Marriage

yep this is from our wedding. Nothing fancy just us.

I'm taking the lead from other blogs on marriage. What makes it? Special needs or not its hard but having a kid with ASD can make it a little harder. I get sidetracked I get stuck in my own world of therapies, doctors and IEPS sometimes and forget to just live, just be, have fun, stop planning the next move for 5 min, turn the computer and the phone off. I've seen this post in pictures and words I'll do mine for the most part in music. It just makes more sense to me.
I know you can't always get away. I mean it's been over a year since me and my husband have had a night without kids. but we make it work. Even if it's a movie from redbox and a bottle of something after the kids go to bed. You do what works.

 

 

 

Homework Battles (yep again)

When I say homework battles I'm not talking about the typical fight with the kids to do their homework, that's not a problem. The problem is the actual homework. It's like these teachers have no clue how to change the curriculum for a child with autism.

my Facebook post last night:

This is a question from Rogers homework: How does the protagonist view himself/herself in your story? Identify a page number and example from the text. His response I don't know I am not them. WHY can these teachers not get it through their think heads that he seriously cannot put himself in someone elses shoes and tell you what they think of themselves. UGGGG Oh and I was informed he is to write an essay on this as well, this should be fun.

It took us three hours and finally he came to he feels good, reason because another charter in the book said so. Ok works for me. I know I am going to get some note home that it is incomplete and not acceptable and again I will have to point out the IEP. A friend of mine said I should send a note in with the homework saying " How does the student who is incapable of taking anthers perspective feel when his teacher assigns him homework requiring him to do exactly that?" honestly how can she expect him to do something she obviously is incapable of doing herself."

I was looking at his next section of questions and they are Give a specific example of how the protagonist has changed? And what have you learned from the characters?

Those should be fun. The teacher also said she will have him reread the book to make sure he understands it before he writes the essay. wait what back up a minute. The problem is not his comprehension. He understands perfectly what he is reading you actually have him reading about 5 grades below what he can do. It's the questions you are asking you know he has problems putting himself in a fictional characters shoe and telling you how they feel. Heck the kid can't tell you how he feels a lot of the time. If you do not really understand your own feelings how can you understand and explain someone elses?

I have sent a email to his case manager to let her know that he solution of oh we will just punish him and make him reread the book is not going to solve the issue. The questions need to be reworded. So we will see what happens and if they take time to listen and work with him and his needs rather than what some curriculum states.

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.

In the Middle: Finding Where We Belong

In the past year we have gone from not fitting in to really not fitting in. Let me try to explain this a bit, hopefully I make sense. You see both my ASD kids are High Functioning. Yes I'm adding Lucy into this now. I don't need a diagnoses to know it is her older brother all over again. The high functioning asspect puts us in the middle. They don't fit in with NT kids and they don't fit in with lower functioning kids. So what are we to do.
A example of this would be Roger wanting to play baseball. The regular little league is not for him, all the tryouts and the pressure to win would just be to much for him. Besides with his motor skills problems (i.e. the kid has no balance) he probably would not make the team. On the other end is the special needs baseball. We don't fit in there either. What do you do when you are not high enough functioning for NT activities but at the same time too high for the special needs groups.
We have gone to events were yes everyone no matter the need is welcome, and no one has ever said you don't belong here but we just don't belong. The other parents talk about doctors and treatments etc we just don't have the medical needs. When your kids classmates are volunteering at the events it makes it worse on him. I want him to have the socialization but I also know he has to face these kids in the halls at school.
We are just at a loss right now. Where do we go? Where do we belong? Do we even belong in this group who have so many more struggles than us on a daily basis? We are stuck in the middle and we just need to find where we belong.
I know there are more families just like us we just have to find them.

Red Solo Cup

Last weekend I took Roger and a friend to Target.  When we were done there we went to Safeway.  Safeway on a weekend is nuts, to many people and many of them rude.  They always look at me like I'm nuts when I have all four kids with me.
Getting back to the story the two older boys basically were playing with anything they could find and just being teenagers.  As we were finishing up and going to the checkout line.  They spotted a stack of red solo cups.  This triggered both Roger and his friend to break into song with Toby Keith's Red Solo Cup song.  So not only did I have four kids with me in the store but two were singing.  Do I care? No not really they had fun and no one got hurt, well some peoples eardrums may have hurt from the off key singing but they will get over it right?

When I went to post Toby's video I saw (I had heard about it) there was a Glee version. I am not a fan of that show have never watched will never watch it. Really could they please leave this song alone. Just because it's popular does not mean we want to see it on Glee. Besides isn't Glee supposed to be a hs show why they singing about beer? Sorry for the rant.

R.I.P. Pooh Blanket

Facebook post from November 5, 2011: 

"finally got Roger to agree to give me his pooh blanket to wash. It's a crib comforter that he has had since he was born. It's a fight to get it from him and by the looks of it I don't think it will survive another wash." It did survive that wash.


Today's Post: 

"The blanket he has had since he was a baby is no longer. It finally fell apart it has been 12 years. Which lead to a 2 hour meltdown which involved rearranging the house because he could not tape the blanket back together. Of course since it has been 12 years I cannot find another one, so far it looks like a blanket his great grandma made him will work as a replacement."

Pooh Blanket

Yes you read that right pooh blanket is gone. Roger came out of his room last night all upset and all he kept repeating was it's broken. Rearranging my house because he cannot get what he needs to say out. Finally he ended up going in my room to the trunk that has their baby stuff. Yes I am that mom I have there first outfits, costumes, etc. I have restricted myself to one trunk, anyways my hording of baby crap is not the the story here that's a whole other post. When he gt the stuff off the trunk and opened it I saw what the problem was he was putting pooh blanket in there.

While you can see through this blanket yeah its that bad he still wants to keep it. Now he is putting in the trunk rather than in his bed. Now before we got to this he took a roll of scotch tape and tried to tape the blanket back together. Of course that wasn't going to work which is what set off the meltdown. 

You can see where he tried to tape it

On the progress side:
1) He deiced it was time to retire the blanket. (while he wont let me throw it out he put it in the trunk) 
2) I have other baby blankets that are his from when he was born and he was willing to try another one. Right now a blanket Nana (great-grandma) made him is what he has chosen.
3) Usually during a meltdown I might as well be talking to a wall, I'd get a better response. While this one started like that like he did calm himself down enough to tell me it's broke, tape wont work and I feel sad. (go figure somehow I figured out how that all went together.

R.I.P. Pooh Blanket