Saturday, July 31, 2010

Back to School: Transition and Perspective

August has commenced and it is time for the annual return to school  marathon and triathlon. For some of us school is but a few weeks away while others of us have until after Labor Day to send our children back to the wonderful world of academia. But either way we need to begin to prepare our children and ourselves for the transition back into the fold of reading, ‘riting and ‘rithmetic. By the way, this counts if you homeschool as well. It is always about schedule and change.


So let’s talk about transitioning your child from the calm and stressless time of summer to the world of academic performance and social pragmatic functioning. I have to be honest even the idea of transitioning HSB right now sends chills down my spine. He had had such a horrendous year last year that I am really worried about how he will do this fall. He has been very happy just helping out around the house, volunteering at ECAD, the dog service training organization and going to the tutor to work on writing and his college application essay. The one thing HSB did not have this summer was peer group interaction. I know this was not a good thing. I know that he needed to work on his social skills but HSB just flatly refused to want to go and do anything. Truth be told, I couldn’t really find anything that was good for him.

Yes, the problem that I am faced with is that for HSB there are no art classes, computer classes and sports classes that he could join. He is flatly just too old. Most of his peers either had jobs as camp counselors or in reality since those jobs were taken by college students and even out of work teachers, his peers took college courses to prepare for school or to put down on their college applications that they had tried out the college experience. HSB could not do that. HSB still needs the support and while I don’t think that the local college would have objected to me sending someone for HSB, I am not sure that more academics would have been a positive thing for him this summer. He had had enough work and needed time to just do nothing. Another thing that a lot of HSB”s peers do over the summer is go on those trips either biking across Europe or the USA or going down to some underdeveloped nation and helping build homes and schools for 6 weeks.

Could you just see HSB doing that? Apart from the fact that we would have had to send someone with him for support (financially terribly prohibitive) the entire episode would have been a transitional nightmare. Heck the boy is still mad at me for going gluten free even though he says he likes the Quinoa based pasta that I found to eat. Can you imagine if I took him out of his comfort zone, his computer, his video games and his routine and told him now go and have a good time? Yeah that would have gone really well.

So here we are stuck in adolescent aspie world, with not much for him to do. I think this is when you really see the difference at times with his neurotypical peers. When the school district had had the summer school program it wasn’t really a glaring issue. Collegeman and HSB had taken advantage of it every summer and it went well (except for the year we had to threaten to sue the art teacher who tried to use HSB as a weapon in union negotiations with the school district. That was a fun summer-oh boy oh boy). Yes, I tried to sign HSB up for driving lessons through the school but ended up withdrawing him because the teacher was nasty, mean, and quite frankly a bully towards HSB in front of over 40 of his peers. He had not wanted to learn to drive anyway and still has not taken his learner’s permit test so driving really isn’t something he is dying to do. I think his interest in driving lessons was the very pretty voluptuous girl who sat across from him during the first class who didn’t bother to wear a bra. But being that this was an unnecessary class there was no reason to subject HSB to that moron of an old asshole.

So as we get closer to the beginning of the school year, we are starting to plan what to do over the next few weeks. Hubby has blocked off the week before collegeman goes back to school so we can all have another staycation like last year. I think camps are ending now here in the Northeast and everyone has basically cleared out of town. Again we are the few that are left. Everyone here goes to Martha’s Vineyard or the Jersey Shore. Some even go up to Lake George to the resorts up north and many go to their home in the Hamptons. It’s a tough life for some, but they just have to live it. We stay put. It is something we have done for years and truthfully we really like it.

We are in our old familiar haunts and are planning a few side trips for the days. We are going to try to go to a water park again. Last year we ended up going just when everyone else on the East coast decided to go and it didn’t work out so well, except for the fact that the boys rolled with the punches and took everything in stride. I guess that in and of itself was worth the aggravation. Then there were the trips into the museums which we will not do again (in fact I am not sure the boys will ever go to a museum ever again, including the planetarium. It is definitely not their thing.), and the skeet shooting trip that collegeman and hubby took. We just heard about a State park that allows for skeet, trap and pistol, it’s nearby and we are going to look into that.

So we are planning a staycation and will use that as a countdown until the beginning of the school year. It seems that collegeman will not have as many issues this fall as HSB, but you never know so we are going to take each day as it comes. There is a new Director of Disabilities at collegeman’s school and we will see if she will give us a hard time about how we support collegeman. I can’t even get a hold of her until the middle of August. But I am going to plan for his fall with the support we know he needs and then if she decides she knows better than everyone else, denying him the accommodations he has always had, we will have to call in the big legal guns. We will also have to see if she is the type to decide that parents are obsolete in raising their children once the child is of legal age. We may have to set her straight with that too. You know my old motto, plan for the worse and hope for the best. Get your ducks in a row and have your lawyer on speed dial.

Another event that is important for transition is to make sure that there are supplies in the house and the requisite books have been bought. Collegeman will go on Amazon once again and order his books at least a week before school starts, so he will have an idea of what will be expected this fall from an academic point of view. HSB and collegeman will pick out an agenda and notebooks that they want. Organize their class draws and folders and clean out their backpacks. Truthfully collegeman still has one more week left of his summer course so we are not even thinking of doing any proactive fall transition activities yet, but we will do them when the time comes.

We will hopefully have all the meds worked out for HSB, within the month so that would be a good thing. The psychiatrist said that collegeman’s meds were ok for now unless something changed, so that at least was a bit of a relief. HSB we are working on solving the focusing and sadness issue. (Just as an aside, VERY IMPORTANT- too much adderall, I don’t know if this is the same for every stimulant, can cause depression. The doctor said that that was HSB’s problem not the SSRI. We have cut back on the adderall and are adding in a nonstimulant focusing med, so we will see if it works. But DON’T do this on your own, talk to your doctor and have them monitor what happens with your child.)

One more thing that I do do for HSB is contact his guidance counselor a week before school starts to get an idea of what his first day schedule will look like. We get the room numbers and go on a treasure hunt for the rooms at the high school. Ok you say by now he should know his way around, but it is helpful that he get his bearings and know where he is supposed to go and maybe even run into a teacher or two. Every year is a new year no matter how many years your child has been at the school. Either their classroom is in an unfamiliar area of the school, or their locker is different and the combination changes. Their teacher is always different so you may want to see if you can have your child meet the new teacher, and even find out if they know a child or two in the class to make the transition more comfortable.

If your child is entering middle or highschool it is important that you take them on tours and go on their own classroom treasure hunt. You should meet with the special ed teacher and figure out the best and most productive way for your child to keep their belongings together. Lockers are very important and there are wonderful organizers for lockers that I found helped a great deal. A plan should be in place at the school that would make your child’s transition easier. It should have been discussed before the end of last year and if it wasn’t don’t wait for something to happen, get to the school as soon as the teachers are back and talk to them about what you all can do together to make the transition easier. I have found that most teachers love it when the parents are involved and love the idea that you want to work with them on any issues. Yes I have come across the idiot teacher who wanted the parents out of the way too, and in middle school to boot, but that really was a rare event.

Something that I have found that truly helped my children when they were younger was time spent on the playground at school. Recess can be overwhelming for any child, but for a child on the autism spectrum the unwritten rules and haphazard play is very daunting for them. Go to the playground and let your child get used to what they can do on the playground. Talk to them about the different activities that they can engage in and the different games they can play. Talk to the school about assigning a “lunch and play buddy” for your child so they have someone who will help them, especially if there is no adult assigned to your child as a para during recess. I know this is the time that most of our children need an overwhelming amount of support and the schools don’t assign anyone because there is usually a playground monitor who they say is sufficient. I have news for the schools, the social skills learned on the playground in school has more impact on a person’s ability to function well in their adult world than any amount of math facts and Harry Potter novels read.

Also if your child is just starting school make sure they go on that “yellow school bus” ride that is offered to the kindergarteners. I sent HSB and luckily the PTA mom in charge knew him from swimming lessons, she was his teacher, so it went well. But it can be an overwhelming and scary thing to get on that huge bus with a lot of older children. Heck I remember going on a field trip with HSB when he was in first grade and we went on the yellow school bus. I can’t tell you how my stomach was in knots the entire time. I hated the damn school bus and couldn’t wait for the day I wouldn’t have to ride in one anymore. HSB couldn’t handle the social aspect of neither the bus nor the noise. He had been bullied on the bus to the point that they put a monitor on the bus, (It actually happened only once, I called and the school district complied. I think the bullies were well known already to the district, I am sure it wasn’t just about HSB; maybe what happened with HSB was the straw that broke the proverbial camel’s back. )But thank God for video cameras which showed who the culprits were, however, eventually I came to the conclusion that I had to take him back and forth to school. So I play mommy-taxi everyday, which is fine. Its’ why I do what I do, it’s why we all do what we do, to be there for our children for any and everything they need.

So as we transition into the school year remember, our children need to treasure hunt for their new rooms, be involved in getting their supplies, practice the school bus ride (or mommy-taxi ride), and go on the playground to work through some ideas on what to do during this free time. You need to meet with the teachers, go over the IEP and Behavioral Intervention Plan, make sure they understand that you are there and expect to be part of the process. Explain your child to the teacher and the para to make sure they truly understand who your child is and what they need and what they can do and how bright our children happen to be. Make sure that you show them your child’s strengths, not just their weaknesses.

Now and this is very very important: enjoy those last few weeks of summer vacation as a family. Go on a staycation. Get to a water park, a museum and go have fun. After all, summer is about fun, family, ice cream, beaches, pools and barbecues. But most of all, the summer is the time that great memories are formed and it is these memories that guide us and help shape our children into who they will eventually become.

An Aspie Speaks




h/t Sharon daVanport of the Autism Women's Network

Monday, July 26, 2010

20 Years and Counting: The Americans with Disabilities Act

The history of mankind is a review of how humanity has managed to develop and create a method of interactive association. In other words, how working together benefits us all. We actually joined together in order to survive in the cruel and dangerous world of pre-history man. We needed support to protect ourselves from predators-mostly other humans. In coming together we found that doing things in concert created a better way of life for all. We as hunter-gatherers delineated chores in a way that benefited everyone. This concept evolved into our modern society.


Historically, society did fill its needs generationally so jobs never went unmet and society kept functioning on a healthy and sustainable and productive level. What was needed was made. As the world became a smaller and smaller place our society became more and more interdependent. We rely on each other and over each other more than ever before. But an issue arose that society had never had never before had to address. What does society do with persons who do not fit society’s mold of what is needed from an individual and what can be given to that individual?

The Spartans in the dawn of civilization murdered their disabled and every empire along the way either marginalized the disabled or continued Spartan eugenics, as in the case of Nazi Germany. The truth is that society had no use for persons who were not able bodied. Those that took more that they gave were seen as an unnecessary burdens on everyone else. Through thousands of years of societal evolution, through religious upheavals, revolutionary thought, enlightenment periods, religious reformations, political discord and scientific breakthroughs, society had managed to retain one of its oldest superstitions: the disabled were to be feared, misunderstood and shut away from society as a whole. Even in mid-20th century America, ignorance and evil abounded. We all remember the horrors that were Willowbrook . Modern society could no longer claim that the attic, shackles and disregard for the visibly or invisibly disabled was a thing of medieval history. Warehoused, ignored and kept away from the rest of society, the treatment of the disabled was modern society’s dirty little secret.

However, 20 years ago this all changed. The Congress of the United States passed the American with Disabilities Act. This law enabled those persons with disabilities the right to be fully fledged members of society and that society as a whole was required to accommodate the disabled in their midst and welcome them into the world at large. I remember when the ADA became law. I remember the hullaballoo. I remember the hand wringing and the dire predictions of the death of American business. I remember the world decrying the interference of government into the mainstream lives of the everyday person. I remember how municipalities decried the fact that they would have to create wheelchair ramps and disability friendly public restrooms.

You know money is a very important element in life. Without it, there is very little that can be accomplished. It is just a sad fact of life. However, sometimes money is not the end result and the end reason. Sometimes society needs to think beyond the ledger page and recognize that in life there are rights and wrongs. It is what separates us out from the Spartan and yes, from the Nazi too. Why was it that due to some unforeseen money issues that it was thought that it was just fine that a segment of society remain disenfranchised? Why was it thought ok that the disabled should not be able to fully access everything that society had to offer? It is as simple sometimes as a wheelchair ramp to access a sidewalk or a ramp to go to the bathroom. Think how it would curtail your world if you knew that there was no place for you to go if you needed a bathroom? What would that inflict upon you and take from you? Why would some still think that the disabled were not members of society and entitled to be all that they could be just like able bodied and neurotypical persons? I remember very vividly the arguments in the papers and among the pundits, and I think those that stood against this bill should rightly feel shame.

I know that it amazes us today that this was even an issue. In our world the disabled are in every walk of life, it is hard to fathom that people were once so against inclusion. But it was not that long ago that the parents of the children in collegeman’s 2nd grade class threatened to sue the school if he remained in the classroom. Fifteen years ago he was the first child brought back in district from an autism program and placed in a mainstream classroom with an aide. Many parents in the classroom went ballistic, from threats of lawsuits to calling my son a “retard” we heard it all. This was the attitude we dealt with from some of the most highly educated and financially successful people in the country. Ignorance is not a purview of the uneducated. Just because you have a string of degrees after your name doesn’t mean that you are a human being or understand what your education was supposed to have taught you.

Yes this attitude towards collegeman continued through graduation. While there were some who were kind to collegeman the majority of the students, taking a cue from their parents, bullied and then alienated him throughout his education. I know that people do not think of themselves as bad people. I know that they do think of themselves as evil, but those parents who promoted the idea that collegeman was “the different” are evil and vile and are deserving of my contempt and the contempt of any truly decent person in society. By the way bullying is a major epidemic in this nation. A wonderful project called the Bullying Project has been started to give voice to the victims. Watch some of the You Tube Channel here.

Ironically HSB had a much different experience in school than his brother. A more intelligent, open minded and truly educated group of parents taught their children kindness and compassion. This is what society should be. Yes, of course, it is not perfect. HSB doesn’t get invited to parties or asked to the movies, but other students acknowledge him, engage him in conversation and listen to his thoughts and opinions. Some even seek out his help on projects they know he is good at. As I have said before. Same town, different year, better parents.

So what does the 20th anniversary of the Americans with Disabilities Act mean to me? I suppose it means hope. I know in many ways people are leery of anyone who says hope and change today. Personally I never bought it as political hype anyway. Anyone who knows me knows I voted for the other guy and gal, but hope is not dependent upon one individual, political party or society as a whole. Hope is dependent upon each of us and what we do on a daily basis.

Since persons with disabilities are such a part of mainstream America today, I am also not totally convinced that when people say “no” today or have issues with persons with visible or invisible disabilities it is totally out of cruelty. For some it is. For some they are mental and emotional throw backs to another age full of ignorance, hate and stupidity. But for others its truly just a lack of understanding and education.

I was in the supermarket recently and I began to play with a baby in a carriage behind me on the check-out line. A beautiful tow headed little girl about six months of age. Her grandmother was taking care of her and a prouder granny you really didn’t see. I mentioned to the grandmother that she will make a beautiful neurosurgeon some day. The grandmother looked sad suddenly and informed me that the baby had spinabifida. I told the grandmother that that didn’t mean she couldn’t be a doctor. The expression on the grandmother’s face changed almost immediately. It had never dawned on her that the two things, a disability and intellect were not always connected somehow. The grandmother was not being cruel towards her granddaughter. Her misunderstanding was merely a manifestation of not being educated and yet everything she thought came from a place of profound love for the grandbaby in front of her. It was amazing the calm that came over the grandmother. Realization is a wonderful thing.

So as I think of the ADA today, I do remember and recognize how over the last two decades society has grown and developed at an enormous rate. Society has taken a giant leap for mankind. But I also see on a daily basis how far society still has to go. But you know what, we can do it. It may take work, quite a lot of work in fact, but our children have the right to be who they want to be. They are dependent on us. After all this is the United States of America in the 21st century, not ancient Sparta (even though Gerard Butler did look rather good as King Leonides, ok I really do like the movie 300), there is no one and nothing that can stand in our way and our children’s way. Besides, there is a little baby with spinabifida who is going to be a beautiful neurosurgeon one day. Society has to be ready for her and for our children as well. Time to get to work there's still alot to be done.


Until next time,

Elise

P.S. Remember that the IEP falls under the Individual with Disabilties Education Act not the ADA. 504 plans derive their legal authority from the ADA. Please make sure that you understand the legal differences and how each law effects your child, their services and accommodations.

Saturday, July 24, 2010

Self-esteem: It's not a Trophy, It's Reality

One major question that we as parents of special needs children face is, how do we instill in our children self-esteem while they face sometimes seemingly insurmountable issues. What tools do we have at our disposal to help our children understand their own worth and value in a society that prizes absolute perfection?


I know that we are not the only parents that face this issue. Parents in general are dealing with a society that airbrush magazine covers so a model fits a particular figure ideal, value straight As and AP courses, perfect college boards and a society that pays someone who can dunk a basketball untold millions of dollars. Nowhere does society seem to value the average person who goes to work every day and makes this country what it is. No where do we see the value in the hard worker who values ethics and family and morals and values above and beyond a flashy lifestyle. It permeates our culture to the extent that getting ahead at any price is important. A recent Wall Street Journal article detailed the lengths that colleges have to go to in order to avoid cheating during exams. It has gone beyond http://turnitin.com for paper submissions to strategically placed video surveillance cameras, confiscation of cell phones during exams, checking laptops for forbidden programs and requiring the old fashioned #2 pencil and Bic pen instead of the new fangled computer-pens of which the students seem to be so enamored .

No where within our world is anyone lauded for just being who they are if it doesn’t amount to more than the basic American Middle class life. There is no value in even just trying and there is no value in being the best you can be if that best does not lead you to the mansion on the hill.

Now don’t get me wrong about something very important. I am not an advocate of the “self-esteem” movement that everyone gets a trophy at the end of a baseball game because they showed up or that whether you want to do something or not is the impetus for your actions. Sometimes in life we need to know that you can try your best and it may not be good enough to win the ball game. Yes, there should be the good try pat on the back, but then the child also needs to learn to persevere and keep trying to better their game and themselves. The child needs to learn to pull themselves up by their bootstraps and soldier on. When life hands you a problem you need to know how to pick yourself up, dust yourself off and start again. Any parent of a special needs child knows that, and we do our children no good by protecting them from learning the art of perseverance. Knowing how to persevere is what will guarantee them the right to be what they want to be in this world.

Ok, so what kind of self-esteem am I talking about when speaking of our children? I am talking about how we as parents help our children come to terms with their invisible disabilities and do not let it overcome and defeat them. We need to find a way for them to understand that they have a lot of worth even if they never end up taking Calculus 2 or Linear Physics. Heck we need to teach our children self-worth even if they are never able to memorize the multiplication tables or understand the little exceptions to writing the English language. (You remember, i before e except after c.)

Anyone who reads this blog knows that my oldest son is in college and the youngest one is now a senior in highschool. I do talk about how their day to day lives are affected by their aspergers and other disabilities. But they did not start out as young men. They started out as young children confused by a world that they did not understand. So when I speak of highschool classes or the college application process, I hope that you can extrapolate some of what I tell you to your immediate issues, because the methodology is truly all the same.

So where to start with self-esteem? Hubby and I had had an ongoing issue about whether to tell collegeman that he had aspergers syndrome. Hubby felt that to tell him would make him feel really bad about himself. I was of the opposite notion, that it would give him an explanation of why things for him are different. Collegeman already knew that he was different. There was a para who helped him throughout his day. He was pulled out for speech and other academic help. He had originally been put in a special school for children with autism before they brought him back in district. He attended town camp but in the special district/camp program created for ESY. So he knew that in many ways he was not like the other children. Luckily the new elementary school psychologist told us that it was a good idea to tell him about the aspergers. It was the best thing we ever did. He was so relieved.

He now understood what the issue was and why he found things so much harder than his peers. Interestingly it also gave him the reason to do better. He knew it wasn’t his fault, he did not do anything wrong and that some things were out of his control. We also emphasized to him that just because you couldn’t see that the other children had issues didn’t mean that they didn’t have problems. Everyone has something that they need to deal with or learn to handle and that just because you could tell that collegeman had problems did not mean he truly was any different than anyone of his classmates. They could just hide it. Also problems don’t always mean the same thing for everyone. That there are children who find the things he is good at hard too. In fact the idea that he could persevere is a gift that a lot of people don’t have and have to work at it. He liked that a lot and it made him feel really good about himself.

We at times forget that small children tend to blame themselves when things don’t work out so well in our lives. When there are problems children, who are egocentric human beings, happen to think many things occur because of them. That if they did better or if they tried harder if they could listen better then everything would be ok. Now a child with a disability has problems in every area that is important in a child’s life, as things get harder for them and everyone around them surpasses them in every way they will find a way to blame themselves. If given a reason for why things are so hard for them, whether academically or on the soccer field, then it goes a long way to helping them keep and grow their self-esteem. They understand it isn’t their fault at all, that sometimes it’s just the way things are and that their genetic make-up or God, if you will, made them this way.

Perhaps that is why collegeman doesn’t believe in God. Not so much the aspie need for logic and the need for tactile proof of reality. But the idea that if there was a God would he/she truly allow for autism or any form of trauma in the world. You can explain to him the idea of the Garden of Eden and man’s fall from grace, but he just doesn’t by it. For religion views God as the parent and parents are supposed to love and forgive their children their foibles not continually punish them for errors, and especially for the errors that are not in their control. He especially lost any interest in God after he studied the Holocaust. He is done with God for now. Is atheism the height of self-esteem or egocentrism as some say, I don’t really know. But I would prefer an atheist child to one that thinks poorly of themselves. Yes, we do have some interesting discussions in our house and some interesting perspectives on life.

The other way to help with their self-esteem is to help them persevere. Yes, they may have certain learning and developmental disabilities that make it extraordinarily hard for them on ay levels. But they need to learn at a young age, that it is ok to have these disabilities. What is not ok is to use it as an excuse to not try. See I do not say to succeed, but to not try. Anyone who has kept up with this year knows that HSB had the most horrific year in algebra 2 and chemistry. He started having real problems in math with geometry. He just couldn’t wrap his brain around the way it works. I had the impression that seeing the application of geometry would make it easier for him, but unbeknownst to me geometry and every ensuing math is extremely abstract. Abstract reasoning is not something HSB does well. (Neither does collegeman for that fact). He cannot extrapolate how something taught one way can be applied in an entirely different situation. He can learn the formula and where to plug in the numbers, but its finding those numbers when the problem is different that causes the pain, angst and the meltdowns.

Now, did he struggle? Yes. Did he have meltdowns? Yes. Did he learn to persevere? Yes. Was it easy, not on your life. But when the end of the year came and he not only passed these two classes, but passed them both with a 74 average, HSB was elated and you know what so were we. High fives and fist bumps all around and a special trip to the video game store ensued once that report card showed up in the mail. HSB’s self-esteem was hard won this year. But it was a win worthwhile. He learned that if he stuck to his guns and worked hard as he could, he can accomplish anything.

Collegeman was always a little different than HSB in this vein. Collegeman was always one that persevered and never shut down. If something was hard for him he worked at it and worked at it. What was hard for collegeman to accept was that when he worked really hard it did not always mean he received an “A.” Sometimes you work really hard and you end up with a “C.” We had to teach him that a hard won “C” was something to be more proud of than an easy “A.” It took him awhile to understand that concept. I am not sure that he does get it, and truthfully in this world it is hard to grasp when you can’t get into law school with a transcript full of “C’s” instead of “A’s.” (Meanwhile, he does get predominately good grades.)What the future holds over the next few years as far as grades and school is anyone’s guess. We are working out different scenarios for collegeman just in case. Nothing is assured, even if you apply for college/law school/graduate school/ any post-secondary educational institution with straight “A’s” and perfect boards, so having a Plan B and a Plan C is really a good idea. Actually it’s a really good idea for everyone not just for persons with disabilities. (But this again comes back to my opening paragraphs where society has different standards than what we may need to create for our children. Just one more thing we have to deal with and one more thing we do need to prepare for.)

HSB is not in the zone where he gets to choose most of his classes yet. In highschool you still need to take the requisite courses whether you can excel at them or not. He still has to take math and science next year. He will have to take his lessons on perseverance through his senior year of highschool. (Notwithstanding he will need the lessons on perseverance for the rest of his life.) Hopefully he will have learned the lessons and will have internalized the lesson in self-esteem. Hopefully if something becomes hard for him he will not shut down but will remember how capable he is and how much strength of character he possesses. Thankfully we will not have to deal with that for another month. So for now it’s just time for him to continue to pull himself together, enjoy his respite and concentrate on his video games.

Throughout the years we have established a regime that helps the boys function at home. This aides and supports the success that they have at school and aides in the devlopment of their self-esteem.

1. Schedule everything they do. Use a white board or a Velcro board and write out a daily schedule. Let them have input and help decide when somethings will get done. Work in breaks and fun time too. This is an essential tool for during the school year when your child brings home homework and has after school activities. One of the things that upsets our children the most is having no idea what is happening and when. You will find when they have control over their environment there will be less meltdowns and more cooperation even when they are doing homework.

2. Acknowledge if your child has a learning disability. Whether it is a language processing or math processing disorder the schools should offer extra support during the day but do not expect the problem to resolve itself when they get home. You may need to hire tutoring services or an on-line support program like Tutor.com if you cannot help them appropriately.

3. You should try to coordinate with the school as to what is happening during the day and what supports they offer your child. Try to do the same supports at home. If your child needs directions explained again and again then do that at home. If they need reading instruction and comprehension support you may need to lend your time to that as well. You need to recognize that the days of children doing homework alone, especially those with learning disabilities, is a thing of the past.

4. Routines are very important. Make sure that routines, not just schedules are followed. When your child knows the time to eat dinner, take a bath and what to expect at bedtime it is helpful in creating calm and again allowing them to order their world.

5. Therapy is a big part of helping your child with their self-esteem. Being able to talk through how they feel with a professional goes a long way in helping them understand who they are. Some schools systems will provide counseling in school with either the school psychologist or social worker. In fact at times because our children lack social skills, which can be a huge self-esteem killer, a lot of districts implement “Circle of Friends” to help our children with any problems associated with the social structure of their day to day existence. It is a positive and please insist upon its inclusion in their IEP or 504 program.

6. Let your children know that no matter what happens in life, that you will always have their backs. Many children take criticism very personal and feel that they are letting their families and especially their parents down when they get criticized. Try to use positive instruction and positive reinforcement of any lessons that need to be learned.

7. Create a reward system. Earning points for simply listening and sitting for a certain amount of time when they do their homework is a great way to start. Use a timer. It can start with as little time as 5 minutes and then ratchet itself up slowly. Use the points, gold stars, etc to earn something the child wants, like a new coloring book, stuffed animal, Pokémon card, manga or even a DVD. Don’t make it so hard that they will never get to the success point.

8. If they let you hug, kiss, high-five, fist bump or pat them on the back. I have found that that stray kiss or hug goes a long way in making the child feel loved, understood and appreciated.



Self-esteem is a very tricky part of raising your child. This society puts a lot of emphasis on self-esteem but makes it nearly impossible for a child to grow up with a healthy sense of self. It is a dance on a precipice that we constantly have to do for our children. We cannot shield them from the culture as a whole, but we can add or subtract from the culture that which makes our children feel that they are worth less than they truly are. In watching the movie about Temple Grandin there was a way that Dr. Grandin’s mother used to describe her child and I think it applies to all of our children. Our children are “different not less.” We just need to make sure that our children understand that and that they always will understand their own value.

Tuesday, July 20, 2010

Charlatans, Autism and the Reality of What Helps

There is nothing that gets me more upset than the charlatans that try to take advantage of autism families. Everyone of us knows the absolute terror you feel when your child is diagnosed with an autism spectrum disorder. For me it, of course, was mixed with relief that we finally understood what was going on with collegeman.

It took years because noone understood hyperlexia, and how collegeman as smart as he was, had a truly disabling underlying disability. The child himself used his hyperlexia to be able to make sense of the world that he couldn’t’ auditorily process and even tried to be outgoing and loved being around children his own age. Since he did not fit into the known definition of autism at the time, remember this is almost 20 years ago, no one really knew what to make of him, and those that did, the nursery schools that kept ejecting him, didn’t really care about him but about themselves. So yes it was a frightening relief to say the least. To this day I remember what the Committee on Special Education Director said to me, that collegeman was neither fish nor fowl. He never fit into an easy category, neither unchallenged nor neurotypical, but an anomaly in so many ways. A fighter in spirit and soul; it is his greatest strength and a terrific gift.

By the time HSB was growing up and starting to have the same autistic tendencies as his older brother we, being aware, had him in early intervention as soon as we could get the county to check him out. The sad thing is that the new pediatricians, we had moved to get collegeman his services, never told us about Early Intervention services in our county, which are terrific. I think they just didn’t know. But they have learned a lot about autism from me and the boys.

I actually learned about EI from some other parents in a Burger King one day. I heard them talking about their speech services and asked them about it. So HSB got EI since the age of 2 ½, while collegeman did wait until he was 5 ½. I know I need to stop beating myself up, but I suppose it’s what we always do as parents, it’s the “what if” syndrome. I think it’s normal and human and not really bad as long as it doesn’t bog you down in the present.

We all understand what it takes to get to the point where your children are recognizably diagnosed. We all understand that fear and worry and the questions of what do I do now? Well 15 years ago when collegeman was finally diagnosed everything was up in the air. Autism wasn’t big news yet. People were just beginning to notice a trend and in fact called it Silicon Valley syndrome because they said 1 in 4 children in that part of California had aspergers syndrome, but it really wasn’t even called that yet. Autism wasn’t truly thought of beyond the Rain Man stereotype and sadly in so many corners of the country/globe most people see autism only through that lens.

But in retrospect in many ways I think I had it easier than a lot of parents have it today. There were the basic meds, and therapies and educational supports that your child received. There were no arguments about treatments, organic, biomedical, psychiatric, and neurological. There was no argument and division in the autism community, because quite frankly there wasn’t an autism community just yet. There also was no internet, social media, support groups and chat rooms, which would have been nice. In many ways it was simpler but terribly less hopeful. I do know though, that even with all the controversies and divisions, I like what there is to offer in the way of hope and a future for our children so much better today than in yesteryear despite how much further we still have to go.

Yet, as I stated in the opening paragraph of this post, what I don’t like about today is the charlatan who does pray on the terrified family. I don’t like that there is a niche of people who promise miracles and in their desperation there are parents who will try anything to get help. I don’t fault the parents at all. I fault the leeches and you know who you are. There is no scientific and medical basis for any of these treatments and some of them can kill your child. (Don’t direct me to Age of Autism either. If you want to follow them you are welcome, but I think they are not only terribly inaccurate in their portrayal of autism therapies, I think they are downright vile towards those that disagree with them. Their attacks are personal, insulting and defamatory in many cases. If you cannot argue your case without ad hominem attacks you have no case to make in my book. If you would like a better review of their articles you can go to Countering Age of Autism listed in the sidebar.)

In the meantime, a wonderful new website just started called The Thinking Person’s Guide to Autism. It is a compilation of essays written by parents, doctors, autistics and therapists about who they are, what they do and how they approach the world. It is a terrific compilation of life in the autism community. Definitely bookmark this site and buy the book when it comes out. The profits go to real scientific autism research. None of the authors or editors keeps any money earned.

The latest article that I found on TPGA actually outlines the problems with these alternative therapies that many parents feel they need to try. It succinctly discusses the different protocols and explains the problems. It is something I hope that each and every one of you who is reading this post links to and takes the time to review.

In the meantime I would like to tell you what I did over the years for both of the boys, in addition to the supports supplied by the school. As I have always said, what the district does for our children is just a drop in the bucket of what they need to be able to be all that they can be.

1. Psychiatric and psychology visits: meds, play therapy, social skills, cognitive behavioral therapy, life skills coaching, classroom coaching (paras)for collegeman because he needed extra support with the transition into college

2. Speech therapy

3. Occupational Therapy: when that was done a lot of private sports lessons to keep up what was learned in OT (group lessons because of their disability didn’t go well)

4. Horseback riding lessons in lieu of horsetherapy

5. Etiquette lessons

6. Tutors because the underlying learning disabilities needed support after school

7. Creating an exercise regime

8. Making sure to eat mostly healthy, recognizable foods, i.e. things your great grandparents would recognize as food

9. Trying to eliminate as much as possible chemicals from the food stuffs; i.e. msg, red dye, preservatives, etc.

10. Drinking soy milk but we still kept cheese in the diet. We did not go dairy-free completely.

11. Adding in vitamins: multi-vitamins, B12, Omega 3 and probiotics (we use danactive)

No none of the things I listed are cheap by any means. But considering what some of these charlatans cost what I spent is nothing, or atleast these are therapies that accomplish something.
I have to say that the new regime we are going to try is gluten free. I had been contemplating it for awhile and I do know that the scientific studies done on gluten free shows that there is no great effect for children. However, none other than Dr. Temple Grandin, in answer to my question about anxiety, collegeman and independence during @thecoffeeklatch’s blogtalk radio show (here- the show was archived), told me that a gluten free diet really helped her. And she recommended it. So I figure it is harmless to try and may do some good.

I know that everyone is different and that everyone reacts differently to every environmental factor. But to me it is a shot worth taking. I think that since medication has not fully alleviated collegeman’s anxiety induced seizures maybe this is the jump start he needs. He is on board. At least maybe until he doesn’t get that gooey piece of chocolate cake he likes, but I did find a flourless chocolate cake that was just yummy and he liked it.

HSB, on the other hand, had a meltdown and is now angry at me for the change. But change comes hard for him for anything, never mind a change of diet. But we shall see. He has threatened not to eat any bread or pasta and I said fine. He then because I didn’t freak out threatened to not eat at all and I said fine too. I think that threw him. I just got an apology for his behavior. (See there are positives in everything.)If the most that comes out of this is that HSB recognizes that he needs to behave and react more appropriately to change than that in and of itself is going to be worth the effort. Incidentally, he liked the gluten free hamburger roll and just relented that he would have his pbj on that. (Yes, we use natural peanut butter.)

Meanwhile, I am giving the gluten free diet until school starts after Labor Day to see if there are any positive side effects or if it’s been a waste of time. I will let you know. But I am determined that this isn’t going to be a “what if” moment, it’s much better when it’s an “I tried it and it didn’t work moment.”

UPDATE: Please note that we switched from soy milk years ago because of the high levels of estrogen and the recent findings that it does inhibit male sexual development. I recommend organic dairy products of any kind, especially milk, and as an alternative, almond milk if your child needs a casein free diet. Personally I being lactose intolerant enjoy almond milk immensely, especially the original unsweetened variety.

Until next time,

Elise

Sunday, July 18, 2010

What Do We Pray For?

I wrote this post at Liberty's Spirit, but think that it encompasses a relevant thread about who we are, what we believe and what we wish for our children. It is a political and religious post, but if you can get past that, I think I ask some thought provoking questions. At least in my humble opinion. Comments are wanted and welcome either here or at Liberty's Spirit.


This coming Tuesday is the Jewish holiday of Tisha B’Av (the 9th day of the Jewish month of Av). It is a fast day in commemoration of the destruction of the Temple of Solomon and the Second Temple by the Roman general, later emperor, Titus. Legend tells us that the Temples were destroyed on the same day hundreds of years apart. It is a day of reflection, thought and understanding. It is a day to remember that all humankind needs redemption and can learn from the tragedies of history. As a child growing up we always fasted and prayed that the Temple in Jerusalem would be rebuilt. As a child we prayed and remembered those who did not have the privilege to see a rebuilt State of Israel. As a child we prayed for those encumbered by the chains of the Soviet Union and tyrannical states. The question I have is what do I pray for now?


Of course religious person would say, pray for the rebuilding of the Holy Temple. But I am truly uneasy with that now. I think as a child when Jerusalem was divided and Jews were forbidden to go to the Western Wall (Kotel) then it was a reality that we are entitled to our holy sites. But a divided Jerusalem is no longer the case and a strong Israeli government controls the holy sites with access to all and in some cases defers to the non-Jewish residents of the country. They allowed the Moslem Waqf to retain control of the Temple Mount and dictate the terms of how and when Jews can and cannot excavate their heritage from the site. Read the rest here.

Saturday, July 17, 2010

Eureka, Autism and was That Really Necessary?

I am not sure what the point of one of the latest plot twists on Eureka happened to be, but I found it rather unsettling and quite disturbing. For those of you who don’t know what Eureka is, it is a sci-fi television show on the Syfy Channel. It is about a unique town of brilliant scientists that cause all kinds of mayhem and consternation while they invent new ways of using technology to enhance our daily existence, with the odd military contract thrown in (of course). Oh yeah there is the regulation soap opera overtones and the teenage angst overtones to go along with any modern television program.


What they also happened to have is the requisite autism story line as well. The brilliant head of the corporation along with her brilliant ex-husband who is (was) a scientist in Eureka had an older son who was autistic. Now I say was because the latest plot twist is that six of the character were transported back to 1947 when the town was first formed (here), and due to their interruption of the space-time-continuum, they changed the present in many ways. One of the ways that everything was changed is that the child is no longer autistic. (here) When it was discussed on the show how that could have happened, there was the pat answer that autism is the outcome of a combination of genes and environment and an untold number of coincidences that come together to create the autism. (I guess we should be lucky that they didn’t say that they had safer vaccines in the new time line).

What I do know is that the show annoyed me to no end. I really hate it when Hollywood decides to pontificate about scientific research and gives simple ignorant answers to questions no one knows the answer to. (No, this is not a diatribe about Jenny McCarthy. Personally I do think that she has done a great deal of harm with her anti-vaccine crusade, but that is not what this post is all about.) What annoyed me is that some writer in his little office somewhere on a Hollywood sound lot has decided to take an issue that is so much a part our lives and give it short shrift as if autism is just another whoopsidaisy.

What would have been more interesting and more informative for those that watch the show is to allow the audience to see just what the family and the autistic child go through in certain circumstances. It would have been great if they showed in that giant brain of Eureka scientists working to find the cause of autism and yes, a cure. It would have been better, if like in Parenthood, the writers showed just how different and outcast so many of our children happen to be and that even in the world of geniuses there are real problems.

But yes, this is a feel good show, not one full of lessons and philosophy, except that a lot of the science that is portrayed on the show is actually real. There is a link on the show website that allows you to learn about the new science that is discussed every week. It really is fascinating what is out there in the scientific domain. You never hear about that. You never hear about the strides and what glorious inventions and future does bode for humankind. But yes, that is part of the show. So why they could not have made the future where they were experimenting with new therapies or ideas to help this child is beyond me.

I did like one scene that involved the mother of the autistic child. The time machine/portal was still in operation and the others were thinking of going back in time and trying to relink to “their” time. The sheriff of the town caught the mother on her way to destroy the machine. She didn’t want to lose her son again she said. You know what, I would have done the same thing if I had been found in that same exact situation. No I would not go back and I would fight damn hard to make sure that my baby didn’t go back either. The reality is that some screwy electrical storm ended up destroying the machine and they stayed in the alternative time line, leaving the autistic child an NT. In some ways, a dream I know we all share.

I suppose what made me upset more than anything is how autism is now the prop du jour of the entertainment world. That if they throw in an autistic kid or adult somehow it gives a hook into reality. In a more cynical world, I think the financial managers of the entertainment world may think that the autism hook will cause the autism community, which is growing exponentially every day, a reason to watch their show, improve their ratings and improve their take home pay. But then again that is just my thought about this explosion of autism characters in television and film.

I do like the show Eureka and I will continue to watch the show. It is fun. It is enjoyable. It is thought provoking in a scientific sense. It was an escape for me from the real world I inhabit. I guess that’s why I like Say Yes to the Dress, about expensive wedding gown shopping, or House Hunters International, about living abroad or buying a vacation home in another country, things I will never really do and things I couldn’t do at the time I was married. Heck I got my wedding gown at the Filene’s Basement Bride Run;





 it cost $40 and was worth $500 at the time 27 years ago. I wonder what that would be in current pricing…hmm. Someone had put my dress back on the rack because it had a little stain, which came out in the drycleaning. I had actually missed the stampede part of the run, got to the store 15 minutes after it had opened and lo and behold there was only my dress left on the rack. Somethings I guess are meant to be afterall.

I suppose it just comes down to the fact that I just wish the writers on Eureka had actually given some real thought to autism families, that live in the real world, before they mused about time lines, environments and genes, as if none of this means anything to anyone. It would have made a good episode a great episode and opened up an entire set of new possibilities. Of course they can still do that. Maybe the autism-scientist-mom will start a project to find out why her son is no longer autistic in the new time-line. It wouldn't have to be a big story , just a little sideline of thought, but it would go along way in acknowledging that some answers are not found in science fiction.

Until next time,

Elise

Thursday, July 15, 2010

EMERGENCY CALL NOW: NO RESTRAINT AND SECLUSION IN THE IEP

From Wrightslaw:


ALERT! No Restraint/Seclusion in IEP

Protect IDEA Rights!

Please Do Not Allow Restraint/Seclusion to be added to the IEP in S.2860


Call Your Senator Today!

This week, as the Senate drafts its final version of the Preventing Harmful Restraint and Seclusion in Schools Act, S. 2860, a very dangerous provision is creeping in.

The Senate would let school staff put restraint and seclusion in a child’s IEP or 504 plan. Call your Senators now and ask them to reject this proposal.

The Proposed Amendment to S. 2860 Will Take Away IDEA Rights. Unlike IDEA, 504, and ADA, the Restraint/Seclusion bill has been written to prevent parents from seeking to enforce it in with lawsuits.

The new law (S. 2860) would take precedence over the old law (IDEA).

To learn more details about the proposed provision, read No Restraint & Seclusion in IEPs, Protect IDEA Rights! by Jessica Butler, Esq.


________________________________________

Please Call Your Senator Now!

Senators: Please Do Not Allow Restraint/Seclusion to be Added to the IEP in S.2860.

• S. 2860 should require that all students receive IEPs which treat them with dignity, with positive interventions, and appropriate services.

• Putting R/S in an IEP Is NOT necessary to plan for crises.

• Schools have the upper-hand in IEP negotiations; parents rarely are equals.

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How to Call Your Senator

1. Always use the bill number, S. 2860, Preventing Harmful Restraint and Seclusion in Schools Act. Please call; Senators pay more attention to calls. Email may get lost. Use Email only if you must.

2. Dial 202-224-3121 (TTY 202-225-1904) or go to www.senate.gov, click on Senators for contact information (including local numbers). You will have 2 Senators. When you call, ask for their Education or Disability Aide. Leave a detailed voicemail message if they are not available. Be sure to identify the bill by name, Preventing Harmful Restraint and Seclusion in Schools Act and use the number, S. 2860.

3. Please call your Senators - but especially if you live in these states on the Senate HELP Committee: AK, AZ, CO, CT, GA, IA, KS , MD, MN, NC, NH, NM, OH, OK, OR, PA, RI, TN, UT, VT, WA, WY. If you are in these states, check the HELP Committee website so you call the Senator on the Committee, http://help.senate.gov/. If you have friends or family in the Committee states, please get them to call. And even if you are not in a Committee state, please call. Senators from all over the country are impacting this bill.

4. Call Senator Tom Harkin and ask for his disability counsel (phone 202-224-3254, fax 202-224-9369). Senator Harkin chairs the Senate Health, Education, Labor and Pensions Committee, http://help.senate.gov/ and has much power over this bill. He needs to hear from parents and advocates from around the country; he certainly is hearing from the other side.

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Copyright © 2009, 2010 Peter W. D. Wright and Pamela Darr Wright. All rights reserved. Please do NOT reprint or host on your web site without explicit permission.

Tuesday, July 13, 2010

A Cyberbullying Asshat

You know how you teach your children about cyberbullies and that you try to give them tools to fight against the creeps. Well I have to tell you I was a victim of bullying this morning on a website. I did tweet about the article and even about the ad hominem attacks but you know I think that if I was a teenager and had to go to school with persons who had been assaulting me on line, I know for a fact it would be a painful experience and interfere with my being able to access my education. That is in a nutshell why there are rules against bullying and why there are laws against interfering with someone’s education.


In an on-line magazine, there was an article about a court case in California where the bully posted a You Tube video about another child. The school suspended the bully, as they should have, but the father instead of punishing his daughter sued the school for infringement of her free speech rights. The truly sad thing is that the court sided with the parent. The school district was forced to repay the parent’s legal fees of over $100,000, saying the school overstepped its bounds because the You Tube video did not interfere with the victim’s ability to attend school. Not quite sure what century that judge lives in that he isn’t capable of understanding the effects of social media on society, nor the rights of students in school. This is probably why California is in the trouble that it is. There is obviously a screwed up sense of right and wrong and application of the law. People actually started to attack the parent, rightly so, and he answered back with snarky nastiness.

His comments were so nasty that at first I thought it was a hoax, because no one could be that stupid in print especially a lawyer. You know the rule that whatever you put into cyberspace stays in cyberspace was not being watched by this man. So I really thought that there was no way that this person was who he claimed to be. Apparently he is a well known lawyer in the record industry, personally I had never heard of him, but did a little checking on line myself. To my surprise so many people had already encountered him and had written blogs about him being a real jackass that I realized that he was the real deal. The problem with me was when I challenged him and his behavior that the nastiness really blew up. I also mentioned that I hoped the child who had been cyberbullied sued for libel and slander. From questioning whether I had gone to law school, to deciding to fix spelling mistakes I may have made to being condescending and downright revolting, he epitomized everything that is wrong with cyberspace without actually using profanity and porn. In decrying the fact that I thought children who sent certain text messages should be arrested, I suppose he never heard that it is illegal to make a bomb threat and threaten someone with physical violence when it comes to school as well, he told me I was sickening. But then again, he didn't come off as someone who truly understands any form of boundary never mind understanding the legal  balancing concept between government and civil rights. He also unfortunately, epitomized everything that is negative about lawyers as well. I can see why his daughter thought it was just fine to be a little bitch. She was looking for daddy’s approval after all and actually got it didn’t she?

What it truly showed me is that someone who bullies your child is taught to bully by their parent. I know they say that bullies are themselves bullied. Well maybe that is the situation with this girl and her father, I do not know, or maybe she is just copying what she sees him do on a daily basis to other people. It is truly sad that somewhere in the mentality of this individual there is a sense of entitlement to be cruel and mean to others and that somehow when attacked they decide that nothing is their fault. They think that there is some implicit right in their lives to do as they please. That there is nothing out there that can touch them.

On another note, to highlight that not everyone in the world is made up of morons, Louisiana just passed a law against cyberbullying. Luckily it has become a cause célèbre in our society due to the terrible suicides it has brought about, albeit way too late for the poor children who have taken their own lives.

This incident did bring back a memory from collegeman's childhood. I remember when collegeman was three-years old and taking a boy’s dance class at a ballet school. It was really cute. The boys wore sweats of course and danced to marching music and did all kinds of exercises. Now right after his class was a six-year old girl class. One day as I sat and watched collegeman with another boy-mom, four little six-year old girls were watching the boys. The comments consisted of how the boys are stupid when they dance, that they weren’t really dancing and that boys were dumb. OK, not necessarily unheard of among girls, not liking boys and thinking they are idiots at one time or the other. But then they went on to discuss how they hate other girls who don’t wear pigtails, and they weren’t going to talk to other girls who didn’t wear pigtails and make sure that others didn’t talk to them too. Remember these were six-year olds. They finally decided that the boys were too stupid to watch and left.

The other boy-mom turned to me and remarked that she had never in her life heard anything like that. I responded, “What do you think you suddenly become a bitch at thirty?” You see bullies learn from very early on how to respond to people. There is no way those six-year olds learned that independently of their mothers. They just were able to extrapolate how their mother’s behaved into their own world. I also saw it as a nursery school aide, while I studied for the bar exam. The girls would ostracize this one girl because she never wore dresses. Even though we actually asked constantly that the girls come in jeans or sweats so they could play outside during recess, the mothers had to dress these children up like little dolls in $300 dresses. (Eastside of Manhattan mentality). Incidentally, all these mothers were friends and went out constantly with each other, even the one who dressed her child appropriately for school. Why she remained part of that crew I never understood, she knew how the other little girls treated her daughter too. I guess self-esteem is an interesting issue.

The problem is not limited obviously to the very rich. Phoebe Price was bullied to death in a middle class neighborhood in Boston. Children are bullied all over the country and the parents do nothing about it. You could chalk up what happened to me this morning as the rantings and ravings of a very disturbed man. But there is crazy and there is being an asshat. The problem is that not only is this man an awful parent having raised a bully but he is out there in the world, bullying others whom he comes across on a daily basis.

Life does have a way of getting even with bullies they say. All I can hope is that smackdowns will be forthcoming for those that think they can go around causing pain and hurt. In fact I hope that these parents are the biggest losers and that life really does come along and shoves a boot up their ass.

Oh and by the way, I will not link to the article; it really isn’t worth your time. However, the online magazine that allowed the cyberbullying is  Tablet Magazine. Just so you know never to bother with that site. They also had an article by the same author, who wrote about this California case, about how useless us mommy-bloggers happen to be. So why did I read this magazine? It had a different take and a different perspective about Judaism, which was at times thought provoking. Unfortunately it also has that Upper West-Side New York City elitism which obviously gets in the way of any true sense of real life.

Until next time,

Elise

Sunday, July 11, 2010

Hot Time Summer in the City

The summer is half over and there are still six weeks of summer vacation. Collegeman made a very half-hearted attempt to find a job. Not that I think one would have been forthcoming around here. There are so many adults out of work that normal jobs taken by teens every summer, if they still exist, then they have been usurped by adults with skill sets and experience and quite frankly bills to pay and a family to feed. I can’t resent that no one wanted to even talk to collegeman. Truthfully, it wasn’t even about the autism. He just sent in resumes. It really was about what is happening in the economy. Why hire an unproven kid, when you could hire someone you know will actually show up because they have so many obligations to meet? It is just what it is. So we decided, much to his chagrin, I might add, that collegeman had to take a class during the second summer session at college.


I have to tell you he was really having a good time doing the teenage thing this summer. I realized that there had never been any time in his life, except for the few weeks between semesters in the winter that collegeman had no school or work obligations. Last summer he did have that job at the college library and it went fairly well. But it was an obligation. Now he did handle it well and his boss thought he did a good job. But there was no down time and no time to hang out. So like I said, this past few weeks, actually two months, have been quite the happy time for collegeman. Sleeping late, hanging out, eating (he did put on weight and he is now on a little diet), earning money through chores and basically doing nothing of any consequence. He was also really really happy.

I think at this juncture, we are going to have to work out a methodology that he can be happy, content and pleased about his world while he pursues his future too. Hopefully all the people who are in place can help collegeman figure out how he can do that. Hubby thinks one day he may just have a catharsis. I am of the mind that collegeman needs a little push in that direction. He may need a little help in reaching his nirvana, so to speak. I think we are going to have to start with the basic idea that you can do more than one thing at a time.

So far we are working on him allowing himself to go to the movies when he is studying. Also the therapist is talking to him about friends. To the extent that he doesn’t seem to understand the value of friends so much as he understand the need to make connections for future success, we are going to go with that. But this morning I did have an interesting quick talk with him about friends. He said that we are his parents and not his “friends.” That he was right, a friend is someone more your own age who you can commiserate with, I also did add that it was OK for him to go to school and have a friend. So let’s see, this is our goal for the present. Actually, I know, it seems that it’s been our goal for him for awhile, but at least he is talking about it and open to the possibility. I hope, he finally does realize that it is ok to have a little fun in life with people your own age.

Now as far as HSB is concerned, I regaled everyone with the fiasco that was the driver’s education orientation. It is for the best. HSB has not even studied for the learner’s permit test yet. Hubby found tests on line, that could help him study, but I truly think that HSB isn’t all that interested anyway. I know he is scared and very reticent about driving. I also know that once he does it and sees that he is capable it will be just fine. But he is conveniently taking his time studying and preparing for the test. Honestly, between you and me, until he has made up his mind that this is really something he should do, I am not so sure it’s a good idea to put him behind the wheel of a car anyway. So I am not losing any sleep over him not being out on the road right now.


I’ll tell you something else too; we are doing a medicine check for him over the summer as well. We were able to get an appointment with a well known adolescent psychiatrist in the area and we are playing with both the focusing meds and the anti-anxiety meds. So far his anxiety meds have been decreased and he is happier. The focusing meds also have been pulled back, but he is a little ditsier. Interestingly the doctor explained to me that with focusing and the autistic brain they have found that a stimulant alone doesn’t usually do it. There should be another drug, probably a non-stimulant added to the mix. He did give me a list of three meds, two of which HSB had been on for other reasons at one time or the other. They so did not work. It’s like I have said, watch their reaction to the meds. There are some rare side effects and your child could be the statistic. It can be dangerous. Any doctor who tells you to keep trying once there is a negative reaction; you need to get rid of (had that happen with the boys too). Luckily this doctor understood that we have only one more drug to try. So we will wait and see what happens once the anti-anxiety meds are taken care of. As he said, you change only one med at a time, so you know to what and why there is a reaction.

Alright but then what do we do with HSB for the summer? So far he is helping with chores. Now that collegeman has started his class,too preoccupied to do chores, there are chores for HSB to do and earn cash for those much prized video games. Not such a terrible thing that he has to earn something that he wants. He can learn that not everything comes to you because you want it and sometimes, (GASP) you can’t get it just because you want it. You have to wait to have the money. Instant gratification is a real curse for this generation. I think we hurt our children because of it, all our children autistic and NT alike.

Then HSB also has to study the driver’s manual and start his college essay. I have found that as long as he has a schedule to follow he is very happy and that we limit the time on the computer and on the video games. He also has to exercise and after his cardio he has to do an exercise DVD involving free wieghts or ab exercises. But I think in reality, as I told the doctor, what has made him the happiest  is that he is scheduled and busy. He needs to know that he has something to do. I have now also started taking him on errands with me when I can and make him come do even the most mundane chore, like grocery shopping. Besides the fact that it is a good life skill, HSB needs to leave the house and get out into the world. It is so easy for teens with aspergers to sequester themselves in the house and then decide that they don’t need to leave anymore. (By the way, this is very different than being agoraphobic.)

What I had been told and I had started to see it with both boys, is that teens with aspergers will tend to ensconce themselves at home because it is easier. Being a teen is so difficult to begin with, now add the social issues associated with aspergers and the child is just overwhelmed. The psychiatrist was talking to me about how that is exactly what happened with HSB this past year. Having trouble academically, losing his best friend, not having an outlet once bowling stopped and the knowledge about the upcoming transition out of high school into college all added to his feeling so very overwhelmed.

So I think it’s not a bad thing that HSB has an easier summer. I just wish I could find an art class or something fun that he could do and be out and among kids his own age. Unfortunately if you look around, most of the kids his age are not even here. They are still going on excursions, whether a bike trip across the US or one of the charitable trips where you build homes in Nicaragua. Some are camp counselors, but those tend to be college age students and even graduate school students. Heck some counselors are even teachers.

Actually we did work it out that HSB would volunteer one day a week at East Coast Assistance Dogs. He is helping input into a data base about the dogs and even got to learn how to start to train the puppies. He particularly was attached to a little 10 week old golden lab named, Blondie. He learned how to bend down to call her, get her to sit and even the proper way to pet a service dog. He said after awhile he was on cuteness overload. Oh yeah, collegeman is also volunteering there at the same time. Of course collegeman is obsessed with getting the data input done because that is a “real” job, but we make him stop and help with the dogs too. Nice and wonderful people at ECAD. Since I am staying with the boys to help with the social interaction for HSB, they have promised to find something productive for me to do as well.

So the rest of the summer seems to be set, so far anyway. Collegeman is studying and volunteering. HSB is delaying taking the learner’s permit test, helping with chores and volunteering. Even I am getting into the act with the dogs. But I think what is the most important aspect of how the rest of the summer is going to go has a lot to do with the fact that there needs to be a schedule. In fact the more lazy and hot the day, the more scheduled everything has to be. Remember, the more tired you, the parent become, the more scheduled everything has to be.

While summer is supposed to be the relaxing time for everyone. It is when the world slows down because of the heat and everyone goes on vacation or has a staycation, that it is the hardest time  for us, the parents of special needs kids. If your child is in ESY then some of the time is scheduled but that also only lasts for a few weeks. Here it was 6 weeks, but that usually left the month of August to figure out what to do with your child. Even with special needs children at home, there should be a little of a slowdown. Do take it easier and do make time for when you can put your feet up too. Whether it’s that cup of coffee at 5 in the morning, out on the porch, before the kids wake up or that glass of wine or bottle of beer after 8 pm when they have all gone to sleep (oh yeah, some of us do both...woohoo). Don’t forget that an overstressed parent isn’t good for your children and it certainly isn’t good for you. The dog days of August are approaching, remember those schedules and truly batten down the hatches…

Here’s an oldie but a goodie when it comes to summer music:





Or maybe this is your speed:



On that note don't forget about that wonderful autism support program Surfer's Healing. They may be coming to a town near you. Check it out.

Better yet, this is what used to drive parents crazy:



Until next time,

Trying to stay cool,

Elise

Thursday, July 8, 2010

July Happiness Project-SPIRIT: Under The Tuscan Sun

This is part of my continuing quest to find a way to make my everyday world more joyful. This month’s Happiness Project word is SPIRIT. Now I don’t know what that word actually means to everyone, but I give it a twofold meaning here. I think that what we are trying to accomplish is that we search for our inner spirit and that we learn to grab that spirit for joy. Our inner spirit can be something as simple as reading a good book, or learning a new recipe or quite frankly just counting our blessing. To many of you I know that spirit has a religious connotation and there is joy in reading the Bible and doing God’s work.

When I look to find my inner spirit, I need to examine just where it comes from. Do I recognize my journey and how it has shaped my life? I know it may sound silly but one of my favorite movies of all time is Under the Tuscan Sun. It is not because of the landscape, or some of the rather cute Italian actors that are part of the film. It is because it is about a woman who searches for who she is and what she is able to become. I personally liked the train analogy in the movie (No, not Freudian train analogy, minds out of the naughty room please). Here it tells of why the Italians built a train track in the Alps when no train could reach there. It was because they knew one day such a train would exist, and it would need a track. The movie goes on to discuss how we would not be who we are without the turns of our train track and that we can and are better for our life experiences.





I think this is what spirit is all about. We accept our lives for what it is and learn from it. We take what we have been given and we do something with it. We embrace who we have become and decide that we will provide ourselves and others a future. We basically make lemons out of lemonade.

It also doesn’t matter how you channel your spirit as long as you do. Whether you write blogs, give free advocacy advice, start a ministry, or a support group it is part of your spirit. Whether you take what you have been handed and decide to revamp a career, as so many of the coaches that collegeman has had over the past two years have done, it is spirit. It is knowing that as we grow and as we accept what life holds for us, we change and it is our responsibility to make it a positive change. No one is going to do it for you. No one is going to hold you by the hand and say now come along little lady/gent, it’s time for you to get a move on. No one can do that for you but you.

I know, hubby tried for years to get me to sit down and figure out what would make me happy. He would periodically sit with me for hours, even days, and discuss what interests me and how I would go about changing my life. In fact it got to such a point that he would start to call it our “every 6 month talk.” It wasn’t his fault that nothing ever appealed to me. It wasn’t his fault that I couldn’t motivate myself to try something new or figure out how to channel what I was feeling. Heck therapists who were helping me deal with the boy’s issues couldn’t’ even do that. It was and will always be up to me to channel my spirit and find a way to access those train tracks where no one was ever able to go before.

Think about it. What is your spirit? How do you want to access it so that you are happy? I think the first part for me was understanding that I was entitled to be happy and that everything is not about the children and the hubby. Sometimes I need time for me and for me alone. My spirit needed nurturing too. I think that is why I could never figure out what I really wanted to do. I never allowed myself the belief that I was really important body and soul. I was always afraid that any amount of time I spent on me meant I might miss an opportunity to help the boys. I gave up everything that had previously been important to me outside of the boys’ sphere. I gave up everything that was important to me, outside of supporting hubby in his career. I even had to justify exercising as a form of stress relief so I could deal better with the boys’ issues. I didn’t even allow myself the desire to want to feel and look better for me.

I have changed today. I have grabbed that inner spirit and I am back doing what I have always liked to do. I always loved to write. I always loved to help people. I always love politics and religion and making a sheer nuisance out of myself to some people. I admit it, on some political blogs; I do cause trouble, just because I find what they are saying so annoying. (Can’t help myself. It is part of my inner spirit too. Never said I was an angel.) In fact, I just wrote a comment on an etiquette blog, were the writer lamented the olden days where children were seen and not heard. Who knows, I might be banned from there now too. (No swear words, just a discussion about the art of conversation and the out datedness of Dr. Spock.)

I think for many of us, we never want to look back and say, what if, when it comes to our children and our marriages. So we put ourselves so far into the background that we fade away. We forget that our spirit needs to be nurtured too. It is not just a matter of paying attention to your physical needs either. Your spiritual needs have to be satisfied in order for you, to be whole. What I also learned is that without a whole person being there to help your children and be a helpmate to your spouse, no one can become everything that they were meant to me.

My grandmother (RIP) didn’t realize that she could nurture her spirit until she was in her 80s and my grandfather had passed away. We used to joke that she finally came into her own. But thank God that she eventually did. I waited until I was almost 50 to figure it out. While I have always been involved with the school commuity for the boys and helped out when they needed me. But again only as a way of saying thank you for all that the school had done for my children, nothing I did was done for me. In truth, it has only been a little over a year  that I have invested time and energy into my own spirit and soul. Don’t do that. Don’t wait. Don’t give up all that you are. Don't give up all your own dreams. It helps no one, least of all you.


Until next time,



Elise