YAY

We went to the eligibility meeting yesterday at Roger's school and he is eligible.  Now we just have to get together and write his IEP.  Good thing I went to an IEP writing seminar last month just so I have an idea of what I want in and how it should be written (detailed vs vague) Tomorrow's fun will be the dentist.

Alphasmart Can Go to You Know Where!!!

Ahhh the Alphasmart, Neo, or whatever the school wants to call it. Hailed as the answer to your writing prayers. Is handwriting is stressful for you? Do people including yourself have a hard time reading your writing? Organization problems in writing? Here you get this outdated piece of equipment it will fix everything. Yeah sure if your goal is to increase frustration. Have you ever tried to write a entire English paper when you can only see five lines at a time. Try it? It is not easy at all.

Ask your school to not only see one but let you use it.

How about if the teacher is using a worksheet. She has it uploaded on Google docs. You know technology is awesome and teachers can do things like this. OK now get out the Alphasmart and get to the worksheet. Wait what? It's not possible. You can't pull up a worksheet on the Aphasmart? So what do you do? option one use the Alphasmart and type print and attach too worksheet. Sure that is doable. Wait you have technology that you can pull up the worksheet and type right on it and print it out as a whole. Awesome lets use that. Oh wait sorry school says no do it the hard way.

While this technology was great when it came out and probably is still a great tool in elementary school. Alphasmart and high school. Yeah not a good mix. There have been so many new advances and yet the schools stick with archaic devices. Think about it. What if I came into your house and took away your high speed internet and gave you dial up? Or if I took your laptop and gave you one of the first computers. That's what the schools are doing. They are trying to help but they are stuck in the dark ages.

Now in our case I have a solution. It's called a iPad. You can do so much more with the iPad than the Alphasmart. Here let me put them side by side for you.

	Type	Access Google Docs	Internet	Print	Portable	See Whole Document	Writing Organization Help	Use at Home and School
AlphaSmart	X	limited		X	X
iPad	X	X	X	X	X	X	X	X

We got a iPad to use as a tool. It is not a toy. We have Inspiration (link here) on our devices. It really helps with visually mapping out a writing project. The Alphasmart not so much. How about seeing the whole paper without having to print it. Ipad yes, Alphasmart nope you have to print and then go back five lines at a time to make corrections. How about getting into Google docs. iPad full access Alphasmart limited. You can save documents but you cannot pull down worksheets etc.  iPad has a calendar on it, even has school planner apps. I do believe the Alphasmart has something on it that can be used as a planner but its a bit more complicated. Bonus when kid walks in the door the iPad automatically syncs with mine. I know what homework needs to be done, what long term assignments are due. No wait I would know but I don't.

Why do I not know because as of yet the school will not allow the iPad in. I have a meeting later this week to get it in the school. Most of the honors teachers have already allowed all students to bring in iPads or laptops to be used in the classroom. They know you cannot write a honors paper on a Alphasmart. Well you could but it will take much longer and cause more frustration than just letting the student use a laptop or iPad. 

I only touched on iPad uses in the classroom for classwork. Lets add into it a child who also needs a communicative device. Yep Ipad does it. So instead of the district buying two devices one for communication and one for writing it can be all in one. I don't know the specs on the communicative devices the schools use because we don't use them. The only time our iPad was used as communicative was in band camp. There were a group of kids from Japan who did not speak English and my kid wanted to talk to them so he downloaded a app that translated. 

Here are the reasons in the past I have been told no:

1. The school is not set up for newer technology. Ok this was valid but wait during the summer the schools updated all their systems with the purpose of allowing students to bring their own technology if they choose.
2. The ipad wont be used to access the curriculum so it cannot be used. Yeah see everything above and tell me it does not help access the curriculum.
3. The iPad costs to much. I'm not asking you to buy one. We already have it.
4. They have the Alphasmart there. See above again and most schools will not allow the Alphasmart to go between school and home. So great you electronically made a schedule on the Alphasmart yet you can't access it at home.

Those are just a few excuses I have heard. I am pretty sure the meeting this week will go well. I already have the majority of the teachers on board. They already know that yes what I am bringing to the table is better than what they are. Hopefully the team will see it the same way and we get the use of the iPad in place of the Alphasmart added to our current IEP. Maybe if we can slowly get the educators to see the endless possibilities of current technology we can get them to start implementing more and more of them.

(I have not been asked or given any device, apps, or compensation for review purposes. These are my opinions and things I personally own and use)

Wandering Part 1 My Story

I am going to write this in two parts. Part one is my personal story of having a child who wanders. Part two will be information about what can be done to help curb wandering though nothing is foolproof.

Wandering it can happen to anyone. That's why I don't understand when a child wanders and just happens to be autistic one of the first questions NT parents ask is where were the parents? Like it could never happen to them, well I got news for you it can. I told the story of losing Roger here. He used to wander away in stores but now that he is older he tells me where he is going and yes he has a cell phone attached to him.

My wanderer is my "normal" kid. Really Porkchop is known for just wandering off. Something or someone gets his attention and he is off.Have I mentioned he's a hemophiliac too. So yeah first thought is the kid is bleeding somewhere. The first time he was three or four. I had gone to the bathroom (thats all it takes) and he was sleeping on the couch. Well he woke up and I was not there. He assumed I went to the bus stop to get his brother and sister. Out the door he went to walk to the bus stop which was half a block away.

I wasn't there of course so he kept walking. So while he is out on his walk. I am tearing the house apart looking for him. At first I thought he was hiding he likes to do that. He is also the worst hide and seeker ever he can't stop laughing. I called my husband and he said keep looking, I called him back and said he's not in the house, not in the yard, he is nowhere. So he left work and flew home. As he was driving down the street he saw one of the other moms who just happened to work from home walking down the street with him.

She told us that he had come to her house two blocks away and down a busy street. I mean people flew down our street like it was a highway. He crossed it. Apparently one of the elderly ladies was going for a walk  saw him and just followed him for a while to make sure he didn't get hurt. He took her to the other moms house and said my friend lives here. The lady almost didn't answer her door but decided to see who was there and saw porkchop with some old lady. The other mom tried to get him in her car to bring him home but he refused to get in the car so she walked him home.  That was a very long hour for all of us. The police were called but by the time they got there he was back.

That's not the only time he has done it. In the house we currently live in he has wandered off twice in the past year. The first time was right after we moved in and he saw some kids playing down the street so he went to play he just didn't bother to tell anyone where he was going just hopped on his bike and off he went. The other time he went to a friends house. I knew where he was going but the friend couldn't play and on the way home another kid caught his attention so he went there instead of home.

We have a creek in my yard so yes when one kid goes missing it's the first place I check. Does my child wandering off make me a bad parent, no. No one can stay on their kid every second of everyday and all it takes is half a second and they are gone. It can happen to any parent autism or not.

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.

Shopping: No Guile Style

Without reading can you tell the difference?

One thing everyone in this house can agree on is no one likes shopping which leaves it to me.  We have a bunch of rules we follow mostly unconscionably about what is bought.  I noticed this the other day when I was buying shampoo and conditioner for the kids. I went to pick up the coconut because well the smell is pretty weak, but had to put it back.  The reason the shampoo and conditioner are almost the same exact color.  Shampoo must be brighter than conditioner in this house so they know which to use first.  We tried the write numbers on the bottles but they always wash off. Yes even with a sharpie.  So we found bright shampoo works.  I have been doing this for who knows how long and never really thought about what I was doing until the other day.  It all started because of the executive functioning issues Roger would get in the shower but get all confused on what to do next, so we had to find a solution rather than me standing outside the door giving directions.  Sure they could read the bottle but that would be a added step and the less steps the better. They use bar soap for body wash nothing in a bottle.

Now look. Shampoo is brighter than conditioner no reading required.

Body Wash, This is a NO NO, looks too much like a shampoo bottle and even the colors are close.

Bar soap perfect, no matter the shape or color you know what it is for.

Easy to handle laundry soap.

This got me to thinking what other rules do we follow.  Laundry soap always liquid. I hate powdered it smells and it gets everywhere.  We have recently gone to the single use pod things to help the kids be able to do laundry without using half a bottle.  Fabric softener only Snuggle, the others smell to strong.  The boys will only use axe deodorant. The swear by it.  They will not use the body wash or spray because it smells to strong.  I'm not going to fight that logic.  Mom's stuff only Tampax or Always, why because they are the only ones on the market with zero latex.

Now most teenagers want to shop at Abercrombie and Finch, Aeropostale  Gap, you know all the high end stores not mine.  He says its to noisy and smells bad in the stores.  He also hates the clothes. Says they fit strange and he doesn't like how they feel. Another thing I will not fight Target it is then.  Second hand jeans are the best someone else has already worn them in for you.







There are many others certain things are only bought at certain stores because one store brand is better than another. Some brands are bought over another because of smell, look, taste, or feel.  Seriously there is a such thing as a too cheesy cheese stick.  Even the dog has rules.  He will only eat one brand of dog food and only likes one type of treat.

http://www.migy.com/2010/04/ground-rules.html

I know we are not the only ones what are some of the rules you follow on products you buy? If you think you don't think about I bet you will be as surprised as I was when you really think about your shopping habits.

Step Away From Autism

This comes from a discussion with autism bloggers. Yes we are real people behind our pages.  The group is made up of parents and autistics.  The topic came up of do you sometimes just get sick of autism.  Not the autism itself just that all attention seems to be on a diagnosis rather than  a person.

Overall response yep.  As I said before we are real people.  We may write about about autism but part of real life is autism is not always center stage.  Sometimes we don't want to talk about autism, sometimes we want to talk about the most recent game, a book we read, what we are doing at work, there is more to us than just being autistic or being a autism parent.  Sometimes you have to step away from the autism and focus on life. 

http://quoteshelp.com/life-quotes/

Autism is the only dx I can think of that makes people stop living. It's not the autism that dose it, it is the person typically parents that fall into this fear trap.  If I had just stopped our lives and avoided doing things and going places because I feared a meltdown how many things would we have missed.  How many parties, shows, movies, sports would have been missed because of a fear.  I'm not saying meltdowns don't happen but I'm not going to avoid life because one might happen.

http://quoteshelp.com/life-quotes/

Let me put this another way.  I also have a child who is a hemophiliac.  If I refused to let him play outside, ride a bike, really just be a kid because he might get cut or scraped what kind of life would he have? A pretty boring one.  So I don't.  A lot like meltdowns we live life and if he happens to get cut or scraped I'll deal with it then.  Sometimes we end up in the ER but that's going to happen time to time its part of being a hemophiliac.

Then there is the whole title thing.  Once you have a dx you become autistic or a autism parent.  The person you were before the dx is still there but it seems like people can't see that person anymore. Everyone wants to over anaylaze what you do.  There must be a reason why?  Yes there is a reason because we like it. You become this walking information booth.  Where conversations may have been about your recent trip before now they are about autism.  Don't get me wrong we love that you want to ask questions and learn, but dose it have to be every conversation. 



http://www.boolumaster.com

Roger says "I'm still the same person as before.  Now we know why I sometimes do things that seem strange, why I get stuck on things, and why I sometimes just don't get it.  Not everything I'm interested in has to do with me being autistic.  Plenty of people without autism like to read and play with Lego's."  What he says is true.  Before the dx his likes were just that likes, now everyone wants to analyze and find some autism connection to his fascination with Dr. Who.  Really people he just like the show.  He doesn't over analyze your obsession with the Kardashians it's just a stupid show you watch. 

Overall what I am saying is step away from the autism dx and see the person.  Ask them about the book they read?  Ask how work is going?  Find out about them as a person.  We will never stop advocating and fighting for what we or our children need, but not everything is a fight.  Yes autism is a integral part of my children but it is not all of them.  Sometimes autism needs to be center stage, but not always.  Live life, have fun, let your kids be kids.  They may just surprise you.  I think Brad Paisley's song says it best "yes I have a hard life but in someways everybody dose."

No Guile & Mama's Turn Go to the Farm

Today we went to the farm. While yes it was for the kids I got to hang out with Mama's Turn Now. You should really check out her blog. Her son Jay and Roger hit it off. They were talking video game talk and found out they like the same games and the same shows Dr. Who anyone? Being we were there with other autism families well they didn't seem so weird, more like the couple of NT families were the weird ones. :) I will just tell you about it in pictures. (since I finally ahve a computer again and I can do that again) Overall everyone had a great time, and i found out I'm not the only one that has ever said no you cannot read today.

This is us.

Hay Ride

The Maze. They had a bamboo maze this is where Jay and Roger found bamboo sticks.

The Bridge this is where one of the boys lost his bamboo stick sword fighting. Normal response to what was the lesson "don't sword fight on a bridge you might lose your sword. The response we got don't reenact scense from Indiana Jones. Umm OK

They had big and fast slides here. I went on one it was kind of scary.

One of the many cutouts there, this one is Ice Cream. Mama's turn said this would be the only time she would be vaniella because theres nothing vaniella about them. Grace's response were more like rocky road.

The Boys yes they are all talking about some game or show who knows.

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

 
 

My Response to Germain's Comments

While Germain is not the only one to have made some not so nice comments his was the worst. This is my response. If you want to write a letter yourself email  film@ap.org  To see the stories click here, here, and here

 

To Whom It May Concern,

It saddens me to have to write an email like this. As the mother of an autistic child I have enough battles on my hand, and certainly do not need to take on any more. But I recently read a comment made by one of your AP writers that I just can not let go. When an established writer like Mr. David Germain makes a comment in a very public review that has been picked up and ran all over the word, a review that is both offensive and just plain disturbing to the entire Autistic Community, something has to be done. So I am writing to you and I ask, no I beg, for the sake of the estimated 3 million individuals in the U.S. and tens of millions worldwide who have autism a retraction and apology from Mr. Germain.

What exactly is it that we, as a community, find offensive? This is the statement we are referring to which appeared in his recent review of the movie Extremely LOUD Incredibly CLOSE.

“Newcomer Thomas Horn, the 13-year-old star who was cast after the filmmakers saw him on a “Jeopardy!” kids episode, is a mixed bag, holding his own among the adult actors but, through no fault of his own, forced to behave with excessive shrillness much of the time.

That’s because his character, Oskar Schell, may or may not have Asperger’s syndrome, a mild form of autism (his medical tests, we’re told, were inconclusive). You make allowances in life for people you encounter with autism, but spending two hours with a fictional character possessing autistic qualities can be grating.“

Perhaps Germain makes “allowances” for the autism people in his life, but the autism community refuses to do the same about his ignorant and extremely insensitive comment. I am sure he would not even think about writing that he makes “allowances” about a movie character’s race or sexual orientation. The public outrage over that type of comment would be tremendous.

I understand the response as of now has been "is a veteran movie reviewer for the AP, Mr. Germain is expected to mince no words in expressing his opinion about the various elements of a motion picture and sometimes those words can seem overly harsh. But he in no way intended to be insensitive to the real-life challenges facing autistic children and their parents."  Steve Loeper

We understand that this is based on a fictional character but I know for a fact had the issue at stake been the characters race, sex, orientation, or any visible disability the paper would have retracted the article and provide the apology. Just because Mr. Germain is a seasoned writer does not mean he throws all compassion out and watch his wording. there are many other ways the statement could have been made without coming off as offensive. What I ask is what point was he trying to make by saying "you make allowances in life for people with autism" What did this statement have to do with the film other than being a bigoted point of view.

The autism community may not be as big as others, but none the less, we too our outraged and offended by this.

Every day I wake up and hope that TODAY, Today is the day that the world will see my boy for who he is and not just a label. Today is the day that he will be accepted, understood or at least tolerated. With reviews and comments like the ones that Mr. Germain made lingering out there, well that day is further away. Please, I ask that you retract this review and demand that Mr. Germaine make amends for his complete lack of compassion and respect. My son and all the others out there deserve it.

Sincerely yours,

*special thanks to Mama's turn now for putting into words what we wanted to say and allowing us to use her letter and add to it if we chose to* Visit her http://www.blog.mamasturnnow.com/

1 year

 

At this time last year I was sitting in the neuropsychologist office with my husband and my sons father getting the results from his testing. So today it has officially been a year that we have had a diagnosis. Did the diagnosis really change anything yes and no. For the most part everything is the same we just have a word for it. I have learned a lot in the past year.

Roger still is the same child as before, that will never change. We may have only had a diagnosis for a year but we have lived with autism for eleven years. What has changed is we know what sort of supports he needs in school. Before he was a frustrated C student, today he is on honor roll. Never let Autism make you forget your child's potential. Autism does not mean "Can't" 

The worst thing we could have done would have been to start treating him differently. He is expected to do chores, homework, and be respectful to others. This is not an excuse to have everyone else do everything for him. He can do it so he will. There is something every child can do even if it is a simple task like helping wipe a table, find what they CAN do rather than CAN'T. A little bit of independence goes a long way to making a person feel worthwhile and needed.

Autism is not going to magically go away on his 18th birthday. Roger will become a adult with autism and just like every child needs to know what is expected of him as an adult. No adult will get away with throwing a tantrum in a store more than likely they will be put in jail. SO what are you to do? You do your best to teach proper behavior and control. It will not happen overnight and it will never be perfect but take them out. The best therapy in the world is not in a office its in the world.

We have had friends come and go. Hey if you don't want to be around because the word autism scares you ok I didn't want you around anyways. There are family members that just don't get it. They think we can beat it out of him. Nope sorry not going to work, besides I don't want to go to jail.

I have meet a lot of people in the past year. Some to me take everything to seriously. When everything offends you your not fun to be around. Not every comment is made to hurt you or your loved ones. Take it with a grain of salt and when the big offenses come along people will listen. There are others who can laugh at themselves I mean really you have too.

I have also learned to make my decisions based on Rogers needs. ABA was pushed at first but when we really looked at it, we needed something else. Don't get me wrong ABA is great and works well for some but as with everything it does not work for all. While I have never gone the biomedical route I don't think it is appropriate for us but I am not going to browbeat someone who has chosen that path.

The most important thing we have learned is to listen to Roger he will show us what he needs.

Can You Read People?

Really look at this chart. Would you be able to read emotions just off this?

Reading people is one of the things that Roger will openly tell people that he can not do.  He can't tell you if someone is mad, happy, sad, scared just by looking at them.  He has to be told. Well that is usually the case. If he is around people a lot he can sometimes figure out what is going on but not always.
His brothers and sisters start to get annoyed with him he doesn't realize they are getting annoyed until they start screaming. Then he backs off. This weekend my husband had a bad week so he wasn't in the best of moods. The other kids picked up on it right away not Roger. Not until someone told him did he get it.
A case where he has noticed would be with me. I have a back injury that causes pain and sometimes it can get pretty bad. Roger has figured out that if I am quiet and moving slow I hurt.Now he still has to ask but hey at least he is picking some of it up. He has even told his stepbrother if shes moving that slow it hurts stay away.
I think this may be where some of the misconceptions about feelings and Autism come from.  Just because someone cannot tell by looking at someone how they are feeling that does not mean that they themselves do not feel. Or that they do not have empathy. Look at the charts they give kids to teach feelings they are always over exaggerated faces that no one has in real life. Once Roger is told how someone is feeling he usually understands. He does have some trouble figuring out his own feelings but just because he can't always put a name to them doesn't mean he feels nothing. I leave you with a clip from Parenthood where Amber is trying to teach Max how to apologize.

Kate Middleton???

Neurotypical Mom has come up with an idea. Remember back in Princess Diana's day and how she had her causes well Kate Middelton is looking for one to.
Now I'm not suggesting she jump on board to the cause and cure train but why not the acceptance one. If you want to know how to send Kate a letter yourself visit Neurotypical Mom and find out how. She even has a template for you to use.

From: Neurotypical Mom's  Facebook

Dear all - great news! The National Autistic Society in the UK sent me a note and said that they were 'interested to see the letter to Kate Middleton and hope we get a positive result'! The email went on to say that 'they were sending a message to their press team so that they are aware of this effort'!! Congrats to all, let's keep it up!

Looking Back

I was looking back at some of my blog postings and now some of it I would change.  One of my first posts d-day first off I would change the name of that one it seems so dreadful and depressing. I associate d-day with a war and this is not a war. I had also said I thought I wanted to be wrong about believing he had autism but in reality is was such a relief to be right and know what was going on.  In all honesty it has been great for Roger the diagnosis helped him feel better about himself that he wasn't just some weird kid there was a reason for it.  The best day of the past year has been when he has said I have autism and thats not a bad thing just means I think differently.
I still could care less what causes it or for a cure I would not change my child meltdowns and all. The treatments we do get for him are not an attempt to rid him of autism but rather to help with his communication and executive functioning. Overall I still want him to be a kid. I don't want to spend a million hours chasing down crazy science and the result of my child spending his whole childhood in a doctors office.  Some of the best therapy has been just being in the real world. I am not a bad parent for wanting him to be a kid. He's not some science project for people to poke and prod at we had enough of that. We will go for the therapy that benefit him but the others we will skip.
Anyone else in this position should remember in Roger's words Autism is kinda cool, I don't want to be like everyone else.  Do what you know is right for your child don't just follow the hype (some of that stuff is extremely dangerous by the way). Support the organizations you believe in once again you don't have to follow the crowd. I'm open in as I learned about autism speaks I do not support them. I don't like the science, the politics, or the way their money is spent. But that is me I do not expect anyone to just go on what I say do your own homework check things out.

Anything But Typical

 Anything but Typical                                 By: Nora Baskin

This is what I got from Roger on this book.

Main Characters:

Jason:  A autistic kid who writes books.

Story Line:

He writes stories and goes to a writing convention.  He has a hard time fitting in. He has a little brother, goes to his cousin’s house and gets in trouble. He has his own laptop. He liked the book and he would read it again.

This book is on our school districts summer reading list.

So let me help you out a bit I did not read it but here is a summary from Amazon.com

Product Description

Jason Blake is an autistic 12-year-old living in a neurotypical world. Most days it's just a matter of time before something goes wrong. But Jason finds a glimmer of understanding when he comes across PhoenixBird, who posts stories to the same online site as he does. Jason can be himself when he writes and he thinks that PhoneixBird-her name is Rebecca-could be his first real friend. But as desperate as Jason is to met her, he's terrified that if they do meet, Rebecca wil only see his autism and not who Jason really is. By acclaimed writer Nora Raleigh Baskin, this is the breathtaking depiction of an autistic boy's struggles-and a story for anyone who has ever worried about fitting in.

From School Library Journal

Grade 4–7—Baskin writes in the voice of a high-functioning boy who identifies himself as having numerous disorders, most with labels that appear as alphabet soup. In the third grade, after yet another battery of tests, Jason receives the diagnosis of autism. Now in sixth grade, he relates how he does not fit in, even though he tries to follow the instructions of his therapists and helpers. He labels the rest of his classmates and teachers as neurotypicals, or NTs for short. While humor resonates throughout the book, the pathos of Jason's situation is never far from readers' consciousness. If only he could act on what he knows he needs to do, his life would be so much easier. Jason also shows himself to be a deep thinker and an excellent writer. Through his stories and thinly veiled fictional characters, Baskin reveals not only the obstacles that Jason faces, but also his fierce determination to be himself at all costs. Jason is a believable and empathetic character in spite of his idiosyncrasies. Baskin also does a superb job of developing his parents and younger brother as real people with real problems, bravely traversing their lives with a differently abled child without a road map, but with a great deal of love.—Wendy Smith-D'Arezzo, Loyola College, Baltimore, MD
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved. --This text refers to the Hardcover edition.

White Coat Syndrome

I was reading a post by Diary of A Mom , where she was talking about the doctors who don't read paperwork but just know it all. We all have heard of White Coat Syndrome where as soon as the Dr. comes in we forget everything and BP goes up all that good stuff. Really though I think some of the doctors have White Coat Syndrome where once that coat goes on they know it all.

The post made me think of a psychiatrist we saw years ago. Roger would have been about 6 or 7. The way she did things was the parent would come in first and talk with her and then she would see the child on another appoint. Ok seemed kind of weird but whatever.

I went to see her and was telling her about some of the things Roger was struggling with no friends, difficulty paying attention unless its something he likes, easily distracted, etc...  She talked to me for less than 10 min. never saw Roger much less meet him, didn't talk to teachers. In that 10 min she deiced he was ADHD and needed to be medicated immediately. She wanted me to take a script for Ritalin for daytime and some sort of sleeping pill for the night.What she was not listening to was the school district had already evaluated him for ADHD and said that was not it but they didn't know what at the time.

I asked her shouldn't you see him first. She said no I already know whats going on. I didn't walk away from that doctor I ran.

Fast forward 4 years and age 11 and he is diagnosed with ASD, SPD, Executive functioning all of which explain the behaviors that were so confusing to everyone. I wish I still had her number, I can't even remember her name and who knows if she is still in practice. Just to call her and say hey remember that kid you tried to dx without seeing him (oh wait there's probably hundreds) you were wrong!!!

Fun at The Dentist

OK so taking Roger to the dentist in for a cleaning is bad enough, try having to get fillings. In the past they just took him to the hospital and sedated him. This time we found a really good pediatric dentist, first off he was the first to take my insurance that didn't have a 6 month wait second he had a same day appointment for three kids. He did the initial exam and saw the anxiety Roger had and asked how we had done dental work in the past, you have to remember we moved from out of state. He had only needed it once before and there was a lot to be done so that's where the sedation came in. He thought we could do the small fillings without total sedation. The plan was for us to come in he would give Roger a mild sedative to help with the anxiety, wait an hour, use some laughing gas and do the work. Guess what it worked. The only down side was the medication made Roger obsess a little more for the rest of the day. But we were able to have the fillings done in one session without a lot of drama or anxiety for him. Next week Lucy goes in for hers and it will be the same process, she has a lot of anxiety to when it comes to the dentist.

Eligibility Day

Today is our eligibility meeting with the school for services, well actually its the 3rd or 4th one. Last year he didn't qualify because they said they did not know what to do so I went and found out. The second meeting they wanted to ignore all the private evals that were done. I guess it's hard to have it pointed out that your speech only did a partial evaluation not a full one so she missed ALOT!! Met with the school psychologist and it sounds as if she is willing to push harder for the IEP not another 504 that they don't follow and really it doesn't do a thing for him. Some of the ideas they came up with at the last meeting months ago we tried but they didn't work but they want to keep trying it. So we are hoping that he is found eligible and can get an IEP at this meeting. If not I guess we go to the school board next. 
I already had school officials tell me social skills are not important, umm ok.

Disturbing

This is very disturbing to me:  callous disregard
That link is going to take you to a blog entry about the suspension of a medical doctor in Maryland. This doctor also hold licenses in many other states and is connected to a known autism center. Court docs have the names.  He took advantage of desperate parents and put their children at risk.  Through the blog you can see the actual court papers and the charges against him.
To sum it up he was giving a drug called Lupron to children. This drug is not approved in kids and is mainly a prostate cancer drug. It is also used to chemically castrate sex offenders. It will affect the development of ovaries and testes and is not approved for use in autism.  in 7 of the 9 cases examined the kids had autism, it was always stated that they had early puberty (the only approved use for Lupron in kids) even though none of them did.  One of the doctors statements from the court papers in regard to using Lupron in kids is just chilling "If you want to call it a nasty name, call it chemical castration. If you want to call it something nice, say you are lowering testosterone" 
I will let you read the other blog post and court papers yourself.

Asbergers Downloaded

This is one of Rogers new books.  He likes that it is set up like a dictionary and explains things like bullying, friends, chat rooms, apologies, alcohol, and family in a easy to read and understand format. you can click here to see an example of the book. It is meant for teenagers but Roger understands what most of it is saying.
The definitions in the book are given by a mother and son.  They each give there own take on what something like "Apology" means. Not only does it describe what it is but says that you should accept and no one will see you as less of a person if you apologize yourself.

A Mothers Courage

A Mother's Courage is a documentary about a Icelandic mother who goes on a journey to learn more about autism in hopes of helping her own 11-year-old son.  One of the first things I noticed was the wording, one of the first things said was he can't communicate normally.  Wording is everything, she never said he can not communicate just that he can not communicate like you or I do.
She visits people across the US and in the UK.  One of her first visits is to Temple Grandin, the next to a family in Wisconsin who has three boys on the spectrum.  She visits different experts in the area of autism as well to see what their research is. The UK did an interesting study where they looked at the fathers and grandfathers job's of kids with autism.  It was interesting to them that a good portion of father's and grandfather's were engineers.
Overall it is worth the watch.