Sunday, October 28, 2012

Sixth Grade, Bullies, and...... stuff

     It is October. Apparently that means a couple of things in America. It is Breast Cancer Awareness Month. Everyone wears pink and "likes" things on Facebook in hopes of curing breast cancer. (Not a lot of concern about what is causing this....but hey I guess its more important to fight for the cure)
It is also Bullying Awareness Month. This is where you hear and see a lot of programs to obliterate bullies. (Again not a lot of concern about what is causing theses kids to be bullies, but what ever)
     My son is a target. He always has been. I worry he always will be. I sat in a PTA meeting recently and heard all about how the school he attends is aggressively fighting against bullies. I bit my tongue. I know for a fact they are loosing that fight. In this same meeting where the parents were thrilled to see that the school was doing something so that all kids could be treated fairly I heard that the PTA decided to give money to all the teachers, from the recent fundraiser, with the exception of the special ed teacher. If she wanted money she would have to come to a meeting and ask for it.                                So we want our kids to be fair and kind, but as adults we are incapable of this. I had to walk out of the meeting later when the PTA members began to yell at each other about the wording of the minutes. I just don't have the time or the heart for that kind of crap.
     We talk about bullies a lot in our family because we seem to encounter them rather frequently.
Ben has asked to participate in this blog, since,  it directly affected him.
In his own words:
"Since being on the spectrum, I as a kid with autism, will just stand in the spot where we line up after recess. Since I wear a watch I, and remember the times that recess starts and ends, a minute before I would go and line up. I wanted to be the first in line so I could hold the door open for people and basically make more friends. When the class was going in the bully uttered the words, "you don't always have to be first." I told my aide about the incident and he talked to the bully about it. This went on for quite a while. I still kept track of time during recess, and the bully enlisted a friend in class to try and stop me from doing what I wanted. For example I knew that the last person out of the class during a fire drill is the first person back in. The bully got his friend to try and get in front of me when we turned around. This made me feel awful and I felt like everything in my head that was nice to other people was actually the meanest thing on earth. They made me feel like I was being a jerk for wanting to hold the door. Eventually the bully got bored and now we are on good terms and we both are kind of nerds ourselves. We talk about games like spore and shows like Ninjago Masters of Spin-Jitsu."
     What gets me about all of this, is that during the time this was going on, the class had a guest speaker come and talk about Bullies. Ben's aide talked to the bully and Ben about how to resolve the issue and the only person that accepted the advice or understood the affect that bullies have, was Ben. The other child that was causing the turmoil did not see he was in the wrong. He, in fact turned around and glared at Ben during the anti-bully lecture like it was Ben's fault this conflict was occurring. The only thing that stopped this kid from picking on my son was just what Ben said. He got bored. Ben continued to be nice, mind the time at recess, and hold the door. Eventually this no longer bothered said bully.
     The kids that need to hear these lessons the most just do not understand. They do not feel that they are being mean, or disrespectful. Ben was approached by some kids on the playground a week or so the heart of anti-bulling month....they asked him if he wanted to play with them. While he contemplated this offer, one of the kids asked, "Wait, are you Jewish? Because we don't like them." Ben said no he was not, then when asked if he wanted to go play he said, "No thanks...see ya around the playground." (In true Mike Birbiglia fashion.) Ben later said to me, "Seriously what do you say to that?" I agree. How is it that in this day with all the education about how to be nice there are still jerks roaming the playgroud.....I'll tell you why. They are the direct product of their parents.
     My daughter was on a sports team recently. This was the first time for this family to be a part of a sport. She loved it. The team was nice and supportive of the kids who were not the best at the sport. The parents seemed to be as well. Until I noticed something. The entire crowd of parents would root and cheer for a boy with an obvious disability, and yet all of these supportive parents would shun and act mean to one kid with a not so obvious disability. I do not believe you can cheer on the kid with one impairment, then turn around and yell at the other kid that couldn't follow directions. After one encounter that I witnessed I pointed out to the parent that I thought this particular child had aspergers, and that is why it was so hard for them to follow the directions given by the coach. The parent responded that the child was annoying and should have done what the coach asked. I said, "again, I think the kid has issues with following directions, and they need our help and understanding so they can be successful in this sport."
The parent turned away.
Well there you go.  These are the parents that teach their kid to be mean. This is the cause. Now....on to the cause of Breast Cancer.....

Saturday, May 26, 2012

Becoming a shut in...My son's summer dream.

Ah summer! Thank goodness school is over. No more waking up grumpy children, or rushing around in the morning,trying to make lunches, getting dressed, finding backpacks and getting in the car all by 7:30am.
But wait. Summer means NOT having to go anywhere. This can be a good thing, for a while.... But with us it very quickly turns into a problem. My boy, when allowed to, will stay inside this house till the end of time. Once a routine is established it must be adhered to, even if you didn't intend on having that behavior be a "routine"!
So what do I do? This summer I have some very specific things I want to accomplish. I want my son to learn how to be a friend....I want him to learn that it is not okay to climb the tree in the back yard and stare at the neighbors.( hang on I need to yell at my son to get out of the tree)
I want him to learn to be more flexible when things don't go his way. While I'm listing my dreams of summer I might as well add that I want my body to return to its 20 year old glory.
Most of my wish list will not come true.... But seriously I do want Ben to learn the art of friendship. This means I am going to have to allow other children to come over. I'm going to have to stop being so uncomfortable when he is talking to someone.
I think I have said all of this before. Since then I have not made much improvement. I guess I fight change as much as he does!

Thursday, May 24, 2012

End of an era....or 5th grade.

The end of the 5th grade. How is this even possible? I feel like I have gone through some kind of time warp. This school year has been filled with so many things, patriotism, angst, joy, anxiety, frustration and finally happiness. My little man has lucked out at his new school, getting the best aide in the district and being in a wonderful class. He asked me the other day on the way home from school, "What are the odds Mom, that I would end up with a guy like Scott for my aide?"
I said I didn't know but that we were all so happy it finally fell into place for him. This year he achieved so much. He is writing better, doing math and spelling closer to his grade level and generally enjoying life. That is the best part. The whole, " happy with life" thing that used to seem so elusive. I asked Mr. Ben if he remembered how he felt when he was supper medicated and he said that he only remembered barfing up a tomato. I, thankfully, do not remember this. Things are better by a long shot, but not perfect. Many days he is still in tears about something that he feels was a great injustice. It makes me think back to kindergarten when his teacher told me I needed to get that crying thing under control, because well kids who cry don't have a lot of friends. Fast forward to 5th grade and he still gets upset, he still cries, and he doesn't have a lot of friends....perhaps she was right.
     His sense of humor is still intact, even on the days he cries. He tells jokes that fly over the other kids heads. Thankfully his aide Scott is ready with a laugh and a smile. I told Ben that he just needs to play the imaginary saxophone and walk away when the kids don't laugh, stealing from our favorite comedian Mike Birbiglia. He says that when a joke fails it's like playing Jazz badly. You know, like Kenny G.
     There are so many memories from this year that I hope he can hang on to. The fact that he wrote a book, (seriously his handwriting) telling a whole story....unbelievable....but true. The field trip to the science museum, the report he gave on titanium, and that wonderful movie they make all the 5th grade boys watch. Yes. That happened. I spent the day he watched "THE MOVIE" in the fetal position in my living room. I was so relieved to hear that he did not ask or say anything unusual. In fact, he did have a question but he saved it for me in the privacy of the car. I was worried, but it was actually a very intelligent question. Apparently they had talked of the pituitary gland in the film and how important it is for growth and development. Ben knows that his cyst is very near the pituitary gland. He had an overwhelming fear that he would not grow, and would in fact, be a little person. I assured him that this was not going to happen, he was growing quite nicely and eating me out of house and home. He was relieved and so was I. He seems to be learning what to say, and when. I wish this were true with the rest of the world. I do still want to hang a sign from his neck some days, that reads,
"Literal translations of your comments 5 cents."
He takes everything so seriously, so does my daughter. Puts me back in that frame of mind that I need to write my, "Care and feeding of a literal child" book.
We recently had an evening with some old friends and Ben was immediately in love with their large black and white cat. The friend jokingly said to him that the cat was for sale. Ben used my calculator on my phone to estimate the cost of food and care for the cat before asking me if we could manage this purchase. I had to break it to him that the cat wasn't really for sale. I might as well have punched him. He was devastated. Seeing things like this makes me understand, how in the course of the day at school he would end up in tears. It has to be frustrating to hear people and not fully understand them.
     Next year in the 6th grade I hope he can learn a little more about other people's sarcasm. He knows mine. He can learn. I also hope he finds a friend or two. I have heard that by Jr. High kids with aspergers tend to start improving in all aspects. I hope so. I am seriously tempted to follow him around when he gets to 7th grade. (That will make him popular!)

Sunday, April 1, 2012

Walking in the park with autism...and other adventures.
Please take a moment to check out the new non-profit that will benefit local children affected by Autism. (Then come back and read my witty recount of today's events!)

     Today was the first time ever that our little town of Chico had a walk for autism. It was fantastic. Run by a very energetic and loving Josie Cline the whole thing went off with out a hitch.... well from where I sat, and watched the people walk by. I waved like a queen acknowledging her subjects as the throngs of enthusiastic people streamed past. My brave husband took the children on said walk. I did not sit out by choice, it's just that a few short days ago I had my gallbladder removed from my body through my belly button.(Neat trick really) This non-essential organ had decided to stop working and as luck would have it my surgery was scheduled right before our big WALK.  I tried to convince the surgeon to take a little extra nip and tuck while he was in luck.
     I loved seeing all the people that arrived for the first ever Chico Autism Walk. I could tell that everyone was excited to be there. I was too, but happy for the bench I found. As each person walked past I wondered how autism had touched their lives. Some were obvious parents, resting a hand on their child as to not loose them in the commotion. Other people were more difficult to place, were they friends or neighbors or just concerned about this ever growing epidemic? The Chico State Greek system helped out by acting as volunteers and cheering the walkers on as they left for this epic journey. I secretly wondered how many of them would be touched by this personally as they finished school, found the love of their life and married. How many young people today will have children with autism tomorrow? They have just changed the numbers again, now instead of being 1 out of every 110 kids, the numbers are now more like 1 out of 88 children. Holy Cow.
     Take in to consideration that, yes we are more aware of the signs, symptoms etc now, but seriously why has this not been declared a national emergency? With my vast knowledge about the subject, (ha ha ha) I declare half of the people I meet fall somewhere on the spectrum. I probably mentally diagnose way more than the statistics indicate. I must admit, thinking I was suffering from an ulcer for the past year and a half instead of a faulty gallbladder, has shaken my confidence as a diagnostician.                                                 So what if this is the case for some of these recently diagnosed. A few years ago it seemed like everyone had carpal tunnel syndrome, now I never hear about it. ADD and ADHD also became popular  recently. What about Chronic Fatigue Syndrome? Everyone had that too a while ago...the frenzy has died off for that as well. I am not saying anyone of these conditions is not real or worthy of some serious intervention, but why does it seem that we see spikes in medical diagnosis? As doctors learn about maladies, are they trying to please the patient with a name for their problem? Or is it that more people are aware of these maladies now thanks to the internet and Dr. Google so they are rushing to the doctor because they are desperate for help and answers?
     What ever the reason or cause I know that Chico cares about this matter. They care enough to come out on a Sunday and walk together to show their support. They care enough to set up vendor booths, (Awesome job Caroline Rhoady!) and provide a sensory play area for the kids after the walk. They care. I am so grateful for that. I am also grateful for whoever realized that this is the perfect time and place for Storm Troopers to walk among us. I hope that in future years I will be more of an active participant....or that they have a "Sit on a Bench for Autism" day....My family was among the first people to finish the walk and we promptly left. Wearing jeans and sitting turned out to be harder than I thought. Thank goodness it never occurred to my family there was more to come after the walk...I am sure it was wonderful.
     Next year and the year after that, and so on, this walk will continue. It will grow and change and become even more amazing. It will never be the same as today however, when for the first time this community came together to say, "I care enough to walk along side you."
Thanks Yellow Door. You Rock.

Monday, February 20, 2012

The Russians have invaded....

Every year at Christmas we indulge our inner child. We purchase way too many toys for our kids. This past Christmas we tried to be a little more sensible, get things we knew they would really like, actually play with and would last longer than a week. I guess where I am going with all of this, is trying to justify why we allowed two Russians into our home. Small and furry and not at all like you would expect, but Russians none the less.
We bought two miniature Russian Hamsters. My daughter named hers, (what else) Vladamir, and Ben chose Nibbler. The name fits the hamster well, but it is from one of Ben's favorite television shows, so points off for no creativity.  We knew how our daughter the animal lover would feel about sharing her room with a new little life, but we weren't so sure how Ben would take to this responsibility. The cages we purchased, which by the way cost way more than the actual inhabitant, reflected our worry. Daughter got a heavy duty hamster cage for her new little friend and Ben received a light easy to transport cage. This was, just in case he did not want the rodent in his room. Seriously with his horrible allergies we also worried this might not be the best place for said Russian to stay. We designated Sunday for cage cleaning day and I have to say I am pleased with my children and their commitment to their new little friends. I worried that Ben would grow tired of the hamster or even be a little too rough with such a fragile life form....possibly because the last hamster we owned was subjected to a few things that caused a certain daughter to be bit....apparently hamsters do NOT like hair clips....
     The first thing Ben does when he gets home is run to his room to check on Nibbler. I hear him say things like, "It's okay I am home now!" He is kind and compassionate and loving to his new friend. More than I could have hoped for. My daughter seems to be very happy with Vladamir as well. 
Because they were gifts we could not bring them home right away. We bought them on a Tuesday and Christmas wasn't until Sunday  so my dear mother in law offered to keep them with her. She was a perfect grandma and fussed and worried over them for the few days before Christmas. I knew that Vladamir had a more outgoing personality and that Nibbler tended to be a little shy. She and I both worried that maybe Nibbler would be aggressive or just hide all the time.  On Christmas morning when the new little friends were unveiled the kids gathered around the cages and watched both of them commenting on their activities. Ben asked why his hamster was hiding while his sister's seemed to be very active. I said to him that he was just a little shy, and once he got to know us he would come out more. Ben slapped his forehead and said, "OH great! My hamster is autistic!"
Turns out he is not. He is just a social now as his counterpart Vladamir. Thank goodness.   Ben is very happy with his new friend. I don't recommend this pet to everyone, and I certainly don't think very small children should be allowed to be alone with hamsters and hair clips....but now, this time it seems to be working out just fine.

Sunday, February 12, 2012

Foot nudity and other things

"Fro" Football Player
     It has been some time since I took time to sit and write about my boy wonder. I was surprised to see the last entry in October! Wow. I must have been busy living life...I know things have been changing for said boy. He has a new aide at his school that has been wonderful. He has been trying extra hard to write and spell and do math....all the things that up until recently he was just too overwhelmed to attempt. We definitely feel a new page in his book is being written. He is more determined than ever to catch up academically with his peers. We are currently waiting to have yet another test to see if some professional can determine why he has the deficits he does. It amazes me that this boy can pick up any given Lego and tell me what set it came from, and yet mastering the memory of 2+1 eludes him. Some days he can rattle off math facts like a "normal" kid. Other more concerning days he seems to look at the numbers as if it was the first he has heard of this thing called MATH. 
     Through it all and above all else this boy wonder has developed a sense of humor that rivals the best stand up comics. He keeps us laughing with his weird observations and comments. His dreams even conjure a laugh every now and then. A good example of this is the dream he had recently about an orange that was so despondent he decided to juice himself. This made the orange girlfriend very sad so she also juiced herself. Dark? Yes. Funny? Well we think so. He is still painfully honest about his observations however and these sometimes can be inappropriate.  He says what he thinks. Politics will probably never be in his future! He follows the Colbert Report and the John Stewart Show and "gets" the jokes that should be over his head. I enjoy his world views, his quirky ideas and his sense of right and wrong. 
     It is always fun for me to see others learn about my son. His new aide has enjoyed this oddball sense of humor first hand when my boy decided to take off his shoes momentarily at school. He warned, "There may be brief foot nudity" before unleashing his foot. The aide found his comment hysterical. I know that what ever life throws at this kid he will meet it with humor and confidence. That is a good thing. 
     Recently I spoke as part of a parent panel to local officers. There were people in the audience who have been affected by autism first hand, others knew of a close friend, but all seemed to understand this condition. That is progress. I use to live in fear that someday my boy's odd behavior would cause a run in with law enforcement that would end in him meeting a taser up close. Before the talk I asked Ben what he would do if he was in an emergency situation and there were officers asking him questions. He said, "Well first I would tell them I have autism."
Yes because when it takes you two minutes to answer a question it can mean a few different things! Knowing about his autism has allowed me to relax a little. I do still worry that he will say something inappropriate....that will probably never go away. I am sure he will end up on a "watch list" somewhere....
I was interested to hear the main speaker Terri Todd from the Chico State Autism Clinic talk about an adult she met with aspergers. She asked if he was bothered by his social limitations, basically if he missed having friends. He said no, he was perfectly happy. I believe this because I had just had the same conversation with Ben. He and I were at the park enjoying the unseasonably warm weather and a group of boys his age appeared and began to play near by. I asked what he thought of that...if he ever wished he could go play with a group of boys like that. He looked at them and said, "No. Why would I? I play like that at my school with my friends."
And there you go. 
He is, has been and always will be happy in his own skin. That is more than a lot of us can say. Seriously.

Tuesday, October 25, 2011

To medicate, or live life on the edge....

Ah....the moments of sibling love....a punch here, a shove there, a bite on the shoulder...
Ben will always be a little unsure when the game is over....when the last push or playful shove has occurred. He will always take the joke one step over the line....say silly or inappropriate things....and be, well....Ben.
    While at a follow up appointment today for his neurologist we were asked what we needed from the doctor. He had gone over all the medications that Ben has stopped taking, he noted the weight gain and general happiness of the boy in his office and seemed pleased. I commented that of all the things that seem to pop up in his daily life anxiety seems to come to the front as a major problem....then I tried to site examples and the only ones I could think of were times at the old non patriotic is he still stressed out? Anxious? I don't know, I didn't really have a good example of his behavior when he is stressed and yet I was given a new prescription to help with this vague symptom.
After all we have been through with medication and this boy I would have expected a little fight from the doctor, a little warning, that well.....he might be better off to just learn to deal with things without the help of Big Pharma.....nope. Here ya is your Rx.....
I would have liked to hear, "Have you tried anything else? Any other form of stress management?"
Just a new drug to that on closer inspection I wouldn't give to my worst enemy let alone my sweet little boy.....
So back to square one, back to looking for a way to teach him to cope with the things that drive him nuts....deep breathing....taking a walk, zoning out with some angry birds.....all of these are good and have very few side effects....(those birds can be pretty darn addictive....)
With every change, as the dust settles, I see Ben. I see him back to his funny carefree self. I hear with delight all his quirky explanations, I laugh with him at all his crazy this one,
"What do you call a beautiful sock monkey?"
wait for it........
get it?
like sexy but with socks.....
Very funny kid I have.
I don't know if we will ever go back to the medicated world. He does take two medicines right now, one for low thyroid and one to help with his Diabetes Insipidus....(remember he loves to drink water and pee constantly) He thinks those two are enough. Perhaps he is right. I am glad he is older and can have a say in what is happening to him. I listen when he tells me that he just wants to go it drug free.....
Big Pharma has lost one recruit....sadly I am sure they have many many more in the wings...