"Hi, Mom! Did you have a nice day?"

Many of you may know that DC is obsessed with food. He has breakfast and he is already worried about lunch. After lunch we move on to:
"Dinner is later after that" - he always seems to add "after that" when he talks about "later".
He must give me his breakfast order before he goes to bed every night. There is never anything different about his order from one night to the next, but he feels compelled to tell me every night before he goes to bed.
There were a few times (very few) when DC forgot for one reason or another, to remind me of his breakfast order before he went to sleep. On those occasions, he came into my bedroom to wake me  up in the middle of the night so that he could give me his breakfast request.
Most days, when I get home from work DC does not even say hello. He gets his wallet, holds it open and says "Only two dollars". This is his way of telling me that he wants money for lunch at work the following day (and for some reason, there always seems to be two dollars left in his wallet).
His only concern at that moment is his lunch the next day.
My reply is usually "Hi, Mom! How are you? Did you have a nice day?" - at this point he realizes that he did not even say hello before asking for money, he says hello, but then gets  right back on the subject at hand - his wallet.
We run through this same routine very often.....
.......................until the other day, that is.
DC came over to me, with open wallet in hand, as usual.
But instead of telling me that he only had two dollars, he ran through every greeting he could come up with all in one sentence as if he was just trying to get it all over with. It was such a monotone, run-on delivery, that it took me a second to understand what he doing:
"Mom, how are you feeling, hello, nice day, yes, nice to see you, good day, happy, hi there"-
Then when he ran out of random greetings......
"Mom, only two dollars"

Originally Posted at Wordpress

ATTENTION NYC PARENTS : Avonte's Law - Rally JUNE 12, 2014!

Dear Supporters:

After the NY Post exposed the New York City Council for stalling on "Avonte's Law" this week, they immediately scheduled a hearing date on Avonte's Law.

The hearing will be at New York City Hall on June 12 at 10:00AM. 

We will have a press conference and rally for "Avonte's Law" at City Hall at 9:30AM. We need you to come to the press conference and hearing on June 12.

 If you can't make it, you can submit testimony via email to Daniel Dromm, Education Committee Chair at ddromm@council.nyc.gov Please CC us so we have a copy of your testimony at admin@nycparentsunion.org

In the meantime, please post and forward the petition to everyone you know on Facebook, Twitter and via email.

If you're on Twitter, please tweet your support of "Avonte's Law" and demand Mayor de Blasio and Speaker Viverito pass the law to @BilldeBlasio @MMViverito #AvontesLaw

With your help and support, we will pass this law to protect our children.

Thank you. 

New York City Parents Union

(received via e-mail)

The GREAT BOOK PURGE of 2014!

Finally our Town scheduled a “Big Trash” pickup. These pickups used to be an annual event – when I say “event”, I mean an “event”. It was as if a newsletter went out to all of the surrounding towns and as soon as one piece of “big trash” hit the curb, the caravans of cars and pickup trucks descended. DC and I moved to this town 20 years ago, for the school system. At the time this town had the best special education  program in the state. We moved here from a relatively big city, where to be honest, I thought I’d seen everything, until “Big Trash Day” came around, that is…….. I had never seen anything like this… but I digress.
Due to budget cuts, “Big Trash” pickup went from every year to every other, then finally there was no pick up at all.  This year, the town decided to schedule a “Big Trash” event in April. It has been about 5 years since the last one.
As many of you know, DC loves books. His favorite activity is going to the bookstore. I’m sure he averages 3 or 4 visits per month. This means we have hundreds of books squashed in our little house. He has so many, that I really can’t keep track of what he has. If he’s picking out a book at the store, I don’t really remember if he already has it at home and he really doesn’t care if he already has it. Obviously if it is a Disney book, I know he has at least 4 or 5 versions of the particular story but I really can’t remember if he has the version he wants to buy…..or……… I know he HAD it at one time, but we may have gotten rid of it during the last “Big Trash” event. Needless to say, we end up with many duplicates.
His books and his DVDs are two things I will never be able to keep tack of.
Because DC “edits” all of his books, they really can not be donated. They are just unreadable to anyone else but DC.

I have taken some flack over the years for letting DC write in his books because they can not be donated later. This is true, we can not donate them and I am left with a large amount of books that I have to get rid of without breaking the recycling and/or garbage man’s back.
I don’t know about you, but I don’t always purchase items based on if or where I can donate them later. If an item can be donated later, it will be.
DC is allowed to write in his own books, he does not write in library books, he does not write in books that do not belong to him.
He is allowed to write in his books because it is beneficial to his language/conversation skills, his vocabulary and his comprehension.
Yes, some of his editing is obsessive. One of the many versions of the “Wizard of OZ” that he owns was an older version where the “Tin Man” was referred to as “The Tin Woodsman”. He went through every single page of the 200-plus page chapter book and colored out (crossing out is not good enough) the word “Woods” on every page, so that it read “Tin Man”.
He also likes his chapter numbers to be written out. Chapter 1 has to be edited to read “Chapter One” and so on. Every other day he will ask, “Mom, would you spell twelve”. I do not know why after all this time he can spell every other number, but not twelve, but for some reason, he can’t. There are many other words he will me to spell but “twelve” is a constant.
Recently ~and I really think this is great because he figured it out by himself ~he has become interested in Roman Numerals.
He figured out that the V means ‘five’, so along with spelling out the chapter numbers, he is also assigning them his version of a Roman Numeral. I say his version because he knows V is 5, so Chapter 13 is edited to read “VIIIIIIII” or sometimes “IIIIIIIIV”. In any case, he is adding 5 (V) + 8 (I’s) to get to 13. He was never big on numbers, so if his own version of Roman Numerals moves his mind into “math mode”, all the better.
The obsessive editing aside, he changes sentences into new sentences that make sense. He changes words into words that mean the same thing. He will ask me from time to time what a word means and then comes up with an edit for that word that means the same thing. He is learning, he is writing full sentences, he is learning what words mean and there’s a little bit of math happening, so YES, I let him write in his books.
The problem has always been just what to do with these books when they begin to take over the house.
It has been suggested, that I should just do a little bit at a time, this way I can throw them in the recycling bin without being the cause of a Workers Comp injury for the trash hauling company.
I can not do just a little bit at a time because:
- DC gets nervous.
- We would be going through the same shelf every week, because as soon as there is a space a book or books gets shoved in it.
- If I went through all of it at one time and just got rid of them a little bit at a time I would still end up with a huge pile of books somewhere in the house and he would slowly begin to add them back into his collection.
I made the mistake of throwing away 9 or 10 books about 15 years ago. They were books I was sure he hadn’t looked at or touched in years, but he knew! For years, until just recently, whenever he left the house to get on the bus for school and then work, his last words to me were “Books are staying here”, every single day.
When I heard there was a “Big Trash Day” scheduled in April, I began getting DC ready. I talked to him about his books everyday until the week of. I explained that we were going to go through all of his books and he would tell me which ones we were going to “keep” or “throw away”. I explained that we would not throw away anything unless it was alright with him. I also explained that we would go through all of his books together and I would not do any of this without him.
We couldn’t start too early, because having the books he opted to throw away hanging around for any length of time would really bother him and he would slowly move them back to the books shelves. We had to have everything out on the curb by Sunday evening, so DC and I started sorting on Thursday night.
We started with his living room book-case. We went through each and every book. I was surprised at the amount of books he decided to throw away. I’m sure he was already planning to replace them a little bit at a time during his many future trips to the book store.
On Friday, I had a medical appointment and I was not allowed to lift anything heavy for the day, so we lost a “sorting day” right out of the gate. On Saturday we started in his room. We were attending a  fundraiser that evening so between the sorting of books I was getting phone calls and texts to look for this and that and people wanting to drop items off for the fundraiser. I started getting anxious about all of these books. This book purge had to be completed today, before 4pm when we left of the fundraiser because DC was spending the night and the next day at his Dad’s - he was going to take DC directly from the fundraiser and I has promised DC that I would not sort or throw away anything with out his approval.
His room took almost all day and in the process, I threw out my back, carrying said books downstairs. Now I thought I would not be going anywhere at all that evening, never mind  getting through all of his books, but DC was a great help.  Going through his room made me feel like I was in an episode of “Hoarders” –  it always does.  It is just amazing how many books he can fit in his little room!

We did it! I told DC over and over again how proud I was of him, so he wouldn’t start getting anxious about all of the books that were going away and because I WAS very proud of him for agreeing to get rid of so many! The following day, Doug came over and hauled them all outside. When DC came home from his Dad’s on Monday morning in time for his transportation to work, they were all gone, so he never gave it another thought.
No worries, though. He has plenty of books left to edit and I assume he is already plotting the replacement all of the books that went away with nice, new clean versions to edit all over again.  These shelves will be over flowing again in a few months time.

And…… we did find 40 or 50 books that were not edited and we were able to donate.
http://takestep.wordpress.com/2014/06/01/the-great-book-purge-of-2014/

So… we’ve had quite the week in the news, haven’t we?

HEADLINE:
Study: ‘Significant’ statistical link between mass murder and autism, brain injury” ~ Washington Post – May 21, 2014
Yes, that was the headline. If you read the rest of this article, it really doesn’t say anything of substance at all, but the headline screams “AUTISM  and MASS MURDER!”
In fact, somewhere mid-article it reads:
“The researchers stressed the study is “clearly limited” by the “anecdotal and speculative” nature of some of the published accounts. Lead researcher Clare Allely, of the University of Glasgow, emphasized the study did not suggest those with autism or Asperger’s are more likely to commit murder”
- But Still the Headline Reads “‘Significant’ statistical link between MASS MURDER and AUTISM, brain injury”
Readers that may have taken the time to read further, are assaulted with a photo of Jeffrey Dahmer. The inference is, in this article at least, that due to some of the characteristics he had displayed, he may or may not have had some form of autism.
After displaying the photo of this very recognizable face, the article does go on to say:
“Despite the patterns that emerged in the study, researchers cautioned against sweeping conclusions. Neurodevelopmental disorders, they said, do not portend mass murder.”
I am sure very few people made it that far into the article. With the headline “Autism – Mass Murder”, and a photo of Jeffrey Dahmer, how much more would anyone need to read?
If one were to look closely enough at any of us, I am sure we all have one or more traits that can be similar to person with autism. These one or two traits, does not a diagnosis make.
Not all Autistics are loners or isolated as not all loners, shy or isolated people are Autistic.
Let’s not create a diagnosis to fit the ‘study’.

Santa Barbara: - May 25, 2014
My heart goes out to all of the victims and their families of this senseless act of violence. It is a tragedy that seems to be happening much to often.
This tragedy could have been prevented. There were warning signs, the parents saw these signs. They did what we have all been told to do after each and every tragedy that came before it – they reported their suspicions to the police.
“Police visited and interviewed the 22-year-old on April 30, after a family member became alarmed about YouTube posts by Rodger that mentioned violence and suicide. While Rodger’s parents and social worker were concerned, police found the student to be polite during their interview. He had taken down the alarming posts. Police cleared the call and left without taking any action. They determined that he did not meet the criteria for an involuntary mental health hold,”  –  It does not seem that the authorities have learned very much from these recent tragedies.
And again, right in the middle of the first article I read about this shooting were the words,  “the shooter had been diagnosed as a child with ‘highly functional Asperger’s syndrome.’ -  written just like that, in the article as if to say that the Asperger’s diagnosis was the reason behind the shootings, exactly the way it had been done in the Sandy Hook articles.
Just as in the Sandy Hook articles, this claim of an actual diagnosis is being disputed:
In an article published on May 25, The L.A. Times reported that Rodger family friend Simon Astaire said Eliot Rodger, the prime suspect in the shooting, was not diagnosed with Asperger’s syndrome, but that the family suspected he was on the spectrum. The claim contradicts an earlier statement made by the family’s lawyer
Both shooters may or may not have been diagnosed with Aspergers, we may never know for sure, but the fact remains that there is no evidence to support the claim that an Autism or Asperger’s diagnosis, played any part in either of these tragedies. They may have had that diagnosis or that diagnosis may have been suspected, but THAT diagnosis is not the reason behind these acts. Clearly there were other, possibly undiagnosed issues at work here.
They may just as well reported that these shooters had “blue eyes”.
“Now we  caution against ‘sweeping conclusions’ based on eye color, but we just felt the need to mention the fact that this shooter had ‘Blue Eyes”.
Once again, Autism is made the scapegoat for an unexplainable horror.

Toni Braxton: – May 26, 2014
Toni Braxton wrote a memoir. Included in this memoir was her confession that she once believed that God  had punished her for an abortion she had  years ago by giving her son Autism.
Parents receiving a diagnosis of autism go though many, many layers of emotions and have many different thoughts. I do not have a problem with whatever she may have been feeling at the time. We all feel than think differently. We all handle it differently, there is nothing wrong with that.
There ARE some thoughts that should be kept to one’s self, especially when your child is involved. She may have felt guilt, she may have truly believed that this was some kind of punishment, due to her religious upbringing, but that thought should have been kept between her, her pastor and/or her therapist – forever.
Yes, I write many stories about my own Autistic son.
I write about him because I am so proud of him. – I write about him because he makes me laugh and smile everyday. – I write about him because I worry about his future. -I write about him because, I am told it helps others to understand autism (his autism, at least).
My son will come away from all of my stories knowing that his mother loves him and was never anything but proud of all that he is.
Toni’s thoughts about autism are her own. I would not disparage anyone for having whatever feeling they may have about that diagnosis.
But, this thought should have remained her own. It should not have been written about, printed in a book or spoken about in interviews. The fact that she no longer feels this way doesn’t negate the fact that her son will read and know that at one time, he was seen as her punishment. You can not take that back, no matter how much your views may have changed along the way.
You can not take that back …………………..
http://takestep.wordpress.com/2014/05/28/so-weve-had-quite-the-week-in-the-news-havent-we/

Seafood anyone?

Just a quick post just because I am so proud of my boy. I have told him so many times since yesterday that DC finally said, “Mom, write story”.
I don’t know if he asked me to ‘write story’ because he is proud of himself too or that he just wants me to stop telling him every 5 minutes, but either way, his wish is my command.
DC and his dad gave me a gift certificate for Mother’s Day for a seafood restaurant. The restaurant is very popular I am told. I had never been there, but DC has been there with his Dad and a couple of other times on field trips with an organization where he participates in many of their activities.
The restaurant is about an hour away, so we decided to make a day if it.
For a kid that loves to go ‘out to eat’ almost as much as he loves going to the bookstore, he didn’t seem all that excited when we finally arrived. Also, for a kid who remembers EVERYTHING, he didn’t seem to recognize it and told me more than once in the parking lot that he did not want to go there (I think he was a little bit out of sorts to begin with yesterday).
Once inside, he saw that they had cheeseburgers on the menu and he also seemed to now recognize the place so he stopped telling me he didn’t want to stay there. DC’s standard order anywhere we go is: wings, cheeseburger, french fries and coke. I could see they did not have wings on the menu so I was surprised when he ordered “fried chicken” with his cheeseburger. I did not see that on the menu either and tried to explain this to DC. He was getting upset and luckily the girl at the counter stepped in and corrected me and said that, yes they do have fried chicken and we CAN order one piece as a side dish/ appetizer. I should have known that he of course, would remember what he had when he was there before.
- SAVED by the counter girl -
I told DC that he was correct and that Mom was wrong, which just put him in a better mood, because he LOVES when I tell him I am wrong. :)
We took a seat and not too long after, our food was ready. In the booth behind DC was a family; parents and three young children. In the seat directly behind DC’s head was the mother and two of the children, they looked to be about 3 years old. The two children were on the inside of the booth climbing all over the place and screaming, two inches from DC’s head. At first I didn’t pay much attention because there are times that noise really bothers him and other times he seems oblivious to it. This seemed to be one of the oblivious times, until all of a sudden, he looked at me, lifted his fists straight up next to his head, clenched his teeth and just shook! There are many times when I don’t immediately know what is wrong, but this time it was apparent.
I told him that I understood what was bothering him and told him that it might be better for him if we just moved his food to my side of the table and sit with me. First he refused, because he was all situated where he was,  but after thinking about it for only another second, he agreed. He moved over to my side of the table, he looked at me, put his hand to his forehead, pretended to wipe it and said “Phew!”
It was a simple fix, but I was so proud of him for keeping himself under control. Yes, he shook his fists and clenched his teeth, but he did not make a sound, he did not yell, he did not lose control. He found his own way to let me know he was having a problem and he let me help him to correct it. I’m sure the people in the booth didn’t even know anything was happening. I praised him over and over again for keeping himself in control and letting Mom know there was something wrong and letting me help him.
I also took it as an opportunity to explain to him that when he sometimes gets loud in a restaurant that this might be how the other people feel; this is why I always ask him to try to keep his voice down. I’m really not sure if he understood the connection, but I have to try to make it, when the opportunity presents itself.
He went on to enjoy his fried chicken, cheeseburger, fries and coke in the seafood restaurant without incident and in a much better mood for shopping and bookstore visits to come later.

Seafood? Or just “see food”

(this post was written entirely on my phone, please excuse any typos and run on sentences)

New Wordpress Blog address

I have changed the address of my wordpress blog. All if the content on this blog is also posted there - the old links on each post here may not work, but all content is at the new address. I will continue to post here with the new address linked. Thank you! 

http://takestep.wordpress.com

Missing 14 year old #autism

Missing #autistic 14 year old Anyone with information about Cortez’s whereabouts is urged to contact the NYPD’s Crime Stoppers hotline at 800-577-TIPS. The public can also submit tips by logging onto the Crime Stoppers website or by texting tips to 274637 (CRIMES) and entering TIP577.