In the beginning God created heaven and earth.
The Earth was void and without form and darkness was on the face of the Earth
God’s spirit moved upon the waters
God said let there be light and there was light
God saw that what he had done was good and God separated light from darkness
It was morning and it was evening, the first day…
I was reminded about the importance of beginning today. It is Earth Day and I know so many of us feel that it is total nonsense. But I began to think about that first line from the Bible. It does not matter whether you believe the Bible was written by the hand of God or by the hand of man. For the important point that is made in Genesis is that it all begins with the Earth. The Bible does not start its story about the dominion of mankind over the Earth or the animals of the Earth. It begins with the creation of the Earth. How everything upon it was lovingly made by the hand of God, that each and every blade of grass is a testament to the beauty and wonder of life. We as human being are charged with its care. We are the last things made in the Garden of Eden and there is a reason for that for we are not supposed to be the usurpers of the Earth’s bounty, but its guardians.
Even if you believe that the Book of Genesis was written by scribes in the court of David or written and rewritten by prophets and rabbis over millennia, does not matter. For the intent is still the same. Ancient man knew and understood what it meant to be a part of the world around you. They knew what it meant to be part of the rhythm of the seasons and the caretaker of the land. It was sacred to them. There is a reverence in those words that so many in our world have forgotten. We rush about our modern lives forgetting who we are and where we come from. We forget to stop and smell the roses and enjoy the beauty of a thunderstorm, the chirp of a new born bird, the song of a cricket seeking a mate, a kitten discovering a ball of string and a human baby learning to walk.
You know that I can still remember collegeman’s face when he discovered that he could stand upright. We were at my parent’s house and he had been “cruising” the furniture for months. It wasn’t a big deal for him, He held on and off he would go. He, then like all 11 month olds, would fall right to his knees and scoot off to his destination. Well my parents had a little dog; she had been abandoned and followed them home one day. A tiny misbegotten animal, which had been sorely mistreated wherever she had been, we knew she was not wanted for there was no collar or tags to identify her by, someone had just thrown her away. Instantly that pup and my mother bonded. (The dog has been gone for years now and my mother still misses her.) Well, collegeman left the safety of my parent’s couch and headed for the bookcases. There was that little dog, all 15 pounds of her right in his way. Collegeman instead of holding on to the bookcase held on to her and lifted himself up. Looked down at her, looked up at us, looked down at her, smiled and patted her on the head, thanking her for the hand-up. He realized that he was now taller than the dog. His smile was immense. He never crawled again.
It was a beginning of a new adventure for collegeman, and a new adventure for me. If I had not learned to run yet, I definitely learned to run at that moment. For he just didn’t walk he ran. Giggling and laughing and raising toddler hell wherever he could. That day the light was turned on for collegeman and it was good.
Later on in life there would be another light that we would need to kindle; a light that illness and evil had tried to extinguish with in my child.But as with everything that he does, collegeman pulled himself up, looked down and thanked in his own way those that helped him up. He thanked those that had given him a hand-up and proceeded to raise some kind of hell. He thanked those who gave him a hand-up by being who he was meant to be.
(I know there is a controversy about saying that autism is evil. But I am sorry, I think it is. I hate autism. I hate it with a passion. I hate autism with every fiber of my being. It is not part of who my children are. It makes it harder for them to be who they were meant to be. I am sorry if this offends, but I do not and never wll think of autism as anything good. It is what causes my chldren so much pain and hurt and trauma that there is no way I will accept it as a blessing. As I have said before I hate autism because I so love my children. Just as I would hate any disease that would rob them of their ability to live life to its fullest.)
Everything is a beginning I think. Everything that we experience for better or worse is an opportunity to turn on a light and separate it from the darkness. Ancient man knew that humans were endowed with this remarkable ability to mold and shape their world. We are given a set of gifts as we enter into the world and it is up to us what we do with it. When we learn to walk do we thank those that helped us up or do we mow down those that get in our way. When we grow do we grow straight and upright or do we sink beneath the darkness and destroy that which is good. What do you do with the gifts that you receive?
Genesis speaks about respecting the world around you. Thanking a little pup came naturally to a toddler; even one we did not know at the time was autistic. Perhaps it is a lesson we all should learn on this Earth Day and try to remember it going forward. We are given a chance to shine with the light. We are given this opportunity to allow the blessings of the Earth to be bestowed upon us. We need to thank the Earth and protect her. We need to remember that we are but temporary custodians of this planet keeping it safe for the next generation and making sure that it is safe and whole and cared for with our whole heart.
The Earth provides us joy, warmth, food, shelter, and sustenance. It provides us beauty by which to rest our souls on days when we think we could go on no further. It is a gift to us. It is how we stand upright to carry on. It is God or Mother Nature’s hand-up to a weary parent dealing with overwhelming issues and burdens. The irony is that we think our problems are so different than the burdens of generations or civilizations that came before. But they really are not. All people throughout the ages wanted a good life. All people throughout the ages wanted happy and healthy children. All people wanted to love and be loved. All people throughout the ages wanted the freedom to be who they were meant to be. But the one thing that they, ancient man, did that I fear we do not do enough, is stop and see what is around us and marvel at Earth’s glory and its wonder. So while we tackle our day to day existence and go about our world in our so very modern society, with our very modern problems, I hope that you head the words of the prophets, or God, or Mother Nature and listen to the wind.
But don’t forget to turn off the light when you leave a room, it is Earth Day after all and unwarranted electricity can eat up energy and fuel unnecessarily. Turning off the lights will also lower your electric bill.
Until next time,
I find that one of the hardest things to deal with when you are parenting an autistic child is the attitude of those that you feel are supposed to have your back. Yep I mean the blood-family that you grew up with. Whether it’s your parents, siblings, aunts, uncles, cousins or grandparents, nothing hurts when they treat you and your child as if you were pariahs, just like the rest of the community around you. It is supposed to be those people that you could turn to in a crisis, that they would be there to help you when the chips are down. It is those people, the ones you had, sleepovers with, watched firebugs, and 4th of July fireworks, shared your first everythings with, that are supposed to know how to just hold your hand. It is these people that you lived through every up and down and in and out of life that are supposed to remember that it is your turn now.
Well unfortunately it doesn’t’ always work that way. In fact, near as I can tell, it very really does work that way. Listen that is not to say, that my parents haven’t been great, and understanding. That I have an understanding brilliant-computer-sis or that hubby has supportive siblings too. They even try to understand and in their own way help. Most of them just live too far away and truthfully are entitled to their own lives. They have careers and families to raise just like we do. The truth of the matter is that my parents even live thousands of miles away, so while I talk to them every day, there is truly very little they can do except be there. I actually don’t tell them everything. They can’t help from where they are and all it would do is upset them. I am not really sure that you can ask for more than that.
But there are those that are “family” that are hurtful and mean and just don’t care. You try your hardest to deal with them. You try your hardest to see beyond the nastiness that they are spewing or the ignorance that they project. But sometimes you get to the point that enough is enough and it’s time to let go. Is there a timetable for when you know when to let go? Not that I know of, but I know when it happened with me.
Suffice it to say, we all carry baggage from our childhood into our adult lives, but a true grownup doesn’t allow that baggage to decide who you will be or who the other person is either. People tend to grow and change and mature and the things that they may have done in their childhood doesn’t really count. The problem you may come across is the fact that they don’t change. If they are jerks in childhood, they can continue to be jerks as adults. There is no hard and fast rule about that. I think you need to take each situation as it comes. I for one do have a sister I have not spoken o for over 7 years.
Why? It isn’t because she brought flowers and candy to the boys and was nice and respectful to my husband. I tried to overlook the childhood crap and I worked very hard at it. I remained friends with her long past the time I should have called it quit, just for my parent’s sake. They needed me to be the “good girl.” You know after awhile I said to hell with that too. After the umpteenth time that she was mean to my husband and the boys and me (name calling, swearing at, and ignoring), heck I even knitted her son a blanket for his bed, but she resented it because it wasn’t totally in his favorite color, I said it’s enough. She refused to invite my children to her stepson’s birthday party saying that they don’t like parties anyway; she carried on at my son’s birthday party to make herself the center of attention to the point that people thought she had to have been the wife of someone hubby worked with or why would she have even been there; she refused to come to my new house for Thanksgiving and kept saying she forgot to send a housewarming gift; she constantly told me how I need to raise the children and allowed her husband to be mean to my sons ( my parents even commented on it); she made fun of me to strangers at a party at her house; all this while I had been the older supportive sibling through every foible of her life….need I say more(there is plenty but you get the picture). I did promise my mother that I would invite her to collegeman’s Bar Mitzvah, just to keep peace and give my parents their fictitious view of the world, but when she returned an email saying communication between the parties is not wanted, I had had enough. My mother got an earful that day. (I did have to apologize, I think I finally cracked and yelled at my mother. That was not warranted either, but it was the last straw among many straws.) The problem with people that continue to treat you poorly is that they don’t ever think they do anything wrong, even when you point it out to them when they hurt you and they never ever learn to change their ways.
There is a lot of psychology written about frenemies. But what do you do when that frenemy is your own sibling? It does make it harder to break-up, especially when you parents won’t deal with it and have probably given in to that sibling their entire life. Funny today, my mother won’t even talk to me about my sister or her family; she knows that it is very unwelcome. My father can’t deal with it and still tries to bring her up. Luckily my mother does understand and will take the phone from him if he starts to cause trouble, He just refuses to see the really awful things she did and has decided that we, me and brilliant-computer-sis, should deal with it.
No, I don’t think it is easy for my parents to know that two of their children don’t talk to the third. I look at my own boys and know that what I would love most of all, besides that they should live and be well, is that they should grow to be friends. But it is also something that I cannot totally control. I can make sure though that they are not mean to each other. That there are no excuses for behavior, that they don’t pull bullshit and that they both held to the same standard. I can do as much as I possibly can to make sure they are kind to each other and that they do not take each other for granted or think that the other is more important to us and vis-a-versa. But I cannot make them like each other or guide who they might end up with in marriage (there I can try but I don’t want to become the wicked wicked mother-in-law either).
The truth of the matter is that as you enter the adventure called life and you move on outside your parent’s home, you are entitled to live your life as you see fit, and that includes demanding respect for those that are your immediate family. Once you are married that doesn’t include your parents or your siblings, but does include your spouse and eventually your children. (Now as far as the spouse is concerned we are going to make an assumption that you are married to someone who loves and respects you and treats you well. None of the spouse comes first stuff is for abusive or neglectful or hateful spouses.At those times, you run, run like the wind to get help, especially if you have children).
So I had had enough, and have given up on my sibling. I realized that I am a person and that my parents need to show me respect when it comes to how someone treats me including my sibling. I realized that my husband and my children come before some fictitious view of the world that my parents need. I realized that I used to get such anxiety before I went to see her, and that is not how it’s supposed to be and I know that because I have a sister who truly loves me, my hubby and my boys. Now it doesn’t mean that we don’t argue, fight and disagree. It doesn’t mean that we don’t give each other a hard time about things or tease each other as siblings do, but it’s different. There is respect and love and care and something cherished. There is an attempt that when we get together it’s not about one or the other, but about us all. I think that’s the difference. Something else too, family is not always about blood anymore. I have found wonderful friends and support among persons that I have no relation too at all. We care about each other and how the world treats us all.
I remember when collegeman was little and we just moved to town. It happens to be where hubby grew up so my sister-in-law knows everyone here. One of the parents in his kindergarten class was mean to collegeman and me because of his disability. Well, SIL got her friends to blackball the bitch for awhile. Made her life so terribly miserable to the point that hubby made his sister stop. (Too much overlap with business and community life for hubby’s taste) OK, it’s a little middle school, but the cow deserved it. Who is mean to a sick 5 year old, you tell me. The SIL also would be there for us if we need. Her hubby was there for us and her children were the kindest and sweetest to my boys. I can honestly say that about hubby’s other siblings too. They may not have understood what was going on, but they definitely tried and made an effort and their children tried and made an effort. It’s the way it’s supposed to be. Family is supposed to have your back. Now we all don’t see each other very often, we live in different parts of the country, but no matter what baggage they bring with them, hubby and his siblings make a huge effort to get along. What was in childhood is over. What is today in the world is real. They are real grown-ups and real family.
Sometimes what we hope for in childhood doesn’t appear. Sometimes we can’t count on those we thought we could have. Sometimes blood doesn’t define family at all. Sometimes we need to go out and make our own family circle. Sometimes we need to be creative about who we bring into our world. Perhaps our definition of family is changing in society. I sure hope so. There are many constructs of what family looks like in America today. It’s time for society to recognize that what defines family above all else is love, not blood, but love.
Until next time,
You might remember that I hired a village to help collegeman with his foibles over this semester. It has worked out exceedingly well. All the reports that I get are very encouraging and show that collegeman is definitely paying attention to his behavioral issues and working diligently on tackling his problems. In fact the last hurdle of the village happened last week, when the advisor collegeman had requested accepted him as a student.
Interesting things have happened for him this semester. In fact one of his classroom coaches, being an instructor at the school, has an in with the track team and found a way for collegeman to become part of the team. Now, collegeman does not run track. His idea of exercise is to sit on the exercise bike in the basement, and run his legs while he plays a video game. We did buy Wii Fit and he was doing that for awhile. But collegeman being collegeman, always attacking things head on without any moderation, pulled some of his side muscles so the Wii Fit has been put away for another day. What collegeman does for the team is to help keep track of the runner’s times and help set up the equipment. They even gave him this huge title: XXX College’s Mens and Women’s Cross Country and Track Manager and Record Keeper. Doesn’t it sound so important!
What was really nice for him was that this really was a positive social exercise. He found out that the students are nice to him and are very accepting of who he is. In fact, he went to two away meets, riding on the team bus and spent the time talking, interacting and doing homework. It was interesting, but not surprising, that the classroom coach told me that he was very charming, animated and personable. Of course, I had always known that he had possessed these gifts. The reality is that I am just truly glad that he is finally feeling so comfortable and happy, that he is showing his gifts to everyone in the outside world.
In fact, he has actually started to interact with some of the team members outside of anything to do with track. He saw one in the student pub last week and had a lovely conversation with her. She has been sick and was telling collegeman all about it. Of course, he gave her the advice one would always give, “stop running and exercising until you are better or you will die of exhaustion.” The young lady was so impressed that she immediately emailed the coach who was checking up on her health and told him that collegeman gave her the same advice as the coach had done. So it seemed that that was the consensus that she should slow down until she was better.
I think one of the nice things that made collegeman’s entrance into the team so much easier, is that his life skills coach went to a practice before he started to help out and explained aspergers a little to the kids. It did help. Listen, we all know that our children have idiosyncrasies that to some may seem odd and off putting. It is nice to know that once understood though, it is readily accepted. I have to tell you the students on the track team have been terrific. They accepted him right from the outset. In fact, it is my understanding that there will actually even be a runner next year who does have aspergers as well. So for all concerned, collegeman, the team and the in-coming freshman runner, it has been a learning experience and one with a tremendous amount of welcome attached to it.
I have come to the conclusion that education in society is the big issue when it comes to autism awareness. Once people truly understand what our children are about, there is no more mystery. There is no more fear. Now it doesn’t mean that everyone will take a shine to them. It doesn’t mean that they will not come across some assholes in their time. But for the most part, I think that if society gets a true understanding of the autistic world view, it might actually bridge that gap so that there would be fewer issues for our children as they age. Several of my blogging/twitter/coffeklatch friends tell me that they consider everyday autism awareness day, because wherever their children go, the world around them gets taught about autism. (Just some food for thought.)
Now I do have to tell you that the students were very impressed with collegeman’s intelligence. I guess the life coach explaining to them that he was smart didn’t really sink in until they got to know him. But hubby had an observation, can always count on him seeing things in a very different light. He asked did the other students think collegeman was bright for anyone or was he a bright for a person with a disability. You know I can’t tell. I really don’t know. But in many ways it doesn’t really matter. We all have our preconceived notions about who, what, where and how a person will be, even one with a disability, maybe especially one with a disability. But here a group of students met a person with an invisible disability. They saw, hey he is smart. It was a tremendous learning experience for them too. They saw that to have a disability doesn’t always mean a wheelchair or an intellectual handicap. That there are a myriad of disabilities in our world, all with their own set of characteristics and rules. They learned another lesson. That even if you understand that the person you are dealing with has a disability; it doesn’t mean that you know what that disability will look like. It doesn’t mean you know how that disability will manifest itself. It doesn’t mean that those with disabilities can’t give as much if not more to society than they receive.
Oh and one more thing. As I have mentioned before, collegeman’s college is known for being one of the most diversified schools on the east coast. At one point there could be 40 or more countries represented in its student body, never mind the panoply of students from across the United States. It just so happened that the young lady who needed the health advice, was from Germany. Now it is nice for collegeman that after taking several courses on the Holocaust, he has some really positive interaction with some young persons from Germany. Collegeman is very obsessed with holocaust and genocide. Of course, the fact that he is doing a history paper on Ahmedinajad right now doesn’t really lessen his obssessiveness about these two subjects. I had wanted him to choose someone else from the list. Someone with a more positive outlook and positive effect on the world, but no collegeman was determined to follow his desire to research this evil evil evil man. So sometimes you do have to let go and let them make some decision, as if I could have been there and told the professor which individual collegeman was going to do his paper on. Even if we had come to a consensus, collegeman would tell the professor what he wanted anyway.
I know that if he was actually away at school, he would have to make decision like this by himself and suffer the consequences. I know that I try to shield him from a lot and help him to reason out his issues. I know that the coaches do the same thing. But at times, I also know that he has to make his own decisions and figure out how to extricate himself from a mess or two. In this case, I had wanted him to find another subject just because the world is not as dark as this subject makes you feel. I wanted him to see the world in a more positive light. Heck, after learning about the Vichy government in Holocaust class, collegeman when discussing where we should go on a trip at some point in the future, is very adamant about never never going to France. Don’t ask me why France as opposed to any other country in Europe. But he has some kind of bug up his butt about that country. The problem is that I love things French. Truthfully it’s really a non-issue. It’s not like we have any money to go on a trip now anyway. It’s just nice to dream a little normalcy into your life. You know instead of figuring that every penny that you have goes for therapy, coaches, support systems and more therapy, coaches and support systems.
The truth of the matter is, that collegeman has made great strides in his social skills this semester. He is appropriate, interactive and charming. He has professors that deal with him well and coaches that help smooth some of the insecurities for him. I know he had gone on his own last semester but it just didn’t seem appropriate right now. It appeared that he still needed some of that extra support. But the time is coming when his village is going to have to disappear and that he will have to brave the world on his own. That is the next step. But I want it to be done well. I spoke with the aspergers support person at the college and we talked briefly about creating a plan for him for next year. We will have to see. I am waiting on the disability director to give me the ok for his support for next year. I want to present her with a plan that will eventually lead collegeman into a world of independence. I know deep down inside he likes having the support at the ready. It is comforting to know that someone has your back all the time. But if he is to go on to law school, as he wants and then enter the work a-day-world he will need to become just a little more self-assured and be ready to accept the consequences associated with making mistakes.
But for now, the village is in full play. The track team is open to their new manger. The school presents an interesting challenge to collegeman and he to them. It has been a good semester so far. Just three more weeks to go. O K, I am holding my breath and yes I do know that I do need to breathe.
Until next time,
To say that the end of the school year is always an adventure with Highschoolboy is to understate how the Earth’s rotation switches to counterclockwise, the magnetic poles interchange and everything is overcome by an inverted sense of reality. It’s really not as much fun as it sounds. I have mentioned how I loathe daylight savings time, not just because I am not really happy about getting up an hour earlier than normal. I don’t care what they say how you get used to it. You don’t and I am discombobulated for at least five months until they switch everything back to regular time. Well, HSB is the same way. The first thing that happens is that he doesn’t sleep. We thought that there was a lot of anxiety going on in his life. It’s the end of the year, work ratchets itself up, on top of beginning final prep and regent’s review, and of course he is taking the ACTs this Saturday. But I think it’s that he just doesn’t have the internal switch that makes going to DST very easy. Now I did give him some melatonin for a few days to help him adjust to the time difference. The neurologist said it would be fine. It did work, but being the pill hater that he is, he convinced everyone that he didn’t need another one. Well if he could sleep without it, then he is right. So far, he has returned to the normal, I don’t want to get out of bed teenagehood again. So we will see what happens as finals get closer.
Now another issue that HSB has is eczema. Every spring and fall too, with the advent of that lovely magical ingredient that we all know and love, pollen, he breaks out like no tomorrow. The problem that we have this year, akin to the pill hatred jag that he is on; he doesn’t want any of his creams. I have to tell you it is very hard to get a 16 year old boy to let you put cream on their body if they don’t want you too. It’s also a bit of a personal space issue and a “may not be so appropriate issue” if mom forces him to let her. The problem is that the eczema just keeps getting worse and worse. He scratches at it and he has developed big red blotches now. I did try to get him to do it himself, but no it’s goopy he said. He liked this new fangled cream that wasn’t goopy. The problem was it had alcohol in it, (made no sense to me in the first place since eczema is dry skin and alcohol is drying) and quite frankly did nothing. It really didn’t help the rash at all. So I threw it out. HSB was none too pleased with me about that. He liked it. But I had to explain to him how just because you like something, if it doesn’t work it’s not worth your time and effort. You need to use what works, even if you are not thrilled with how it feels. Luckily today he met with the school psychologist and she noticed the blotches and told him he needs to use his creams even if it is goopy. Thank God for pretty school psychologists, plus I think that the blotches were really starting to bother HSB and he needed a reason to give in to my demands of using his cream. She called me and I immediately was able to get HSB to put on the medicine.
Interestingly HSB has also developed a new phobia. I guess with the turning of the seasons and the inversion of the Earth’s rotation, HSB should have something new on his plate. Why not? Life was getting just a little; oh I don’t know, boring. So the school psychologist tells me that he has been spitting into his shirt in chemistry class. Apart from the fact that he is now walking around with a filthy wet shirt, it’s just disgusting. Listen, just because our little darlings do something doesn’t make it ok. He may have had his reasons, but it is so inappropriate to spit into your shirt. Plus I don’t think he would get that oft searched for girlfriend by being allowed to manifest really gross idiosyncrasies either.
Of course, the first step is to find out why he was doing that. The psychologist was able to wheedle out of him the problem. He is afraid of getting chemicals in his mouth. Now he has had chemistry all year. Used chemicals all year. Had chemicals in the room with him all year. Had a partner who used the chemicals all year near him. But suddenly in the middle of the last experiment he became terrified that he was getting chemicals in his mouth. It didn’t help matters either that his allergies are acting up. His eyes are raw. He showed me that his tongue is a funny color. That he feels generally under the weather from the pollen, so of course it’s the chemicals in the chemistry labs fault. (Maybe I can get him to take his damn allergy pill without a problem now.) Anyway, they came up with a solution that hopefully will not gross out the entire class anymore. He will spit into a tissue if he feels the need to instead of on his shirt. I sure hope that works. Of course, he still uses his shirt instead of a napkin at dinner so not sure how effective this solution will be. I’ll just have the school remind the aide to remind him to use the tissue. Independence be damned. This is why he has them. We are going to employ them to his benefit. Now if I can just figure out how to get him to use his napkin.
The psychologist even talked to me about him wearing a facemask. I thought it was a better idea than spitting into a tissue. It’s more hygienic and not so gross. He may look silly but I don’t think he understands that spitting into the tissue is also not the coolest thing in the world. I think he rejected her suggestion off the bat simply because it was a suggestion made by someone else. He told me he decided to use the tissues and that he didn’t want any face masks. We actually have some for construction use in the house. Hubby does do all the repairs in our home so he has them from working with all the caustic solutions and wood. They are made to vent bad odors. Perfect for chemistry class. Maybe I can have hubby talk to him. Convince him that it is better to wear the mask and not spit. We will see. He does think dad is the bomb and does really really really want to please him. So subtle dad pressure might just work.
In the meantime, I noticed something else that HSB was doing, and that was wearing his bowling team shirt. He had joined the bowling team at the suggestion of his case manager, when his best friend since 3rd grade dumped him without a word. The bowling team was terrific for him. He did need time to adjust, but went every Monday like a trooper. Bowled, played video games, ate chicken fingers, rode on the bus and socialized. He even went with them out to dinner on the last day of practice. What he didn’t want to do was wear his bowling team polo. All the kids on the bowling team were given a really nice blue polo with the bowling team logo in the upper left-hand corner. It was rather inconspicuous but something that showed HSB was part of a group. Well, as usual HSB balked at the idea of wearing it. The team members tended to wear it on the day they bowled in a game. He did not compete. Not because they didn’t want him, but he being a rather bad bowler, didn’t want to drag the team down. I think the reality was that one afternoon of bowling during the week was more than enough for him. It provided him an outlet outside of school, with the support that he needed, among people that were kind to him, but it also took him out of his comfort zone. We never did push the issue of bowling during the competitions, but we had hoped that he would wear the polo. But no, no polo. However, lo and behold in the last few weeks, guess who is wearing the bowling team polo? You guessed it. He likes to wear it now. I think a part of him finally understands that he is part of the group, oh yeah and the adults stopped nagging him about wearing it too. Sometimes he can be a real contrary pain in the ass. So tell me when does 16 become fun?
Until next time,
In honor of Holocaust Remembrance Day, I am reposting this blog which originally appeared in January 2010.
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 cemetary 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 millon 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.
This week marked an interesting international event. January 27th was the commencement of an annual Holocaust Remembrance Day. Now the Jewish people have annually marked this day on Yom HaShoah every spring for decades. So in many respects it was nothing new for me to see the services and speeches dedicated to the remembrance of genocide. But what was interesting was that you had an Israeli President speak before the German parliament in Hebrew. The grandson of holocaust victims speaking in the revived ancient language of the Jewish people to the grandchildren and great-grandchildren of those who sought to obliterate the Jewish people from the face of the earth, a truly poignant and redemptive moment in history.
I have written before about the Holocaust, its meaning for our children and why it is so important to remember such evil. Never forget, that before the Nazis began their campaign of mass murder against the Jews of Europe, they practiced on the disabled. Yet, while a large part of the western world stood in silent contemplation on that day, the overwhelming majority of college campus worldwide ignored this day’s significance. Even collegeman’s school which houses one of the largest holocaust libraries in the country had no ceremony of remembrance. I think it bodes an ill wind that the future leaders of our world are taught to protest, speak out, and march in solidarity against every global rights violation but cannot bring themselves to commemorate one of the greatest evils ever perpetrated by man. I leave it to my readers to wonder why, on college campuses, the world’s inhumanity to its Jewish citizens goes unnoticed.
A quick note: it is also important to remember that most colleges also do not offer appropriate accommodations to meet the needs of autistic students. It seems that the liberal world of academia is the last beachhead in the war against ignorance towards those with unseen disabilties.
While the world marked Holocaust Remembrance Day, the Jewish Agency, which is now headed by Natan Sharansky (a human rights hero who stood against Soviet oppression), released a report dealing with global anti-semitism. It is at a height not seen since the advent of Nazis Germany. Sharansky writes about the growth of modern anti-semitism with the three D’s. Holding the Jewish people to a double standard, delegitimizing them if they do not live up to that standard and then dehumanizing them so it is not a crime to murder Jewish people once again. These 3 D’s are rampant within the world’s media, international organizations and yes, on college campuses. But what does this have to do with our autistic children? Well here are my thoughts:
I believe there is a double standard when it comes to our children’s behavior. I have come to realize over the years that schools do have a very strict code of conduct for special needs children. Parents shudder every time the phone rings. Just waiting for that call that tells them their child is once again suspended for something they could not control. We joke that we are all survivors with PTSD, post traumatic stress disorder, from just waiting for the next detention, suspension or emergency conference at school. I still remember when Highschoolboy got in trouble for hitting a classmate in gym. The classmate by the way was cheating at a game, and no one would stop it even though HSB had pointed it out. HSB got detention. The cheater’s parents never even got a phone call. The school nurse was furious.The schools, she said, always blame the special needs child first. The problem here is that the adults who were supposed to be supporting HSB also did not get in trouble. They just got told to watch him closer. They failed in their job both as far as his behavior plan went, and quite frankly in teaching ethics and sportsmanship to the gym class.
Another case in point involves collegeman. When he was a freshman in high school, another autistic boy, who by the way has enough cognitive ability to drive and attend mainstream school, decided it was ok to hit collegeman and attack him whenever he could, especially when adults were not around. One day this child attacked collegeman, and collegeman ran after him yelling at him to leave him alone. The only interaction the adults saw was collegeman yelling at the other autistic student. They sent collegman home for abusing a fellow student and nothing was done to the other child. The then vice-principal, who is no longer at the school, told me that even though my son said he was hit since no adult saw it they were not going to take his word for it. Do you think they would have said that about a non-special education student? Luckily collegman’s case manager went to bat for him and eventually it got resolved in my son’s favor.
I think another reason that there is a double standard for our children is that they are always being watched. My boys have always had a one-to-one. I figured out one day, that on any given day in the school that there were at least 5 adults there to make sure they functioned. Most students have one adult supervisor and in the high school they really are on their own. Only if something truly egregious happens with a regular education student does the administration actually learn about it. But nontheless the rules are constantly applied to our childen without question.
The second D, is delegitimizing our children. How often have you been told that our children cannot think, they cannot play, they cannot laugh, and they cannot be like everyone else. As I have written many times before, the psychiatric community, school districts, state legislatures have decided that our children cannot show empathy, they cannot lie, and they have no ability to understand humor. It disenfranchises them of their humanity. It takes away from them the right to try to strive in the world and to make of their lives what they will. To delegitimize someone is take away from them their very basic human right of self-determination. No one has the right to take from our children the future of their choice. But it happens every day. It is only recently in fact, that children with disabilities were even considered able to go on to high education; that they weren’t shuttled into remedial programs and sentenced to a life of menial labor and state dependency.
The third and last D is the dehumanization of the special needs child. There is a law before Congress to Prevent Restraint and Seclusion of autistic children. Please call your representatives and senators and make sure they vote yes on this bill. The utter terror of it is that this bill is even needed. Who puts a child in a locked room alone? Who puts a child in restraints? Who sits on a child and refuses them food? Who hits a special needs child? Who votes a child out of class? These are all actions done to thousands of our children throughout this country every day. None of which by the way, is allowable in dealing with regular education students. Our children are not seen as equal members of society when they can be treated like this with impunity. We need to stand up and shout from the highest roof tops no more, and to borrow from the lessons of the Holocaust, never again.
I wonder what future generations will think of us. Will we be strong enough to fight the three Ds? Will we stand up and be counted? Will our children be able to turn to us one day and say thank you or will they want to know why we gave up? Will our children understand that we did everything we could for them? That we fought every step of the way? That we demand compassion be taught on our college campuses, to the future leaders of our world, that all be thought of as human beings.
Philosophers say that you judge a society by how it treats it weakest members. Our children are about as weak as it comes, and while some things may be getting better I think we still have a long way to go.
Until next time,
and I didn’t speak up because I wasn’t a Communist.
THEN THEY CAME for the Jews,
and I didn’t speak up because I wasn’t a Jew.
THEN THEY CAME for the trade unionists,
and I didn’t speak up because I wasn’t a trade unionist.
THEN THEY CAME for the Catholics,
and I didn’t speak up because I was a Protestant.
THEN THEY CAME for me
and by that time no one was left to speak up.