mostly due to over diagnosing. It can also be explained by 1. people stare less when an autistic kid is in full meltdown in the video isle of Kmart. 2. The label is now a spectrum to include milder cases 3. Doctors and special education folks know more about it and are using it to cover their backsides more. 4. Aspergers really made the numbers jump when the DSM was changed... 16 years ago. 5. And MOST IMPORTANT is that parents want special education services for their kids because they will be secluded in smaller class sizes and get more attention.

Behavior problems that look like autism, act like autism, and restrict like autism deserve attention but aren't autism. As many as half of the labeled kids are mislabeled if we looked really close. BUT those mislabeled issues still need to be fixed, don't get them wrong, as they are a cry for help.

The Internet and advocacy folks have made awareness higher causing 4 good things and 2 bad.  We'll do this as a game and let you figure out what they think is good: missed cases found, over diagnosis, more and improved care and education, cured cases that were never autistic to begin with, reduced pointing in restaurants, and increased research.

Science isn't being used to research the true numbers in the general population. Autism isn't a neurological disorder or a developmental issue but a psychological one. Glad they had their facts straight, aren't we?

This lovely bit of B.S. was brought to you by one of the over educated, under lived people who rewrote the DSM IV to tighten the classification of Autism, while not leaving a diagnosis for those people and children that would fall off the new autism that isn't a spectrum. ~~

How Ya feelin'? Need a minute? I'll wait. ***sips tea***

Now go read this article about a full range of issues that face a woman trying to get help for her illness. She has faced misdiagnosis, money issues, lack of available services and testing, disbelief in the illness being "real," the ever famous diagnosis of depression (been there myself which is just depressing), and it all comes down to money (and lack of it.)

Media: The media does what it wants to get it's own agenda passed. Sometimes it is to sell a story to the public in a bigger better way then the other folks. Sometimes they lie, I mean bend the truth, to sell the story to suit their own leans. And other times they are catering to a certain cause or purpose. And sometimes they are bought.

It's their right to report as they see it but the real problem is that people read or watch it and take it at face value. My mother in law reading the above mentioned article wouldn't weigh what she knows of my children against the "facts" in the article. She would just take the world of the writer because it supports her own narrow knowledge and views. She would, in fact, love the article. There isn't a ready made checks and balance of the facts, so misinformation just leads to increased intolerance and false knowledge.

The media is encouraging people to be mislead, misinformed, and in some cases down right wrong in their facts.

Here is another autism article that is about the proposed changes to the DSM-5 that will be released in May. I won't summarize it (I know you were so looking forward to it) But I will tell you why it is better. The writer says this is what is, this is what changes are coming, here is my sources, these are my thoughts and why. There are not any major false groupings but are traceable facts to support what she is saying. Yes, idiot people could still take her just at her word but she gives a thinking person the tools to see why she is to be trusted or not. And it is balanced for the most part.

Money: Good stuff first:  Here is a link to some resources that may help special needs caregivers get an iPad for their patient. No guarantees and remember there is a lot of need but not so much resources available.

I have several issues with things tied to both money and health care (and well being of patients). I don't think prices on medication, services, or supplies related to health care and the quality of life for a patient, should be so high as to be unattainable. I don't think Doctors should (have to) rule out or in something just to get the needed coverage. I think charities that ask for money should be helping the everyday, average patient on a noticeable level. I don't think it should be so hard for the average family to get the things their loved one needs. Most families have no idea were to start and how to stand up for the items they need.

There is more but I see that my tea is empty.

I really don't have a point other than that you should think before taking the media as truth and that we really need to rethink how we treat our young disabled folks. If they are denied the help they need, they will always need help. And seperate "BIG" business from "good" health care.

Now for fun go read this article and watch the videos. Trust me the article is well written and the story worth a smile... and the videos will make you laugh.

Saturday, April 28, 2012

Well Being Through Personal Auditing, Spiritual Balance, and God

Standard Disclaimer: I don't care what faith you practice. If it brings you what you need to live a moral, secure, and happy life, then it is my belief that it is perfect. I do not think anyone can tell anyone else to follow something that isn't in their heart. Please know that your sense of peace makes the world better and I celebrate that. Also Faith and Religion can be used in place of each other in a lot of my usage of them. Now on with the show, I mean, blog.

I talk a lot in my blog about the troubles I see, that touch my life, and ways I see to help them. Rarely do I touch on the thing that really gets me through almost anything. I avoid it because people get uncomfortable talking about faiths and religions that are different from their own. Some folks even walk away from people they called friends because of that difference. I hope we have become friends enough to move past all that.

Personally: I follow a natural faith. I have faith in the good things in life. I have faith in my fellow humans (though that one can be tough at times) I have faith in certain natural cycles and events. I work hard to have faith in Self.

The thing that gets me through the most is a balance. I balance every bad with a good. "His leg hurt him, but he got up anyway" and "The electric went out so the kids and I had a picnic outside" and "His life maybe over but I have some great memories to hold on to."

To every good there may be a bad but it is what you do with it that counts. Learn, grow, and try to do the best you can with what you have and life will work out. You can't wait for God, Magic, or the Government to fix or save you. You must feel, deal, think, plan, and act. LIVE the best life you can and help others do the same.

So how do I reach the calm in the storm? How do I get past the panic, the pain the what every life is up to now? I accept that what is, is. I deal with what ever feelings I feel. I allow myself to feel them, put them in check, and move on. I think about how I can best deal with it and make it through. I plan my next step while remembering that things change. I smile and laugh and hang out with people who understand. I act on my plan. I get through.

God (in whatever way you know him): A higher power works in your life because of your belief  in him (them) and the power they give to you can not be used if you aren't involved as well. Church or Service is a great way to connect and join with others.

Prayer works because you are letting go of things and allowing life or God to do whatever comes next. You are letting your faith work through the issue. What a wonderful way to cleanse your soul! Your faith is what makes your faith work.

BUT you still need to act. No matter what you use to get through, you have to do your part to make it work. You can pray all day long to get that job that you need but if you show up late for the interview, you most likely won't get the job.

God is not to blame for the actions or inactions of his children and as long as they remember that, their lives will honor him. Living the best life a father would wish for his children is the greatest gift the child could give the father: Love each other, live honorably, follow the moral teachings while using honest thought to guide your actions.

Counseling: Talking it out with someone can help some folks. It may give them the tools they need to do what they need to get through. I never took comfort in it because of a bad personal experience but I know for others it can be life changing.

Finding the person that matches you, that knows the way you need to be treated but that doesn't encourage you to give in to the bad is the most important step to making it work. Not everyone benefits from the same treatment style.

The second most important thing is your own willingness to work it out. You HAVE to be active and ready to change, deal and be better. No amount of counseling will work (or any other kind of treatment -health, weight, ect) if you don't want it to work or don't do the work it takes.

(Personal) Auditing: There is a practice called Auditing that is a lot like counseling or talking with a life coach. It started as a practice among Scientologists though it is my understanding that it has branched out to some other Practices. I was recently introduced to the concept by a friend. I like it enough to include it here.  If you are interested in learning more, there is a blog to check out here.

(As I understand it) Auditing is an activity where a person trained in auditing listens and gives auditing commands to a subject. I take this to be almost like a teacher and student or counselor and patient relationship. There are specific steps to be followed with the final goal of freedom from inner (personal) barriers that free their inner abilities.

As I was researching, there is one testimonial that I really liked. It speaks of balance (one of my favorite things) and how if you put out bad, bad comes back but also that you can save suffering (your own and that of others) just by using your personal power for good. It said that by doing good you take in good. This inner power helps you feel more energized, more creative, more free.

My Thoughts: All of these paths, faiths, tools have a couple of things in common. YOU are going to get the best results when you do something about it in the everyday world. You get out what you put in. You will have bad times in your life but if you deal with them, you can move on.

People are an important part of your world. They will help you and you can help them. We are all in this together. Treat each other with love and respect.


You should have faith... in some one, some thing, in yourself.

You are not alone.

Know Peace, Love, and quiet joy.

If you are interested in Auditing then you can contact my trusted and loved friend at :

Make sure you tell her that you found her through me. Tell her Tammy sent you.

Monday, April 23, 2012

Bully or Hero

Who will you be? The bully or the hero?
I want to share something I found in my travels. Please check out:

Autism Spectrum Disorder, through my eyes.

The following is from Marian F.............. ♥

"I'm just an ordinary everyday Mammy from Ireland and my son has ADHD but has a lot of autistic tendencies.....he appears to be normal in the physical sense but he finds life and school very hard. He was recently the target of a group of bullies but one person in his class spoke up for him......I wrote this poem from my sons heart. Only a mother knows their childs heart and what they feel:

I wrote this for my son Jack who has recently been bullied but thanks to one amazing young lad in his class who had the courage to stand up to the bullies he has given Jack his life back:

One little voice
Has changed my life
One little voice
Has given me a choice
Shakespeare says
Neither a borrower nor a lender be
I say
Neither be a bully nor bullied be
I’m just a little boy
Why can’t you see
It’s not my fault
I have ADHD
You tease and taunt
I grin and bear
While I cry inside
You pull my hair
I only want to fit in
I want to be accepted
But all you do is leave me
Feeling useless and dejected
One little voice
Has made me smile not mope
He stood up for me
And gave me back some hope
That one little voice
A classmate and a friend
I will always be grateful Thomas
Until the very end

I have since set up a group page called One Voice (on Facebook) but I have left the page to my sons hero Thomas ORowe and another classmate to run the page. They are 12 year old boys with so much wisdom they astound me.....I don't expect you to go onto the page but it's a place where adults and children with problems can talk to one another xxx"

Sunday, April 22, 2012

Life Quality Based On Money?

"Sorry for the delay in responding, we’ve had email access issues.
CSHCS will not cover an ACD.  We only cover medical care and treatment. I would contact local agencies in your area, such as Rotary, Lions, Knights of Columbus, etc.  You could also contact Apple to see if they have a program that would assist you"

I received the above response to my request for help getting my son either an ACD (Assistance Communication Device) or an iPad to help him communicate from his insurance company. OK, I wasn't really surprised but I was still disappointed and it got me thinking. And when I get to thinking you know that I have to type it out. 

As a person there is a simple plan to life. You are a child. You learn as you grow. You become a student. You get a job. You live life as best as you can. You fall in love if you are lucky. You get married (or not.) You have children (or not.) You grow older. 

Along the way, life happens. You may be healthy, wealthy, and wise -or not. You may face this mountain and over come. There are elections, wars, peace time marches, stars that rise and fall, books to read, and job promotions to work for. 

BUT when you are injured, sick or facing a disability who gets to decide on your life and its quality? And if you are a child who has that power? And if you are a poor child with a disability what will your future hold and in who's hands does it fall? 

Here's My Thinking: America is full of programs that are said to help people that are in need. Some American's like that there are safety nets and others think we coddle people too much. I am a balance kind of person. I think we need to help others that want to help themselves and I realize that there are some who abuse the system. I also KNOW that there are some people who are stuck because there are few choices for them. Oh, and those safety nets? The have huge holes in them.

But when it comes to disabled kids, I have a very logical train of thought that seems to be lost on many. It is very, very, very simple math: 

Disabled child + Early interventions + medical, therapeutic, and educational needs met = Highest Possible Function + Ability to work = Less Need for services as an adult = Less cost for Tax Payers

 I don't understand why insurance companies, both private and public, would put up a fuss about paying for services and supplies that may bring the child (or anyone, for that matter) to a higher functioning place.

 If you give a child a voice, then they can communicate, and we can really see what's going on inside their brain. Give a child the brace they need to walk and see how far they run. Why do we have to fight so hard for those little things? Because of money.

Because someone said that a voice for a child should cost thousands of dollars. (see used examples here) Is it the companies, the insurance folks, or what? I don't know or care. My son's braces that will be outgrown in less then a year cost over $2,000. I had to fight to get them. The doctor had to fight to get them. This isn't a luxury item we want but one to help him walk. I'm confused about the priorities of .... everyone... who thinks children shouldn't have that right.

We are under the constant fight to have another 3 months of therapy. I really don't get that one. If a child is becoming a better functioning human than that's good right???? Therapy is a great tool when used consistently.

Money? Is it really all about money? Because if it is then do the math again. Higher function means the child grows into a higher function adult that can do more for themselves and may not need as much or any help from programs that cost other people money. Simple.

If you don't help children when they are young then you risk having to help them in a higher fashion for all of their lives.They may not find work or will always need extra medical care because they didn't get the care as a child. They may cost society more because they end up in jail, homeless shelters, or mental health wards.

Of course there are those who think that if someone is damaged then that falls on their family or better yet they shouldn't have a life at all but I won't waste my keystrokes on them.

Quality life and money? Quality of life is not just "things" but about being able to be the best person that a person can be. It is being as high function as possible, being able to interact with others, it is about being able to find enjoyment in existing. 

Money shouldn't be a qualifying factor on who should be able to reach for the stars but it often is. Money can mean better schooling or none at all. It means we eat or not. It means proper care or not. 

Bottom Line: I want the best for my children. I don't want them to just survive but to reach for the stars with a smile. I don't want our bank account to be the reason they are stuck here on Earth or ... under it. Rowan should have his voice and I don't understand why an insurance company wouldn't want him to have it if it means he can someday stand on his own.

Thoughts? Make sure you read through the comments and respond as you see fit. There is sure to be interesting things there.

Update: An interesting Right view of Lyme Disease and the medical hurdles faced due to money issues can be found here.

Tuesday, April 17, 2012

I Hate...

I hate. A lot. I know I shouldn't. I understand why. I don't think it's right but I'm not sure it's wrong. I think it just is. I'm sure there is a cure or treatment or some wisdom that is meant to make it all better but if I covered my hate would I really be doing the right thing?

I hate Autism. I hate Crohn's. I hate Poverty. I hate Child Abuse. I hate Depression. I hate Cancer. I hate more then I could ever list here but all are things I can't control, can't fix, or feel shouldn't be an issue for an advanced race.

I read recently that we shouldn't use the word Hate to describe how we feel about Autism. It may make someone that deals with Autism feel bad about that part of themselves. Maybe. But I don't hate my child with Autism. I hate the endless therapies that don't always work. I hate the pain that I know my child feels but can't express. I hate that tests. I absolutely despise the on going battles with insurances to get the basic needs of my child met.

My child even hates. My child hates when other kids don't understand. My child hates the pain and tests and putting life on hold to deal with what ever emergency has popped up. My child hates allergies that make chocolate bunnies off limits.

By hating these parts of the whole, we are able to deal with it, feel it toward the label and not the people we have to deal with. If we hate Autism and not the therapist then we can treat them with respect and kindness. By hating the label, we can deal with out feeling and accept the road we are forced to walk. By hating the condition, we can work to fix it, we can love the people who live with it, we are free to accept what is.

I think I hate Ignorance the most. People are ignorant on purpose. They are the folks who could know better, have been taught better, who should be better but choose to stick to their narrow self centered view of life or situations without caring who it hurts.

Not knowing or understanding because you don't know or understand is fine. No one knows everything or understands it all. Being aware and trying to learn is great. When I say Ignorant, I mean those people who have had the lessons, who should understand at least some, who just go on with a closed mind and an open mouth. Judgmental, self serving, know not half of what they think they do types of people are why Hate is hard to over come and deal with. They make every condition harder to accept.

So am I a bad person for accepting the fact that I can Hate? I don't think so. I think it is more about what I do with that hate. I work hard not to hate the person dealing with what I hate. I work hard to raise awareness, look for answers and make what I hate into something less while making People more. Improve the people and their quality of life and the thing you hate can become less of an issue. By fighting for the good parts to rise up and be MORE, then the bad becomes less.

Hate can be destructive, an evil force... or you can use hate in a positive way to do things for the greater good.

May you find a way to find your balance between hate and love. Accept your hate and use it to become more loving. There is a simple truth in that.