Wednesday, June 30, 2010

July 4: To This, I Pledge: Don't Drink and Drive

                                                   Together We Can Spread the Message




                                           Stay Sober. Stay Alive.
                                           Don't drink and drive.
                                           Use a designated driver.
                                           Make sure their sacrifices are not wasted.
                                           That we, their posterity deserved their sacrifices.
                                           HAVE A HAPPY AND SAFE  FOURTH OF JULY.



                                                                        GO USA


1. Simply pledge your driving sobriety this Independence Day by noting your blog URL and blog name.

2. At the bottom of this “Blog Hop” you will see text in which you can grab the code for this McLinky. Simply click the link and copy and paste the code into your very own blog post’s HTML section. Then click “compose” and copy and paste this pledge, adding your own message to the top as I did above. Copy the pledge from “together we can stay alive” above.

3. Follow the host Hollywood Chic [-first on the linky-] of this Independence Day Pledge for more information on the Department of Transportation, Buzz Driving, and Stats.



This is a Blog Hop! ... you're next!

This is a Blog Hop! 63 entries so far... you're next!

Tuesday, June 29, 2010

Social Justice, Autism, Society and Acceptance: With a Little Politics Thrown In- OK Alot of Politics

This is the beginning of an old post from January 2010. I am repeating it because of the original  post that follows. I have also included a link at the end of the paragraph to the older post so if there is anyone who wants to read The 3 Ds and Your Autistic Child please do. The post deals with the delegitimization of our children and those with disabilities by society. It is a "play" on an article by Natan Sharansky the head of the Jewish Agency about the delegitimization of the State of Israel and the difference between legitimate criticism and anti-Semitic criticism. These two posts in many ways are a complement to each other.

A note to my readers-The following is a political post. If you believe that it is permitted to walk into a pizza parlor in Tel Aviv and blow yourself up, or that is OK to blow up a school bus full of children in Jerusalem or attack a Jewish center in Argentina, Seattle or the Holocaust museum in Washington D.C.; if you think its OK to deface a Jewish cemetery or synagogue, or attack people because they wear the Star of David; if you think that the Holocaust did not happen and call it a war crime to teach the Holocaust to children, or send over 10,000 rockets into civilian areas, while calling for genocide against another 6 million Jews, if you think there is a vast Jewish conspiracy to control the world and that the Jews and/or the United States caused 9/11, if you think that the only nation on the planet that can't defend itself is Israel, if you repeat anti-Semitic blood-libels and and if you think it is OK to behead people in the name of God you are NOT welcome here.(Read the rest of the 3 Ds post here.)


In the annuls of Jewish history the fast day that falls on the 17th day of the Hebrew month of Tammuz usually passes without notice in the Jewish community accept among the very observant. I have to admit that that is generally the case for me as well. However, I came across an article in the magazine Jewish Ideas that actually caused me to pause. But before I discuss that article, first an understanding of this holiday. The history associated with this fast day commemorates the final sieges of Jerusalem by both the Babylonians and the Romans. It is the precursor holiday to the fast day of Tisha B’Av (July 20) which, after Yom Kippur, is the most solemn day of the Jewish year. Tisha B’Av remembers the destruction of the Holy Temple by the Babylonians and the Romans and the beginning of both the Babylonian and Roman exiles of the Jewish people from their native land.


The interesting part of the article was how some modern day religious Israelis have actually turned such solemn days around and instead of wallowing in the negative of the holiday has turned it into a call for social justice. They call upon people to use this day as a day of reflection and every year they pick a new theme. The theme for this year’s conference is the integration of persons with disabilities into Israeli society. It is interesting because as I sit and reflect upon the boy’s past I can’t tell everyone how unwelcome the boys were in a multitude of Temples and Synagogues from the time collegeman was very small.

I could go back to pre-school where the teacher/principal in this orthodox Jewish setting told me that since I had not come in to talk to them about collegeman in a parent-teacher conference they had decided to just ignore him in class. She even admitted to me at this time that they thought he had an auditory processing disorder. So she was being cruel to not only a three year old but one she knew to be disabled. I pulled him out the next day and wanted to go to the Rabbi but hubby didn’t have the strength for it. His mother was dyeing slowly from metastatic cancer and he just didn’t have the strength of a fight in him.

The next program I put collegeman in was a camp in a reform synagogue (To be specific that grand old reform synagogue that all the wealthy fifth avenue doyens happen to belong to. I suppose if I was a million dollar donor they would have had more patience for my son), where they decided that they didn’t want to deal with his issues and even though some of the counselors found him charming and fun they were nasty and resentful and wouldn’t let those counselors who liked collegeman work with him. I had mistakenly thought that even though they were mean to me they at least would be nice to a small child, especially again, one they knew to be disabled. To be honest I didn’t really know how truly bad it was until one day we were walking down the street and past one of the teachers from camp. Collegeman promptly spit at her. In front of her I told him he did a good thing and kept walking. (OK a little passive aggressive but a well deserved “spit” I think).

My last sojourn into the world of Jewish religious values in New York City was in a conservative synagogue on the Upper East Side. Collegeman attended a summer camp there and had a ball. The counselors were great and very accepting. Collegeman cried when camp ended. Since all the children in the camp attended synagogue there and we were members I called the nursery school to get him registered. I know they had opening for members. They told me they had no spaces left for boys (patently untrue). Needless to say, I canceled my membership.

My next foray into the Jewish religious world was after we had moved out of the city because finally finding out that collegeman was autistic we moved to a school district that would help him. We could not find a Hebrew school that would take him. It was getting close to his bar mitzvah and the temple that we belonged to at the time, the one my in-laws (RIP) were actually founding members of, refused to give him a date because he could not attend Hebrew school. This was the same Temple where the junior Rabbi yelled at the parent of an autistic child (a member of the executive committee who donated extraordinary amount of time to the temple) that those” kids” have no place in Temple.

We had decided, even though there was a huge history at that Temple for my husband (by this time both of his parents had passed away) and the attachment to this religious institution was very great for him (it was where he had become a Bar Mitzvah) that we had to search out a different institution. So I began to call around.

Now living in one of the most densely populated Jewish areas on the planet Earth you would think that this was a good place to try to find a Jewish institution that would Bar Mitzvah my children. Well think again. We didn’t call the Conservative synagogue near us, because they had been nasty to us when I had tried to sign HSB up for nursery school, going so far as to refuse to cash my check and claiming that they never got it. But lo and behold when I withdrew him from the school, the check turned up in the mail.

There was another Reform Temple nearby that told me if collegeman couldn’t attend Hebrew school then not to bother to send him to the Temple. I spoke to the Rabbi at another Temple, who told me that if they relaxed the requirements for my children it would not be fair to anyone else. It really wasn’t as if I was asking that they Bar Mitzvah my children without them having to do the requisite charity, and education requirements. It was just that they needed some help and may not be able to attend classes like everyone else and could they arrange something for them?

I can’t tell you the hostility and total rejection of my children by these organizations that pride themselves on their social agenda and progressive views of the world. I found it totally ironic that some people who follow a religion that talks about “tikkun olam” as a righteous requirement are so unrighteous. TIKKUN OLAM is the commandment that Jews are required to leave the world a better place then when they found it. (for those that don't know, the Ten Commandments are just the beginning for Jews. there are actually 613 commandments we are supposed to follow.) Social justice is our duty. It does not have to be anything major; it can be as simple as helping an old lady cross the street, to discovering the cure for cancer. The problem here is that as long as it was someone else who was taking the time to perform tikkun olam then it was just fine. They did not practice what they preached. It was like supporting wind technology except if it blocks your estate view of the Atlantic Ocean on Martha’s Vineyard.

Finally, however, someone had told me about a Rabbi who sounded like he understood what the Torah was all about. The story goes, an acquaintance was in a car accident, and she was unhurt and sat in her driver’s seat until the police arrived. She closed her eyes. She awakened to a knock on her window and there was her Rabbi. She immediately panicked and though “Oh my God I must be dying they sent for my Rabbi.” Well she wasn’t dying by any means, the Rabbi showed up because he was a volunteer on the ambulance corp and an ambulance is dispatched for every accident. Intriguing I thought. A Rabbi who was invested in the local community as well as his own Temple might just be the person I was looking for. Maybe here I would find a “mensch” (human being). I told them at the Temple what I needed and they made me an appointment with the Rabbi.

Well this man turned out to be a gem. The assistant Rabbi turned out to be a gem. The cantor turned out to be a gem. The Hebrew school principal turned out to be a gem. They not only accepted the boys into the Hebrew school and gave them bar mitzvah dates; they wanted us all to be welcome into the synagogue. They did not require the boys to attend class, but provided them with a private tutor at no extra cost to me. I offered to pay more, but they wouldn’t have it. It wasn’t fair they said that we should be penalized because our children have a disability. So of course, every year that the boys studied we gave an extra monetary gift to the Temple, and one year I created an ethics class and taught it as a volunteer. Unfortunately as far as the class was concerned the children didn’t like it and they stopped the class. To this day, I can honestly say, that these people restored my faith in the nature of people. I have to tell you honestly, these rabbis and I are diametrically opposed practically on quite a number of political issues. But on one we do agree, and that is on the humanity of those with disabilities.

Some may ask is it a good thing to be associated with a religious mentor that you disagree with so vehemently. I answer them, my problem with this Rabbi is that he is too good on some issues and too trusting and too much a believer in koombaya. You would never hear an anti-anything from his pulpit except if it was anti-hate and anti-intolerance (he is the anti Rev. Wright). Every Yom Kippur he leads a Muslim-Jewish dialogue at our Temple. His biggest fault is that he truly believes as Anne Frank did, that all people are inherently good.

Unfortunately it also seems like my experience as far as the Jewish- American community is not unique. In fact it is so bad that the Jerusalem Post actually did an expose on how badly treated and unwelcome are families with autistic children by synagogues and temples throughout this country. It does boggle the mind how ungodly those that profess to love god can actually be at times.

So when I read this article about using this fast day to reflect upon tikkun olam and how this year’s theme in Israel was the integration into society of the disabled, I was so overjoyed. Finally I thought someone does get it, even if those people are half-way around the world.

I also came across another article in the Jerusalem Post about the opening up of an autism research center in Jerusalem. The largest autism research center in the world has just opened in Jerusalem. Their first conference is next week, July 5-6 in Jerusalem. Wish I was there for a variety of reasons.

Just as an aside if you really think that the medical technology that is created in Israel is not shared even with Israel’s enemies, note that the 3-year old daughter of the second in command of Hamas was given life saving heart-surgery in Tel Aviv. Meanwhile her father calls for genocide against the children of Israel. Israel shares her inventions and discoveries with the world. That is why I look forward to the research done at the new Autism Institute, who knows maybe God’s spirit in Jerusalem will help find the answer.

****************
OK Now I Get Political:

While this blog is not political, and anyone and everyone has always been welcome to the information I discuss, and I happily help and give advice to anyone on autism and try to assist their children no matter what,I understand hot button issues. If you don't care don't read further. If you are interested you are welcome. You are also welcome to comment if you wish, but remember disrespectful, racist, anti-Semitic, misogynistic comments will not be published so don't try I moderate all comments on this blog. However, I do have my opinion of the situation and since this is my blog I can say what I want.

If you are an asshat and believe the crap coming out of al-Jazeera and the anti-Israel –Left, then there is no hope for you. But if you are interested in beginning to learn the truth of the situation I suggest you watch these videos. Just a small sampling of what Israel has given the world:





Let's not forget Haiti:



And the truth about civilian casualties in the war in Gaza:



The flotilla:







For more information about the history of the area please go to the Council on Foreign Relations (here).


Until next time,

Elise

Sunday, June 27, 2010

The Happiness Project: Order

One of the things I like to do for myself is read wonderful blogs written by wonderful women. You can of course find some of them on my side bar. One of those that I enjoy immensely is Aspie Teacher, written by Sandy. She is an adult aspie, graduate of an Ivy League college, happily married, former inner city teacher. Sandy writes about life as an adult on the spectrum and has become quite the advocate over the year that I have read her blog. One of the more interesting programs that she created was Autism Night Out, where she organized an autism friendly shopping experience. What an inventive and wonderful idea that was. Another interesting perspective that she wrote about was what happened when she was called for jury duty and how the judge actually accommodated her auditory processing disorder. While the trial itself concerned an upsetting societal issue, it was an amazing look into how the world really can accommodate those with invisible disabilities with minimal effort. It truly says something about the parts of the world still so hell bent on ignorance towards those with invisible disabilities and it is not a flattering portrait believe you me. But what I found most intriguing is Sandy’s last article about blogs totally unrelated to autism. The one I love the most was The Happiness Project, by Gretchen Rubin.


What a terrific idea. Think about it. We are all responsible for our own happiness and if we are not happy then we can do something about it. That actually is the challenge of the Happiness Project. I signed the petition and I suggest all of you do too. I think in today’s world of economic upheaval and political uncertainly, we can all look at our own lives and decide to be happy. It doesn’t mean that there are not things that are out there that we cannot control, but there are plenty in our own sphere of influence that we can. Take charge that is what I am going to do. Here are the months and some ideas of where you can review your world, ala Gretchen:

• January--Energy

• February--Love

• March--Work

• April--Money

• May--Mindfulness

• June--Order

• July--Spirit

• August--Fun

• September--Family

• October--Friends

• November--Attitude

• December--Boot Camp Perfect

The petition tells you to start at the moment you sign. So since it is still June, I will start with order. Heaven knows that in a family with two aspies, three dogs, a hubby that works 24/7 and me a control freak, order is something that we all need a great deal.

******************************************************

ORDER

Hubby used to tell the boys when I went on a cleaning jag to not stand still or mommy would throw you out with the trash. I cannot stand clutter never could. So I think it is ironic that the boys live and thrive in clutter of some kind. It is funny because for aspies life is supposed to be schedule and order, but for them, life is one big pile of mess. So every once in awhile I go through closets, desks, shelves and boxes, to make sure that the items we have are things we really need.

The truth is that the boys outgrow their clothes on a regular basis. OK collegeman not so much anymore. But HSB, woo boy that child is growing. I think he finally hit that puberty stride, and he now has gone from an adult small to adult large in one year. Luckily he can share clothes with collegeman so it wasn’t such a bad thing in the long run, but getting there was a trauma. The clothes that could no longer be worn were happily placed in bags for the community center (Well after a bit of a fight where HSB refused to acknowledge that he needed larger clothes. Any kind of change was never easy for him.) As I have written so many times before, charity is a mainstay and the only way to actually get HSB to give up possession of any item is to assure him that it is going to be donated to those less fortunate. If you don’t have a community center near you, there is always the Salvation Army and I am sure your church or synagogue knows where you can donate used items too. HSB not being able to part with things has always been an issue with keeping things in order in the house. But we are moving on and hopefully we have found a way around this “lovely” OCD issue. By the way used books, can sometimes go to the Boys and Girls Club, your local library or I even have sent books to the local VA for veterans to read during their stay in the hospital.

Another clutter and disorder issue is the boy’s desks. Hubby’s desk is also a mish mosh, but for the most part I never go near that. Once in a while I clean it up so I can really throw out the junk and the old bills and used pens, etc. But as far as papers and books, they stay where they are. I do not touch his books; I don’t go and straighten the top of his dresser either. It drives me crazy but I leave everything as is. I wouldn’t know if I threw a needed piece of paper away and then something he needs for work is gone. No not going to do be responsible for screwing any of that up (truthfully learned that lesson the hard way years ago, not going to make the same mistake twice). That is also why during school I don’t make any real effort to straighten the boys’ desks, apart from cleaning up the left over dishes, uneaten food and wrappers. I do make the boys organize their information and we have draws and files for their schoolwork. Of course it would help if they used it, but that too I am hoping in time. But the truth be told for them it works, at least for now. We are exploring new ways of order and organizing them for the fall. Maybe since collegeman is starting a new course next week, we can try a new system out on this one class first. We shall see.

Now that HSB is finished with his year, I helped him clean up his desk yesterday. (I had done the same for collegeman when his semester was over too) In ten minutes I had all the junk thrown away and all the important books put where they go. HSB was truly amazed. He even asked how I did that. I basically told him that you have to understand when something is no longer necessary and that you don’t need it in your life anymore. The best part is that, HSB did not get upset when he saw how much had been thrown out. He took it in stride. Yeah HSB. (Maybe it also was emotional relief for him to be rid of the past year, especially with such an overt physical act as throwing out the algebra 2 notes. Interestingly he didn’t want to throw away the Chem notes, so they went back into his science draw.)

I know I keep my life in a PDA, and make sure to download it religiously to the computer. Of course if I lost either the computer and/or the PDA I would have no hard copy back up so I think that is my next project. Yes, I know, that is why so many people still use a filofax or a large calendar, but you know it just doesn’t work when you have several kids and several appointments in one day. What invariably happens it that you forget to put in your mammogram appointment and whoop, you miss it. So everything immediately goes into the PDA and it works for now.

We also have a blueboard in the kitchen that keeps a running list of to-do chores for the house. I know everyone has those lists and yes, they keep getting longer and longer without any conclusion. I suppose that is just the bane of being a home owner. Something always has to get done in the house. But it’s ok; at least it’s yours, well yours and the bank. I actually don’t mind the work on the house. Fix things up and order your world so that where you live is comfortable and pleasant. That I think is part of finding happiness. It is simply comfort.

Maybe that is what we mean when we talk about order. It is not the rigid necessity of a fascist existence, but the comfort of knowing what, where and why things are the way they are. I it is knowing that there are just so many cans of tuna in the pantry and that you are running low on diet soda (OK the boys are allowed one can a day. I am not happy about it, but we had to have a little compromise with American culture. And besides the nutritionist we saw years ago, said that it’s better than “real” soda and one would be fine but that was the limit. I’ll talk about how this rule changes at exam time too, but not right now). It is knowing that you are running low on detergent and that it is time to bring in the dry cleaning. It makes your home run smoother so everyone’s life is calmer and then everyone can concentrate on what is truly important; whether it is homework, yard work, chores or playing scrabble at 10 pm, actually the new game is gin rummy.

Ordering your life, simplifies your life and adds to your self-esteem. You see what you really need on a daily basis instead of what you want. You learn to understand a little more about your world and the world inside your home. You begin to understand ultimately a little more about yourself. What do you really need to be happy as opposed to masking your anxieties and worries? Personally by ordering my life a little more, I have come to the conclusion that happiness to me is chocolate and sparkling wine. Oh yeah, definitely coffee, lots and lots of coffee, especially in the morning.

Until next time,

Elise

Friday, June 25, 2010

Banned From a Website

Oh it was bound to happen eventually. What with all the net surfing and comment making and blog reading. No not me, HSB. (OK I am banned from one site but that’s a discussion for another day. OK a big political blogger wrote something negative about service dogs and the people that use them, and I let her have it. She then removed the offending part of her article but left up my comment trying to make me look the fool, which many people did comment on the fact that apparently I had no idea how to read. So I wrote her another comment and called her out on that bit of nastiness. Yes, in a "nice" ignominical way and using multisyllabic words I did call her a bitch, but it was well deserved and I didn’t use any four letter words either.) Well, he has gotten himself banned from his favorite website. Now granted there is a prominent warning that any negative comments will meet with being immediately banned, but I am telling you it happened right away. As soon as he submitted the comment. Is the guy that runs that site so geeky that he sits by his computer every moment and reads everything that comes in? I can just see him sitting right there besides his PC and his server watching out for negative comments.

What is that anyway, no negative comments. Granted if there was someone who wrote something nasty here I wouldn’t print it, but I wouldn’t ban them. Yes, I block people on twitter because of foul language or slanders or stupidity in general, but I don’t ban them from my blog. Come back and write another day. The truth is, if you don’t print someone’s comment they tend not to return. Well that has been my experience so far.

Anyway, I asked HSB did he use foul language or threaten anyone. He said no he didn’t. He just didn’t like what someone wrote or how they wrote. Now, if you are going to put yourself out there on the internet, not everyone is going to like what you read. In fact it is my understanding that some pole up their butts “professional” writers seem to be really threatened by us mommybloggers, that they are all losing sleep about us. It has become a cause célèbre among them to see who can write the most inane and nonsensical article about why they never read anything we write. No offense New York Times, (well maybe a little) or any other self-important publication, but we tend not really to write for you. Besides with the loss of revenue that you have been experiencing, I would not act as if you know what you are doing anymore either or quite frankly have any writers of any merit what so ever anymore. I understand several of their more liberal editorialists have lamented that this country is not a dictatorship so the President can implment his polciies without any problems. And the NYT wonders why they are loosing readers..

So how did HSB handle this little sojourn into the modern world of being thin-skinned? Not really very well at all. Poor kid started to cry like a banshee. Listen; there is not much that HSB really has right now. He just finished school, (Thank God) and is sitting around waiting to start driver’s ed. He loves to surf the internet and it is fun for him to read what other people write about different subjects and comment. Of course he is not supposed to be commenting, but that is a discussion I am going to have with him on another day, when he stops crying.

He cries actually every time he goes to the computer and he sees that he can’t access that site. I told him that he can go on millions of other sites, but as with everything with aspergers it’s the timing and the transition. It is the change and for him I think in some way the shock of what happened. Even if he had been warned and even if he had read it a thousand times I don’t’ think he really thought it would happen. What’s more HSB is adamant that he didn’t do anything wrong. He keeps screaming “first amendment.”

Now I have to explain to him how the first amendment applies on the internet. That it applies to access in a free society, but that doesn’t mean that the individual owners are required to let people print anything they want on their websites. Individual owners can make any rules they want and if you don’t abide by them you are banned. Yes we know that facebook lets any amount of disgusting racists, anti-Semites and misogynists onto their portal, but that doesn’t mean that everyone does. Luckily he still doesn’t want to do facebook, which to me is a good thing and we are not going to mention it as an alternative to anything.

I tried to explain to him that the first amendment also only applies to the government not the individual person. In my home I do not have to allow anything said that I find objectionable. My internet website is the same thing. He was still arguing his case with me. I finally had to turn to him and mention in a calmer voice, that it is all esoteric right now, because he is banned. If he wants I will help him find other websites that are similar to the one he liked. No he did not want me to help him. The truth is that he knows of dozens of sites that he likes to peruse. He doesn’t need my help in that area, but I felt it was a supportive offer, one that may make him realize that I was here for him.

The truth be told, I think the only thing he would have been happy with at that moment is if I could find any phone number to the head guy and call and get him reinstated. But from what we found out they are pretty strict on that site. Hubby came home and googled the site’s name and found thread after thread of people that had been banned and why they were banned. It seems the guy who owns the site is a real smuck. (No I do not mean smuck with the American slang definition, I mean smuck in its original Yiddish meaning which believe you me, cannot be said anywhere near little children’s ears. It makes asshat look rather genteel.)

Hubby also told me that HSB was still depressed about being banned by the time he went to bed. He tried to transition HSB away from the computer and the perseveration by trying to teach him to groom the dogs. The poor wheaton terrier looks like he has a rather nasty disease this morning (since HSB can’t mow the lawn in straight lines, don’t think he can shave the dog in straight lines either), but maybe it helped HSB move on. We will see when he wakes up. (Oh he is also seeing the therapist today, so maybe he can help HSB move beyond the incident if he is still perseverating.)

On another level, it may not be a bad lesson for HSB to learn at this juncture in his life. If you are told not to do something on someone’s site you had better listen. It is similar to listening in school in some ways. If there are rules of decorum in school there are rules of decorum on different websites. If you misbehave in school, you can receive any number of punishments. If you misbehave on the web, there are not too many punishments to be meted out so the one used most often is banning.

The irony I find is that this child who is so rule bound doesn’t seem to understand that the rules in other people’s venues apply to him as well as to everyone else. It seems that his rules are the ones he finds important and that the rules are only applied if he wants them to be. It is a very interesting occurrence. As a young child, I remember he did not climb on the top bunk of the boys bunk beds because the warning said you had to be six years old. And lo and behold on his sixth birthday, there he was on that top bunk. Now he has gotten to that age where he has decided what rules are important and which ones to follow. He has gotten to that age where he has decided that he knows everything and that older elderly decrepit folks know nothing. God I hate it when he acts like a teenager. By the way, this was also just the first full day of summer vacation. Crap.

Just in case anyone is interested, the meannie site on the internet that banned HSB is http://tvtropes.org/ .

Until next time,

Elise

Thursday, June 24, 2010

For Caroline Manzo, Albie and Dreams

I am going to jump into a foray that I know very little about. Ok some of you may say that is generally how I live a lot of my life, but here goes anyway. I was perusing the internet and came across an article about the Real Housewives of New Jersey, specifically the recent incident concerning Caroline Manzo and her son Albie. Albie, a hard working youngman with dreams of becoming an attorney, basically did not maintain the appropriate GPA and was asked to leave his law school. It was revealed that he has a language processing disorder and that it had been difficult for him that first year. It was also revealed that a law professor was nasty and condescending in telling Albie that persons like him won’t do well in the law field. Now I do not know any of the actors in questions in this drama, but what I do know is something about law school and something about higher education and accommodations for disabilities.


To begin with, that law professor is an asshat, big time. Of course, that should also come as no surprise for those of you who have been through law school and even remain in the practice of law. It seems that there is an overwhelming abundance of asshats in the legal profession, and yes a lot of them go into politics; republican, democrat or independent. (OK that is going to be my only foray into that for right now). I have to say that over the decades since I graduated from law school the tone of the legal business has even changed. It is no longer a “gentleman’s profession”, there is a reason the lawyers are also called “esquires.” It is because the English gentleman esquire was considered the epitome of legal decorum. What has happened however is that the legal profession has turned into a knock down drag out fight to the finish and may the best person, or the one who can connive the best win. This is not to disparage the descent among the attorneys (hubby being an amazingly honest, forthright and most descent of human beings and attorney), who are the overwhelming majority. But remember that song, “one bad apple can spoil the whole bunch,” or at least give the whole bunch a really bad name.

That professor is such an intolerant and ignorant man without the concept and understanding of what a disability is and how people with disabilities can learn to function in the neurotypical world. Does anyone not think that there are thousands of lawyers in this country and the entire world that have disabilities of every kind? Me thinks that that man needs to get his head out of the world of education and allow someone who understands teaching and preparing future minds do the job. There is no way that that professor should be telling anyone what they should or should not do with their lives. Apart from the fact that this may actually rise to the level of some form of discrimination on the part of the professor, it also reminds me of what collegeman went through with the Dean of the Drama department at his college. (Here) So asshats are not found in law school alone.

I have to say that there are many roads that a student with a disability can take in college and graduate school. In fact, under the Americans with Disabilities Act (ADA) there are accommodations that the schools should be giving to persons with disabilities. Now, post-secondary education is not like K-12 where there is the Individuals with Disabilities Education Act (IDEA), that ensures not only accommodations but mandated supports and therapies for those with quantifiable and diagnosed disabilities. But there are enough supports and accommodations under the ADA that can be given and that are basically de rigueur in today’s world. In fact, the Bar Exams of every state has an application process for persons with disabilities. (Maybe someone should show that professor the law of the state where he lives).

Some of these accommodations are (but not exclusively): alternative location for exams, use of a computer, double time for testing, use of a note taker during class, the allowance of service animals, readers for the blind and interpreters for the deaf and even study programs for those with disabilities. Some post-secondary instructions allow the student to tape the lectures so they can review them at a later time, and there are even laptop programs that allow you to record and type at the same time. But be sure to ask the professors permission before you record. Some states do not allow you to record without someone’s knowledge and still others consider the lectures intellectual property.

As far as collegeman has been concerned, his college has a wonderful area where he goes and takes his exams. It is a private and quiet area, with its own computers. The people that run the program are truly wonderful and seem much invested in him doing well. They make sure that he has everything he needs and that if something is not understood there is intervention with the professors. As I have said before, apart from the odd issue, this has been a very welcoming and wonderful place for collegeman. They have allowed him to grow and develop like any other student. He is such a different youngman than he was when he entered that school two years ago and I know it’s only because they allowed us to implement the program that he needed. For that both hubby and I will always be grateful.

I have also mentioned the use of college coaching and the creation of a private program for all students with disabilities. It is not a bad thing at all. In fact the transition from highschool, to college to law school is daunting for anyone never mind someone who has executive functioning and organization issues. The world we live in is very different than 25 years ago when I first graduated from law school. There is so much more that we have learned about disabilities and how to help those with neurotypical differences that there should be no excuse for any school to shirk their responsibilities. It is a total shame if they do.

To Albie and Caroline Manzo, I would like to offer some support. I also did not reach the respected GPA at the end of my first year of law school. I was allowed to apply and request to be reinstated, which I was. I later graduated, albeit not on law review, but I passed the bar. Do not let anyone tell you, you cannot in this world. Counselors, teachers, doctors have told hubby and myself that our children can't from the time they were diagnosed. I tell them all, push off. I tell my children that you have a right to your dreams and you have a right to reach your goal in life. By the way, collegeman is also gearing himself for law school. I'd like to see someone tell him he can't. They will get one big boot up their butt.(See, you don't have to be from New Jersey to not take crap, ok, however, I did spend some formative years there. Actually my attitude may come from being a Bronx born baby.)

By the way, just for Albie’s own edification, it is my understanding that it took the Honorable Justice Louis Brandeis (perhaps one of the most brilliant jurists to ever sit on the US Supreme Court) 6 tries to pass the bar exam. Just saying…..

Until next time,

Elise

Wednesday, June 23, 2010

WOOHOO, It's Officially Senior Year

WOOHOO, HSB is at his last final. It is algebra 2 and it will be a bear. We had him see the Saturday tutor, the during the week tutor both Monday and Tuesday. I am keeping my fingers crossed that he passes. Hell I will take a C, so he can get a descent grade for the year. The poor kid has earned it.


I have to say that in my recollection, this has got to have been the worst year for this child. Apart from the social issue of losing his longtime best friend (child decided after being BFFs since 3rd grade that he didn't want to be friends with HSB anymore), academically this year was just a nightmare. Something has happened to this child when it comes to math and it is just getting worse. Many people have mentioned the issue of dyscalculia and that it might be HSB’s problem. But I am not really sure about that. HSB has no problem learning about the concept, it’s the application of the concept and the little tiny things that he misses.

It is so difficult at times to parcel out what is causing any issue that our children have. Considering that HSB’s aspergers is co-morbid with ADHD, OCD, language processing disorder, auditory processing disorder, dysgraphia and possible NVLD, oh and the all purpose emotional dysregulation issues associated with all of the issues I just mentioned, who really knows what is causing what. I am going to be taking him to a new psychiatrist this summer to see if we can figure it out and to see if that leads to any changes in his regime. I know we are told that if medication is working not to change it. I am not planning to change his medication, I am actually wondering if he is on too much medication as opposed to not enough. You can read  (here) the terrific discussion we had @thecoffeklatch yesterday about medication and summer rollercoaster to get an idea of how we are going to have everything reevaluated.

Honestly I am not so sure that even if everything is going smoothly that that is not a bad idea to begin with. Children grow and change and their needs change. Who is to say that what worked at 5 will work at 6. Heck what has worked at 5 for my children didn’t even work at 5 and ½. Constant reevaluation and redirection is a good thing. Make sure that your children are receiving the care that they need at the time and truthfully if you don’t like what the doctor recommends go somewhere else. I can’t tell you how many times I have been fired by a psychiatrist because I questioned them (I tell you, there are some doctors out there who need medication and therapy themselves) or how many times I fired a therapist because they decided that it was my job to figure out what was happening with my child (Actually had several ask me that question. They  told me that  if I figure it out to tell them. I found a new therapist instead). But in the end we have been able to establish a posse of wonderful people all dedicated to helping the boys. It may take time, but it is well worth the effort.

As far as math is concerned though, HSB was always able to learn his math facts, even though he really never wanted to study. Yes that has been an ongoing issue with him since he was very young. But he was able to pull out the stops no matter what was required of him. Even on his fourth grade statewide testing, HSB did well despite his attitude. What attitude you ask?

Well for starters, on the English exam, HSB had had enough by the third day of testing and instead of writing the essay answers like he was supposed, basically wrote to the state education authorities, that “if they wanted to see how well he reads and writes, they should come to his school and watch him.” Yep he handed that in. Nope, the teacher did not accept it and made him go back and finish the test properly. But we did have a great laugh in the IEP meeting about that one.

Now for the math test, HSB also had had enough by the second day of testing and when he was told that he had no choice but to finish the exam, he decided to “Christmas tree” the test. For those of you with real little kids, that means he just went down the scantron and filled in any answer that he wanted to give, most of the time without reading the question. He handed it in ten minutes after he was handed the test and told them he was done. The other children in the alternate location (yes by fourth grade he was already in an alternate location for major testing) were all laughing so hard that they had to take HSB into another room until the other children were done. He flatly refused to go back and review what he had done.

In state testing there are 4 levels: FOUR being the highest showing a great proficient; THREE showing an understanding of the material with a slight problem in applying that knowledge; TWO showing a major deficit; ONE showing an absolute child at risk. HSB always ended up in the THREE range. In fact on the English exam he ended up in the high three area. So much for state testing actually showing your child’s ability or not, or whether state testing can detect a learning deficit. Considering that HSB has a major language based disability I find it rather ironic that all the state testing done, even in the 8th grade, HSB came out rather well. Until of course the English regents, you know the one that really counts towards his future, then he just about passed.

Anyway, today he is done and we are going to celebrate. We are going to do the happy dance when I pick him up from school and celebrate that he is a highschool senior. Oh boy, that next step is going to be a doozy. I wonder if I can get him to write his personal essay for his college applications over the summer. We did it with collegeman and even though he did rewrite it several times to make sure that what was being asked in the applications was what he was answering, I think that it would be a good exercise for HSB. Besides this way he can keep his hand in writing and not go for over two months without practicing his skills.

Oh yeah, he is also going to learn how to drive this summer, so if any of you happen to be in the Northeast this summer, make sure you have your seatbelts on or truly maybe just avoid the area altogether. This is not going to be a fun exercise at all. Yes, we signed him up for Driver’s Ed. You don’t think I am stupid enough to try to teach him to drive on my own? It’s gonna be bad enough that he has to sit with me and practice in the car after his lessons. Luckily this is Driver’s Ed given through the school so the teachers are really experienced in dealing with all different types of drivers and students. It’s not that I think that HSB will be a bad driver, on the contrary. Once he is done learning and he understands the rules of the road, I think that he is going to be a very good and cautious driver. The hurdle that we have to get him over is that fact that he is afraid to drive.

So you ask yourself, them why are we making him learn? I suppose that it is a skill like everything else that children have to learn. Hubby is adamant that he learn. After much thought, I actually agree with hubby. (Yes, I know, don’t tell him.) HSB needs to know how to drive, just in case there is an emergency and neither hubby nor I can drive somewhere. It adds a feeling of a bit of security in the house. You see, because of his seizures collegeman can’t drive and he has to be seizure free for at least one year before that can even happen. For collegeman the medication has helped reduce his seizures, but they still happen, albeit infrequently, yet still a terrible danger on the road. So we promised HSB that he did not have to drive all the time and that he would only have the license for emergencies. We told him that I would still drive him to school next year and the he didn’t have to worry about it.

Honestly I will have to tell everyone that that was not really such a hard thing to promise. The reality is that with the economy being what it is, there is no way right now that we could afford a separate car for HSB anyway. I am not even sure what the insurance on that would look like. I hear that teenage boys cost a fortune in car insurance. I am hoping that it’s not so bad if he is considered an infrequent drive, but we shall see what we shall see. That Rubicon actually gets crossed at the end of this week when HSB goes for his learner’s permit. As soon as he walks in the door, the call goes out to the insurance agent. Goodness it gives me the chills to even think of that.

But in the end, when all is said and done, it is the official start of our summer. WOOHOO. Thanks be to God in heaven. We need the decompression.

BTW, collegeman is fine. We had the check-up with the oral surgeon and he is healing wonderfully. He stopped taking the heavy pain killer days ago and is eating like a bandit. Normal, normal. Thanks for all the well wishes and caring comments and tweets. It is much appreciated.

Until next time,

Elise

P.S. Found this rather condescending article about us mommybloggers, written of course, by someone who considers herself a "real" writer. Thought some of you might like to comment. Yep I already did.

Sunday, June 20, 2010

From Few Words to One Kvetchy Kid

I remember when collegeman was little and I had decided to return to work. The only problem was that I had wanted him to talk to me about his day before I would apply for a job. While I knew that most nannies are good people and take their jobs of care seriously there is always that one individual who gives you nightmares. And yes they did play it up on the news but, why take a chance. Why have to put in nanny cams and security programs so you can go and earn a few extra dollars? The truth is that the sojourn into the world of work did not happen, because collegeman did not talk.


Oh he spoke a few words here and there. He could tell you when he was hungry and thirsty. He told me when he had to make potty and he even relayed when he was happy and sad (which we all know that in the world of autism spectrum disorders this is a really good thing). But what he didn’t do was regale you with stories from his day. You know how at first the pediatricians tells you that it is because he is a boy and they talk later. (With HSB they kept telling me that he was a second child so they talk later, and then it was because he was prone to ear infections- he had tubes put in when he was 2 years old)Then they tell you that he is so smart it is really nothing to worry about. You see collegeman was hyperlexic, but hyperlexic with understanding. He could even write before he entered pre-school at 3 years old. He even read Hebrew too. Who knew at that time that hyperlexia was the first indication of autism? Not the developmental pediatrician we were going to. (As I have said before, there is no way that doctor will ever miss a diagnosis of autism ever again in her career. In fact I saw her name listed in a local magazine as one of the top developmental specialists in our area. Told yah, she would know her stuff).

As it turns out it really was a godsend that I never went back to work. I understand that the economy being the way it is and the cost of children, never mind special needs children in today’s world, is financially draining. So I am not not not casting aspersions on those that need to work by any means. I am just saying that I am one of the lucky ones who was able to stay home with my children and ensure that they receive the support and help that they need on a constant basis.

The interesting thing that happened at that time is that we did give collegeman speech therapy. No one happened to tell us that we could have gotten it through the county or the school system at the time, neither the doctor’s office nor the speech therapist. Considering that the majority of pediatricians I have come across don’t even know about early intervention I can’t really blame the doctor but I sure as hell can blame the therapist’s office. They acted like there was really nothing wrong with collegeman apart from his speech delay. I knew they knew something was not right, because looking back on it and knowing what I know now, they were keenly aware that something was truly amiss. They said that they had never had a child who could read and understand the way he could and still not speak. In fact they devised a way for him to learn to speak by using cue cards.

They wrote individual words onto index cards and then rearranged them into sentences so he would learn sentence structure. They also used the cards for him to learn conversation and how to follow directions. They even had me sign a release because they filmed him in sessions for their speech therapy classes. They wanted to show newly minted therapists the innovative techniques they had come up with. Then when the pediatrician said that there was nothing really wrong with collegeman and that everyone was crazy, they told me that I couldn’t bring him back there anymore without a letter from a psychiatrist, so much for their caring voices and concerns. But I bet using the films they made of him to show their teaching methods made them famous in their little circle.

Personally I am tired of the egos that are involved in taking care of special needs children. Yes, I have written on many occasions about the condescension of the professional in dealing with your child (here. here, here) (Yes, I have also written about those that are terrific with your child. Definitely here.) But this was more than that. This was abandonment of a child they knew in the back of their mind that was in trouble in the long run and all they cared about was that the pediatrician didn’t agree with them and that I chose to listen to the doctor. Well howdidoo, who would you listen to? The medical professional who says that everyone is crazy and that your child is brilliant with just some minor issues or the therapists who can’t figure out how to teach him and don’t know what is going on but insist they know better than everyone? You pick. Well we did and they abandoned our child. (Actually they would be the first to abandon collegeman, but unfortunately not the last professional to abandon him. Yes, I keep a running shitlist in my head and I may not remember that therapist’s (or certain teacher’s) name, but you can bet I remember the faces. Just once I would like one of them to run across me on the street in the City and we’ll see what happens).

Anyway, as the story goes, we did finally figure out what was going on with collegeman and we got him all the help that he needed. Talking is not a problem for him right now, well he does have some retrieval and processing issues but for the most part he is quite verbal and doesn’t really know how to shut-up. No, not complaining, not complaining at all.

As I mentioned collegeman had his wisdom teeth out this week. He was not very happy afterwards and did require the attention of his “mommie.” But then again when we are sick, thinking that your mom is going to take care of you really gives us all comfort. Anyway, my mother called the day after his surgery to find out how he was doing. He was lying in my bed watching TiVo and feeling rather sorry for himself at that point. Now not wanting to upset my mother, she lives in Florida, thousands of miles away without the ability to come over to help or hold his hand, I tried to make light of the pain he was in. But collegeman wouldn’t have any of it.

“All right, all right, are you nuts” he yelled, “Give me the phone.” He grabbed the phone out of my hand.

“Grandma, it is just awful. My mouth hurts and it is swollen. I can’t eat anything but mac and cheese, ok that is good, but my mouth still hurts.” He would go quiet for a few minutes as my mother consoled him and relayed to him stories about my wisdom teeth episode. “But grandma…just listen to what they did…” He then regaled his grandmother with the entire story from soup to nuts about his wisdom teeth extraction and how we were taking care of him.

I finally got the phone out of his hand and made him lie down and watch TV. He needed to sit quiet at this point and rest. He reluctantly handed me the phone and turned over and quickly fell asleep. (He was on strong pain medication at the time).

My mother relayed the conversation about how she tried to make him feel better by telling him about my surgery and how I survived and that he would be ok. I told her that he really will be fine and that I couldn’t believe how he just took the phone and started kvetching to her. I know my mother in some small way was thrilled because not seeing the boys very often there is still a wonderful connection between them and that collegeman and HSB know deep in the recesses of their minds that my parents love and adore them, and truly I think that the love and affection is very much returned by the boys.

But what got me choked up was that I started to remember the little boy who couldn’t put two words together until well into his elementary school years. I remembered the little boy who had trouble telling and relaying verbal information. What I saw was a young man who eagerly told a story to his grandparents about issues and problems and the horrible thing that we were putting him through. The days of the word index cue cards are long ago. But they will always be there for me. I guess I will always see the troubled little boy that he was, and be very overwhelmingly overjoyed at the very verbal, albeit kvetchy, young man that he became. Not the dream I had had when collegman was first born, but I'll take it.

Until next time,

Elise

Friday, June 18, 2010

Two Tests and One Surgery Down

I know I’ve been absent but oy va voy what a week. Getting HSB through finals is like pulling your teeth out without novocain. I have to tell you that this boy just doesn’t want to study. Now, ok, he did study for the chemistry final and thank God in heaven he passed. Ok by the skin of his nose, but he passed. This gave him a 74 for the year and I will gladly take it.


So how do I know what his grade was, his chem. teacher, who is a doll and a half, called to let us know that he passed and what his final grade for the year will be. Just love love love her. What a truly inspiring young woman. She actually cared that he did well and she knew that we were concerned. By the way I bought her a huge bottle of tequila as a present. I asked the principal if I can give her something. He said there was a limit, but limits be damned the woman could use a drink on me. Heaven knows there are times when a good stiff one does me some good where HSB is concerned.

Right now he is off to his history final. That should be interesting. Like his brother history is something he understands and can access without any problems. He sees the world as it is and just like collegeman is able to apply his thought process to the test with no issue whatsoever. Of course, this also meant that HSB did not really want to study too hard for the exam, but after a heart-to-heart with his father, he relented to some review. I hope he does as well as he thinks he might.

The interesting thing about HSB is that he does have an idea about what does and does not give him trouble. He can readily identify the issues that he has academically and he knows where he needs work. The problem with HSB is getting him to do the work. I know that this is truly a manifestation more of his teenage hood, rather than his aspergers, but it still drives me crazy. As I like to write on twitter #reasonparentsgogray.

So we shall she what we shall see after today’s final exam. Fingers crossed and then there is only one left, algebra 2. I need to contact the tutor for some extra tutor time. Luckily the algebra exam fell at the same time as the chemistry exam and there was no problem moving the algebra exam to the make-up day. Woohoo, he gets extra time to study and just spend time on algebra. I think it will make a difference for him that he can just spend time on math. He does know algebra, somewhere in the deep recesses of his 16 year old brain and I know with just a little more coaxing it will all come together and he will pass.

Now I am not looking for an A in the subject. HSB has worked hard to get his C. Sometimes as a parent you really have to be content with a hard won C. That is what I have always told both boys. A hard won C is something to be more proud of than an easy A. Being able to step-up to the plate, sort to speak, means more than laying back and letting the A come to you. So hopefully we can keep HSB on track for just a few more days.

Collegeman is recovering from his wisdom teeth surgery. The young man is a trooper let me tell you. He doesn’t complain, is relishing eating mac and cheese and has learned a real affinity for scrambled eggs. Oh and that rash was not from anxiety like we thought. The rash even after the shot given by the oral surgeon actually got worse, so puffy mouth and laden down with painkiller I took collegeman to the internist.

I was concerned that he may have had a recurrence of chicken pox. I had heard that you can get that in adulthood. Nope, not a recurrence of chicken pox. OK I know that was a stupid idea, but that is what I thought shingles was. The doctor told me that shingles comes from the chicken pox virus but it is something much worse and so much more painful. It is not little bumps all over your body. Well anyway he doesn’t have it, thank goodness.

Then I thought that it could be measles. Even though collegeman had a measles booster before he went to college, it was required by the school (and the state of New York), you never know. And with there being measles outbreaks all over college campuses I figured that the booster may not have worked and that collegeman had caught the virus. Luckily, no. Not measles and the doctor assured me that the booster should still work for a long time if not forever now. Shwoo. What a relief.

OK, so what the heck are the spots all over his body? They itch and are very mean and nasty looking. The doctor surmised that it is an allergic reaction either to some food he had ingested or something dermatological, since it was all over his body. OK. Good guess I suppose. There wasn’t too much else to go on. But what she did do was give him another shot of prednisone and a double dose of Benadryl to help the rash go away.

Knowing that he would probably have to take some Benadryl I purposely did not give collegeman his adderall. Remember there are always medicines that are contraindicated and you must must must learn what they are. In this case, adderall and any antihistamine that passés the blood barrier, like Benadryl, could send him to the hospital. So do your job, learn and be careful. It’s no different than when you as an adult have to watch what you take and when. Interestingly the majority of people that are sent to the hospital with drug overdoses are people who have colds who mixed OTC cold remedies. Please be careful.

Anyway, collegeman is must better today. Those mean little spots have almost disappeared and he for the most part is his happy go lucky self, of course, when he is awake. Between the pain killer and the Benadryl he does a lot of sleeping. But hey, you know what, sleep is good for healing and he is happy. He woke up for a few minutes this morning because he was hungry. Ate, took his meds and has now promptly fallen asleep.

Now don’t get all “oh my God she likes that the meds knock him out- how terrible” of me. This is the reality. When anyone has had surgery it hurts. It hurts like hell. When I had surgery they gave me some really strong pain meds that kept me sleeping for days. It is good for the healing process and it helps to not move around so much so the stitches don’t come loose and the clots that form the healing process stay in one place. Medication in my book is a gift that we have given ourselves as an advanced society. Thank heaven for science and medicine working in tandem.

What we can’t figure out, and collegeman actually brought this up, is why anyone would do this to themselves if they didn’t have to. Plastic surgery is still surgery. It’s one thing to have been terribly disfigured in an accident or to have a congenital issue like a cleft palate but to willingly put yourself under the knife for vanity’s sake I don’t’ know about that and I will never really understand it. But I suppose there is more to self-esteem for some people than some time in a therapists’ office (I am not talking about body dysmorphic disorder here, just regular old vanity).

Anyway, HSB is in taking his history test. He gets double time, so technically I may not hear from him til early afternoon. We will see. He tends never to take as long as he is given, so maybe by noon time. Collegeman is resting comfortably on the coach, hubby is working from home today and I need to go to the grocery store. Just a typical day in our home. I will update everyone about the grades and collegeman’s trek through wisdom teeth world in a few days. In the meantime fingers crossed and everyone have a really pleasant weekend.

Tuesday, June 15, 2010

Wisdom Teeth: Anxiety and Extraction

Wisdom teeth extraction is a very interesting phenomenon that happens to most young adults. When I was growing up it was a several day affair in the hospital. Today they take themselves to the oral surgeon. Sit themselves in a dentist’s chair and 40 minutes later out the teeth come. It is a relatively minor occurrence in today’s world. What a difference thirty years makes. But then again since everything else has progressed why shouldn’t this type of surgery have progressed as well? I know I learned that reality when collegeman had had his appendix out. I remember that in my youth those that had had appendix surgery were left with a huge scar across their lower abdomen, but today it is done laparscopically. The patient is only left with a one inch scar around the belly button. So much better for girls who like to wear bikinis or any European man who is partial to Speedos.


Well today collegeman had his wisdom teeth out. If anyone has kept abreast of the recent machinations of my child, they would know that we had had to reschedule the surgery because I had not been specific enough in my directions about preparations for the surgery. You see I had told collegeman that he was not to eat anything which he didn’t and that he was only to have a sip of water with his pills, but neglected to tell him that he couldn’t drink anything else. So on the original day of surgery, he had drunk a can of diet coke (OK it was caffeine free so he thought it was a good choice). You would think that this child drinks soda like crazy if he had drunk it at 8:30 in the morning, but not only doesn’t he drink soda in the morning, but he only has one can of soda a day and that is usually in the afternoon. So what possessed him that morning I have no idea, but luckily he told us and we were able to reschedule the surgery. No need to put his life in jeopardy for convenience sake.

So this time, we told him specifically no food, and only the sip of water with his pills. (Collegeman takes a cocktail of medications for his anxiety, attention and seizures. We checked three times with the surgeon before the surgery, that he should ingest all of his medications and that they weren't contraindicated with the anesthesia. I know we specifically told him several times nothing else to drink, no soda of any kind including, once would have probably been sufficient, but the children aren't the only ones who are obsessive in this house.) seltzer. Apparently if there is a problem the bubbles hide the ability of the surgeon to see what is going on in the stomach. In fact, we watched him like a hawk just to make sure he didn’t forget the directions. People may not understand this reality, but you can tell these children something and by the time they get into the next room they would have forgotten your instructions. And no I don’t live in a 9 million dollar Hollywood, eco-green mansion. My home is quite modest and the rooms are right next to each other.

Well collegeman, who has been partaking in the typical adolescent stay up until four in the morning and sleep until noon ritual, actually awoke up early today. He was up at 6 and complaining that he was hungry. I suppose when you are told that you can’t eat that is the first thing you think of. Normally the hunger pains are not there and nothing wakes him up. The boy will sleep through a tornado and has. But I had to remind him of the no food and drink rule. He took it in stride and hung out until it was time to go. Luckily we had the first appointment and had to be there by 8.

The only thing that actually happened which was truly disconcerting is the fact that collegeman broke out in a rash all over his body. He kept complaining that his skin was itchy and I really didn’t think much of it, because he likes to hang out in the bathtub and water dries the skin, so I just handed him some anti-itch skin lotion. We all got dressed and off we went. Of course for some reason there was a terrible traffic jam in our town, heavens knows why, we live in a relatively tiny hamlet but there was stop dead traffic on the road this morning. So hubby had to make a quick beeline and turn the car around and take the backroads up to the surgeons’ office.

Of course we were late and I had forgotten the phone number. I tried to dial 411 to get the number and without a doubt we were in a dead zone and no signal was going through. The irony here is that I had just switched phone carriers because of the dead zone in my home. I had been without a landline and a cell phone for two days and it was a really creepy feeling. So I had decided to switch to the carrier I presently have because I can get their signal in my home, but apparently I can’t get their signal in another part of town. I swear there is always something.

Then once I got through to 411 they had no idea what the number was. But I realized having a PDA I could go on the Internet and found the surgeon’s website. Without fail the website did not have the phone number listed, you had to search the site pages for the number. By now we were ten minutes late. I finally found the number and was able to call them. They didn’t mind and told us not to worry and that they were there waiting and it was fine. Through this entire slapstick comedy, collegeman was scratching his arms. Still didn’t really think much of it. Like I said dry skin from hanging out in the bathtub.

We made it to the oral surgeon’s office and they let us in right away. Collegeman sat n the chair and I went over to rub his head like he likes. It was then that I saw what was going on with his skin. The boy had broken out in hives all over his body, from the back of his neck down through his legs. He had them everywhere. It wasn’t even like little pock marks, they were huge pimples all over and they were red and very mean looking. The poor kid was so uncomfortable.

We knew he was nervous, but this is really the first time it had manifested itself in this way. He usually picks at himself, or gets grumpy and yells at everyone. I suppose he finally is learning to internalize the anxiety, whoopee. What an alternative for this child. Either have anxiety attacks or break out in painful hives. God, life sucks sometimes.

Anyway when the doctor came in, collegeman started asking questions and he basically didn’t stop. He started to explain how the last time he had surgery was when he had the appendix attack and then proceeded to tell the surgeon about what it was like to wake up from the anesthesia. He remembered everything even what the nurse wore and said to him. Sometimes it is such an amazing thing what these children do and do not remember. If you ever forget how different autistics view the world all you have to do is listen to what they emphasize from an incident. The things that stick in their mind as opposed to what a neurotypical may remember is so very interesting. These particular remembrances show you how the autistic brain works and how it functions.( No this was not on my mind at the moment as we waited for collegeman’s surgery, it is a review of the situation as I write this blog).

So anyway, as they prepped collegeman for the surgery they asked hubby and me to leave the room. Of course, hubby had me leave first. He wanted a moment with his son. Why it was deemed more important to him to be the last parent out of the room than me, I will never know, but hey I give hubby what he wants at times when it comes to the boys. So they put the laughing gas mask on collegeman and I left the room. Hubby followed just a few minutes later. Have to tell you I don’t care if they are having major surgery or just their cavities filled, but when your child is under general anesthesia you are on pins and needles. None of it is fun.

I remember when collegeman had his first foray into the world of anesthesia. He was 18 months old and needed some cavities filled in his molars. Yes he had cavities from apple juice. Who the heck knew that apple juice would do that to the teeth? This was before we were made aware of the amount of sugar in these juice drinks and were told by the pediatricians to give juice drinks to our children along with water. (I am talking almost 20 years ago) So they decided to fill the cavities because they were in his molars and he would need these until his tween years when they would be replaced by permanent molars. Interestingly most baby teeth cavities, I was told, should not be filled as they fall out anyway and they have no roots so no root canal worries (your dentist may think differently, so please check with them and don’t take my word for what is the appropriate care for your child’ teeth).

So after a very long long long 30 minutes, the doctor came out to the waiting room and let us know that everything went well. Collegeman’s teeth came out with no problems even though they laid near a nerve and that he would be in recovery for awhile and we should just sit tight. What a relief that was. I realized how shallow my breath had been for that entire 30 minutes and I let out a really huge exhale.

Finally after another 30 minutes we got to see him. He had gauze coming out of his mouth and was still hooked up to the IV, but other than that he looked like his own 19 year-old unshaven self. We waited until he could actually sit and stand basically on his own and was able to take him home.

The doctor had noticed the hives on collegeman as well, and agreed that it was probably due to nerves. He realized how nervous collegeman had been and was quite good and patient with all the questions that were constantly being asked. In fact collegeman came out of the anesthesia raring to go with more questions. The surgeon gave collegeman a shot with some steroids in it to help the rash and to keep the swelling down from the surgery. We filled a prescription for penicillin and a pain killer which should help with collegeman’s anxiety never mind the pain.

Right now collegeman is resting in our bed, watching TiVo and I even helped him eat some macaroni and cheese. This is like junk food heaven. For 48 hours he can only eat mac and cheese and ice cream. What a boy’s dream. Of course, collegeman being collegeman when we told him that that was what he was going to be eating he was happy but apprehensive. Now he is worried about his heart. We had to explain to him that the doctor told him that it would be OK. (The worries never do end).

But I think he is comfortable. He is propped up on pillows. Surrounded by TV remotes, handheld computer games, his laptop, water, gauze, ice packs (oh yeah don’t forget the all important ice on the face to keep the swelling down too), paper and pencil for information and question relaying because it does hurt to talk, his cell phone and landline phone. He is on major painkillers and seems relatively content. I just wish he would fall asleep and rest a bit. It would do him good. But I just heard him creep down to the PC and caught him printing out some Yugiyoh deck information. Nothing keeps this boy down. I had to chase him upstairs and physically put him in the bed. It’s good that he is so strong, but he needs to know when to rest too. He can just be so stubborn at the wrong times that it can drive you “batshit cray.” (If you had read my deleted post (taken down at the request of a sister-in-law) you would know that I promised to use this term in the next article I wrote. Again hat tip to Countering Age of Autism for the new fun term)

By the way, the hives are going down. It seems he is calmer and adjusting nicely.

Until next time,

Elise

P.S. How do you like the new layout? Wanted something a little more funner...Green also happens to be HSB's favorite color.

Don't Call Them Boys with Aspergers, Call Them Boys

This article originally appeared in amotherworld, June 9, 2010.
"amotherworld is a blog and online magazine for moms, supermoms and everyone in between. it's another world when you're a mom ~ we're all just trying to stay sane as we raise our kids!"


When I was asked to write this article about what our life is like in raising two young men with Aspergers Syndrome, I started to think about just what that meant. What did it mean to raise a child with a disability? The interesting thing I figured out is I actually have no point of reference for raising a child without a disability so the truth is I am not really sure I can answer that question effectively. But I think what I can do is tell you something about my children’s worlds. May be this will help the reader to understand what it means to be completely different than everyone else.

Yes, they are completely different, but you can’t tell by looking at them. There is no outward manifestation of any issues on an ongoing basis. It’s not like they need a wheelchair or walk with a cane or need to carry oxygen with them. Their disability is invisible and when you speak with them, there is no indication that there is anything out of the ordinary. In fact their language capabilities are far beyond that of the average person. So when they get overwhelmed by the sensory input of noise, or smells or even the feel of the clothes on their backs and have a meltdown or become cross for what it seems is no real reason, people just assume that they are for lack of a better word, brats.

You have no idea how many times parents of children with Autism Spectrum Disorders are told that their children are brats. That if they took a firmer hand or were better parents these children wouldn’t behave this way. We are told by total strangers yet, what is wrong with our children and how we should handle a situation that presents itself. I find it so amazing that there are those who would never interfere with anything in another person’s world, but they feel that they can tell you how to raise your child. I have been given more unsolicited advice from the most ignorant of people. Of course, I suppose if they weren’t ignorant then they wouldn’t be butting into someone else’s business. But I digress.  Read more.