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

You Can't Change Him! And Why Does He Have To Change

One of the things I have noticed is everyone and I mean everyone who doesn't have a clue has all kinds of advice on how to change Roger.  I am not trying to change him. The goal of therapies is not to change him it is to help him cope. Why do all these people want him to change? Really I think it is so they are more comfortable. So he should be all stressed out and uncomfortable so you can feel better? I think not.
His sensory issues are not something I can just force out of him. It's not like if we keep doing things that freak him out and make him extremely uncomfortable he will just accept them and change. Actually the opposite will happen you go right ahead and try to force you agenda on him let me know hoe that works. Oh that's right he will just avoid you like the plague and you probably deserve it.
When we are somewhere and he gets overwhelmed yes time to leave. Yes i have to warn him before things change so what is it really that big of a deal?
I understand everyone is well meaning but it's your agenda and he does not I repeat does not have to be like your "normal" kids.  What is normal anyways.
To answer my own question he does not have to change, he is fine just how he is. Yes I will give him skills to cope and to help him function but I will not allow you to push your agenda so you feel better about yourself, he is a child a person not some pet project for you.

Success

Roger can now ride a bike!!! I know some of you understand the exictment over this he is 12 and it was only in the past few months that he even showed an interest in riding and finally we went and bought him a new bike and he is ridding.

Now On Facebook

Hi all,
My blog Now has a facebook page.

http://www.facebook.com/pages/No-Guile-Life-and-Stories-From-Autism/135586703118156#!/pages/No-Guile-Life-and-Stories-From-Autism/135586703118156?v=wall

The Great Book Cleanout

Rogers books had begun to take over the boys room. The other two boys had to step over and move books just to go to bed.  A friend of a friend's bank is collecting books for kids so I took the opportunity to hopefully get some cleaned out. This is much easier said then done as books are one of the things Roger hoards. He has never meet a book he doesn't want to keep. To give you an idea here are a couple of pictures of what we started with:

Before we even started he already was saying no. Finally after convincing him I was not going to throw them away he started. He even agreed to get rid of a whole series. That what most of the books are series once he gets one he has to have the whole series. We were able to get rid of about 20 plus books this time. We also got him an ereader for his birthday so hopefully that will help. I have them boxed and out of the room before he changes his mind. In the end his desk finally looked like this:

Of course he now wants to go to borders with his gift card to buy more. :)

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

New laws

So all of the states are slowly passing laws stating that insurance companies must pay for Autism treatments. That is all well and good but may have age limits that max out at 6 years old. So what are those of us with older kids supposed to do? Does the government think Autism magically disappears at age 6. Have they forgotten it is a life long issue.

While the laws are a step in the right direction I guess it's not enough. Why are we relying on the government to help our kids. I am getting more emails and facebook updates to call the Governor and tell him to support this bill. Really why would I it doesn't help me or many other parents in the state. I don't think it would be a bad thing for it to go back for amendment and take off the age limits. But that's just me.

Birthday

Roger is 12 now. Party went well and then dinner. After dinner we were invited over to someones house but after that day Roger was done. He just wanted to go in his room read and play with his new ereader which he wanted to take to school today but I made him leave it at home.
Yesterday which was his actual birthday we went to his cousins house where we had dinner and they had a nerf war. The amount of planning they put into their war if only they would do that on homework. But yes it was a calmer day for him.
Today is back to school, which still has not done their additional testing and it has been close to the 30 days. Why must it take so long?

Melt Downs

Roger had a speech evaluation the other day. First I went to the wrong clinic I went to our normal clinic and not the new one right across the street. We finally get to the right place and Roger was already a little anxious.

When we first got there we were the only ones in the waiting room and the TV was on playhouse Disney, Which Roger wanted nothing to do with. While he was pacing back and forth one of the nurses saw him and asked " Hey Buddy what do you need?" He actually responded with can you change the channel please? Since he was the only kid in the room they changed it and that calmed him down a bit. 

That would have been the end of it if a person who I am going to call the beltway diva had not come in. I was out of the room filling out paperwork just a few steps away. Anyways she comes in and requests the TV be turned off because she does not allow her child to watch TV. Really because you are the only people in this room. Now you understand the term beltway diva, we have a lot of them around here who think they are superior and their children are better than everyone else but that's a story for another time.

Of course that made Roger start stemming and for him that meant walking in circles around the room nonstop. I was back by this point so I just watched to make sure he was not in anyone's way which there were only two of us so he was good. It only took about 2 min for her to be annoyed by Rogers circles. I didn't say anything to her but thought this is your fault you made them turn the TV off with no warning so there was no time to prep him that it was going to happen. A couple of good things came from this 1) the diva was annoyed 2) the speech pathologist got to see Roger all worked up. Now for the bad it took 20 min to calm him down to be able to do the testing. 

Why the woman didn't ask to wait in a treatment room rather than have it turned off I will never know. I can only assume shes a typical diva who is self entitled and thinks nothing about anyone else and cares only about her and only her wants matter.

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.

Rogers Art work

I went into Rogers room to do a sweep. He has some hoarding tendencies I will find food and wrappers all over his room hidden in cracks and drawers. He has always done this but I never knew why. I still don't know why. The other think he hoards is books, that will be a story in a few days when he has to help me go through hundreds of books he has collected to donate. As I was in there I noticed some new papers on the wall it was his art work so I took some pictures of it:

Self Portrait from school

Another art class project

I took his DS away so he made a wanted poster for me.

naruto

naurto

I'm not sure what this is

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.

Scary

An article that is just scary and sad.
In Va. assault case, anxious parents recognize 'dark side of autism'

short post

Short post today I've been on the road driving to Indy and headed back home another 8 hrs tomorrow. But I heard this song several times in our 12 hr drive today and it just fits every parent I know.

Science Project Update

Just a quick follow up on Rogers science project that he worked so hard on. He got an A. :)

Birthday Party Planning

Planning a birthday party with a kid who gets stuck on things is fun stuff.  He had wanted to go to the movies which was fine but they are not playing the right movie.  Since we went to see Diary of a Wimpy kid last year on his bday he thinks we must see Diary of a Wimpy Kid 2 this birthday. Well it's not out and no other movie will be acceptable. after trying to explain we can go see a different movie I remembered who I was talking to and gave up.

His dad and I went through some ideas bowling (no some of the noise in there umm not good), Swimming ( hes not interested), golf (yes he would go for this but of course it is super expensive) Roger and I finally deiced we would have it at my house. His cousins and a couple of kids from school are invited to come over and play video games and watch movies. Hopefully they show up. 

To be continued after the party........

Video

The Rest of the House

So Roger is not the only kid in this house. We have a total of 4 between husband and I. Here is the easy break down: my three Roger - 11 years (Autism and multiple other dx), Lucy - 6 year (borderline autism), and Porkchop - 4 years NT  (his older cousin J gave him that nickname and it stuck yipiee), We also have husbands son John hes 8 (ADHD). And we can't forget the dog Dax who is the most annoying mini dachshund ever. Can a dog be schizophrenic I think mine is. Not only do we have with autism and ADHD but step family issues as well though we have had a pretty easy time with mixing the kids. Weekends around here are nuts. We have also been running off of one car for the last 6 months. That will soon be over a new to me van coming soon.

We deal with the normal I lost my DS so Porkchop must have taken it. Poor kid gets blamed for all kinds of missing items.  My favorite is my mom or my dad lets me do it. Yeah well you are in my house not theirs. That one doesn't come up very often. Currently Roger's music folder for band is missing. It has to be around somewhere but who knows where. I'm sure it will come up.

Progress

I had a talk with Roger's teacher recently. At the start of the year when ever they would conference about his writing he would have a complete meltdown. Calling himself stupid, trying to hurt himself, and the motion disorder that was a whole new story that would go into overdrive. These conferences are just when the teacher talks to the student one on one about what they wrote, what she liked what needs to be changed, and how they can change it. The last time she conference with him which can be stressful for her as well as she knows the normal reaction, she got the surprise of the year. Even though she had some things he needed to fix his response this last time was OK, no meltdown. She says the only thing that has changed was he is no longer doing pencil and paper writing she allows him to use a computer and has seen where she used to get a sentence out with handwriting she can get 2 whole paragraphs now. While his ideas are on the paper as he thinks them with no order, they are now out of his head and on paper. We can work on the organization later. Baby steps and he has a great teacher who we will miss when he moves on to middle school next year.

We Can't Change This

For all of you out there who think you can just change Roger by making him act how you want him to act let me tell you you are wrong.  He has autism and it is never going to go away. At the same time he is not broken.  We just need to approach him differently.  I have been made fun of a person who has seen his bedroom and see the signs we have up telling him what he needs to do in the morning. And yes when he takes a shower I have to remind him to use soap and wash his hair.  Now because he can tell you what you should do in the shower does not mean he can.  Simple things like showers, cleaning his room, and homework can be very overwhelming for him.  He knows what he needs to do but doesn't know the order so he will just give up and stop. 

I remember sitting in a meeting at the school and being asked is he on any medications? Have you thought of medicating him? What exactly should he be medicated for? Stop trying to change him to fit what you call normal.  A friend has said oh all you have to do is treat him normally and he will adjust to it. You should make him adjust to how the real world works not Rogers world.  Really?!?! I am supposed to stress my child out to make you feel better about being around him. How about you change your thinking and adjust yourself. To this person who claims to know it all you know nothing. You are also the person who thinks the whole world should revolve around you. That everyone should adjust to you and your self centered ways.

The anxiety he deals with daily and the executive function deficits are daily battles for him. Trying to change him will only make it worse.

Now before anyone flips out on me I am not saying we shouldn't help teach him coping strategies to try and lower the anxiety. Or teach him skills such as lists to help him order how to get things done which in itself would lower the anxiety.

I have also heard he doesn't look like anything is wrong with him. So you must look like you have something wrong to get some compassion. Really what does autism look like? Please tell me where you got your medical degree and know all these things.  

To us as a family there is nothing wrong with Roger.  He is him and we wouldn't have him any other way.

IEP and the School

Our meeting with the school went so-so.  All they wanted to do was "beef up" a 504 which is unacceptable as they have not bothered to follow it in the past year.  Now when we tried to get an IEP last year they said yes despite his grades and everything there was something effecting his ability educationally.  Now that I bring back several diagnosis they want to say no those don't exist he doesn't have, are you sure he's not just lazy.  If he has autism how come it took so long to get diagnosed didn't you notice something sooner.  I'm not kidding that was asked I about flew across a table at her. But really didn't I notice something sooner. Wow don't you think that's gone through my head that I missed this for 11 years.

Back to the IEP itself, last year they said even with his grades education was effected but now they are saying it is So now we are stuck to where until he drops below a C average no help.  Hopefully the advocate can help us out just because a child has good grades and such does not mean there are issues in reaching the curriculum. 

We did get them to reopen the IEP and do more testing.  Even his teacher is saying he is not at grade level in communication. So the meeting turned out to be a meeting for a meeting. We will see soon what they have to say next.