Friday, May 28, 2010

MEMORIAL DAY: REMEMBER FREEDOM IS NOT FREE

A moment to pause and reflect outside the daily world of autism. For all those that gave their last full measure of devotion.





Until next time,

Elise

Wednesday, May 26, 2010

Conservative's Snarky Ignorance and Using the "R" Word

Please go to this url for the post.

Of Brain Scans, Therapy and the Right to Dream

I have to tell everyone that I generally stay away from too many controversial issues surrounding autism and its causes. I for one do not think vaccines caused my children’s autism. I did not need Wakefield being brought to task by the English General Medical Council or losing his medical license to know that. Knowing what I know now about autism I can sit back and look at old home movies starring collegeman and see everything that would have predicted his autism from early on in life. I know they say hindsight is twenty-twenty, but I think that the CDC's list of issues to watch for is so very important. Even collegeman’s pediatrician did not see it and she was a developmental specialist. Needless to say, knowledge of autism 20 years ago is not what it is today and I know for a fact that that doctor will never miss another autism diagnosis in her life ever again.


What I find so interesting to write about today, is some new research that was written up in the Wall Street Journal. There was a study done that showed how babies who were prone to autism used their brains differently than NT babies. The entire left side of an autistic child’s brain does not function. What the article goes on to discuss is how both sides of the brain are necessary to develop appropriately. That the left side is for dictionary understanding of words and the right side is for the accumulation of social understandings. Scientists are theorizing that when the left side shuts down then the right side takes over the dictionary understanding but cannot handle both jobs at the same time. Therefore, social acclimation gets lost.

The ability to read brain scans and understand how the autistic brain works and why it works the way it does is a leap in the right direction. The article also says that with this understanding that you can see the autistic brain almost from birth, it can then lead to earlier and earlier diagnosis which means future generations can get the help they need at an earlier age even than 2 or 3 years old. In fact the only reason that it may take until that time today, is that doctors need to see the symptoms of autism before they do anything about it. But if you can prescreen a child then there can be immediate help and understanding.

I liken it to amniocentesis. The idea behind that test is to prepare families for genetic abnormalities that the unborn child may face and to allow families to prepare for the eventuality of the needs of that child. Many people say that such a test has led to eugenics because most children, almost 95% of those with disabilities, are aborted by their parents. Many autism activitists are afraid that the same will happen to unborn autistics. While there is always that fear that society uses their medical knowledge for inappropriate causes, it cannot stop the research and development being done in the name of our children.

I remember a wonderful play called the Twilight of the Gold’s. It was about a young woman who through genetic testing found out that her unborn child had the propensity to be gay. The entire movie dealt with social stigma, ignorance and hatred. I think that it is a movie worth watching for it bespeaks many fears and realities that many communities face in our world, not just the autistic community. In fact in China and India where they can abort due to sex, there is a dearth of marriageable females.

But medical knowledge needs to keep moving ahead. I suppose one of the main reasons that I am so adamant that we get past the vaccine as cause issue is that the autism community as with any community has just so much money to allot to any research or idea. I believe that money would be better spent on looking for real causes, whether it’s genetic, environmental, and evolutionary or a combination of things that we have never even thought of.

I believe that we need to spend money and time, again a finite commodity, on preparing the world for the community of autistics that are going to be coming into adulthood over the next decade. While in the State in which I live there are programs for the severely disabled there is nothing for those that inhabit the twilight world of my boys. The Special Education Director at our highschool used to say that the boys were neither fish nor fowl. They are too high functioning for government help, other than what the school provided, but not without issues to function in the neurotypical world. So as we expand our support of the severely affected, society needs to gear itself for those that are coming of age, who are just slightly out of kilter, like my boys. Again where is all the money going to come from if we spend it on nonsensical research?

Yes I know that I said the neurodiversity is nonsense and I still believe it. This is a totally different topic. Helping those become members of society is not accepting that they can do anything they want because of a disability or that the disability entitles them to certain excuses that NTs cannot make. Also leveling the playing field is fairness, not an excuse. (You can reread those blogs here and here)

I find the new research exciting and I am so glad that it is finally taking off. I am glad to see that the scientific community has gone beyond a small group of persons who wanted to control an entire population and how that population and its causes are perceived. I am glad that there are reputable researchers out there who aren’t afraid to tell parents; yep it’s your genes that did this to your child. I personally accepted that fact decades ago. Now I want the scientific community to research their brains out and find out the real causes of autism, so if we can’t cure those alive today, we can possibly prevent autism in the future.

You bet I want a cure. Do I think its doable today? No I do not. Can a child get better with therapy, heck my own boys are living proof of that. There is a wonderful book by Elizabeth Moon, called the Speed of Dark. It’s about a magic pill that can cure autism and what happens when it is given to a subject. I have had many discussions with parents about whether you would give that pill or not to your children. My children would not take the pill. They are who they are and they like who they are. I am happy to hear that especially since such a pill does not exist and there is no such pill on the horizon. But if that pill did exist I would crush the damn pill up myself and put it in their favorite chocolate cake so they would ingest it without their knowledge.

Yes I hate autism. I hate it with every fiber of my being and I am not ashamed to say it. I think any person that says they love autism because it is a part of their child is fooling themselves. I akin it to cancer. If your child had a life robbing disease like cancer would you love it? It is a part of your child just as the autism is. For some reason parental guilt I think plays a large part in how people openly discuss these issues. Not wanting to seem like they don’t love their children, and that they are totally accepting of who their offspring are. I think they need to deal with reality a little better. I say I hate autism because I love my children. Autism robs them of who they were meant to be. It makes it overly hard for them when accomplishing any task or working towards a goal. Autism deprives them of the simplicity of life.

Don’t’ tell me they were meant to be autistic. Balderdash. I no more believe in that, than I believe you should give birth to a child with Tay-Sachs just to let them die a horrible death, because it is God’s will. We fight cancer, MS, lupus, cystic fibrosis, etc, so why is it a crime among the autistic community to say you hate autism and you want to eradicate it and fight it? Just because autism doesn’t mean you end up on a ventilator or dyeing in pain doesn’t mean it’s not painful on a day to day basis. Doesn’t mean it is not devastating in so many ways, educationally, emotionally and in a devestatingly human-way. It takes from our children their human right to be wholly connected and to feel a part of the world. They do feel as if they are on the outside looking in, no matter how much they do partake in society. There are some things that they will never get and that will forever be beyond them. Somethings are what they are as well and as empathetic as they are, and as funny as they are, and as typical as they could be a times, they will forever be autistic. For that alone, I hate autism.

Or maybe it has to do with the fact that when collegeman was 9 years old, the only thing he ever wanted to do was serve his country. He wanted so very badly to go to West Point and become a military officer. He loves his country so much that he truly believed and still believes in honor, duty, country. But how do you tell a child that because of their disability, because of their differences, that their country does not want them? Because that is it in a nutshell isn’t it?

Now I understand the medical issues, I am no fool. I understand that he cannot be relied upon with seizures and the need to take medication to focus. He cannot protect his fellow soldiers in a fire fight if he hasn’t taken his medication. So I am not saying that the military is wrong, I am saying I had to find a way to teach my son how he could serve his country without telling him his country does not want him. So we settled on pushing him into a legal career so he can protect the victims of crimes and help those unfairly charged and convicted of crimes as well. Yes, collegeman wants to have a hand in changing and saving the world.

You see it is different when you have a child that may not get into West Point or Annapolis because they didn’t work hard enough in school or was laxidasical about what they needed to do in order to prove themselves worthy of attending a military academy. It is totally different when the reason your child can’t attend is through no fault of their own, but only the luck of the genetic draw. So on top of everything else we have to deal with in helping our children learn to function with their autism throughout their life, we have to deal with the fact that our children need to remember that even if their dreams are changed because of their autism, that they can and have a right to still dream.

Monday, May 24, 2010

You Know It Never Ends

Note: This blog was written before the issue got resolved. but resolved it has been and is discussed at the end.


You know it never ends. You would think that by now, the highschool would have an idea about what kind of support HSB needs and doesn’t need. Tomorrow is a special program called “Seminar Day.” This is a day where there are guest speakers coming to the school and there are special classes that every student can attend. HSB picked out his seminars last week and is very excited about the one on Zombies. Yes, I have written about his love of zombie mutant killer games before and it hasn’t changed. We had to get the sequel to the original game for his birthday…Yes, he is all boy. But if you ask HSB it has to do with a post apocalyptical world more than the zombies…yeah right.


In the meantime, I get an email from his case manager that he will have no coverage for keynote speakers in the gym and during the huge barbeque on the soccer fields. Considering that HSB doesn’t go to assemblies in the gym because of the noise and the overwhelming sensory issues that are associated with it, I just figured that they assumed that he would spend that time in the resource room doing homework. But no he has to attend the keynote address. It is a requirement for tomorrow.

So he is supposed to go from his class for 15 minutes where he receives his schedule to the gym for a speaker, who by the way is an arch liberal. If you know anything about HSB you know that he is just slightly to the right of Patton and would not suffer that moron from the New York Times very well. (How liberal is this speaker? He thinks the President isn't far left enough) Oh yeah, there will be a scene and this man is known for being self-righteous and condescending. Why the school thinks it’s a good thing to bring in such a polarizing figure is beyond me, but I digress into the political stupidity of our educational system. Why the TA could not accompany HSB into the gym and stay with him and help him emotionally through the speech if he needs to go to the speech is utterly ridiculous. She is with him anyway for the first 15 minutes of school. How hard is that?

Then there is the huge barbeque with the entire school of 1200 students on the field for lunch. How do they think that HSB is going to be able to navigate that without help? Do they not realize that the boy doesn’t go to the lunch room because it is too hard for him to navigate when there are tons of students there eating. That when I send him without a sandwich he goes at 10:30 in the morning to get his food so he can avoid the crowds. That he consistently eats in the resource room so he doesn’t feel inundated with the sights and sounds of everyone and everything happening at once. That they can’t even get him to go to the lounge to eat with other students because it is just too noisy and overwhelming for him?

I just don’t get these people. Oh, and one of the TAs they assigned to him for Seminar Day is the one they just got rid of because she couldn’t handle him in the classroom. How do they think that she is going to handle him in a situation that is unfamiliar to him? Now as I said before, I don’t think this particular TA is a bad person, she is just not right for HSB. I am sure she is great with others, but she cannot help him and doesn’t even know how.

So I sent an email to the school. OK here’s the latest:

I am sorry but this is not acceptable. HSB will not handle the gym keynotes by himself and he will definitely not be able to navigate the bbq alone. He requires support for these activities on a regular day, never mind one with a different schedule and especially where the keynote speaker will just emotionally upset him to no end. He will not do well; most probably meltdown and we will have problems. At this point I will not accept that he is reprimanded in any way shape or form if he is not given the appropriate support that he needs.


This needs to be fixed or I will be forced to keep him home because the school did not provide him the appropriate access to enjoy a special school activity. Please fix this.

You know just when you think that somehow people have gotten a handle on how to help your child they go and do something so unbelievable that it just boggles your mind. Now if HSB was an unknown commodity then I would say, Ok, follow the IEP just as it is and don’t give him help outside the classroom, but knowing the child like they do, you would assume that they would take it one step beyond and realize who he is. Also they just might remember a few things about HSB like his avoidance issues. But even more so, considering that we have had huge problems with him over the last few weeks, including several major meltdowns then you would think they would remember because I literally lived at the school again for awhile. But no it’s like they have conveniently developed short term memory issues and I am just supposed to say, oh ok.

I tell you I have no clue what to do with these people. I feel like camping out and making sure that everything goes ok, but tomorrow collegeman goes in for oral surgery to have all his wisdom teeth removed and even though hubby is going along I thought it might be a good thing if I went with my son as well. That the school can actually make me feel that I can’t go and be there when one of my children is having surgery because the other is not being supported as he needs and as they all know he does need, then I think they should be ashamed of themselves. (Ok they don’t know about the surgery, it’s just the position that they put me in right now, and yes once in awhile I can push the drama button too). Truth is hubby really isn’t good if something doesn’t go well tomorrow in the oral surgeon’s office and I know I will need to take the lead.

I truly am just flabbergasted by these people right now. It is beyond anything that I could have imagined worrying about at this time of year. Right now HSB just got back a test on logarithms and he didn’t just fail, he failed with a big fat huge FAIL. This is what I was worried about, not the fact that he would have to attend a speech by a leftist journalist who is going to make a fool out of my child when he yells at the speaker and he will yell at the speaker. Or the fact that he will not get anything to eat for lunch because the bbq overwhelms him or that some kids who can’t pick on him because he has support will see an opening when HSB is all alone.

RESOLVED: OK, so now I received an email that they will assign a TA for the keynotes and then she asked about lunch and I think that is forthcoming as well. Thank heaven they listen. I know I am lucky where I live, but I can’t believe the anxiety at a time when it’s just so not necessary. Oh and apparently that TA they removed from the video film class does go with him to other classes, so its not her, there really is something about that class or even that particular teacher. Hmmm, makes you think just how much a classroom teacher truly does influence how a child does in school for both autistic and NT children.


Until next time,

Elise

Friday, May 21, 2010

Bifocals, Oh Hell, Bifocals

Sometimes its not just about the children.

Warning:If you are a man, unless there is a lady in your life whom you would like to understand a little bit better, don’t bother reading the following blog. Women-folk-talk a happening….


Let me start off this post with an announcement. I am old. I just left the ophthalmologist and was prescribed bifocals. Now, I have worn glasses since I was eleven and contacts since I was 15 years old. But bifocals, really! All I can think of is Benjamin Franklin. I don’t even look good in knickers, but I do have shoulder length hair. Oh heavens to betsy, bifocals. Of course the fact that I could actually tell that I could not see well did elicit the visit to the doctor and I expected a higher prescription but this I truly didn’t see coming.

I guess that is what happens when you spend all your time worrying about everyone else. We run our children from place to place and therapy to therapy. We give them lessons and support and every part of our soul. Of course it’s what any parent is supposed to do, but I just never really noticed the total end of an era for me. I mean that in the sense of my decades and not my children’s.

Yes, I have the looser skin and the flabbier tummy, even though I work out regularly. That little bit extra that makes my jeans just so slightly tighter than I would like. But I also have the complete lack of desire to do without chocolate and wine that would take those pounds away. Oh and I started dying my hair, I found some gray in the front so off to the drugstore for some Garnier Nutrisse number 40.

Yes, I have even entered that wonderful part of a woman’s life called true peri-menopause. Now they say menopause is when your period actually stops, the nonsense right before it is called peri-menopause. That of course could be upwards of ten years before menopause hits. Let me tell you, if the reason we have “women problems” every month is because Eve ate that damn apple sometime ago, if I get to the pearly gates she and I are gonna have a heart to heart. Then I heard about this wonderful thing called the menopause diet. It was written by a doctor telling women how to eat so that menopause was not such a burden. First thing to go is chocolate. Then you are to give up coffee and wine. Then any time you eat a carb, it has to be a complex carb or multigrain bread. (I don’t know about you, but some good old fashioned Italian bread is one of my favs.)Oh and you need to eat a lot of soy. So as you enter your senior years, you give up everything that is fun to eat and drink and exchange it for eating slime. So in exchange for living without bloat, cramps, mood swings and back aches you get to eat like a garden snail. How much fun is that?

OMG. Listen pregnancy was terrible for me. I was very sick and high risk with both boys. The only good thing about pregnancy the obstetrician told me was that you end up with a baby. Well the only good thing about peri-menopause is that you end up in menopause and the damn thing stops for good. I personally have had enough. I am turning 50 this year and I so can’t wait to not have to worry about Tampax and Pamprin and making sure that I have taken that water pill so I can fit into my bra. It’s like I am pregnant every month. Woomph goes the boobies. Its’ simply ridiculous. but we are not done, there's another fun boobie occurrence. When you take off that bra, the boobies suddenlty can play knock knock with your bellybutton. I bet you can add tempo and create a new music genre. There's also another fun happening and that is this little menopause belly. What’s with that anyway? I killed myself for decades with sit-ups and eating right and now look I have a permanent pooch just under my navel.

Oh and then there is the neck. What the hell is that all about? Nora Ephron in her book writes about the neck. Why is it that the neck goes first? I can see lines in my neck that I never knew where there. I put cream after cream after cream and the damn thing looks like an ugli fruit. I think the way they are going to be able to tell a woman’s real age is by the rings around her neck, like with a tree. Only with your neck they aren’t cute and school children don’t want to study them. But they do get petrified at some point.

Oh yeah, creams. There are day creams, night creams, wake up creams, under moisturizer creams, hydration creams, special serum creams, eye creams, under eye creams, upper lip creams, lip creams, creams for older women, creams for younger women, creams for extra special older women (of course I hope to be that at some time in my life, but how special I am, I am not quite sure). Then there is the special makeup that takes away your lines (in other words makes you look younger). There is the make-up with pearl dust and vanilla extract. There is the make-up that blends just so over your age spots and smoothes out your mottled skin. There is the lip stick that never comes off even while you eat. (Sorry but there has to be some kind of drug interaction there and I am not sure I want that on my body)Then of course let’s not forget the serum of the ages, the wonderful syringe filled with botulism-botox. What is that all about? Wrinkles are so horrible that you put poison into your body to get rid of them?

Now let’s also not forget all the other tests that you have to start doing. You have been going for mammograms since you were 40, right? You should have even had a base line around 35. (If there is even a hint of cancer in your family your butt had better be going even sooner). But now there are some new even funner tests. Ever had a pelvic ultrasound? Where you drink a gallon of water, can’t go to the bathroom and then they stick an internal ultrasound wand into your vagina? That one is great. They use it if your periods are irregular; you are bloated or have pain in your nether regions. Of course, it’s a heck of a lot better than ovarian cancer, but not really a fun time on the town.

Then of course, there is the wonderful colonoscopy. I happened to have had one already, there is colon cancer in my family, so the doctor sent me at 45. I get to go again this year. It’s really not the colonoscopy that’s so bad. For that you get sedated-Yeah you get to sleep for 30 minutes and no one is bothering you- there is an upside to everything. OK, I have to tell you, I really don’t mind the sedation. It really is a good sleep and no one bothers you while it wears off. Since sedation affects me heavily, I tend to get 24 hours all to myself. It’s the prep for the damn thing that is well, disgusting. You start by eating only white food for 24 hours, and then liquid the day before with stuff that makes you and the bathroom best buds. Of course, having children with finicky eating habits, like an all white diet, most of us are probably well prepared for the prep anyway.

Then another wonderful personal thing to look forward to is that all important, hormonal change that effects your facial hair. Remember your aunt that used to come with the one long hair growing out of her chin. You are now her, only you will use a damn pair of tweezers and rid yourself of the hair. I tell you, every day I awake and if I didn’t use wax or Nair or tweezers, I could have a second job as the bearded lady of the circus. I actually like to compare myself to a Yeti. It does sound a lot more exotic than comparing myself to my Aunt Gertrude.

Shall we talk about the arthritis and the creaky joint? Yes, a lot of us have that for awhile now, especially those of us with fibromyalgia or lupus. But when you hit that 5th decade something happens and you change. It isn’t just creaky and achy in the morning. You have to let out a huge kvetch when you get out of a chair. It’s what propels you forward out of the chair. I swear I sound like a little old Jewish man on Miami Beach. Next thing you know I will be wearing my pants under my armpits, walk around looking for an egg-cream soda, and calling everyone who annoys me a “basterd.”

My bifocals will be ready next week.I threw the AARP card in the garbage.

Until next time,

Still not able to see clearly apparently,

Elise

Tuesday, May 18, 2010

Stress Be Not Proud

One of the more frequent occurrences for HSB at this time of year is the fact the he decides that school is over. It’s not over by a long shot, he just decides that he’s had enough and stops doing his work. It has been this way since he was a little boy. Around April, I would say, he has held it together since September, with minimal beaks, and he has come to the distinct conclusion that school is done. He can’t do anymore. He has had enough. He’s finished for the year; the fact that there are two more months of school doesn’t really register with him.


The truth of the matter is that for all of our children the fact that they have to be on for at least 8 hours a day is beyond difficult for them. There is all the sensory input that they can’t assimilate. There are all the new educational skills that take them extra time to learn. There is the physical activity that they may not be able to keep up with. There are the social problems that just get worse and more daunting as they get older.

There is just so much for them to deal with on a constant basis that by early spring, they’ve had enough. You would think that by the time HSB was a junior in highschool that he would have been able to handle the day to day stressors a little better than he did, but I have to tell you it’s been a rough year. I remember collegeman and his junior and senior years. I chalked it up in retrospect to incorrect medication. He had been on meds that in fact made his anxiety worse instead of better. So that made the poor kid suffer even more than he normally would have. But nonetheless, collegeman always strived and worked and drove himself to the brink with his worries about school. HSB is so different. He doesn’t strive and work even harder when he gets overwhelmed he shuts down and shuts down completely.

Now this is different than the previous post about gaming the system. For HSB it is a two tiered situation. He likes to play the game and get extra time when he doesn’t feel like doing the work or makes excuses for not doing the work. But alternatively he also just doesn’t have it in him to do anymore. Unfortunately the only way to parcel out which is the “temper of the moment” is to know that when he plays games with the teachers, it’s about the system, but when he has a meltdown you know it’s about his need to be done with school.

Yes junior year is a biggie in the annuls of school. It’s the first year that the student takes the college boards (unless your child is taking the SAT2, then that can actually start right away in freshman year). You start with that wonderful PSAT that we all know and love in October. It sets you on the direction for the year and what extra studying is going to go into your world. Of course, for HSB he had actually been working on the ACTs for a year, since last summer. Not a lot but every once in awhile and with more of a push when he got closer to the test. Now it did pay off for him, because he got a great score, but it is very stressful.

Additionally most students, not HSB, but others take a myriad of AP classes, which is supposed to get them into a better level of college. It wasn’t really that HSB couldn’t do the work if he had to, but I felt there was no need to add to his anxiety. Regular highschool is sufficient. He can do college level work when he gets to college. I am also singularly alone in my town with this thought. When I tell other parents about HSBs classes they all assume he is taking AP considering he is a junior.

But then that leads me to another point about just children in general. I remember when the boys were young they were scheduled to the hilt. There was something every day for both of them. Now with our children the truth is we are trying to give them some semblance of a “normal” childhood as they also are dragged from therapy to therapy. So in between social skills class, and psychotherapy and OT we also go to tennis lessons, horseback riding lessons, karate lessons and religious school. I can’t tell you how many hours I just lived in my car. No I did not carpool. Not because I couldn’t have used the help, but because I had enough carting my own children around, I had no need to be responsible for the foibles of other people’s children. I am adamant that with all the carpool stories I have heard there is just another level of social crap that neither my boys nor I needed to tell the truth.

So off I would go on my merry way into Mommy Taxi land and make sure the boys were where they were supposed to be. Now that also did not include the fact that they also had homework to do when they did eventually end up at home. Sometimes they were able to take the homework with them and complete it either on the car ride or in the doctor’s office, but there was always just that one little thing left to do.

Now one of the side effects of all this therapy running around was the fact that the boys really did not play any team sports. Well, the truth is that their aspergers made it very difficult of them to understand how the rules of the game are played and how players interact with each other on the field, so team sports were not going to be their activity anyway. What this did was basically sideline them for any and all team sports throughout their education.

I am not sure how it is in your town, but team sports are not just kids in the park anymore. It is a highly competitive, in your face, misadventure with parents being the most type A nasty asshats you would ever want to meet. Of course we all hear every year about the parent that gets thrown out of their son’s (and now daughter’s too) little league game because they yelled at the ump, but I am talking about something totally different. This is competition on steroids. This is life and death to these people. It is not just the trophies and the bragging rights. It is all about the sports that get your child into the Ivy League school (with scholarship of course) so that mom and dad can put that sticker on their car.

Well around here it’s also about just the Ivy League sticker too. It’s why there are some kids that take upwards of 5 AP classes in the junior year of highschool. Talk about stress. Talk about having skewed priorities. Between, sports, volunteer work, hours and hours of homework, and then the internships in the field of their choice, it is not a wonder that these children exhibit huge stress levels. Someone mentioned to me the other day that these kids are expected to have a curriculum vitae of a middle aged person in order to get into a top university. There is no way it can be done without harm to the child. Sorry.

Perhaps it is one of the upsides of having a child with aspergers. We did not get caught up in the go, go, go mentality in such a way that we pushed our children beyond their true limits. The fact is I am still trying to figure those limits out for each boy. I don’t think that all the running around I did when they were little was a bad thing. But after a few years of that I even stopped it, because I couldn’t cope. However, I can tell you we are all really just happy right now with very few afterschool activities and a closer therapist. (OK the therapist is also doing well by them and they both really like him, so that is the ultimate decider, not just proximity. But the proximity really helps too)

I think it all comes to ahead at one time or the other. I had my epiphany about running like a maniac years before the boys entered highschool. Gave them what they needed but also realized that they needed to just do nothing as well. I think sometimes that the idea that they should be bored is seen as a bad thing. I remember when I was bored as a child I actually got to use my imagination and make up things to do. I actually sat down and read a book or even wrote a book on my own.

There is no time for children to just be children anymore. It’s always time to be on. As I said earlier HSB is done being on by April. Of course where school is concerned he needs to be on for about eight more weeks, much to his chagrin. So we push him and we have him work through his need to stop. In life you have to complete what you are doing and truthfully you don’t get breaks to just hangout and do nothing, not anymore. Even on vacations there are ways for people to find you. Brilliant-computer-sis just lamented to me that on a recent flight because the plane is wired and everyone knows it, she had to continue to answer client emails instead of just sitting quiet and being left alone for a few hours. It just doesn’t stop. It never stops.

But it has to stop at some point. It has to be reined in. Especially for our children’s sake. This level of anxiety and stress is not healthy. It is not good for anyone to be in a continual cycle of go, go, go. So I am glad that there is very little that we do now after school. There are tutors and there is the therapist, but other than that we really do nothing. When the boys are done with their work, they go exercise and play their video games. They are allowed to be just kids and do “kid nothing.” Perhaps I don’t understand the type A parent mentality because the boys were not destined for Ivy League Universities anyway so many might say I have sour grapes. But I don’t think so; you tell me if you disagree. I think one of the things I learned from my boys having aspergers is that somethings that society may hold dear are truly not that important in the long run. That you need to create a world in which you are happy and in which you are successful at your own pace.

I still remember one day sitting at a tennis lesson and there was a really nice kid there who had just been put on the tennis team. But instead of congratulating him, the boy’s father yelled at him for not winning his swim meet. The boy came in second instead of first. I will never forget the crushed look on that child’s face when that father through the boy’s tennis accomplishment in the garbage. I felt so bad for that child and very angry at that father. The mother even made and still makes excuses for her husband’s attitude always saying it’s the father’s desire for the children to accomplish this or that goal. Never out of these parent’s mouths though, did they ever say, it’s the child’s desire to do something. It really is all about the parents isn’t it.

But in the meantime, I just got a call from HSB’s case manager; he does need to get himself back in gear for the last month of school. She is going to have a talk with him. He may want to shut down but he can’t. I know he has had enough but he needs to buck it up. I know that he needs the summer to start, but it’s just not time. I am making sure that he understands that you need to reach the finish line. Slow and steady wins the race. Slow and steady and then he will get to sleep to noon every day for two months. I think he will need just a little more hand holding than normal. It's been a tough year for him. but we'll help him through it. In truth he has no choice.

Until next time,

Elise

Sunday, May 16, 2010

Gaming the System

In continuation of my last post, I talked to hubby about the fact that HSB was gaming the system and that he had accused the administration of his school of being biased against persons with aspergers syndrome. I thought that they had always treated HSB fairly and were willing to help him, but then hubby had a different take. His reaction was surprisingly to side with HSB. Not that I am surprised that he sided with his child, but he usually doesn’t broker any nonsense from either boy.


He’s a pretty smart kid, hubby said. He probably understands more than you think. The reality is, is that the administration knows that HSB has aspergers. They do understand it somewhat and what they don’t understand they try to understand. It is not one of those schools where because a 14 year old draws a picture of two stick figures one with a gun, they are going to charge the child with making terrorist threats. We leave that for the morons in Georgia. They truly seem to care that HSB get with the program and do try to figure out how to accomplish this.

Last week HSB had another meltdown in that same film/video class. I was adamant that he not get in any trouble this time so I wrote a letter to the school and quite frankly in a very gentle and non-threatening way, outlined what had happened.

I wanted to reiterate some of the points we talked about before HSB went back to class. There had been a protocol that had been established in our last meeting whereby the TA would meet HSB outside, and find out before hand what was going to happen in class that day. She was not where HSB was when he entered the school and when HSB asked what was happening no one knew or was able to give him an answer. In the event that there was an open ended answer to “what we are doing today” the TA was responsible for trying to schedule him and create a program for him to follow, “not just turn off the game and put away the homework” instructions. She was supposed to know beforehand and figure out how to help him over that hurdle. Unfortunately that did not happen today. He then proceeded to try to do homework, while everyone did their own thing and started to perseverate on his history homework, which was a problem for him. That shall we say is the moment when everything fell apart.


While HSB did have a meltdown in class today, the protocols that we set up where not followed. Also there was no psychologist called, nor his case manager. These were the protocols that had been established and have also been in his BIP since freshman year.


I know that I have asked for a different TA and that has not been forthcoming, but I am at a loss as to what to do other than to change support for him. He has been doing exceptionally well in his other classes but there is something here that just is not working for him and quite frankly it is not the fault of the autistic child when those around him do not follow the protocols and offer him the support he needs. Of course, this is between us, as HSB is always told that he is responsible in the world for how the world perceives him and for following the rules. However, the issue still remains that he is not being supported appropriately in this class.

I did get a response and they did change the TAs. Now I do not know whether that will help or truly what the real problem is in that class, but as long as the school is making an effort to fix the situation I am not inclined to think badly of the school. But then again the hubby does have a point. Why are they giving him detentions or even threatening any student with ASD suspension if they know that they just can’t help the situation. Whether it is sensory overload, anxiety issues or lack of interpersonal skills, the child with autism needs to be taught not punished.

I know when HSB goes into meltdown mode, he gets so anxious that he cannot even remember what he did or said during that period. Truthfully it’s not a good thing and as I have written before. It is one thing to have a meltdown when you are 6, 7, 8, years old. It is quite another to have a meltdown when you are 16 years old, 5 foot 8 inches and almost 200 pounds. He does need to employ his self-help skills and try to realize what makes him upset so he can remove himself from the situation before it gets really bad where he can’t control himself. But as I have also written before as well, if a person with aspergers has trouble reading others emotions what is to say they will not have trouble understanding their own emotions. That is where the TA comes in and that is when they are most needed. Not to make sure he is taking notes, but to keep him emotionally in check especially the closer it gets to finals.

Now another problem we are having is a typical one for this time of year, HSB is done with school in his head emotionally. Since collegeman is done with his sophomore year HSB is very jealous. He actually even said so. That of course could be another reason he is not doing well at the moment; a conflagration of needing to be done with school and seeing that his older brother already is. But we told him only 20 more days until finals and he truly only has three tests this year. Not like last year, where he had five regents exams one of them in two day parts. Whether it mollifies him enough to get him to buck up a little I am not sure. But we are going to try to help him as best we can.

The issue of whether the school is bigoted against persons with aspergers is still up in the air as far as several members of my family are concerned. I told HSB that that is not so. What it is, is that he needs to be responsible for what he does and figure out how to help himself. We and everyone around him will help him. Society does not give you a pass. (That was the point of my previous post about neurodiversity).

The next issue I have is that HSB while being angry with the fact that he thinks the school is biased has learned to take advantage of the system. While he does get extra time for tests and goes to the test center to take his exams. He also takes them over a period of days. He actually will go back over several days to finish a test as well because he uses up all the time he is allotted. That is ok; he is entitled to the time. But what has started happening is that HSB has decided to take his time doing his homework and handing in assignments as well.

The other day he was supposed to have read the end of a novel and have an in class essay about the book. He said he forgot to read it, even though we told him constantly and reminded him even before he went to bed where he said he was going to read. He instead played on his iphone and Nintendo DS. The teacher let him off the hook and he went on to read during class while others took the essay quiz. Not really sure I liked that. HSB just didn’t want to do the homework, not that he was incapable of doing the homework. Very different things and quite mutually exclusive.

Alternatively in history he was supposed to hand in an eight page paper about the cold war. Now he does have a language based disability and does need help with writing papers. He was given the rubric and the instructions just like everyone else. He was given the time and sat with the teachers on how to do the paper. It did overwhelm him the amount of pages required. So the teachers did cut back his assignment to five pages. Hubby did sit with him and help him write the paper, but I am not sure that cutting back the assignment for him was a good thing. A year from now HSB will be in college and when the professors assign an eight page paper, it had better be an eight page paper. What he needed was for someone to sit with him and help him parcel out the amount of information to write about when it came to writing such a long research paper. But once he got the assignment lowered to five pages, there was no way you were going to get HSB to complete an eight page paper.

The same thing happened in chemistry class. He waited until the day that the assignment was to be handed in to try to do it during a free period. He did not have enough time to finish, so they told him he could hand it in late. The teacher, who is a doll, was concerned that he didn’t understand the material and even offered to help him with the homework. It was to be graded after all. I know that she would have done that with any student but it seems to me that HSB is playing the game and figured out how to manipulate the system.

Meanwhile, he did meet with the chemistry teacher. He did finish the chemistry homework and he did take the chemistry quiz that had been schedule for that day. We are waiting to find out what he has to do for the English assignment he missed and he is also missing an open book algebra quiz.

I know here that the teachers are trying to be nice and understanding. But at the same extent I don’t think they do him any favors when they make excuses for his not doing homework on time. On the one hand, the administration holds him to a behavioral standard and on the other hand the teachers make excuses for him. What he learns is that you can fool some of the people some of the time, you just need to figure out which ones are the ones to play.

Told you he’s really smart. He figured out how to game the system all on his own. No one led him there, but he learned. What we need to do now is make sure he understands that he is not to do that throughout life. That it is truly not honest. That it is one thing to receive accommodations to level the “playing field” when he takes a test. It is quite another thing to play the teachers and the administration to get what you want and to manipulate the system.

When HSB was really little, I say between three and four years old I took him to see a psychiatrist to try to parcel out the real story as far as his disabilities were concerned. The doctor spent all of 15 or 20 minutes with him and then sat me down for a chat. “Beautiful child,” he said. “Highly intelligent child,” he said. “Was trying to figure me out and how to play me from the moment I walked in the door,” he said. “With that smile and those big brown eyes, “he said, “make sure you have teachers with steel spines or he will manipulate them and wrap them around his finger without fail.” I guess that still holds true for highschool juniors as well as pre-schoolers.

I know everything that the teachers do for HSB is because they like him. I can’t tell you how many people tell me how charming and cute he is. So that is fine. Let society find him that way. I don’t mind. What I mind is when he takes advantage. It is a form of dishonesty in my book. I need to stop him from turning into a person I definitely would not like.

Add this to my issue list…so tell me when does the list shrink? I am still waiting.

Until next time,
 
Elise

Wednesday, May 12, 2010

Neurodiversity Nonsense

Oh no, blasphemy I have said the unthinkable. Here is a parent of two-neuro-disabled children and I think that the entire idea of neurodiversity is a sham. I also don’t need hate letters from persons in the neurodiversity movement who think I am now akin to the anti-Christ. There is wishful thinking and there is reality. There are societal codes and there are laws and regulations by which to live your life. I think in many respects I really don’t like the neurodiversity idea because quite frankly it’s about giving up.Listen I am not talking about those who are tremendously impaired, society has to make room for and help these people. I am talking about persons like my boys who have the potential to fight for the life they want and not have to settle for a life that someone else designs for them.

The neurodiverse crowd says, oh you as a neurotypical, even though you are the parent, you don’t understand what they go through. No, I do not feel the internal struggle of what my boys go through, but what I do know is that they need to function in life in order to have a life. The idea that because they have aspergers they can get away with inappropriate behaviors tells them that they are less worthy in life. There are rules for those who function in society and now there are rules for those who are outside the normal chain of events. This is not acceptance this is infantilization.

I wrote recently about the professors who don’t give collegeman the benefit of the doubt that he could perform in a classroom because there is group work involved. I wrote how I despise that attitude that he can’t do because of his autism. How is what the neurodiversity crowd want any different? How is it not infantilizing someone like my son? How is not saying that they cannot function in the real world? That the world must change for them or else the world is bigoted? The world isn't bigoted, the world is moving along at its own pace and its up to those with disabilities to keep up.It's nothing personal. It just is what it is.

The neurodiversity group says well, everyone should be accepted for who they are. True enough. That was the same language used in the civil rights movement. That is the argument against affirmative action today. Everyone should be judged by who they are not by what they are. They should be judged by the accomplishments. Everyone needs to be on an equal footing. Well they are not you say. Welcome to the world. Some people just really have to try harder than others. No one said life was fair and no one said that everything in life was going to come easy. You as a human being are not entitled to be handed anything in this world. The only thing you are entitled to is the right to try to make your life the best that it can be.

But if you tell someone for their entire life that they do not have to try because of their disability, their skin color or ethnic origin, they are not going to try. If you tell someone that they do not need to push and push and push to make sure that their life is a success, then they will not. They will accept their own mediocrity and the mundaneness of their existence. Those with neurodiverse disabilities have a right to try to make the most out of their world and have a right to say, I am capable without having to fight for it. They have a right to belong in the world and have a right to fight the good fight.

But once you start making excuses for people because of a neuro-disability then they have lost the right to be grown-ups. Once you start making excuses for our children in their behavior the next level is their ability to think, reason and excel. Oh, you say it won’t happen because they are so smart. Well wrong. There is a difference between being intelligent and being able to function in the world.

I like the saying that Dr. Temple Grandin’s mother used to use about being different not less. But she did not have her daughter use autism as an excuse for failure; it was something to strive against. That if her child was going to succeed she would succeed by learning how to understand the rules of the world and obeying those rules. There were no excuses here and there are no excuses in our world either.

I suppose that is why I am not so thrilled by the use of aspergers as a reason for malfeasance in courtroom proceedings. I don’t know about you, but my children know right from wrong. It is not an unteachable notion that you do not steal, kill or harm another of God’s creatures. It is not unteachable that you do not hack a government computer. It is not unteachable that you follow the law. I dislike it and I resent it. It is like when women used to use PMS as an excuse for murder. It demeaned and belittled everything that any woman would accomplish and gave traction to those that claimed women should not hold office, be police officers or fight in the armed services, for they may go off at any time and PMS someone.

I don’t’ think those in the neurodiversity crowd actually see the long term issues surrounding their movement. It is one thing to be accepted for who you are, and quite another thing when the powers that be pat you on the head and so, oh poor baby. Yes, make accommodations for testing, but remember in the real world, you do not get extended time for projects or an alternative location when working in an office. Sometimes you get a cubicle in the middle of a huge room and you need to learn to function within working parameters. Corporations are not going to function like babysitters. Society can’t function like that. It is one thing to put up a ramp for a wheelchair and an entirely different concept that because of a disability you can screw with a company’s output, timetable and other people’s future. It is why I always tell parents that there are accommodations and there are accommodations that infantilize your child. Make sure you weed out the wrong ones and make sure they set your child on the right path. Make sure that the school works on their behavior and that they work on functioning in society.

Today Highschoolboy told the vice-principal that persons at the school were bigoted against those with aspergers, because they don’t understand who aspies are. I truly don’t know where he got that one from. For all I know he may have come up with that himself. But it was given short shrift by me and he got a talking to right away. I won’t have it. I will never allow it, not in my home. You want to be a part of the world, well you follow the rules. You want to function and be respected, well you follow the rules. Is it hard for you to figure out how to follow the rules, too bad, work harder and learn and practice. Stop feeling sorry for yourselves. Get your head out of your butt and figure out an answer and a solution. If you need help ask for it, I tell him. (Of course, it doesn’t mean that in a learning environment that the school is not also responsible for the appropriate support, but eventually that gives way and the person with aspergers needs to know how to help themselves).

Yes, everyone is different, but the rules are the rules. No one has a right to keep you out. No one has a right to discriminate against you because of a disability. But you need to do your job, you need to perform the way anyone else would, you need to function appropriately. To do otherwise or to say that it is not necessary turns the person with the neuro-disability in to a small child and prevents their right to personhood.

Until next time,

Elise

The Jacket of Rebellion

I originally posted this blog in November 2009. However the jacket issue has once again raised its ugly head. I am totally convinced that when classifying teenagers that biologists should create an entire subspecies just for them. While they may fall under mammalia-homo-sapiens, maybe teenageus-pain-in-the-buttus should be included.

I have come to the conclusion that highschoolboy has reached that apex of teenage insanity that all the childhood experts warn you about. In the past I have regaled you with stories replete with references to the eye-rolling, "my mom is an idiot" body slump, sassy mouthed, girl obsessed video game playing teenager that my highschooler has turned into. However, we are not going to have the "skip a class" moment because I have already threatend him within an inch of his computer and playstation/nintento/Xbox and any other electronic gadget he has attached as an appendage. However, the reason that I say it is now official that he is a full-fledged member of that class of mid-level pre-adult persons is because he is now engaged in activities better described as "cutting off your nose to spite your face."

Let me explain. highschoolboy doesn't like to do anything I tell him. I don't know if it is because I am a bit of a helicopter parent due to his issues or he is just trying to break out in order to develop that adult seperation from mom. Or maybe he is just being ornery. But this morning I told him to put on his jacket. Now we have been telling him to put on a jacket since the leaves turned. He is flatly refusing to listen. It's just amazing that his jacket has become the symbol of rebellion in our home. Let me tell you that the entire episode will be better undertood if you have the history of the progression of the clothes battle.

First he wanted to not stop wearing shorts earlier in the year. I figured that it was an attempt to hold onto the summer when he didn't have too much stress. He also liked wearing the shorts because they are more comfortable than his jeans. There is definitely a sensory issue happening there. So I got him to wear sweat pants instead. OK. so now it is colder and I convinced hm to wear long sleeve shirts, they are soft as well, instead of his polos. I know that many autistic children need to have a specific date on the calendar to switch their clothing routines, but I am not sure that this is that kind of moment. It is not something he has done before, so I am chalking it up to his wanting to be in control of his wardrobe just like any other teenager.

Well the next thing I told him was the jacket. It is now 30 degress outside and he needs to wear a jacket. He huffed and puffed, but I saw him take it with him. As he goes to get out of the car the jacket is not on his body. He conveniently left it in the car and ran into the school. OK, he doesn't venture outside during the day, but a jacket would be a good thing if there was a firedrill or emergency where he would be outside. So the next day I reminded him that he needed his jacket and not to leave it in the car. I was on to him and he didn't like that. Did he think I wouldn't see the jacket in the backseat of the car? Teenage think is not all that thought out.

So here we are in the car this morning and I am dropping him off at school. I told him to take his jacket. He gets out and waives. The stinker has wrapped the jacket around his neck like a scarf. He has flatly refused to put it on. He didn't even throw it over his shoulders. He made no attempt or pretense that it was going on his body what so ever. But he is wearing it in some fashion so I guess he did technically listen. I just need to be more specific next time: "put the jacket on your body with your arms through the armholes-with the zipper in front" kind of specific.

Now we know that highschoolboy is stubborn to a fault. He gets something in his craw and doesn't let go one iota. He is determined to do as he pleases. I could let him not wear a jacket, but in the era of H1N1 and the risk its poses to healthy teenagers I am not about to let this one go. However, I started to think about highschoolboy and what was really going on with him. I know this is not an aspie issue. I know my son well enough to know that this particular issue is not an outgrowth of his autism. In fact, I would venture to guess that if it was his autism in play he would wear the damn jacket because it would be part of his structure. No, I really think this is normal teenage pain-in-the-ass mentality. He has morphed from that cute adorable child in his Winnie-the-Pooh costume into a hormonal, obnxious, rude pre-adult who thinks that nothing can happen to him and brokers no interference in his decision making. I understand that this is a normal stage for him. I understand that he wants independence. I even understand that I am a real embarassment to him, even if he does waive good bye when I drop him off. But when does it go from being normal teenage actions to them just being morons? Or is it sometimes actually one in the same?

I have to say this is a new one for me. At every stage of his development highschoolboy has had an aspie overtone to his actions so there was some way around the issue and someway to address it wthout being head on. I have always found that that was the best way to deal with him. He then comes to his own conclusions and does what is the best thing. But now, I am dealing with a fully underdeveloped frontal teenage lobe that will not cooperate and does not filter consequences and actions as part of the same process. Unfortuantely it seems, the only way to attack the issue is head on..

I do hate having to make this an issue. But there are consequences to getting sick besides feeling really crummy. Missing school, at least a week with the regular flu, never mind the H1N1, when he is already having such a hard time would make it just so much worse for him. And believe you me, that amount of stress he doesn't need. He just really doesn't see that. Like I said no projection of action, and consequences. So what is left. I guess I have to turn into mommy-bitch once again. Why?Because its still my job to make sure he doesn't flounder.

They say as your teen pulls away you have to pull them back. I don't think the experts were talking about jacket wearing as much as they were drugs, friends and unsafe sex. Drugs he knows that with his meds it will kill him to take anything illegal or without a doctor's discussion. Friends he has a nice friend and doesn't like mean people. Unsafe sex, well, he needs a girlfriend first, but we talk about protection and the school does a good job with sex education too. Who would have thought that a damn jacket would be highschoolboy's rebellion? It's actually really quite funny when you think about it. Unless of course, if he gets really sick.


Until next time,


Elise

Friday, May 7, 2010

When You Want to Throttle The Teacher

I have to think that one of the worst things we go through with our children is when the people we entrust them to during the day are total morons. I was very lucky with the boys. That really was not a usual occurrence once we moved to our town. In New York City it was a constant in any school situation. In fact, it was when people actually were descent to collegeman that that was the surprise. But once we moved to our little hamlet, most of those that worked with him actually were quite good at what they did. Now that is not to say that there aren’t people that I have come across that I would have wanted to throttle. Believe you me there is always the asshats in the room, but generally when I complained my complaint was respected and something was done. Where Highschoolboy was concerned it seems we did have more idiots percapita than collegeman, but mostly people worked very hard to find a way to help them.

I have to tell you though that it is not only the special needs child that has problems with teachers, plenty of NT children are faced with ridicule as well. Interestingly of course, it was in highschoolboy’s fifth grade class that the NT children suffered just as he did. It was supposed to be a co-taught class. The special education teacher was to lend support to the regular education teacher, modify curriculum and support the special needs children. Well of course, the first thing the special ed teacher did was take everything that had helped highschoolboy function and change the entire system (she was just so much smarter than anyone else-don’t you just love people like that). Highschoolboy knew no one in his class because of the makeup of the room but she made no effort to integrate him, and decided to leave him on his own. Not knowing how to make friends or talk to people, hello aspergers, he would sit by himself at lunch and talk to himself. Did she do anything about it, of course not, it meant she would have to do some work and actually think.

In the meantime, the regular ed teacher decided she knew what was best for highschoolboy and decided to take it upon herself to let him get away with poor behavior. Now of course, since he wasn’t structured and had no idea of how he was supposed to act, he constantly acted out. I was called to the school so many times, that quite frankly I ended up hanging out in the nurse’s office and we became fast friends.

I had no idea how truly bad the situation was until one day the other children in the class told me what was going on. Luckily one of the boys in the class is our next door neighbor and it bothered him because having known highschoolboy for years he didn’t like how he was not being helped. I then went into action and called the district. They sent an autism specialist to help out. Well of course neither of the classroom teachers liked that under any circumstances. In fact when we had a meeting about how to help him, the special ed teacher hadn’t even prepared for the meeting, actually told her boss who was in the meeting that she had been too busy with family to bother to prepare for the meeting. (Needless to say she didn’t make tenure. But she already knew that she wasn’t being given tenure when she started the year with my son. Why they let her continue to torture him is beyond me. I don’t care about teacher contracts. The school districts obligation is to the students not to teachers especially when they do things that harm the children)

At this point I had a real talk with the Vice Principal. He tried to make excuses for the teachers how they are fighting over my son. He tried to make it sound like they are both so involved in wanting to help him that he was so loved. Bullshit. They wanted control over him because they wanted to control that room. I told him to tell that to grow up. That highschoolboy was the child not them and they had better cut it out or they will have to deal with me.

Now what you have to remember this middle school had been wonderful for collegeman. He thrived and grew during his years at that school, so I knew there were competent teachers around. It unfortunately was not the group highschoolboy was with at the moment. Except that the other teachers on the team, the science and math teachers both knew how incompetent those two were and did try to compensate for all the children’s sake, s best they could.

Well as I said I lived at that school during the year. In fact I told the principal that he was to build me a room with a cot so I could rest when I wasn’t needed to pick up the pieces. The reality is, is that you should not have to do that when it comes to your child. The people that are charged with the education of your children are supposed to themselves be adult enough to function on a level beyond that of spoiled moron. But you do what you have to, fortunately I was in a position that I could be there in that school all the time. Some in fact I would think most are not.

Well, thank heaven for that autism specialist. She rearranged the classroom, created a lunch buddy program for highschoolboy and kept a constant watch on what was happening in that room. She also made sure that they didn’t change their mind about tenure for that bitch in special ed teacher clothing. One of the things that the school district did was to force the special ed teacher to take a medical leave to have some kind of knee operation.This way they brought in a substitute and told the special ed teacher that if she came back she would be placed somewhere else. Which if it was me, I would have taken the full disability leave, but I think she thought they would let her back in and lo and behold there she was one day in another classroom.

Highschoolboy ended up ok in the end. The teachers that he was assigned to the next year were who we in town called the “golden team.” One of them actually confided in me that they had no idea what they were getting when highschoolboy came to them. He was such a mess. They were not sure what he could or could not do and what he could or could not understand. It was without a doubt their efforts and hard work, which helped highschoolboy grow by leaps and bounds that following year.

The ultimate point of the story though has to do with the NT children in that class. They all were suffering because of the incompetence and the stupidity of those two so-called teachers. Highschoolboy’s class was an inclusion class. So apart from 5 designated children in the class, there were every level of student and some gifted students as well. One of the mothers of the gifted students told me that the regular ed teacher had told her son that he participated too much in class and that he needed to learn to not ask so many questions. What he should do was to write down the questions he had during class and ask them at a different time. See an asshat to one is an asshat to all. I think sometimes we, as parents of special needs children, tend to forget that just because your child doesn’t have issues doesn’t mean they are taught by Einstein.

Collegeman had had a wonderful experience with acting in middle school. For his 8th grade class he had performed The Taming of the Shrew. He had played Petruchio in one scene. Now I can tell you that he did his best, and no, he was no Richard Burton, but he had had a good time. Well when he moved up to the highschool he wanted to do theater. The special ed director told him that person with aspergers could not act. Well that is all she wrote. Collegeman has not been on a stage since. In fact I even tried to sign him up in college for an acting class that would have helped with his interpersonal skills. Apart from the fact that the Dean of the Drama department didn’t want to deal with an autistic person in class (see this blog) collegeman really didn’t want to be in the class. So I took him out and studied business law. Of course he got an A and really thrived in that class. By the way that special ed director at the highschool was forcibly retired the following year. Something about parental complaints and, not just mine, and oh a few threatened lawsuits, I think.

Will collegeman ever get on a stage again? I can’t tell you, but he wants to be a lawyer and he wants to litigate, so there is some kind of acting in his future, we just aren’t going to call it that. I know that he is not afraid to voice his opinions in class and that in his recent law class as a jury member he was complimented by the teacher for his argumentative ability to get his point across. He brought up case law and definitions and missing facts from the case to try to sway the other jurors to his side. He lost, but he was the only one that applied law to the case. I think arguing is definitely in collegeman’s future. Shakespeare maybe not, but then he truly wasn’t another Olivier, no matter how many acting classes he would have taken, it just wasn’t going to happen. So we chalk it up to a moron and we found another outlet for collegeman’s creativity.

I can even relate a story that happened to me as a child. When I was in fifth grade I read a book called Americans All. It was a history book about the contributions that Jewish-Americans had made to the development of the United States. Now we are talking way back in the late 1960s so, no one was even trying to figure out any contributions that any ethnic groups had made to this country. Well I was so excited about that book that I went up to the teacher and showed her look what Jewish-American had done. She wouldn’t believe me. Told me I could believe what I want and she would believe what she wants. Of course, all the other children snickered as I sat back down in my seat. Oh, by the way, I and my sister were the only Jewish students on our school and we were living in the Deep South at the time.

When I got home, I told my parents what had happened. My mother being a strong woman born and raised in the Bronx wasn’t going to let some southern bitch ruin my self-respect, so in typical fashion, she started making fun of the teacher. While I know my mother treaded a careful line at that time, because she didn’t want me to become so disrespectful that I would end up in trouble in class, but she knew she had to do something to let me know the teacher was an idiot and that nothing I thought or did was wrong. In fact, whenever we disagreed with someone’s position on something, that teacher’s sentence is always brought up with a mocking tone. To this day, we are still making fun of the ignorance of that teacher.

So what do we do when the teachers are asshats and you just without a doubt want to throttle them? You countermand every order they give your child. You make fun of and ridicule them to your child, so they don’t take to heart anything that is negatively about them. Oh in the meantime, you also get a hold of the special ed director, the principal of the school and if necessary you contact an advocate or a lawyer. You threaten the professionals within an inch of their lives, in a legal and calm manner. You have the lawyer investigate civil rights violations and in many states verbal derogation of a child is considered child abuse as well. Check out your state’s statutes.

I think that we all go through this at one point or another with our children. Self-esteem is fragile enough without some asshats, moron and total incompetent shredding your child’s soul. You do what I told you before. You buck up your child. You make them understand that you do not agree with those teachers and that the teachers are wrong. You, on a constant basis remind them how special and unique and wonderful they are. You work at it day and night and night and day. You ensure that your child is ready to embrace who they are and is proud of who they are.

But then you go slow. You stop; you think, organize, plot and plan. You take your time. You go deliberately. You find the answers you need and you seek the help you need as well. . The Sicilians say, revenge is a dish best served cold. When you are calm, then babe you get your bitch on.



Until next time,


Elise

Thursday, May 6, 2010

Advocacy: Your Present Job, Your Child's Future Job

This post originally appeared in February 2010.

Today we had a terrific conversation on @thecoffeeklatch about being your child’s advocate and turning them into an advocate for themselves. The following is a summary of the discussion. It is a conglomeration of the wonderful thoughts and ideas produced by a group of tremendously supportive parents of special needs kids. Some of these ideas are mine, but not all. Please go to the search box on your twitter profile, and type in #tck to see the actual discussion of these topics.

There are several stages of development for advocacy. The one most people think of is being the advocate for your child. We embrace our parent-bear attitude and go in full force to protect our young. Now this is not a bad thing. But as I have written before you need to be methodical, practiced, and calm.

1. Know the law. Understand the IDEA, ADA and the state regulations. Know what is available in your school district for your child and/or what programs are available in your state. Understand the testing that can and should be done on your child’s behalf and the methods recommended by experts on how to deal with these issues.

2. Try to make friends with the teacher. You want the teacher as an ally.

3. Write the teacher a letter about your child. Make it positive while explaining their issues. Also use positive phrasing to describe idiosyncrasies. Think of the best way to describe an adult if they were applying for a job. Use those kinds of words.

4. Don’t forget to thank the teacher for the extra work they do. I usually bought an extra Christmas gift, but if your budget does not allow for that, a hand written note of thanks is always a lovely gesture, to recognize that the teacher does take extra time with your child.

5. I always bring some type of baked good, cookies, or brownies to an IEP meeting. It helps keep it civil and friendly even if there are some contentious issues. Sometimes it helps to cut the tension with a little friendliness. Don’t be afraid to make the first gesture.

6. Also don’t be afraid to bring support with you either in the form of therapists, doctors, advocates or even a friend to hold your hand.

7. Make sure the goals that are written are appropriate for your child and offer them growth.

8. Make sure the schools include self-advocacy goals for your child.

What is self-advocacy? Self-advocacy is teaching your child to have the ability to help themselves. It is the ability to make sure that they get what they need when they need it by themselves. Now, this is not going to happen when they are 6 years old, but it is a skill that needs to be taught to them continually throughout their education so they are able to take care of their own needs as independent adults. Self-advocacy skills include:

1. Understanding when they need to remove themselves from a situation because of sensory overload. What to do in that situation and where to go to calm down. Also they should be taught how to calm themselves as well.

2. They need to know how to approach the teacher to ask questions about work. They need to know how to ask the questions and when to ask the questions. They need to be able to differentiate between talking to their teachers and their peers. They need to understand how to use pragmatic speech and the tonal quality of their voice.

3. They need to learn how to keep their belongings and their assignments organized. They need to know how to hand in assignments, how to keep a calendar and how to when all else fails ask for extended time.

4. They should be taught that if they cannot make themselves clear the first time they ask a question it is important to try to reword the question, not just yell loudly at the teacher because the teacher did not understand the first time. (For that one the child usually does get detention eventually)

5. Your child needs to be able to ask for help, when it is needed and accept help when it is offered.

6. Your child should be taught how to differentiate between someone who wants to be their friend and someone who is a potential bully and what to do about it.

7. They need to learn the rules of behavior in and out of the classroom.

8. Make sure your child know who to turn to in case they get lost; who will help them in public and in a store situation and who to stay away from. (On the @thecoffeklatch wall on facebook several people have listed their favorite medical alert sites. Buy your child a bracelet, necklace or shoe tag. Put their name, diagnosis, who to contact in case of emergency, and medicines on the back. Also listed is a site for a tracking company for those whose children are runners and nonverbal. I had previously listed on the facebook page some sensory friendly websites as well.)

There are also self-advocacy skills that relate to the community at large.

1. They should be able to go into a grocery store, drugstore or any type of store. They should be able to pay for their items and return home without exposing themselves to potential hazards.

2. They should know how to safe guard their person and their wallet when they are in public. They should know how to use an ATM machine and keep a bank account

3. If they are not going to learn to drive they need to learn how to use public transportation. On that note, they also need to learn to cross the street. As I said during the conversation for some reason collegeman still forgets to look both ways. (Don’t ask)

4. They should be able to go into a restaurant, order, pay the bill and leave a tip

5. They should understand proper hygiene requirements.

6. They need to learn domestic chores and how to maintain a household (pay bills, clean, understand about money management/insurance/healthcare)

7. They should know how to interact with authority figures, be it the police, firepersons or EMTs.



Holy cow you say. This is so much. The truth is not really. These are merely the things that any person needs to know in order to become an independent adult. Self-advocacy is something everyone does all day long no matter who they are. The difference is that with our children, like with most things, need to be purposefully taught. It is not something they are going to pick up on their own. Also remember this is not something that they are going to have to know over night. Slow and steady wins the race and slow and steady your child will learn to be full independent self-advocating adults.



Until next time,



Elise

Order Out of Chaos: Big Bang Success (Part II)

This post originally appeared in February 2010.

An update on the organization wars:
I think we have reached an apex of tumult in our offices that not even the boys can figure out where all their books, notes and study guides are. Highschoolboy reluctantly agreed to organize his room with hubby’s help. As I have mentioned before, HSB uses a lot of his “no” issues to get dad to help him with studying. I am definitely convinced that he likes the one on one time with his father. He in fact will say to me that he will wait to do “such and such with dad.” So tell me again how persons with autism are unattached and unemotional and unfeeling.

Well anyway they worked together last night to straighten up that whirlwind of chaos that was his desk. His books, those having nothing to do with school were put on shelves. The garbage was thrown away and the floor cleaned, swept and spills wiped up. There is no longer that odd smell of something rotting. Which is good. I was teasing HSB that the reason he got sick right before vacation was the fact that his room was an experiment in growing your own bacteria. He did not find it funny, but I did. Sometimes teenagers just have no sense of humor.

But today is going to be the fun “organize with dad” event. Collegeman has accepted the fact that he needs to create some order in his mind’s eye. I am not totally convinced that he doesn’t know where everything is in his world, but it cannot remain the way it is. He takes notes as he reads. A good thing. But the papers are left in piles on the floor. Everything is still strewn about and I do believe he is starting to misplace some important information and papers.

He has to write a legal brief for his criminal law class and the information is dispersed under these papers. Then he needs to start researching a term paper on that Iranian nut job Ahmedinejad for his leadership class. How did he get stuck with the Iranian Mishugennah (crazy person for all those that don’t speak Yiddish)? He asked for him. (Collegeman is very worried about a “nuclear Iran,” and the threat it implies towards another holocaust. We try to help him understand that there are those working on the issue, both in the USA and in Israel. That they know what they are doing (well we hope) and that there are those fighting and dying to stop the terrorists, such as the offensive in Afghanistan that our wonderful brave men and women are presently fighting.)The coach told me that all the other students asked for the more conventional type of leader, meaning western recognized and with a lot of information available. The professor seemed to be impressed and even brought collegeman a book to help him with his paper. (Just as an aside, the professor did tell the coach that collegeman, whom he had not had in a class for two years, was doing quite well. YEAH)

Anyway, back to organization…we have given him manila folders to organize by book, chapter, topic, and class. He will write with a sharpie on the folder the categorical title he wants to give and then put the papers away. Remember he needs to create the organization/titles, so he knows where everything is. We may help him but it’s his mind that has to identify and understand the system. He will start to put his books back in his draws. Luckily that room does not have that faint odor of decay yet, but I think it’s just because since hubby does venture in there on some odd expedition he periodically removes anything left behind that could attract uninvited miniature guests to the home.

The next big item to tackle though is going to be that backpack. OMG. I have never seen anything like that in my life. I honestly think that collegeman is getting a little worse when it comes to what he brings with him back and forth from school. I do understand that it is because he is unsure what he may need at any given moment, but he carries all his books for a particular class and then the class books that he wants to study while he is in the car going back and forth to school. I know the catalyst for this obsession was that one day last year, he actually didn’t have the book he needed with him and felt totally lost in class. I know he felt stupid that day and it is not a feeling he neither likes nor wants to repeat. No matter how many times we tell him that it’s ok to make mistakes. Granted none of us like that feeling, but its different when you have an anxiety and OCD driven child who tries to avoid that feeling at all costs to himself.

One day recently, he did have a hard time in a class when he forgot one of the books he thought he might need and he asked the coach to talk to him in the hall. The coach talked him through the anxiety and went back in. Good for collegeman that he knew that that was what he needed to do. The sad thing and yes I say sad thing, is that that book wasn’t even needed that day. But collegeman’s OCD had kicked in and there was no way he was going to get through that incident on his own. I know, at least he knew to ask for help and the help was there. I just want him to get to the place where he doesn’t have to worry about these things, or that when the worries come up he can help himself and move on. I know that that will come as he has gotten better continually over the years, but as his parent, I just wish things were easier for him. I know “So say we all.” (My reference to Battle Star Galactica, which by the way, what a stupid ending, instead of creating Atlantis they go off to die of preventable diseases. So how smart were they really?)

So we shall see how it goes. I know the rooms will be straight and the work will get done. It is that massive bottomless pit of a backpack for collegeman that will be the new battleground today. But I think if we get him into a “straighten, organize and clean-up mode” then it may get done. Next on the agenda: how to work with him to not have to carry everything that doesn’t fit into the backpack in his hands. There is always something to work on isn’t there? Time for more coffee.



Until next time,



Elise

P.S. Today is St. Valentine’s Day. It is a holiday dedicated to love and joy. It is a holiday in remembrance of a Christian martyr tortured and killed by the ancient Romans because he preached peace and love, albeit from a different perspective than one they were used to. I have never been able to understand why people get so upset by the concept of peace, love, joy, or happiness especially when it’s about compassion, understanding and respect for others. Personally I do like this holiday. A little more LOVE, COMPASSION and UNDERSTANDING in society can be a good thing for our children.

P.S.S. I did get two very nice hug/squeezes