Restoring Faith in the Planet of the Apes

Ben with his sister and Orangutan Heroes at a Jane Goodall event recently.

There is hope. People who love America can also love the environment. They can, as my friend says, "Hug a tree with their hand on their heart!"

We learned this and many other wonderful things recently in Oregon. Due to my daughter's involvement in Orangutan conservation we had the incredible opportunity to see Jane Goodall two days in a row. We also met other real life animal heroes like Rich Zimmerman who runs Orangutan Outreach.www.redapes.org (He is the adult in the picture above.) He and his wife made quite an impression on Ben. So did Dr. Goodall. After a very tough week of trying to figure out where he fits in the world it was refreshing to hear Dr. Goodall speak about her efforts to save a species. Ben was moved, (right out of the auditorium at one point) Large crowds and all.....hard to be fully present when you feel like there are just too many people breathing your air....but Ben did listen from the door way, he heard her speak of her life long mission to save the chimps, and now her new goal to empower children. He felt invigorated by all the love and support in the room. 

     The very next day we drove to another town and heard her speak again. Both times Ben got to be a part of the Peace Dove flying. This is Dr. Jane's vision of cooperation and peace, giant white peace dove puppets flown by children. It was a sight to see.

     The thing that delighted me the most was to see the stress of the past week melt away from my son. He found a new hope and purpose and told me that he was glad we got to meet all these people. His sense of humor returned as well. That was a nice treat since we were trapped in the car with the boy for over eight hours.

One of his favorite things in the world is the breakfast that is served at hotels...more specifically he loves the waffles or pancakes that he can make himself. He ate five in a sitting once. Nothing like carb overload. At this hotel they had a little refrigerator with butter and jam and margarine. He asked me what the little tubs of margarine were and I explained that it is like fake butter, then added he should just grab one of the pats of butter....I was trying to get back to the table. Ben stood there for a moment staring at the margarine and said, "So basically they are just little buckets of lies....."

I cracked up. Yes Ben margarine is just made from lies.....

His view on the world is slowly returning to the funny quirky way we all know and love.

     He had a great first week at his new flag loving school. He told me at one point he sang to himself, "I'm a normal kid....yeah yeah....I am a normal kid....doo-doo doo!" Great song. I hope it makes it to the top 40.

     I didn't know when we planned this Oregon trip that we would need it so badly. We all benefited from meeting great people, hearing inspirational stories of animal lovers and connecting with people who feel the way we do. I feel blessed that I know so many amazing people and continue to meet more. I actually got to meet a scientist who has worked with a Chimp with Autism!   http://www.youtube.com/watch?v=qZ-Pq6slH3Q

     He gave us real tangible options for helping Ben with a few of his struggles. He suggested using scented pencils when he writes to help trigger that part of the brain, therefore increasing his learning capacity. Sounds too good to be true? Think about how quickly a smell can trigger a long forgotten memory! Ben loves the new pencils and has tried extra hard to write lately. Patrick also suggested teaching Ben American Sign Language so that he has a physical shape of the letters to help trigger the memory of how each letter is shaped. This has been a problem for Ben in the past and the new option is exciting to all of us. Bottom line to hear ideas of techniques to try,  instead of being offered a pill was refreshing. 

Getting out, meeting people, doing things, and yes being brave enough to move on. Overall I would say that life for Mr. Ben is pretty good right now. Thank you everyone....including the school that would not bend to meet his wishes. Because of you he has moved on and up. 

The Result of Patriotism....

The battle is over. We decided that it was not worth it to stay at a school that did not support our son's desire to be patriotic. I don't know how it is possible that in our country, in my town there is a place where a boy's desire to say the pledge of allegiance can cause him to look for a new school. I do know that after having his patriotism compared to being a fascist I no longer felt it was worth it to pursue a middle ground. That just ended it for me. When I explained to Ben what being a fascist was he was pretty much over trying to "fix" this too. The school can continue to say the "Earth Pledge" and we can go somewhere else. This is the compromise of our country. They have the right to feel the way they do, and we have the right to move on. What a lesson my ten year old son has learned.
     It has not been a lesson learned without cost. He has suffered nightmares and increased anxiety due to the sudden and unexpected change. He has spent many days crying over the loss of his friends and his beloved aide. Yet somehow in all of this he has come out ahead. He kept his love of this country, the love of the flag and the UN-ending support of his friends and family. The director of the school had told me during a phone conversation regarding this matter that perhaps Ben would learn that he doesn't always get what he wants. I was offended at this because it shows that she feels we give in to our son at every whim, and that this was a fight he would loose and he needed to accept that. That night our family had a big discussion about what it means to win. Would it be worth the anguish to try and stay at a place that felt so differently than we did? Would it be worth the months of fighting and arguing just to say a twelve second pledge? In the grand scheme of things. Yes. It would be, however in the grand scheme of Ben......not so worth it. A sensitive soul with no impulse control is really not cut out for a political show down.
     I had many friends suggest we should take this matter to the media. That perhaps with a little negative attention the school would change their ways. Sounds great except for the previous mentioned boy with no impulse control and no filter. He would be a disaster in an interview! 
     We have toured a new school, checked for a flag on the wall and have a meeting scheduled for next week. We are ready for the change and the stress it will cause for Ben. He is excited because according to him this new school has a "way better playground"
I am glad. I am grateful for the opportunity this little event has presented us. Ben will have a new start, a new chance at public school. He will be able to hold his head high and look in the mirror knowing he is not a person who backs down from his beliefs. He can be proud even while he is scared.

I pledge Allegiance to my latest obsession...

This is a picture of my Great Uncle, Boyd Wells. He is a World War two Veteran as well as a Veteran from the Korean War. In both wars he served in the engine room on a ship. He will not tell us what ship or talk about what happened to him during the wars. He says, "If you are talking about it, then you weren't really there."
     Ben had developed an obsession with all things WWII and we happen to have a visit planed with Uncle Boyd. Knowing he would not talk about the war, I worried that Ben would get (no pun intended) shot down if he asked a specific question. It went well, they enjoyed each other very much. At one point Ben got a little choked up and said, "Uncle Boyd, you aren't just family, you are a piece of history!"
That got him. My sweet little boy made a grown man at a loss for words....he stumbled over his next few words and to be honest I don't remember exactly what he said in return, but he was grateful, and stunned. Later on the phone he would tell me how much it meant to him that Ben gets it. He understands how much his Great Uncle gave to this country.
     Fast forward to this year at school. I was at back to school night the first time I heard that his class would not be saying the Pledge of Allegiance to the American Flag. Instead they would say a very beautiful poem about the earth. A sort of pledge to the Earth. I wanted to say something that night, but a room full of adults who just want to get home after a long day of work is not where I want to air my political feelings. Then, to be honest, I forgot about it.( I'm not proud of this....I blame my ADD)
After September 11th Ben told me that they aren't saying the pledge. His biggest concern was that they didn't even say it around September 11th. He felt this was somehow letting the country down. I told him I would talk to the teacher about it. Here we go....
Let me just say, since this is mostly about my son and his struggles, that for those of you who don't know me I do have very strong political and religious beliefs. I also have very strong friendships with people who do not believe the same way I do. I learned long ago that friendships meant more to me than being right all the time. Now I rarely voice my opinion to people. I just go day to day living my life....(well not really but.....)
So when I had to talk to the teacher I was very surprised that I was really really really upset about this. I got teary eyed and insulted when she said there just wasn't time to say the pledge every day. She went on to explain the school wants to promote global citizenship and that the Pledge Of Allegiance to the American Flag didn't really FIT with this. I gave all the appropriate arguments and got exactly nowhere.
     The next day I received a call from Ben's aide. He was a mess. He wanted to display the flag he brought to school in his classroom. (Not only do they not say the pledge, but no where on the school grounds is there an American Flag!) SO Ben, being Ben....brought his own. Not having social skills or really understanding how to stand up for himself he was highly enraged when the teacher told him she would have to clear it with the school director before he could put the flag up. His aide gave many ideas as to how to solve this issue, and nothing short of saying the pledge as a class everyday would settle it for Ben. SO I picked him up early.
That was Thursday. He missed school on Friday. I am hoping we have convinced him to return on Monday and wait to see how all this works out. He says he doesn't want to go to school at a place that doesn't respect our country. I understand this. Perhaps what made me cry when I spoke to the teacher about all of this is that I kept picturing my Great Uncle. I heard the tears and sadness in his voice when I called him on September 11th 2001 and he told me he couldn't believe his great country was under attack. I pictured the pride on his face when he showed my son his war ribbons, and I heard the humble way he told me how happy he was that Ben knew his war time efforts mattered. I have never preached patriotism to Ben. He just figured it out all on his own. He loves America, he is proud to be a citizen and he wants to say the pledge every day when he is at school.
     I have no idea how this will play out but I am sure I have offended the entire staff at his school with my blatant love for the flag. If we do stick it out, will my son be treated different? Will we? I can tell you one thing, Ben will not let this drop. He latches on to things like a dog to a bone, and there is no letting go. In this case I am proud. When his obsessions are about other things......it's difficult.
     He was in tears most of the day Thursday after school and some of the day Friday, although we did start our day at home with the pledge....we all said, "I pledge Allegiance to the Flag of the United States of America, and to the Republic for which it stands, one Nation under God, Indivisible with liberty and justice for all."
We timed it. It takes 12.7 seconds to say the whole thing.

No time to say that? Really?

With the good....you must sign up for some bad.

I haven't been writing. I am sure you noticed. There is a big loss in your reading material....totally my fault. I was told that the blog is best when it is funny. I haven't found autism all that funny lately. We started back at school, which I thought was going to be a good thing after all because, without even so much as one tear being shed we were granted a full time aide! Ben would have one on one help from the time he arrives until the time he goes home. Victory! Well......it baffles me how we could hand him all the tools he needs to succeed and he still manages to fail. Perhaps fail is a strong word....he is attempting to try. That is about all I will give him. He has gotten upset almost every day and tried to come home from school more than once. The problems he has are never that big, to the neurotypical person that is. To him they are mountains surrounded by razor wire. The first thing that set him off was a simple misunderstanding about what was going to happen next in class. He thought one thing, the teacher did another. This is where that ridged thinking becomes a problem. There is no such word as flexible in my son's world. The black and white world he lives in does not allow for quick shifts or changes in the rules. See, none of this is very funny. It is however our life. During the day while he is at school, I am home dreading the phone call from him. I am worrying he will never get past fifth grade, and he will live with us until he is 50 years old. My fears and worries somehow take over my day. I feel like I have been through a war. Then I pick him up from school and he is laughing and being silly and life is okay. He does bounce back, he does manage to somehow have an amazing sense of humor throughout all of this. I need to take a lesson from that. I need to let him be. Let him be a mess, a nervous wreck, a frustrated student, a boy who cries every day in class. That is so hard. At some point he is going to have to make it. I am sure it will be his sense of humor that will pull him to the top. (Or at very least pull him out of the deep end)
    We were at the store the other day and he saw a greeting card. He informed me that when he moves out he will be giving me and Dad a sympathy card. He said he knows how sad we will be. I laughed. He is right....we will be sad, but not if he is moving out at 50.
I don't really understand how things will go from here. He is in a new territory learning how to be without all the medications. He must learn to deal with impulses, frustrations and anger all without Big Pharma's "help". I hoped for a miracle cure. I hoped I was Jenny McCarthy.
So as not to end on a biter angry note.... I must say that slowly we are getting back to the funny side of Ben. Inappropriate humor seems to be his new thing. He is enjoying the shock and awe factor of being suddenly naked. This new trend has not appeared outside the home......yet. I hope that it stays here and I do not get a phone call about my son streaking across the playground at school. This totally falls into the category of no filter. As I am writing this I am remembering where he heard on the radio about these friends who, in order to shock each other, would randomly get as naked as possible with out the other person noticing. My daughter and I came home from running an errand today and Ben was cleaning the bathroom.....naked. Ahhhh yes......slowly but surely my life will be funny again.

School.....again....

The pages of summer are about done....

             This summer was great. Until about two weeks ago. Then it became something of a problem. My daughter started school on August 10th, with the rest of our town. My son, does not start until this Wednesday. The giddy feeling he experienced when he realized he could stay home while his sister went to school quickly faded.  He saw this meant that soon, very soon he would also be returning. School was not easy for him last year. Despite all we did to make the transition easy from home-school, to charter school, from being heavily medicated to drug free, from friendless to social butterfly....it all just became too much. By the end of the school year he was almost impossible to wake up. He cried and stomped around about how much he hated school....summer was a welcome break.
As I said however, the impending doom that is school,  has been hanging over him for two weeks. Like a man on death row I have seen all the emotions.  Anger, denial, grief, then finally acceptance........
I had to go to the school and attend a meeting so I brought him with me. Hoping against hope that just being there, seeing familiar things, and familiar faces would crack the shell. I was (thankfully) right. When I was done with my meeting I found my son with a new love of school. Yay! I was miserable about the prospect of having to hog-tie him and drag him to school in the trunk of my car, only to have a phone call ten minutes later from the office telling me he wanted to talk to me.
     We are all ready now. Next year, his fifth grade year I have so many dreams. I have to remind myself that unlike Jenny McCarty I did not cure my son's autism. He still has a hard time understanding social cues, (or as he says it-"I'm just really bad with people") He still gets frustrated to the point of tears over small things, and he still has very little impulse control. He also still can't write. He CAN but it is painfully slow. His spelling and math are waaaaay below grade level and he seems to have a fear of geography. Sigh. Oh but the dreams are there! I am pretending for these next few days that I have a normal life, that I do not have to fight at IEP's or demand help for my son. I am pretending that he doesn't have issues with other kids and that he can do all the things a neurotypical 10 year old is capable of. That when he arrives at school he will fit in, be liked and not under any circumstance show everyone his nipple family reunion.

      I am pretty sure all my pretending won't help. I know very soon he will be assessed for a full time aide, I will have to fight for him. His new teacher will see how easily he breaks down, and the kids will remember how volatile he can be.  I will see the tears of frustration, both in the mirror and on his face. I will clash with the school district. I will beg him to just get through one more day. I know not all kids with aspergers or autism feel this way about school. I know some aspie kids LOVE school. They love the order, the predictability, the learning. Most of them probably don't love recess, or lunch. Too many variables. My hero is Brick on a television show called The Middle. My favorite episode is where he and his "friendship club" all got kicked out of the library at lunch time. Their safe haven became unavailable and Brick worked to regain his rightful place among the books. True to the spectrum world all his "friends" had different issues making recess unbearable for them. It was priceless. It was a very good depiction of how a kid with autism sees the dangers that some call recess. I guess I better add pretending my son wont hug or bow down to a tree during recess...... This fantasy world is a nice place to visit....
I think I'll enjoy it a while longer.....

A Wild Wacky Summer

Thank God we have great neighbors. The other day, after playing in the front yard for a few hours my son had the idea to take his bucket of water on a tour. He some how managed to drag a storage tub full of water over to our neighbor's house, ring the doorbell then climb in before they could answer the door. This is a picture  that my daughter drew. It  is a very accurate representation of what they saw when they opened the door. Ben said that when they answered he said, "Blub Blub in the tub." They stared at him for a minute then just slowly shut the door.....really what would you do?
     I have taken a break from my blogging mostly because we have had such a busy summer. We have been camping and traveling to see relatives and all in all enjoying each other. The summer has been good, but not without problems. The one day I tried to remind Ben of what education was like he melted down until about midnight. Apparently doing math over the summer is paramount to child abuse in his mind. He doesn't just get mad, or upset....he melts. He turns into this blob of anger and sadness that has no rhyme or reason. I tried to explain that most kids, (including his sister who was forced to "enjoy" math camp) review information over the summer. Finally at midnight when I could still hear sobbing from his room I told him we would take a longer break from the evils of education. I didn't say it like that but it was midnight so I can't really remember what I promised him.
     Since then he has been doing fun, strange things like sitting in a tub of water on our neighbors porch. He has enjoyed many activities this summer. It has been a different life for sure. He has played with friends, even had phone calls from other children! I have been pleased and bewildered by his social progress. Interestingly enough though, as "normal" as I think he has become he still has a different way about him. We recently went to a party at a friends home. There were about 12 boys in the pool all around Ben's age. They were playing like boys do.... I watched. Ben waited all of about three seconds to get in the pool, but he did not join in. He payed them no attention at all. He jumped in and floated on a raft and jumped in again and it seemed like he was all alone in the pool. He caught my eye several times to smile and wave. He was happy. That is what counts after all. I think in the past all the commotion and rough housing would have sent him into meltdown, but now.....he just played.
I have been impressed with how well he handles things, (except school work) and he notices too. He did something the other day that I know for a fact he would not have done a year ago. We were at a baseball game and a ball was hit into the stands. Somehow my son ended up with the game ball for about two minutes. It became very clear that a boy had been hit with the ball and then to add insult to injury he didn't even get to keep the ball. The crowd was yelling and encouraging my son to give the ball to the hurt boy and without hesitation he walked over and gave it to him. He then came back to us sat down and tried to hold it together. Apparently he REALLY wanted that ball. It had been his mission to get a game ball. He was devastated. My husband bought him a ball but it wasn't the same....it was clean. Not all covered with game dirt. A dear friend convinced her son to part with his game ball....(it was a prolific game ball day at the stadium) so Ben got his game ball and had it signed after the game. He was happy. I was proud of him and when the family approached us after the game to thank Ben for returning the injurious ball to it's rightful owner, I wanted to say, "Oh you have no idea how great that was that my son returned the ball! He isn't great with compassion or sympathy for others....so count your blessings!" Instead I just smiled and said "You are welcome!"
    

Tent Camping, or "trapped in a small space with Ben"

Ah the camping experience..... We recently enjoyed a few days out in the great wild outdoors.  There are many small lakes near our home so in the spirit of the "Stay-cation" we tried a local lake for camping. Unfortunately the lake has a rather obnoxious name. Butt Lake. Seriously? Was this named by a ten year old boy? Or more specifically was it named by my son? His latest obsession seems to be that charming potty humor we all must deal with at one time or another. With Ben, it is a constant. It must be part of his "no social filter" because once something is funny to him, it will remain funny for life. This is true even if it is repeated four hundred times. I live in fear that I will chuckle at some inappropriate time and that moment will be forever burned in his memory as a show stopper. In fact he did put on a show of sorts for us, around the camp fire he said that we should do a Family Stand Up Comedy show.....he turned out to be the only performer since none of the rest of us had material ready. Some of his jokes were pretty funny, however disturbing....not something I would be proud to write about that is for sure!
     The first night we all slept in one tent, and when I say all of us, that includes the three dogs. It was a bit crowded and well, smelly. Ben has had a bad run of being gaseous lately and he enjoyed the fact that we were all hermetically sealed in a little space with him. He is, as I said fascinated with anything gross. After a few moments of silence he said in a strange voice, "Anyone want to hear the story of my bowels?" The he giggled uncontrollably for a few minutes. Once he regained his composure he proceeded to tell us a charming story. (Again, I wont be repeating this....) He was thrilled. Sadly he has a very contagious laugh, so even if what he said isn't funny, its hard to maintain a straight face when he is cackling. So then, he thinks we are laughing at what he said! Just can't win.
We met some very nice people while we were up there and stopped by their home on the way out of town. While we visited I realized I had not done my typical, slide into the conversation that my son has autism. These folks had no disclaimer at all.....so when we all laughed at something the husband said I was horrified when Ben said, "OH that reminds me...."
Now let me explain just for the context here, that both of my children are famous for this...they will interrupt a conversation with some totally unrelated story. Since my daughter does it too, I am sure it is not a character trait exclusive to autism....
So what reminded my son of the story he wanted to tell was not what had been said, it was only that we laughed. He thought "oh laughter, something funny, I remember something funny, something Mom told me, we all laughed, we could do that again if I tell the story!"
I am convinced this is what went through his brain. So then he proceeded to tell a totally unrelated story about how when my husband and I lived together in a two story apartment my charming husband would chase me up the stairs slapping my legs as I tried to run. It was enormously annoying, which is I am sure why Ben finds it so funny. I have told the kids that we can't live in a two story home ever because their Dad is not to be trusted around stairs.
      We had just met these people, and again they did not have the Ben Disclaimer.... Surprisingly it still went well. I am going to try and just let it be. Just not say anything about my son and why he is the way he is.....This will be hard for me. Perhaps with a few more camping trips and meeting new people I will learn. Ben is already to head out for another family adventure. Long live the summer and my nutty little boy.