SAT, ACT, Accommodations and Asshats

Just when you think the world has mitigated its percentage of asshats you come across the most absurd stupidity you could even imagine. Ok, ok…as parents of autistic children we have our fill of morons on a daily basis sometimes, that it is true. But I am actually talking about those out there who are designated to help your child. Or so they say. No I am not talking about the special education professionals in school. I am talking about those that review your child’s application for accommodations when it comes to national testing, specifically the individuals at the SATs and ACTs.

There are two widely taken exams that seniors have to take in order to apply for college admission. The well know Scholastic Aptitude Test, more euphemistically called the SATs, and theACT. The SATs is the traditional test that most of us took during our sojourn through the trauma of college applications. It is that test that decided whether you reason and apply logic in the same way that some group of psychologist and educators in Princeton, New Jersey think you should. The ACT on the other hand is a much more concrete exam, relying more on actual knowledge than on some undefined idea of logic and reasoning. I suppose logic and reasoning would be all well and good if everyone was to go into philosophy or theoretical physics, but for most students actual retained knowledge tends to get you where you need to go on a daily basis.  It is amazing how a student can look totally different on these tests. Collegeman took both exams. On the SAT he barely broke 1100, while on the ACT he had ivy level scores. The interesting thing about the SAT was that on the essay part of the exam, the concrete part, collegeman received 11 out of 12. So, from that experience, we decided that it would be best that Highschoolboy take the ACT first this spring, and if he needs to, the take the SAT in the fall.

Now how do you go about applying for accommodations for these exams? There are forms to fill out. There are always forms, lots of forms where ever you go. Bureaucrats rule the world, they really do. But if you keep everything from over the years all together it does make it less daunting every time you need to dredge up what happened to your child when they were 2yrs and 2 months to prove that their disability was not invented yesterday. Many people keep a binder full of information and anecdotes for the teachers from year to year. We also have a file cabinet full of every test, IEP and information from every meeting categorized by year for each boy. It is ironic how executive functioning issues are what haunts your child throughout their education but without your grasp of executive functioning everything that your child needed would never get done.

So off you go to fill out the forms. The guidance department at your school needs to fill out most of the form, explaining the IEP, accommodations and recommendations that they are requesting for your child. I found my guidance department to be very helpful and understanding and explained everything that we needed to do very clearly. Of course, if they had told that to HSB nothing would have gotten done and it would have been lost down the rabbit hole on its way to Wonderland. So off the form went to both the SAT and ACT companies.

Now I don’t remember if I have ever told any of you about our travails with the SAT Company and collegeman. But it was something out of a surreal novel.  Collegeman for all tense and purposes by the time he was 5 years old was on a terrible downward trajectory. He could not function in a classroom; he spent a lot of time stimming ; did not have appropriate age related skills in anything except that math and reading were stratospheric for his age. They had diagnosed him with PDD-NOS and they were not wrong in any way shape or form. Now we had all the medical evidence to back that up. We had all the IEPs the recognition of special placement; the developmental letters from the doctors everything. The SAT company denied him any accommodations except breaks and because of the breaks an alternative classroom. I have to tell you I sat looking at that letter and must have had to read it at least a dozen times to really take in what it said. I called the guidance counselor and asked who the hell gets accommodations if collegeman doesn’t get extra time. He really didn’t have an answer. He was as stunned as I was.

I called the SAT people and they told me to write a letter to the special accommodations department requesting a review. So I did. I explained to them who collegeman was and the issues he has been through and how he needs that extra time. They actually called me. Yes, one of their doctors called and then proceeded to talk to me like I was an idiot. “Oh he has aspergers and that doesn’t mean he needs accommodations. Most students with aspergers don’t need extra time. It’s a social disability and there is no record of him having anything that would influence how well he does on our test. Just because the schools give the extra time doesn’t mean we will. Its two different kinds of situations, yada, yada, yada” I tried to explain to this doctor that the boy had been diagnosed with pdd and how much therapy he had had over the years and how that didn’t take away for his need for extra time. “Well, send me some testing from earlier if you have it and I will look at it, she condescended.” Everyone would be real proud of me, no yelling screaming or name calling on my part. I kept my heart in my throat and proceeded with this conversation. I hung up, very demoralized thinking with everything that this child has been through and now this from people who have no idea who he is. I hated the SATs before and now they were definitely at the top of my shit list.

Just as I was about to get up and start searching the files the phone rings. It was the SAT psychologist.

“Is this collegeman, from name of our town, that attended X elementary school in the year 19..?” she asked.

“Yes, it is.” I replied

“I was the school psychologist that did the initial testing on collegeman when he was 5. You must have given him tremendous remediation and therapy for him to have the testing scores that he does.  I can’t promise you that I can get him 100% extra time, but I can get him 50% extra time, will that do?” she asked.

“Of course, anything that you can do. He really needs that time,” I replied.

“Send me everything that you have and I will get it done.”

“Thank you.” I hung up. Sat down on my bed, and began to cry hysterically. Somewhere, somehow, someone was watching over my child. I don’t believe in coincidences. Things happen, and the people you meet you are meant to, at the right time and in the right way. You can bet, that that psychologist received one bigass package the next day, by hand from hubby’s office. (Just as an aside, how horrible it would have been if she had not known him. He would have never gotten that extra time.) At least for now, and supposedly for the rest of his life, the SAT organization has it on file that collegeman can receive all these accommodations, for any test he ever takes that they administer. I’ll let you know if it works out that way when he goes to take the LSATs for law school next year.

Meanwhile, HSB has a different tale to tell.  The SAT Company never gave him a moment’s trouble. He has 100% extra time, alternative location and use of a computer for the essay part of the test. Now as I have said before, HSB was never as disabled as collegeman, ever. He has his issues, everyone is well aware of that, but what we asked for we got. We even sent in his latest testing which showed an executive and reading issue, but an extremely high IQ, almost 30 points higher than collegeman’s. Go figure. I can’t and neither can the guidance counselor. Just count your blessings and don’t try to figure it out he told me, and I truly shan’t. It was just one heck of a surprise, considering what we had been through with collegeman. Maybe they kept it on record that I had informed the psychologist that they would be hearing from us with another child. Who knows?  Yes again,I had to read that letter several time over too. Not out of shock. But had to make sure I was reading it right.

So of course, since the ACT had been so accommodating with collegeman we thought we had the process knocked. You know the old saying, man plans and God laughs. Well he was laughing all right when it came to the ACTs. First they only gave HSB 50% extra time and no computer for the essay. Excuse me. Had to read that one over again too. Contacted them and they said to send it reports from an OT, old IEPs and a writing sample. I told them he uses a computer and doesn’t have sample written essays, but some short answers that maybe consist of a few words each. They said that would be fine. Well here they had an OT evaluation that said he has fine motor issues, can’t hold a pencil properly, and needs to use a computer. That he has had the use of a computer since 2nd grade and that he doesn’t have the ability to even take notes for himself in class. The aide scribes notes for him. Nope they denied him again. Then the school sent a letter from the psychologist saying that he needs to use a computer. They sent back a letter saying that a psychologist doesn’t mean anything that they need a letter from an OT. Gotcha, asshats! Made an interesting call to the ACT Company. They put me through to at least three or maybe four people. Kept passing the buck I assume. Finally someone came on the line and started quoting the Americans with Disabilities Act to me.

Now once again, everyone would be so proud of me. I did not yell, I did not scream, didn’t even pull rank with my law degree. I told them you wanted the OT evaluation you have the OT evaluation that says he needs to use a computer. But that is not our policy she said. He has to be physically incapable of holding a pencil. So I asked you mean if he had cerebral palsy? She had to think about that really carefully, probably figuring I was setting her up. Well, she answered or they have to be missing a limb and can’t write with the hand they have. Yes, the ‘brilliance’ actually said that.

She then told me that most schools do not require that they do the essay and that it is a separate part of the test and not even graded together with the main exam. That if the schools HSB is going to apply to don’t require the essay then the issue really is over. All I had to do is inform the proctors before the exam that he would not be taking the essay. They inform the ACT Company and that also solves the issue. I thanked her and promptly called some local colleges.  Nope not an issue. I also remembered that collegeman did not take the essay part of the ACT and that is probably why we never had this problem before. Collegeman also got into his college sans ACT essay, after we received the scores from both tests we decided to only send the ACT scores to the colleges. The college actually asks for the application essay, that everyone has to write, and that in the event that they want further information about your writing ability they will ask for a graded essay from your high school. That’s fair enough. An essay from school is also more indicative of ability than any off the cuff, hastily written test essay (at least at this age. We aren’t talking Bar Exam here).

So off HSB will go, next week into the realm of college boards.  Two days of testing, four hours a day. Poor kid. But it will be all right. He can do it. He actually will probably have a good time. OK he would rather be playing video games. But it is what it is, just another step on that journey of discovery called: how does this test my intelligence and fitness for college?

 

Until next time,

 

Elise

P.S. I will let you know when we get the scores back.

Posted in SCHOOL HELP | 2 Comments

Autism Awareness, Perspective Taking and Freedom

Many of the truths we cling to depend greatly on our point of view.

                                                            Obi-Won Kenobi, Return of the Jedi, LucasFilm,Ltd

 

OK, so what kind of blog about autism spectrum disorders would this be if every once in awhile I didn’t channel Star Wars, Star Trek, BattleStar Galactica and a few animes and mangas. Truth be told only the anime and mangas are the boy’s obsessions. Everything sci-fi belongs to me and me alone. While collegeman will allow himself to be pulled into a Star Wars movie especially during the lightsabre duels, Highschoolboy will regale you with anomalies, impossibilities and things he generally considers annoying about the entire genre. He is oh so not fun at these times and I end up throwing him out of the room.

But the point of the quote is an important one for this post. This is autism awareness month. Much has been made about neurodiversity, the cruelty of society and their lack of compassion for our children in just these short few weeks. In fact as many people reading this know, there is that one particular blogger who unwittingly started a chain of posts in which she did not come off too well, until she apologized. But I think something even more important may have happened during those days of autism-mom ire. It is recognition that many of us do have our own perceptions and perspectives and how everything we do colors our every waking moment. Now I am letting no one off the hook. If you read my post about the incident you know that I was not and probably still not too enamored of the individual who wrote the original offending blog, but I think it’s important for us to take a look at what happened and see what we can do to minimize misperceptions within our society.

Listen we all come to the party with baggage. That baggage for many of us in the autism community is rather heavy. As the parent of two aspie boys I know what I deal with on a daily basis. But I also know that it is nothing to what so many in our community experience in trying to help their nonverbal, non-toilet trained, non-communicative children. As I have mentioned before I also am a volunteer advocate in my town, so I sit in on a lot of CSE meetings. I have helped people whose children range from mere speech impediments, to clinical depression, suicidal tendencies, anorexia, bi-polar and cancer. I have helped people set up out of district placements and residential placements for their children. I have seen joy when a child is undesignated because they can hold their own, and I have seen anguish when a parent has to admit they are helpless to help their child. Being a moderator on @thecoffeeklatch has opened up another world of information for me. I have found out about medical conditions that I never even knew existed. And yet, with everything that I have seen over these past 15 years it doesn’t even cut through the surface of what people face and the strength to which they deal with soul sucking trauma.

I don’t know, does that offend someone when I speak of it that way? How else would you put it? I guess this is my perspective. Sometimes you just feel like your soul is being ripped out and you are fighting with all your might to hold on so tight. Many of my friends have turned very adamantly towards God. They reach out to him and his wonders, asking for his guidance and his care. Others, like me, have turned away from their belief in God’s wonder and just know that he is there in some form whether we are angry at him today or not, is something I can’t answer for everyone but myself. That of course would really depend on the incident and the moment I suppose. But that is my perspective.

I think perspective, as with the truths we hold dear, depends greatly upon our day to day lives. But more than even that, we want the world to see us, our families but most importantly, our children, as people.  We want the world’s perception of our children to be one of respect and care and kindness. We don’t want them to be pre-judged because they have a disability, but we also don’t want them to be ignored because they have a disability either. We want the perception of society to be one of openness and an out stretched hand. One that says here we are, you are welcome in our world, you are welcome in our society. Come with us and together we will brave the future.

But the question for us is how to we get people to change their perspectives so that our children are seen as the people they are but with an acknowledgement of their issues? How do we get society to think outside of their own perceptions and acknowledge that not everyone’s life is like the one they lead? I don’t really know. Hubby once said that if the boys had not had autism, he might have been one of those parents upset that children with these disabilities were going to be included in school instead of in special classrooms. He was never angry at the parents in town who tried to stop the inclusion program. Of course, he also fought tooth and nail to make sure it happened for his sons, but he was able to understand the other side as well. It was a matter of education that is all. Truthfully after a few years of inclusion, there is no more hullaballoo. It is the way things are done here. Special education alongside regular education all together in one big societal mishmash. Well as much as this suburban county can be called a societal mishmash.

I think hubby has an amazing unique voice in this world. He has an uncanny ability to see the other side (except when he is arguing with me of course) I always wonder if that is from his daily legal experience. Life for him is being able to see every perspective before you fight for your client. Or perhaps, because he has this uncanny ability to see the world through other people’s eyes is what makes law a perfect profession for him. Don’t know, but what I do know is that he can keep you grounded and allow you to take stock of reality. Everything is never one side or the other, ok unless you are picking on a four year old child and thinking it’s funny. The reality is, is that gray covers more of life than what we would like to admit.  Is it easy? Not really. Is it worth the effort to make society see our children? We have no choice if we are to secure for them a future. They also have the right to a future like anyone else in this world. Just how do we do that is the question? How do we make society see our perspective? How do we get society to perceive life the way we do? How do we get society to see us and not see through us?

The truth is that we must stand up and be counted. We must open our voices and shout. We must make those in power hear us. We must make society acknowledge that our children and we exist. Not until all in society are welcomed by society;   not until all in society are helped by society; not until all in society are loved by society; not until all in society are viewed as part of the company of humankind, will we all truly be free.

 

                                                      PLEASE WATCH           Garth Brooks: Freedom 

 

                                                      

 

Until next time,

 

Elise

hat tip to @CBalling one of my twitter compatriots for the idea of perspective taking.

Posted in HELPING YOUR CHILD | 1 Comment

Frustration, Anxiety and Dysregulation

I have to tell you that no matter when you think you have every issue solved or every issue under control, Satan’s’ legion rears its ugly head and takes you on a tailspin, whirlwind dive head first into the eddy of “crap not again.” No it’s not so much that it’s something new, even though we do deal with new issues all the time, but t’s the overarching issue of helping the boys deal with the emotional output and stimuli that assaults them every day. I truly don’t know what causes it. I don’t even know if any professional really knows either. We just know that it happens and when it happens it is oh not so much fun. I am talking about emotional dysregulation.

This is the when your child is so overcome by his own emotional responses that he is unable to control himself. There can be tantrums. There can be meltdowns. There can be physical damage to things and physically attacked persons. There can be inappropriate social interactions and inappropriate school interactions at these times as well. Now I can’t speak for every parent or person. But I do know what happens with the boys when they get overwhelmed.

HSB has trouble channeling his frustrations. He does not know what to do when he is disappointed in himself. He doesn’t know what to do when he is afraid we will be disappointed in him. He doesn’t know what to do when he feels overwhelmed in school. He doesn’t know what to do when he catastrophizes over an assignment. He doesn’t know what to do when he needs time to chill during the day when he is overwhelmed. HSB needs help understanding himself and he needs someone to cue him on how to help himself.

I actually just came from a meeting at the highschool where we put our heads together on how to help him learn to self-advocate in this situation. Part of the problem for HSB is that he doesn’t recognize when he is getting overwhelmed. I think it is the aspergers part of his world. He has trouble reading other people’s emotions, so why shouldn’t he have trouble reading his own. Needless to say, adolescence is not the easiest time of life to begin with. The hormones are raging and the pressure especially in that junior year of high school is enormous, or maybe it’s just where we live. But the kids are so hyped up about grades, and college boards and college visits. I mean never mind the juniors, a lot of seniors still have not heard from their first choice school, you could cut the anxiety in the school with a knife. It’s palpable; you feel it the moment you walk in.

So this is the atmosphere that HSB enters every day. He has his own anxieties from having a hard academic year, from losing his best friend, from knowing that a major change is coming and not really knowing what to expect or where he will end up. Then he is confronted with everyone else’s world and auras and teenaged telepathic angst. There is a new theory about persons with autism that refutes the age old nonsense that persons on the spectrum cannot feel emotion. In fact the new theory, the one I and every other mother of an autistic person will attest to, is that they feel too much. That they feel so much in fact but have no way to process the emotions because their synapses are damaged. So in fact as HSB tries to make sense of his world, he is also trying to assimilate everyone else’s world too.

Frustration sets in and he ratchets up the emotions. When HSB was little we read some wonderful books that taught us how to handle his dysregulation and how to help him: The Out of Sync Child and The Explosive Child. But the one problem that always remained was how to get HSB to help himself. Today in my meeting we talked about how important it is for HSB to understand himself. To start to rely on his own understanding of how his body cues itself, in order to know what self-help techniques to employ. Now this is where the para comes in. She is going to have to know what to look for and calmly let him know that he should be dealing with the issues. That he has several options he can employ.

Leaving the situation. It is very important that HSB or any child when they are overwhelmed be able to extricate themselves from the situation causing the stress. He can go out into the hall. Take a walk around the school. HSB used to actually leave the class room and sit in the boy’s bathroom for 20 minutes until someone came and got him. He didn’t know that this was his self-help tool. Unfortunately he couldn’t be allowed to continue sitting in the bathroom. An alternate quiet area had to be suggested. None of which he wanted. I am going to suggest the nurse’s office where he can lay down and be quiet if he needs to.

Tell the person you are talking to that he needs a break. Another issue that HSB has is that he feels overwhelmed very quickly by work. Whether justified or not. When he gets that way, he needs to be able to say to the person/para/teacher that he needs to take a step back and regroup. That he needs a few minutes to process everything that he is being told. Sometimes he cannot do the task they are asking him to do at that moment, and he needs to request doing the task later.

Write the frustrations down on a piece of paper. Sometimes being able to write your questions down as you think of them, instead of trying to remember them until it’s time to talk to the teacher is very helpful. The act of trying to remember for HSB is very painful. He instead tends to blurt out his question at inappropriate times. Or he spends so much energy remembering the question that he misses the rest of the lecture. This has not been happening lately, but we will reemphasize this tool as he gets closer to finals.

But before he gets to the techniques, he does need to understand how he feels. He needs to learn to use words to describe how he is feeling. The truth is I think as with all persons with emotional dysregulation, when they are in that moment they are in the moment and it is already too late. The trick is to catch them and help them catch themselves as they start to come to the apex of the moment.

But I guess that is the elephant in the room. Just how do you do that? How do you get a person who has emotional recognition issues to recognize their own emotions and what it is doing to them? The way I see that it has to be accomplished is how everything is done in teaching these children-on a moment by moment basis. Each situation must be examined and the tools employed. You cannot assume that they will be able to transfer the lessons from one situation to the other. They can’t with other social skills, so it will be no different with teaching them how to recognize when they are having terribly anxious moments.

You might wonder, well what have they been doing for 16 years with this kid? Truthfully we have been supporting HSB just how I described in this post. But with every turn of seasons a new challenge emerges, and you are faced with an old nemesis albeit wrapped up in shiny new gift wrap. It’s no present by any means. It  means it’s time to tweek the program. It means it’s times to get back to work.

 

Until next time,

 

Elise

Posted in UNDERSTANDING YOUR CHILD | 5 Comments

No More Bullying: Sign the Petition

 
 
 
This speaks for itself.
 
Until next time,
 
Elise
Posted in BULLYING | 1 Comment

Oofnik, Reader Rabbit, Zombies and Social Media: 21st Century Parenting

As any parent of a child with autism knows there is just something about the computer that draws your child to it with the strength of a magnetic superconductor. There is no way around it. I personally think there is some telepathic message being sent out that affects your child’s brain wave patterns that turn them into computer-suckerfish. I have never experienced anything like it with any other toy, electronic appliance, or school related item (ok school related item may be pushing it. That would not happen no matter what). The question is what can you do about it, if anything.

Honestly, we all know that too much of anything is no good. Just as pediatricians have told us for decades that too much television is not good for children, so too, too much computer is no good for children. But on the other hand, television has educational programming like Sesame Street. That wonderful old stand-by of Elmo, Bert, Ernie, Big Bird and of course our friendly neighborhood grouch Oscar. ( I have to tell you that I used to have the boys watch the English version of  Israeli Sesame Street, not just because they would garner a basic understanding about Israel and Judaism, but because the name of the grouch is Moshe Oofnik.  Don’t you just love it- oofnik, I still tell them they are being an oofnik when they are cranky.) Then of course, computers have terrific educational programs as well. My children were brought up on Reader Rabbit, Learning Center and Carmen Sandiego. Sadly my friends tell me none of these companies exist anymore or they have merged and the programs that we loved have disappeared.

Today the boys are much older and have a different purpose for their computer. Yes, they use it for school. A computer is a wonderful research tool for every subject imaginable. The kids really really love Wikipedia. But I have to tell you the teachers and professors do not. It is generally the only source that educators tell the boys never to use in a paper.  Then of course you need to watch which sites they go on. There may be a myriad of educational sites, but there is also plenty of hate sites as well. I just “googled” the words “quotes, foreign policy, Israel,” and the first page were all anti-Semitic hate sites from the United States and around the world. It’s my impression that sites are presented from the most trafficked to the least. Sadly, I am afraid this does not say much about the world we live in does it.

Luckily the boys tend to know where to go for information and how to access it. They are old enough to understand plenty about the world around them and to know when they have hit upon something terribly negative. But of course that was not always the case. They were not born older teens, but began their sojourn into the world of computers very young. Collegeman was four when we bought our first computer, and Highschoolboy has been on it since he was two years old. He actually at that time probably understood more about the computer than I did. In fact, by the time he was five he was helping me program my cell phone and fixing issues on the computer at home.

Now what do we do to protect our children from the hate sites?  Simply put there are parental blocking programs where you can go in and stop sites with certain words in their title or front page from being accessed by your child. We used them very effectively when the boys were young. However, we also realized that at some point they will do no good, especially when HSB figured out how to unblock it. Don’t ask me how he did, he just did it.  But these programs are effective when the children are very young. HSB was around nine when he outsmarted us and the blocking software.

Then of course there is the all purpose, don’t put anything in their room. Keep the computer in a central location, a place that you can have easy access and spy on your child. Yes spy. Tough nuggies as the saying goes. They may think they are old enough to surf the web themselves, but the average teen cannot make informed decisions about who or is not a “good” person on the internet, never mind a child with social relatedness issues. This actually brings up another topic, and that is social media. Truthfully I have been really lucky. Neither boy is interested in facebook, twitter, MySpace or any of the other social media out there. They do not understand how important it has become in the lives of so many tweens and teens. They frankly do not care. I am also not about to tell them. Yes, I am lucky and I know it.

We also did not allow the boys to have their own emails until collegeman started college. We knew that he had to start to explore his independence in some ways especially since he was still living at home. However, we have the password and access the emails continuously to see who he is talking to and what content he is being sent. He does have an account on You Tube where he comments on video downloads.  But for the most part, nothing has ever been said that is inappropriate to him but sometimes some responses have been nasty. We let him deal with it. It’s really about differing opinions and nothing has ever been said that caused any cause for alarm. Additionally, it has also become necessary for us to check his email, because he forgets and misses important announcements from professors. We have reminded him to check his email but to no avail. On the other hand he does correspond nicely with the professors and his advisor so it is also a positive social reality for him.

But lack of interest in social media is not the reality for most parents. The FBI has a wonderful website that teaches parents about internet safety and what to do and how to protect your child. The National Center for Missing and Exploited Children also has a website for parents called NetSmartz.org. Please use these sites as a place to start and learn how to protect your children on line. Just as an aside, my brother-in-law has the passwords to both of his children’s facebook pages and continually checks them and will even delete a picture if he finds it inappropriate or questionable. That was the compromise they came up with and I have to say I do agree with his parental oversight (don’t tell him).

We did however; face a different challenge with HSB. He does love his Xbox. Now for those who have been living among the Amish for the past decade may not know that Xbox, Nintendo Wii, and PlayStation 3 are the total bomb. Most children, especially boys, would give their eye teeth to possess one or all three of these systems. HSB just loves his Xbox. Why? Because at one point he had a microphone headset that allowed him to chat with players when he played an on-line multiplayer game.  I have to tell you I did not like it. It caused me the same concern that you would find with social media. In fact in many ways, since it is so immediate, it can even be more concerning. HSB was talking in real time to people on Xbox. You did not know who they are. You did not know where they are. You did not know if they are who they say they are. You did not know if they are the age they say they are. You did not know a darn thing about anything they said. In fact, a recent report by an internet watch group actually stated that Xbox multiplayer interactive games are a pedophile’s paradise.

Needless to say, I had taken away the microphone, not because HSB had done anything wrong, but because it truly concerned me. He was actually forbidden to chat on line and forbidden to use his microphone in game play. However, one day, while HSB was on the computer playing an on-line game I could have sworn that I heard voices coming from the computer. He kept reassuring me that it was just the game. Now he did have a microphone on his computer which he used for Spanish practice, but I really didn’t think anything of it. The next day I heard him singing as he played his game and the computer told him to “shut-up. “ Now that I knew was not a computer generated part of the game. Fool me once, shame on you, fool me twice shame on me. Mommy went into action.

Not only did the boy loose his microphone. He lost that game and any other multiplayer game that required a microphone access. He also could not touch that computer for a week. You know it wasn’t even so much that he was chatting, even though he had been told not to. The reality was that he had been told not to on the Xbox and you could surmise that in an aspie sort of way he didn’t realize that that meant the computer too. Except he lied to me about the voices coming out of the computer, so I figured he really did understand the implications of a no microphone interaction rule. It was a bad scene let me tell you. Screaming, crying, temper tantrums, the whole gamut. He was lucky he was ever allowed back on the computer again. But guess what he doesn’t pull any nonsense, at least not that I have been able to discern. By the way, his computer is in his office, which is right off the kitchen/family room. The rule is that the door to that office is always always open and that we, his parents walk in anytime unannounced. (Listen it’s not his bedroom. In there he has a bed, dresser and books. There he can close his door and we do knock before entering. At 16 he does need and is entitled to some privacy as well).

Another issue that parents face is what kind of games to buy for the computer and any gaming system. The truth is that you know your own child.  Some children are on age level and some children are not ready for age-level games. I know that many of us worry when our children don’t play what their peers are playing, but remember too many tweens and teens play games that are inappropriate for them in the first place. Mature games are just that, mature and are rated that way, just as an R rated movie is rated that way, for a purpose. It is not Big Brother trying to tell you how to raise your child. It is a warning that some content may not truly be appropriate for your child’s age.  I tend to find that the ratings are right on target. The truth is that there are many games out there that I think should be removed period. But that is just my opinion and living in a democracy there are just some things we cannot control as much as we feel we need to. Listen HSB still tries to save the world from Zombie mutants as often as he can, but at least he knows that gratuitous violence in a reality based game is just nasty.

Ultimately, the best way to figure out what is an appropriate game for your child is to read reviews from reputable sites. Here are HSB’s favorite game review sites:

http://gamespot.com

http://gamefaqs.com

Don’t you just love the challenge of parenting in the 21st century!

 

Until next time,

 

Elise

Posted in Computers and Internet | 5 Comments

Autism & Alleluias by Kathleen Deyer Bolduc: A Short Review

Autism & Alleluias  is a lovely read about a mother’s search for spiritual guidance in helping her autistic son. She details varied situations and how calling upon her faith had helped her in her pursuit of inner peace. She talks about situations that are all too familiar to parents of autistic children and you will be able to identify with her feelings and a desire for inner support. For those looking for a spiritual read at this time of Holy Week you will find what you are looking for in this book.

The author Kathleen Deyer Bolduc, MA, is a nationally recognized author and speaker in the field of disability ministry. The mother of a young adult son with autism and moderate intellectual disability, she has shared her inspiring story in His Name is Joel: Searching for God in a Son’s Disability (1999), and A Place Called Acceptance: Ministry with Families of Children with Disabilities (2001).

For those looking for a more indepth Christian discussion about this book please click here for my friend Barb Dittrich’s review. (It will be avaliable by Good Friday) Barb is not only the parent of special needs children but also runs the disability ministry Snappin Ministries (here). 

Wishing everyone a joyous week.

Until next time,

Elise

Posted in You | 2 Comments

Educating Your Autistic Child

One of the major issues facing a parent of an autistic child is what type of schooling should the child have. We know that there are many models: inclusion, self-contained, homeschool and within each model there are variations. So how do you pick which one is best for your child? Honestly, I can only say by trial and error. I know its unbelievable right? Everything we do with our children is trial and error; trial and error as to the type of therapy, trial and error with the medication or alternative therapies, and now trial and error with their education.  You get annoyed after awhile, that there are no hard and fast rules for anything when dealing with an autistic child. What worked one day may not work the next. Just when you think you have everything figured out then there is a new challenge which makes the old behavioral plan no good. Ok, it’s not like we don’t’ change and adjust for any child, it’s just that with an autistic child the change and adjustment period is not about you, it’s about them, and like changing to daylight savings time, may take weeks and cause a lot of sleepless nights, meltdowns and angst.

Listen, we make choices for our children and we do the best for them no matter what. We decide to take chances sometimes and then have to follow through.  How do you decide what is the best form of education for your child? I think it’s like anything else we do for them, we need to see how they handle the situation and if there is sufficient growth and if the personnel who are there to help them really know what they are doing.

When we moved to our school district, collegeman was only 5. He was terribly disabled at the time. He not only could not handle a regular classroom, he couldn’t walk down the corridor in the elementary school, eat in the cafeteria or play in the gym. The world for him was spinning out of control and we needed to bring his world back to center. We tried a regular kindergarten classroom with a para. But it did not work. He just could not adjust. Our school district then sent him out of district to an autism specific program.

What is an out of district program? Put simply it is when they send your child, at district cost, to a program out of your school district because they cannot educate your child. Under the Individuals with Disability Education Act (IDEA) your child is entitled to a free and appropriate public education (FAPE). That is where that term that everyone throws around comes from. But it is more than just a simple term. It is why the districts do what they do for your child. So because they could not educate collegeman appropriately in district, they sent him to a wonderful program not too far from home in another school district.

It was all autistic children; collegeman was the highest functioning among them. The classroom was only eight students with a teacher and an aide in the room. Each student has their own desk, but it was more like a cubicle. There were no distractions and no one could bother each other. They each had their own level of work and they received support for each of their academic issues. There was also a speech therapist on hand and an occupational and physical therapist for those that needed it. They also did community skills training with the children.

They would take the children to the local supermarket once a week and have them go shopping for items they would eat for snack that day. I ran into them one day, and I could tell you that it was an amazing sight to behold. There they were, eight little children, walking in a straight-line, flanked by two teachers, happily figuring out what special treat they would get. No one fussed. No one melted down. Everyone was appropriate and everyone seemed to have a good time.

Now there was also plenty of group time in the self-contained class every day too. There was story time, where the teacher would take out story boards that simply told the story in the book she was reading so all levels could follow along. There was also lunch time. The class ate together at a table in the room. None of them could handle the cafeteria. The teacher, I remember her well to this day, her name was Jean, a kind and lovely patient woman if there ever was one, would take some of the children to the cafeteria who bought their lunch and then they would all sit around and eat together. She told me that collegeman started a trend that year. No one had ever tried to talk during lunch. But collegeman would ask everyone if they enjoyed their lunch. It may have been the same question every day, but it started a pattern and a trend that kept going. Jean told me that one day, one of the other children brought collegeman back packets of ketchup from the cafeteria because he knew that collegeman liked ketchup on his turkey sandwich. It’s the little miracles you know, that make you cry.

At the end of the school year, there was a carnival at the elementary school that the entire school went to, even the children in the self-contained classroom. They all marched on the field and got to have ice cream at the end of the special program. I got there early and watched as collegeman and his friends from class marched to the field and back, with no hint at all that they were not part of the regular school. Jean saw me and came over and gave me a hug. She proudly said, “You can’t tell which one are our kids, can you? “a hint of joy and pride in her voice, of a job so well done. Funny I can see her face to this day. Where ever she is I hope all is well with her, for she deserves blessings.

The district next decided to bring collegeman back in district and create their own self-contained program. They actually hired another teacher from the program that collegeman had been at, no not Jean, but a lovely woman who ended up being collegeman’s special education teacher for three years and highschoolboy’s for first grade. The class had five children in it with all levels of disability. They interacted with a regular first grade class during specials, like art, music, recess and gym.  In fact, from this class we requested that the town recreation center and the school district create a summer program through the town camp for children with disabilities.

The truth is that the town under the Americans with Disabilities Act (ADA) had to allow and provide access for our children to the town camp. But they had no idea how. The school district had to provide extended year services for our children, but our children were all too high functioning for the regular county programs, so we moms came up with this idea. We wrote a letter to the special education department of the school district and a simultaneous letter to the town camp. Well the rest is history, last time I checked there were over thirty children in the extended year/summer camp program which had started out with four from collegeman’s self-contained class.

Now the self-contained/summer program was such a success and the behavior such a nonissue that the district decided to try a total inclusion program for second grade. There are many versions of inclusion. The one that was settled on for our district is the one where the special education and regular education teacher share the room, and the special education teacher is there for support of the designated children. Their job is to modify and create access for the special needs children. There can also be an additional aide in the room, if an extra pair of adult hands is needed.  That is basically the model that collegeman had until he reached high school. In middle school the special education teacher presentation was modified a little because as he got older he didn’t need the services of a special education teacher all the time, but there was definitely the support para there, just in case.

For Highschoolboy everything was very similar except that he was never in a self-contained classroom. He, luckily, was never as affected as his big brother. But we also knew what to look for and were able to get him that all important early intervention that collegeman never had. Oh HSB still has his moments, that is for sure, anyone who reads this blog knows that, but the inclusion model that was created by our district has worked for both of the boys.

I do have to tell you that our district does still send children out of district if necessary. There are even those that are placed in residential if necessary. I have several friends whose children are in residential. I can honestly say it was a gut wrenching decision for all of them. It is not an easy thing to acknowledge that at some point you cannot help your child. That in fact they might be better off in someone else’s hands. But I know my friends children are thriving, learning, growing and becoming happy young adults. My friends know that they did the right thing by their children and that is what really matters in the end.

I honestly cannot tell anyone about homeschooling, while I have many twitter and facebook friends that homeschool I cannot discuss it in anyway, except to say that it is best for their children. Their children by all accounts are happy and thriving. They are learning, growing and becoming the persons that they are destined to be.

Listen, we do for our children what we can and provide for them the best we can. Whether the decision to homeschool, place them in self-contained, inclusion or semi-inclusion programs depends upon your child and those around them. We have experienced several different versions of educational models for the boys. Each one had its benefits and each one has its draw backs.  Each year we tweaked the programs and fixed what was wrong and continued with what was right. These programs worked for us but they may not work for yours. What works for your child is best decided by you. Don’t let anyone ever tell you any different.

Until next time,

 

Elise

 

 

 

Posted in SCHOOL HELP | 2 Comments