The Winner Is:

The winner of Seeing Ezra as chosen by random.org is:

   "lucy_halloran@yahoo.com"

 
Lucy email me your address at noguile04@yahoo.com in the next 72 hours.

 

 

If you didn't win you can still buy a copy at Amazon

Progress

Everyone knows Roger has always had issues with writing. It is unorganized and hard to understand. We recently started using a visual map (the annoying story maps with all the bubbles and lines we all hated in school). They work. This is just one example of the difference:
Being asked to write a short summary of a book:

without using the visual map:

Artemis Fowl                                           By: Eoin Colfer
Artemis: 12 year old genius
Butler: Artemis’ bodyguard
Juliet: butler’s little sister
He discovers fairies. Gets attacked.  Catches a fairy. Almost gets blown up

Same book but with the map:

Characters:
Artemis Fowl is a 12 year old genius billionaire boy. He lives in a mansion on an island with Butler (his bodyguard), his mom, and Juliet (Butler’s little sister). His goal is to capture a fairy so he can get more money for his family. His full name is Artemis Fowl the 2nd. His family’s motto is Aurum potestas est (gold is power).

Setting:
Fowl manor is where pretty much everything happens in this story. It is a 200 acre estate near the city of Dublin, Ireland.  It was built by Lord Hugh Fowl in the 15th century. Fowl manor has several floors including one with prison cells, one with a karate dojo and one with a tech room. The tech room is where Artemis translates fairy language.

Plot:
Artemis Fowl starts out the story looking for a fairy. He finds one and shoots it with a tranquilizer. He then puts the fairy in one of his prison cells. He sends the other fairies a ransom note for 2000 pounds of gold (1 ton). The fairies then attack Fowl manor with an ogre and a nuke. The fairies end up getting back half of the gold they give him but Artemis survives the fairy nuke.

I did not help him with this other than helping his set up the map.

 you can see the book here 

The Rest of The Story

This is a hard post to write. Some of you will think I am crazy but I am telling the truth.  I wrote a post about a month ago about my son and his connection to my cousin who died years ago. ( Read hereThe emails I got were amazing and supportive. Here is the whole story. I'm finally ready to tell it.
On August 17, 2002 my cousin died. He had gone to Mt. Cruiser in Washington state to climb with a friend. I was working that day. Towards the end of my shift around 8pm a coworker who worked search and rescue was called out. I thought nothing of it. A few minutes later I recieved a call that there had been an accadent.  I don't think I have every driven so fast to get home. At the time I only had Roger he was 3. My parents went to the rangers office to be with my aunt and uncle. I went home.
At this time we knew nothing. All I knew was his friend had hiked for hours to get help after Jason fell. I put Roger to bed and a friend came over to stay with me. Around midnight Roger came downstairs and said "mama Jason can't come home. He has a big owie on his head. He said to tell you he is OK." At this point noone had found him yet. The next day we learned he died of a head injury. I was in shock he was my biggest supporter.
This was just the start. Roger went to the wake but not the funeral, I thought he was to little for that. I did go pick him up and take him to my aunt and uncles house afterwords. He kept saying hes OK hes happy he doesn't want everyone to be sad. Really this coming from a 3 year old.
This has gone on for years. Roger is 12 now from the time he was 3 until now I will come across him having full on conversations with someone who isn't there. When I ask who are you talking to he always answers Jason he looks out for me. It does bring him some comfort.
The first school he went to was a private catholic school this was before he ever got any diagnosis. His teacher would find him under a table talking and he would tell her I'm talking to Jason. She told me about it. She was very calm and said I can't explain this and I will not try your son is a lucky boy who has a guardian angel watching over him.
Fast forward to last year. We were driving and traffic slowed down a few times. We were in a Kia Sedona. The driver behind us a Nissan Tacoma. The driver hit us at around 50 MPH. My van was totaled, everyone walked away. Roger and my husband had concussions. The little kids in car seats unharmed. 
After emailing his nuroligist about what happened and that he was not acting right even for him she said bring him in. I did and she asked him about what happened his response was chilling. "We got hit I started to come out of my seat but Jason pushed me back into my seat and held me so I would be safe."
I guess she saw my reaction and took me in the hallway and asked "who's Jason?" I told her thats my cousin who died years ago. She didn't freak out or anything just said maybe he was there maybe he is why none of you were seriously hurt. It's not as often as it used to be but he still talks to him and he feels comfort from it.
I know I may sound crazy but with everything that has happened in the past years I believe him. Even in death Jason is still looking after Roger, while it gives Roger comfort it does me as well I couldn't ask for a better person.

Flood

We had some flooding two days ago. I have no words for it, I will let the pictures do the talking.

The Rain.

This is a street not a pond

Street you can see that the water is to our front porch

Husband standing where My van was parked before they pushed it out.

Guys walking to push another car out of the water.

The black pot is our mailbox

My Van. No I did not drive into this I was parked before the water came.

Standing water in my center console

More water inside the van

Trying to air the smell out of it. It smells awful, it's a total loss but insurance wont pay for it so we have to clean it the best we can.  This is also where it was parked when the water came.

Front of house. Water was all the way up the hill to the porch

Seeing Ezra: Book Review and Giveaway

Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal by Kerry Cohen

My rating: 5 of 5 stars


When I was asked if I would like an advance galley copy of this book to read of course I said yes. We don't turn down books in this house. I was prepared to read yet another book from a mom that was from the martyr standpoint. We all know the poor me feel bad for me autism books. This book is not that type of book. The first quote that stood out to me was " Tonight, autism comes into my house and settles into the cushions of my couch. As of tonight, autism is here to stay. It will not be leaving, not ever again." We have all been there. Autism comes and settles into our life and it will never leave.

I was drawn in from the very beginning and read this in one night. From the start you can tell she loves her kids to no end and would do anything for them and not expect anything for doing it. You come to find out that Kerry doesn't care what society thinks she should do she wants what is best for Ezra.

There is more than one story going on yet it flows. Not only is it the story about Ezra but also the story of Kerry's marriage and how it suffers. I have been there when you get so wrapped up in your child and what society thinks you should be doing your spouse kind of slips away.  As she is dealing with testing her husband is slipping into depression. Never did I get the feeling that I should feel not only poor mom, but never poor Ezra.

She briefly talks about some issues she has with her parents. If you have read her book  Loose Girl which I reviewed here  you know what she is talking about and the extent it really went.

Kerry did a brave thing that many parents will not do she told us what she was feeling during the testing sessions. That the therapists are basically nuts and say what you want but many do treat the kids as damaged rather than as kids.  She thought there was a better way to do therapy rather than frustrated the child, and she found therapist that she was comfortable with and walked away from ones she was not. The debacle with the autism school will leave you wondering what the heck happened here, who do these teachers think they are, and reminds you do your homework. Don't forget Frankenmilk. No matter how you feel about autism therapies you must read this book. For once there is a book by a parent that is not about "fixing" but rather acceptance that Ezra is who he is and that is OK.

The quote from the book I leave you with is "If this was a different kind of special needs memoir, I would find the therapy or supplement that makes Ezra all better. I would save him. But that's not our story. The Great feat in Ezra's and my story is that I do nothing. Finally I do noting. I let Ezra be who he is."

Giveaway time-

Want to win a copy of Seeing Ezra for yourself,  Winner will be chosen randomly from comments.

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One winner will be randomly selected from the qualified comments received by Wednesday September 28, at 11:59 PM EST. Please leave an email address on one of your comments. Winner must respond within 72 hours or another winner will be drawn. Contest is open to Canada and the USA.

*copy of book for myself and giveaway at no cost by publisher.
View all my reviews

First Day of School

First day went fine for everyone.  First thing Roger said when he got home was the food is much better! It's always about the food with him. Lucy was a little unsure but was fine today just hates waiting for her bus which is ALWAYS late!

7th Grade start of Middle School

2nd grade she wasn't too sure

Lucy's bus. I was banned from going anywhere near the middle school bus

Letter to Teachers (teachers input please)

I got this idea from another autism mom.  Rather than try and meet with every teacher in the first few days to write a letter.  Not only is it easier than verbally saying everything as I know I would forget something but they can reference it later if needed.  This site gave me a starting point.  I used it as a template and added what I needed to and took out what I felt was irrelevant.  I do not want to sound condescending to his teachers that would not be a good way to start the year.

I know some of my followers are teachers so I will post my version of the letter and please anyone parent or teacher let me know if you think I am leaving anything out or can change something.  As I said I want to get across that I am supportive of the teacher and want to work as a team.

The letter:

September 7, 2011

D

ear Teacher,

  

We have set up this form letter to give to every teacher to help them better understand our son,  _____.  His IEP has all his testing and the education plan so I will stick to some things you may experience with him.   Andrew has been diagnosed with autistic disorder.  The co-existing conditions that ______ has are Sensory Processing Disorder, Auditory Processing Disorder, Anxiety, Executive Functioning Disorder and a movement disorder.   I just wanted to let you know a little more about him in writing and it’s easier than verbally trying to explain it all.

While these issues are complex, you probably won’t be able to tell anything is different, at least for a while.

_____ is a very curious child that pays attention to very small details and can get “lost” in the shuffle of daily activities.  Working together as a team with open and frequent communication is the key to helping ____ manage himself and find his place.

We have been working with _____ to develop self-help and coping techniques so that he can manage the over-stimulating and confusing world around him. 

Some of the things we have found that help _____ are:

One of the challenges with his auditory processing disorder is sometimes he does not always hear what was said to him.  Visual Cues are key:  Charts, Outlines, Graphics (Visual will always work better than auditory).  He will have a folder for each class, inside of it I will place a checklist for him to look at as well as a basic one for his locker to help him remember what supplies to bring to class. 

With The executive function disorder ____ has almost no organization. In the past, he would often forget his belongings and then later would “melt-down” over forgetting something.  He is determined this year not to improve on this.  _____ almost never relays information to me about his day and would never remember verbal instructions to be told later, so I will be accessing blackboard on a daily basis to help him at home stay on track. Using a planner has been a struggle for _____.  He doesn’t know what to write down or how to write it down. We are also working with a private Occupational therapist on a weekly basis to address the organization skills.

With the sensory processing disorder little things in the environment will distract him.  He does not have problems with the loud noises it is the little noises that affect him.  An example is the sound of pencils on paper.

Some things you may notice are ____ has a few what we call tics.  He constantly has small movements, tapping legs, moving arms, and some facial and head tics at times.  He cannot control these movements and when they are pointed out they become worse as he tries to control them.  When he gets anxious or frustrated these movements also become more noticeable.  There have been a few occasions that this has looked like a seizure.  He has had extensive testing and does not have a seizure disorder it is just anxiety.  Usually removing him from the situation for a few minutes will calm him down and help him to regain his composure.

  

______ is a very mild mannered boy and won’t cause any trouble in class.  He is shy at first and then he becomes very entertaining the more he opens up to people.  School can be difficult for him.

We appreciate your willingness to educate our son.  We are looking forward to working with all of you and having a great school year this year.  Please don’t hesitate to contact us with any questions or if any problems that arise.

Sincerely,

My Name

Phone number and email address

Therapies and When You Don't Follow The Masses

One thing we all know about the world of autism is the multiple therapies that are around.  In the beginning you are made to feel usually by other autism parents if you do not jump on every available therapy there is you are not doing all you can for your child.
I have never been a jump on the bandwagon type of person so many of the so called therapies I would never consider. (i.e. DAN doctors, chelation, no vaccines or flu shots, and the list goes on).  On top of this you add neurologist, psychologist, speech therapists, ABA, OT, PT and on and on.  Really who has time for all of this.  Sometimes you are looked down upon when you walk away from the therapies.
For the most part I have. Roger receives OT, Speech, and sees a psychologist.  He needs these to function.  We see his neurologist every 6 months to check in and his neuropsychologist once a year.  This works for us. As it is he already has 3 hours a week private therapy. He is going into middle school he wants to do after school activities and he has to have time to do his homework. So with school, his therapies, after-school stuff, and homework a lot of time is already taken up he needs some down time in there too.
His neurologist agrees with me. When it came down to time lines therapy was going to be close to 40 hours a week. Really he needs to be a kid not someones guinea pig.  What better way to teach him social skills and have him practice them to have him out in the world not in an office.
I have literally been yelled at for not going to a DAN doctor. First off I think they are quacks. Second off even if I had wanted to I don't have thousands sitting around to pay for supplements and testing. We have a hard enough time as it is just keeping food on the table and the lights on. Then it was Roger was not tested for heavy metals by an approved facility. Um he was tested in his doctors office when they thought he was having seizures they wanted to rule that out, which it was. I think my family doctor is an approved facility.
The kid has been a pin cushion and guinea pig long enough and this mom has decided enough is enough. No more tests (all his doctors agree). What does he need to function. If it is not absolutely essential then we don't need or want it. And if wanting my kid to experience the world for himself all the good, bad, ups and downs makes me a bad mom then so be it!