Thursday, March 28, 2013

April-Autism Awareness Month: Nothing Special Here, It's Just Our Daily Lives

Repost from 2012.  My thoughts and perspectives have not changed.

Next weekend begins autism awareness month. Just letting everyone know that I am not doing anything different than I normally do. I am not going on marches, walks or to rallies. I am not wearing blue. I am not putting a puzzle piece on my car. And no, this is not because of the on-going feud between ASAN and Autism Speaks. This is because everyday in this house is autism awareness day, week, month and year. We do not need to change anything we do in this house to "celebrate" autism awareness month. We are autism awareness.

They walk out into the world and the boys are dealing with autism and society. They walk into a store and the boys are dealing with autism and sensory stimuli. They walk onto campus and they are dealing with autism and auditory processing in classrooms. They walk onto campus and they are dealing with abstract reasoning issues and language processing. They walk into a restaurant and they are dealing with autism and the sights, sounds and smells of a new environment. They walk onto an airplane and the boys are dealing with autism and a fear of flying, change of schedule and an unknown adventure. They do their chores and they are dealing with autism and distractions and organization.

Everyday the boys encounter people and places and incidents that have an effect on their lives. When people interact with them these people learn about autism. When society sees them, society learns about autism. When professors contact the disability office to understand autism better, these people learn about autism. When doctors ask questions when they deal with the boys, these medical professionals learn about autism. When they walk onto campus and interact with their fellow students and these young people see how intelligent, genial and kind they are, more than anything else, these social interactions have a bearing on the future and how autistics are perceived by society.

Does prejudice still exist? Absolutely. That is what happened at CM1's job from last semester. (This was an incident in the fall of 2011. Since then CM1 and CM2 have had internships at which they are very welcome and very successful.) Yes a  complaint was made. They told me that it was taken care of...I did not request that he be reinstated at his job.  I am absolutely NOT sending him back into a situation where he could be bullied, picked on or made to feel inadequate. That would not be autism awareness that would be making my child a target and he has had enough of that in his life. If others want to live their lives like that then so be it. Go ahead. But that is not going to happen with my children.

Sue the school you say? You want me to sue the school that allows them every accommodation known to law and man. The school that allows them leeway in behavior at times because they understand autism and how hard it can be to process issues. The school that works with us and their doctors and their para and their entire village so that the boys may be able to access their brilliant minds. That school? Well no I will not sue under any circumstances that open, welcoming and highly understanding college for the misdeeds of one ignorant man. Sometimes in life you need to know when to hold, fold and call too. You really do need to know who your friends really are and how to say thank-you as well. That too is autism awareness, not to be perceived as ungrateful and self-centered louts.

By the way,  sorry to all those who are mad at Autism Speaks and all those who support Autism Speaks, but I have issues in my life and who did what to whom and who dissed whom and whom represents whom is not one of them. Perhaps it is as we discussed in my last post, youthful passion that has dwindled. (here) I do not know. What I do know is that I don't like gimmicks. I don't like nonsense. I don't like disrespect. I don't like that some people treat my children as if they are specimens in a zoo. So fight amongst yourselves all you want. I don't care anymore. If this means you won't come back here too, then so be it. If it means you unfriend me on Facebook or unfollow me on twitter, then so be it. I have real fights to fight and real day to day problems to solve.

What I care about is that my boys are entitled to be seen on a daily basis as human beings with rights and freedoms as everyone else year round. That is what I am fighting for. Yes I know that is what the advocates are fight for too, but they are not here with me in my house, in the boys' school, at the supermarket, at the restaurant, at the airplane or the hotel. I and hubby alone fight this fight for the boys. We always have stood alone. No one has ever held our hands. My demand is that these advocates remember that their view is not the only one and that others do and have a right to disagree with them. So fight amongst yourselves, just make sure in carrying on, you don't fuck it up for everyone else.

You know, we fight everyday. Not for just a day, a week or a month, so everyone in the world can feel good about themselves. Pat themselves on the back. Talk about how society should support those with autism. How society needs to find better educational tools for those with autism. How society has to find better supports for children as well  as adults, most definitely for adults with autism.Nope. I am not going to allow society to pretend how great they are because they heard a lecture about autism, talked about issues for an hour or two, or gave $5 for an autism walk or thought about how they might have known, possibly have seen, most decidedly came across someone with autism. This lets society off the hook too easy. Well I won't.

So society can make itself feel good about all that it does for the month of April. We will be seeing society the rest of the year too, every month, every week, every day, every hour. We are still here after April. Whether society likes it or not. And its how society treats my boys during those 11 months that really count. Concern doesn't count when society can give itself a public medal for how great they are because of what they did in April. It only counts when they care in August and January when noone  is looking and its not considered the "cool" issue of the moment

Honestly, we cannot control every aspect of life and every aspect of society. All we can control is the little space that we inhabit on this world. So no, I am not doing anything different than I already do for autism awareness month. I am not going to ask the boys to do it either. They live their lives on their own terms, and that in and of itself provides society with knowledge and autism awareness. The boys' lives are autism awareness without them even thinking about it. Their lives are autism awareness because they exist and they are part and parcel of the world.


Elise

Monday, March 25, 2013

Apparently #SAHM Are Too Stupid to Apply for Credit

I have to tell you I am mortified, flabbergasted, feel like I am living in an alternate reality. I decided to get a 0% credit card to transfer my credit card balance and save money on interest as I pay down my debt. Good idea..right? Of course right. So I went to my bank, which is having a promotion, and they put through an application for me. Additionally I added that I basically wanted a balance transfer from one card to the next. No biggie...We have great credit at our bank. Just finished paying a loan we had taken out for medical expenses from years ago. Was never late. Never missed a payment. They absolutely love hubby and me...well it turns out they love hubby...me, not so much.

Apparently Congress passed a law that states you can only apply for a credit card based on your income. You can no longer use "family income." The idea behind this thinking was that college students who were raking up tens of thousands in debt could no longer use their parents income to apply for a credit card. Hence putting themselves into excruciating debt that they could never repay and debt for which the banks have to take a huge loss. Now I don't know where anyone of you live but when I was in college I couldn't use income that I did not pay taxes on to apply for a credit card. I don't know how students can get away with using their parents income to apply for a credit card in the first place. OK sounds interesting...but that is not the point of this post, just the legislative intent behind the law.

The story continues: I had to call the main office of the bank to finish my credit card application. The man on the other end of the phone asked me what was my income. I replied that our family income was XXX. He said no they don't do family income since the 2009 law which outlaws it. I could only use my own income. I was dumbstruck...well not speechless per se but I had to regroup and try to assimilate what I had just heard. Needlesstosay, I did not handle that well and kinda, sorta began to yell.

Honestly, I wasn't really mad at him, I simply couldn't believe what i was hearing. I also wasn't sure that I hadn't been teleported backwards in time to when women were their husband's chattel and were not considered an equal partner in marriage. I figured next they were going to tell me that I had also lost the right to vote.

Here I am a respected member of my community being treated like I am an indolent child. Obviously according to Congress somehow I have no idea what my family finances happen to be, and am not capable of figuring out if we can afford a new credit card in the first place since I do not work outside the home. Apparently Congress doesn't think that "stay at home moms" know how to write checks, balance a check book or go to the grocery store without her husband tagging along or giving her an allowance as if she were 10. (It might have something to do with jealousy since we SAHMs balance our budgets yet Congress doesn't appear to have the intelligence to balance their budget) The reality happens to be that I cannot now get a credit card without my husband's permission. I cannot lease or buy a car without his permission. I cannot get an equity loan on my house without his permission. I cannot apply for any loans as an individual based upon family income. Yet I am singularly responsible for the taxes on that same "family income." In fact,  if my husband disappeared tomorrow with all our money, I would, according to the US government, still be responsible for any taxes owed on that disappeared income because as a "family" we earned it. And we in the USA complain because the Saudi's don't let women drive and electronically monitor their female family members whereabouts. Obviously we really aren't so much more advanced than those who shroud their daughters' faces or practice honor murders.

Sad thing is that there has been a recommendation for a fix in this law  (HERE) so that SAHM can continue to use "family income" to apply for a credit card but alas as per usual Congress has done nothing. I blame the women senators and congresswomen for lack of movement on this issue. I blame these so-called women's rights activists who  look down their noses at those of us who choose raising our children over any thing else. I blame these same female know-it-alls who scream and yell about federally funded abortions, birth control and Title 9, but for an issue that actually has an everyday effect on the average family and a women's right to chose her future, about this they do nothing.  The reality is, is that these female politicians and agenda-driven-harpies are nothing but a bunch of hypocrites, pandering to the common lowest politically correct denominator and ending up an embarrassment to their gender. Don't tell me that you care about equal rights for women yet deny equal rights to those of us who basically spend our days inservice to others.

Yeah I'm still mad. Really really really mad.


Elise


Tuesday, March 19, 2013

The Maccabeats-Les Miserables-Passover Story

I adore the A Cappella singing group the Maccabeats
I just love the musical Les Mis
Monday begins Passover, the remembrance of the Jewish people's journey from slavery to freedom in Eretz Israel






No, the Jewish people will never be slaves again...and we need no ones permission to be free either.....

Remember that the last line of the Seder is "Next Year in Jerusalem." Someone should remind President Obama of this when he makes his trip to Jerusalem, Israel this week. (Note: the White House website does not acknowledge that Jerusalem is the capital of the State of Israel. In fact the website simply erases most of  Israel altogether.).



Elise

Fly Away...the Movie...Autism Awareness

 Fly Away is an award winning film about the life of a single mother raising an autistic daughter.

From IMDb: The poignant yet humor filled story about a single mother of a teenager severely impacted by autism, forced to reckon with her daughter's future. As her child becomes an adult, what used to work, no longer does. What will sustain her daughter, and herself? A parent-child love story, when love means letting go. Written and directed by Janet Grillo, herself a parent of an autistic son.









You can stream the movie on netflix or amazon video.

You can also follow the movie at their facebook page.


Elise

Saturday, March 16, 2013

Happy St. Patrick's Day


When I was in sixth grade, we were each assigned a country to report on for my social studies class. I got Ireland. It's been over 40 years. But somethings never leave you. Since that report I have always enjoyed Irish music, dance and especially a really good cornedbeef and cabbage...but alas I never developed a taste for beer. Though, this list may help you decide which brew you may enjoy this St. Patrick's day....Best Irish Beers













May the road rise up to meet you.
May the wind always be at your back.
May the sun shine warm upon your face,
and rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of His hand.






Elise

Friday, March 8, 2013

Deriding the Need to be Held Socially Accountable; When Parents are the Problem

There is an interesting article in The Atlantic, "Are Grading Trends Hurting Socially Awkward Kids," about how many students on the autism spectrum are being downgraded because they lack the social acumen so necessary in today's academic environment. Needless to say, the majority of the comments are promoting the unhelpful belief that this is simply an unnecessary way to grade a student and it is "unfair." That ubiquitous term for everything that someone believes is directed at keeping them from succeeding, instead of accepting that it is their own lack of drive, verve, work ethic or desire that keeps them from moving forward. Sorry folks but I disagree vehemently with this notion of "unfair." Here is the comment I left:

I am the parent of two aspies. There is nothing wrong with teaching our children social skills as long as there is allowances made for their issues. Truth is as elementary children my boys received low marks because of their social issues. What it did was provide an outline for their IEPs and how the school was obligated to help them. They were provided paras that would assist in facilitation of social interactions especially in group dynamics. Furthermore, in college we are able to provide them with the same sort of support so that they can appropriately participate. And yes they have been downgraded because they did not behave appropriate in a college class. Emotional and social IQs are just as important in life (in many ways even more important) as understanding the concept behind calculus.
The reality is that this is a social world and our children need to learn how to participate. Simply because it is a deficit/disability or that it is hard does not mean that it is not necessary. While my boys may not be gregarious enough to become President of the United States, they must learn how to interact with other human beings especially in today's business world if they ever want to be able to have a career and the future of their choice.


I find it ironic that these same people who deride social skills requirements for grades find that it is alright to downgrade someone simply because they cannot muster the same intellect in physics, lets say. A requirement is a requirement and everything is not about regurgitating facts. 


The issue is not that social grading or requirements are unfair to those on the autism spectrum. It is unfair when the school does nothing to support or teach these skills to those with social deficits. I remember sitting in an IEP meeting for a child as an advocate and they weren't going to provide that child with a para during lunch or recess implying that the social skills required for these periods are not considered an educational issue. I chimed in that they most certainly are, since social interaction is a requirement for success both in school and life. "Being social" is a major life activity and they needed to provide support for that child. They did relent eventually and provided that child with support for those periods.

In fact because of the social deficits that the boys deal with, the public school provided them with a para to help facilitate the social aspect of their education. I provided the para during college so that they continued to learn how to function in an unstructured social environment. Did they lose points in classes because they did not behave appropriately or refused to participate in group activity? Yes they did. Was their behavior due in part to their autism and their annoyance with things social? Yes it was. Was it fair to downgrade them? Yes it was.

Oh no, how awful of me? Well requirements for education are requirements. In today's world you cannot sit in a little cubicle and just do your work. You need to know how to talk to people. You need to know how to interact appropriately. You need to know how to give speeches and presentations. You need to understand how to make yourself heard and even know how to advocate for yourself in an office. But you also need to know how to do this with respect, dignity and in a way as to not insult those around you.

One of the classes in which CM1 lost points was in an art class. He refused to participate in the art class discussions of other student's work (this was a class requirement). And when he did join in his criticisms were not constructive but quite mean actually. Yes we had provided a para, but unfortunately that para was not very helpful. CM1 would not listen to instruction and resented having to participate. Could the para have done better? Perhaps. But that was not the teacher's issue nor her fault. It was ours for hiring the wrong support person. CM1 lost half a grade for the class. OK he ended up with a B+ (not exactly shabby). Yes he had received an A for his artwork but he did not meet one of the main requirements for the class. He received a C for behavior and participation. If it had been a job he could have been fired. It was a learning experience. A teachable moment. Something he needed to learn.

The same thing happened with CM2 in a class. In his sociology class he received a B for the course. He had academically earned a B+  but received a C for behavior and it brought down his grade. We tried to use it as an teaching tool for him too, so that he learned to understand the importance of appropriate interaction and behavior. Sometimes he gets it and sometimes he still doesn't. But at least it is embedded into his psyche that this is important.

Now most of the professors have been pretty lenient at the college and understand the boys issues. But if participation is required then it has to be done properly. CM1 just gave a presentation in his polisci class (very appropriately done) and CM2 has to participate in his creative process/dance class. CM2 had to participate in group work during last semester's math class too.  If there is group work, they need to work properly with others and learn how to coexist in a group. They need to understand social relationships and the social contract. (Hint: CM2 does really well in a group scenario when he is the only male and everyone else is a pretty female...just saying.)

School is a safe place to learn all skills, especially social skills before venturing out into the real world. No one is going to give our children second chances nor allow them any leeway if they cannot manage the social aspect of a job. Teaching them how to manage the social part of the real world begins from day one. Schools are not wrong in requiring social, behavioral and emotional skills as part of their education criteria. What the problem is, is if the schools do not support nor teach these skills to the students that need them and only downgrade them for their deficit.

It is also not helpful when parents, thinking that they are being supportive of their children, decry the social aspect of an education. (They remind me of the parent who refuses to acknowledge that their children can do anything wrong..the "not my child" religion adherents) They would allow their children to be infantilized simply because one aspect of an education is hard. If their child needed tutoring in physics they would hire a physics tutor. Well they need to hire a social tutor for their children who need that help. Everything is not about hard facts in life. Real life is much more nuanced than that.

The wider world is a huge social place. To decide that your child does not need social skills and that it is not worth their time and effort to learn them, takes from a child the right to decide their own future. What anyone understands from my blog, is that it is your obligation as a parent to make sure that your child can be anything they want to be. It is up to you to make sure they have learned all the skills (social included) necessary so that they can have the future of their choice.

Shame on the parent who only makes excuses for their child instead of doing the hard work of parenting.



Elise

Happy International Women's Day...Not So Fast

March 8 is International Women's Day. Time for everyone to laud themselves about how terrific women have it in the world and how accomplished they have become. Funny considering the vast majority of women still remain uneducated, live in poverty, under the tyranny of oppressive governments and misogynistic cultures. Once again the FIRST WORLD congratulates itself with its own self-importance.... Here are my tweets in honor of International Women's Day:




















































































































Notice how even the FIRST WORLD has some gender issues to solve ....


Elise

Thursday, March 7, 2013

It's Always Something

As many of you know, CM1 was accepted to the masters in computer science program to which he had applied. Thank you for all those congrats and well wishes. But as we always say.... there is always something....

CM1 and I called the adviser to find out what his next step happened to be and we found out that unbeknownst to us the program was on-line and the only sit-in classrooms are at another campus almost 1 and 1/2 hours away. So my first thought was, what about interactions? What about social networking? What if he had a question and needed to see a professor? How is a professor who has never met him going to give him a recommendation for a job when the program is all over? How is he going to join professional clubs and interact with his peers if he is sitting by himself all day with only me as company?

Now I do not mind my son's company. I crave it. But it is simply not healthy for a 22-year-old to sit all day, every day, with just his mommy for company. So I figured maybe he needs to get a  job or a volunteer opportunity. In fact a Facebook friend just commented that that is exactly what he should do. She even provided me with a volunteer idea.

Meanwhile I went on line and looked at the on-campus courses and their times. It turns out that all the graduate school courses are given at night, after 6 pm anyway. I am assuming that that is because the college figures that every grad student is actually working and attending school at the same time. It's also probably why a full-time schedule is considered only 3 courses and not 5 like in undergrad.

Once I realized the entire story about the program I calmed down...somewhat, well not entirely but I am getting better. Honestly, I suppose my own experience in grad school colored my perception of what would and would not be happening with CM1. (But it would also have been nice if someone had told us when we applied and when he went for a campus visit.) Having attended law school, you are required to be in your seat, take five classes (or more) a semester and they do happen to make it rather difficult for you to work if you attend a full-time program. So I was truly overwrought somewhat when I heard about how CM1's program was run. But I gave myself sometime to regroup and after a night of sleep and looking over the program I am much much much calmer.

Meanwhile simply because I was bothered by the on-line reality of this program, doesn't mean CM1 was upset at all. CM1 was actually overjoyed.  Class-time is very difficult for him because of the social aspect and I know there is some kind of relief in the back of his mind. Problem is, is that it's not necessarily good for him simply because it is easier for him. So we will see.

I am wondering how to get him to the actual other campus to see if he can join groups and meet some of his peers. So I have a new project and need to figure out issues. CM1 doesn't want to go because its in NYC and he hates NYC. It's too much for him. Too much sensory overload and just too much of too much. Heck NYC overwhelms the average person who is not used to it, never mind those with sensory and auditory issues. But I am determined to figure out a way to get him involved in that campus. Gonna think and bide my time and get hubby to brainstorm with me.

Also I asked the adviser how accommodations work on line and she had no idea. That is not a good sign either. But she is going to find out.

As I said at the beginning...it's always something isn't it?


Elise


Friday, March 1, 2013

My Semester with an Asperger Syndrome Student

I came across this post from 2008 on the website Inside Higher Ed. It is an honest look at how a professor handled a student he thought had aspergers. The article is not just a thought provoking look at just what educators should actually do to support students on the spectrum but also how in many cases they are also hamstringed by privacy rules.

Read My Semester with an Asperger Syndrome Student here.


Elise