What Would I Say?

One of the most common questions you hear once you have been around a bit is what would you say to a parent new to the autism club?

You know a lot of people start with hey you're part of the club no one wants to join. I don't like that line. I feel like you are already starting in a bad place. I think anyone new to an autism diagnosis parent or the autistic themselves need more positive message. We need to hear theres nothing wrong with you.

 Lets change that from the club no one wants to get ready for an exciting and amazing journey. You are going to learn more about yourself than you ever thought. You are going to learn that you can take on school districts and win. You can ask for what you or your child need to be successful and most of the time people will just say ok. You're going to find out who your real friends are. Some family members and friends are going to walk away because they don't understand and they are choosing not to. Them walking away has nothing to do with you and everything to do with them. Yes it hurts but in the long run it's for the best. Your real friends will be right by your side no matter what.

You will be bombarded with doom and gloom at first, really I'm not lying. I highly suggest not opening any article well meaning family or friends send you. They will just make your head spin. While you are looking for the facts (everyone does it) take time and visit autistics blogs as well. Read what they have to say. Get many different points of view.

The reality is over time your view will probably change. Once you are past the initial stage where everyone tells you all the bad stuff you get to see all the good. Even reading this blog from the start till now my views have shifted a bit. Nothing too drastic but they have shifted. This is true with a lot of blogs. You can see the shift.

You will find your way. You will find what is right for you. If you choose not to follow some therapies thats fine. You are not a bad parent, you are not a bad person, you are being true to yourself and family. It is more than ok to say I just don't think that is right for me or my child. There is no one size fits all. Everything will be fine and welcome to the cool kids lunch table.

Number one thing to remember you are still you, your child is still your child. Still the same person you were before diagnosis. The diagnosis does not change who you are.

1 Autism and 2 Very Different Kids

http://www.cornwall.gov.uk/Default.aspx?page=27969

In our house we have 2 kids with autism. Roger has a official dx, while Lucy is skirting around the edges with what the doctor said is borderline autism. I'm still not sure what that is. All I know is what they say and what they say is she has many traits of autism but not enough for a official dx.

Many people will look at the two of them and say she doesn't have autism, or why would you say she does. Well because she does. Just because she doesn't act exactly like her brother doesn't mean nope no autism here. Autism is a spectrum disorder and the saying if you meet one child with autism you have met one child rings true here.

We tend to talk about Roger more because well he needs more supports than his sister at this time. When she was 3 Lucy needed more supports. She is the one who had the IEP, who had speech, who needed the most at the time. It's always changing. She also does not have as many dx's.

We know that she does not have the executive functioning disorder that Roger has. Actually her testing said she should be the model for other kids when it comes to executive functions.

 She no longer needs speech but we went through 2 intensive years of it through the school district just to get her to talk. She didn't talk until she was almost 5.

He can read and remember just about anything forever. She forgets a lot and may be dyslexic.

Her little tics yes she has them are not as pronounced as Rogers mainly because she does not have a movement disorder that in all actuality makes his worse.

She has more social skills than her brother but she is still lacking in that department.

She is also a girl and girls present differently.

She has to have everything perfect, everything in it's place and homework must be perfect or she will get upset. 

I'm not writing this to say she is better than or anything like that just that they are very different. I'm sure I can go on and on but I don't want to compare them. They both have their strengths and weaknesses as all people do. There is no look to autism, no set of behaviors that are exact, it is a spectrum. With that people will fall in different areas, it does not mean one is more autistic than the other they just present differently and have different challenges.

More Than a Number

Yes I am talking about the new CDC numbers, and yes I am taking my cue from Diary of A Mom. You see when we started our journey into understanding autism she was one of the first blogs I followed. She has a way of writing what we all feel and wording it better than I ever could.

I agree with her I want no part of the shock and awe. My facebook post yesterday after the news broke was:  
 What do you all think? This says autism and related disorders. I think the numbers are up because of better diagnosis. If you remember back in the day there would have been no dx just institutionalization so we really don't know what the numbers were. I also think more parents know what they are looking for.

There was an article attached to this post and shortly after I posted:
  
Now the CDC's numbers are all over facebook. Here come the alarmist pushing the panic button. I said my piece in a previous post and I will now step out of this one.

For the most part I did. I commented on a couple of pages I follow but for the most part I had to bow out. I don't want to be part of the infighting of why this is. To tell you the truth I DON'T CARE why the numbers are up they are and that's how it is. Fighting over why is not going to change a thing. 

Come on people lets put the boxing gloves down. Lets remember these numbers you are fighting over are not just numbers they are people. Living breathing people who have feelings. Remember everything you say they hear, everything you do they see and I for one will be damned if my kids hear anyone say or see anyone do anything that makes them less than.

Yesterday was the shock and awe which I stayed out of. This morning when I logged on there were pictures with the heading on 1 in 88. That's what we need to see, the people not the number. It's easy to ignore a number or a make a number unimportant but when you see the person you cannot deny in Dr. Temple Grandin's words "Different not Less"

The Faces Of Autism

1 in 88 1in 54 boys one is my boy

 
 

PSA from Rethinking Autism

Autism Awearness Day

Hmmm. Today is Autism Awareness Day. That's all I got people. Maybe I should have some post about it or what not but really Autism is my everyday. Most of you reading this it is your everyday as well. So yep I got nothing. Maybe I'll go to Total Wine they support autism awareness month and we all know mom needs her wine.

White House Response

I received an email response from my letter. This is it in it's entirety.

March 31, 2011

Dear Friend:

Thank you for writing to me about Autism Spectrum Disorders (ASDs). I recognize the profound impact ASDs have on millions of Americans, and I appreciate hearing from you.

For too long, the needs of people with disabilities, including individuals and families living with ASDs, have gone unrecognized and unmet, and remedying this neglect has been important to me throughout my career. This commitment has continued into my Presidency, and my Administration has already increased funding for autism research, screenings, treatment, life-long services, and public awareness.

We must support children and adults living with ASDs. Safe universal screenings are essential for infants, as are re-screenings for children at or before two years -- an age at which some conditions, including ASDs, begin to appear. I will continue to work with Congress, experts, and families to improve Federal and State ASD programs. We remain committed to leveling the playing field for all Americans with disabilities.

Again, thank you for writing. To learn more about this important issue, please visit www.HealthCare.gov or www.WhiteHouse.gov.

Sincerely,

Barack Obama

 

Why We Need Awareness

Tomorrow begins Autism Awareness month. And to my knowledge our own White House has not responded to our letters. You can see a few here.
Some do not think awareness is important. I saw it is, even before my son was diagnosed I would have said the same thing as our kids and many adults are very misunderstood.  In my classes at school alone Autism has been called mental retardation (not true, while the child may have mr autism alone does not cause it), a mental illness (also not true, so because someone thinks differently they are now sick), a personality disorder (also not true), and who knows what else is going to come out by the end of class.
Some Facts:

• More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined

• Autism is the fastest-growing serious developmental disability in the U.S.

• Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade

• Autism receives less than 5% of the research funding of many less prevalent childhood diseases

• Boys are four times more likely than girls to have autism
• Autism is a lifelong condition. 
•  Autism affects all persons regardless of race, religion, economic status or politics.
•  Every 20min a child is diagnosed.

World Autism Awareness Day is to inform the general public about the global health crisis of autism, stress the importance of early diagnosis and early intervention, and to celebrate the unique talents and qualities of individuals with autism. For more information visit http://www.worldautismawarenessday.org

Awareness

I don't know if any of these will help but its worth a try. These are what I have sent to both Dr. Phil and the talk. If we can just get a blurb maybe their stages lit up maybe just maybe we can start the conversation.

Dear Dr. Phil,
I am writing with a simple request, Could you please light your stage up Blue for your April 1 show. April begins Autism Awareness month and April 1 and 2 are world autism day.  I am the mother of a 12 year old with autism and we need more awareness.  Our own White House has refused to light it up blue even though they went pink for breast cancer in October.  We just want to start a conversation for the often misunderstood kids and adults with autism.  You can check out this website http://lightthewhitehouseblue.wordpress.com/ and see the letters people are posting. Thank you for your time.
Pam writer of http://noguilelifeandotherstoriesfromautism.blogspot.com/

To The talk: (facebook post on their wall)
hi ladies, I tried to find a contact us on your website but could not. Not sure if you have gotten wind of this yet but I wanted to share a website with you. The current administration has refused to light the white house blue for autism, though it has been lit pink for breast cancer and the water in the fountain was green for st. paddys day. I digress a little. There is a website that has been starting to implore the white house to light it up blue. To many people do not know what autism is. I myself am the mother of a 12 year old with autism. Please take a moment to read the letter that a woman named Jess wrote. The website is http://lightthewhitehouseblue.wordpress.com/2011/03/16/this-is-my-autism/

If you have not already please visit the website and leave your comments.

http://lightthewhitehouseblue.wordpress.com/

Thank You

Please READ

Please read this link and comment on her post. Lets show the current administration how many people are affected by Autism. Thank you!!!!

http://lightthewhitehouseblue.wordpress.com/2011/03/16/this-is-my-autism/

She puts into words what I could not come up with.

Open Letter

This is my Letter to the White House who reused to light the White House up Blue for Autism Awearness on April 2, 2011.

Dear Mr. President,
Recently I heard that the White house politely said no to lighting up the White House Blue for Autism Awareness.  I wonder why because it has been done before. In the past the White House was lite up pink for breast cancer, and there is talk that it will be blue for prostate cancer.  If you are willing to light the house up for other causes why not Autism Awareness. I just think you can not light up for one cause and then refuse others. If it had never been done then this would not be an issue for so many.
I have heard some talk that is is because the White House does not support Autism Speaks the organization who came up with the idea. What about the kids. 1 in every 100 kids are being diagnosed with Autism and no body knows about it. Kids are being arrested and jailed because no one knows what Autism is or how to deal with it. We need to raise awareness about Autism, what it is and that you may not even know the person has it.
I understand your concerns with the organization if their are any, but this is about kids and adults with Autism. No money is being raised just awareness.  Other Autism organizations support the idea of light it up blue as well. Please just think about the kids. My 12 year old son is one of them.

• While many parents worry about how to handle the friendship drama of kids, I just want mine to be able to make friends.
• While parents worry about paying for college, I wonder if my son will be able to handle it
• While parents look forward to the day with both happiness and sadness of their child moving out, mine may not

 We have to fight for our kids everyday. The insurance companies don't help much, the schools fight back a lot, all we are asking is for some help in raising awareness.


This is still a work in progress but as I look at the date I realize I am running out of time.