Thursday, October 23, 2014

Asperger's and Picking the Right College

2014 was a bitch of a year.

Excuse my language, but man, that year put my son, myself, and my husband through the ringer.  Like many other kids, my son started getting seizures at the age of 17, and then had to deal with adjusting to anti-seizure medication.  Anti-seizure medications, for want of a better explanation, MAKE YOU STUPID.  Right when you are preparing for college, submitting your grades to colleges, writing your essays for college, and taking your college entrance exams -- these poor kids have to do this while taking a medication that purposefully DECREASES the brain's ability to trade synapses.  It's incredibly cruel punishment for a time when you need to be at the top of your game.

So, we did what a lot of other parents with kids who have cognitive or physical challenges do -- we bought and read the book "Colleges that Change Lives."  We spent the summer visiting many of these schools.  We tried to get a "feel" for each college, through interviews, walking across campus, and reading their class offerings.  We visited dorms, and read info on the internet, and just generally managed a cram session to make a choice of the appropriate college.  Many colleges may have been good choices, but finally my son decided on Earlham College in Richmond, Indiana.

This is a college that is smaller in numbers than a lot of U.S. high schools.  The downside of this school is that Richmond, Indiana is a small town with supposedly little to do.  Another downside is that Earlham's size makes it so that you get to know everybody, and you may tire of everybody after a short amount of time.  Maybe classes aren't offered as often as they should be, when compared to constant and consistent offerings of other, much larger, schools.  But, from what I can tell, the negatives, for the most part, stop there.

Like many of you, I have a son who has been a kind, funny, smart and good young man who has had problems socializing.  I don't know how many times I have been at home with him on the weekends, knowing that he should be out with friends getting into trouble.  Well, now he's at college, not getting into trouble but consistently socializing.  Even when his roommate moved out (they were a bad mix from the very beginning, even though the kid was a good kid), my son managed to figure out how to get out and do things with people.  He has CONSISTENT and REGULAR activities with a group of friends.  This is a HUGE blessing.  I almost don't care about his grades (notice I said "almost").

Rarely do I feel like choices made are clear and obvious.  The choice of a college has such a variety of factors that it's almost impossible to make a choice without second-guessing.  There is just something about this college, with it's emphasis on collaboration rather than competition, that seems to be so healthy for kids who need a slightly more understanding environment.  There's something about the high percentage of international students that really makes the rest of the student body open to differences of ALL kinds.  Currently, my son's friends come from Pakistan, Bangladesh, China, and a few from the U.S.  It's an incredible high for me to message him and receive a text back that says "sorry, can't talk right now, watching tv in a friend's dorm room with a bunch of people."

I've never been so happy to be ignored.

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Monday, December 02, 2013

Aspergers, Inattentive ADD …. and now Epilepsy

I'm writing today, because I just don't know where else to go.  I figure that anybody who actually reads this blog, though I am limited at writing posts, will have enough experience with adversity that they understand what I'm talking about.

My son had a seizure about six months ago.  We thought it was a one-off situation, due to a new medication he was taking that often lowers the seizure threshold for people.  We picked him up from his high school, where he was dazed, somewhat incoherent, and had blood all over his shirt from biting his tongue.  We drove him to the local hospital, where they did an EKG but that was pretty much it.  After a couple hours, our son was back to his regular self, and we thought nothing of it.

Until the first week in November of this year.  He had another seizure, but this time it was worse.  It lasted longer, his incoherent-state lasted longer, and we figured that he would do well to be checked out more appropriately at the hospital.  They did an MRI, and found nothing, but they kept him there in the hospital overnight for observation.  He was incredibly sleepy that day and the next.  The next day the hospital staff did an EEG, and found brain wave spikes consistent with epilepsy.  He had had a tonic-clonic seizure, his newly-obtained license would have to be taken away until he is seizure-free for six months, and he now has to take anti-seizure medication.

It took days for my son to get over the sleepiness.  His cognitive ability was shot.  It wasn't great before this -- none of his ADD medications have been working -- and now, everything he does takes three times as long as a typical person.  Homework is a nightmare.  His grades are falling.  His hopes for college are quickly dwindling.

I just can't kick-start any of my positive thinking anymore.  I think I'm just worn out.

I don't see how we can climb our way out of this hole.  I'm out of ideas.  My son is amazingly upbeat, in spite of all of this, but even he is depressed that he can no longer drive.  His first question in the hospital was "will this affect me academically?"  Well, so far, the answer is a decided YES.  I have no idea what to do for him.  Hell, I have no idea what to do for me.

The ONLY thing I can think of to do is something I've been avoiding ever since his autism diagnosis.  We very briefly tried the GFCF diet when my son was five, but since he showed no sign of gastrointestinal distress, and we couldn't see any difference in him when we tried the diet, we gave up rather quickly.  To tell you the truth, I kind of thought the GFCF diet was for whackos … people who were grasping at straws to find anything to try and improve their child on the spectrum, even if it didn't make any sense.  Well, now, I'm one of those whackos … because NOW, I'm reading study after study after study about how food intolerances can adversely affect epilepsy, and I'm thinking it's time to bite the bullet and do a combination of the Gluten-free, Modified Atkins Diet, in an attempt to improve my son's outlook.  Quite frankly, I have no other option, because everything I've been reading in the last three weeks doesn't give me a lot of hope.

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Monday, September 09, 2013

Aspergers and College Interviews

Yesterday my son had a college interview.  This is kind of a big deal for a number of reasons:

1) Neither of my two other kids have ever had to do a college interview.  Ironic, since they are supposedly "typical" and would probably do fine in a college interview.
2) If any of you out there have a kid on the spectrum, you know that having a 30 minute conversation with a stranger isn't exactly something that comes naturally to them.

We are fairly sure that this is the college my son wants to attend.  It's somewhat selective, and his test scores currently are average, while his grades for this particular school are pretty good.  We've visited the school, toured the school, and actually have had an interview at the school.  This interview, though, was carried on at a local Starbucks while the admission counselor was visiting our area.

Here's my advice about the situation:

Make absolutely sure, by Google Maps or otherwise, that you know the location of the interview.  We did not, and Google maps was confused as to where this Starbucks was as well.  We drove our son to the interview, and made him ten minutes late.  In this case, it was not a big deal, since nobody else was scheduled to interview that day.

Practice, practice, practice.  We got online and checked out as many "College Interview Question" websites as we could find.  We went over and over the possible questions, all the while telling our son that the interviewer may not ask any or all of these questions.  I'm sure that our son answered some of these questions in odd or unusual ways, but like my hubby said -- that's just typical 17 year old boy.

The other thing we did -- we prepared him by asking really weird questions, to get him to try thinking quickly and on his feet, so to speak.  Ever realize how little you are asked off-the-wall questions?  Well, in an interview, an off-the-wall question might be exactly what the interviewer does to see how well a student responds to uncomfortable situations.  It's a good thing we did this.  My son was asked "How do you think your teachers would describe you?"  I was so happy to hear that he responded "Wow, I've never really thought about that question. [great stalling technique, I thought...] I think they would describe me as funny!"  Many people would think that saying "My teachers would describe me as intellectual, smart, hardworking" etc. would be the right answer, but no -- those are kiss-up-to-the-interviewer answers.  Something that is genuine is much better here.

I researched, and apparently khaki pants, button down shirt, belts that match your shoes, and a tie (or not) are good things to wear to a college interview.  Arrive on time, shake your interviewer's hand, and after sitting down, when spoken to, smile and lean in to the interviewer's side of the table

The interview was conducted outside the Starbucks, where their discussion wouldn't be too much of a distraction for others.  As the parents, we sat on the inside of the Starbucks, facing the interviewer and my son just outside the window, which made for quite the view of what was going on.  I tried not to watch too much, but from what I could see, there was much laughing and smiling and general fun going on.  My son really lucked out and got a wonderful admissions counselor, who was probably only four or five years older than him.  She was incredibly engaging, and made the interview an enjoyable process.

Because of the youth and slight inexperience of my son's admissions counselor, she was unaware of what an I.E.P is.  Once she understood that my son was interested in how this particular college would support students with "disabilities" she was able to answer his questions.  She also had a five or ten minute discussion with us as his parents so that we too could ask questions.

Five years ago, if you had asked me if I would have thought this particular situation would have gone this well, I would have probably said "no."  It's a real gift to be able to watch the process a little, and see what a good job my son did.  Now it's time to keep our finger's crossed, and after my son applies to the school, wait and see if he gets in!

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Friday, August 09, 2013

Aspergers and Happiness

I had a great breakfast today with two friends who live on my street.

One friend has a son, five years older than mine, who is on the spectrum.  The other friend has a son in my son's grade in high school, and although he is not diagnosed, he has many, if not all, of the same issues that my son has.

We were talking about our sons' lack of need for friends.  Here it is, summer time, and we watch our other children socializing and doing stuff and out of the house all of the time.  Then we look at our sons who are at home, wondering why they don't feel the need to get out and be with people.  We wonder why they are fine with staying at home, and all the socialization they need is a good game on Xbox.

Thing is, THEY ARE HAPPY.  We may not be -- we may be concerned that they don't leave the house, that they aren't going out to eat or hang out with friends.  This bothers us, as their parents.  We just can't relate to it.  But if we are concerned with our sons, it has more to do with OUR needs and less to do with our son's needs.

I guess I would love to see my son run off to college in a year, into a sea of guys and girls just like him. I would LOVE that.  I would love to see him comfortable, and with people who like to do the same things that he likes to do.  I would LOVE to see him interacting and feeling part of a group.

My son, though?  What does he want?  He's actually pretty happy with the way things are.  He's always happy.  He's always content.  I guess he just doesn't need that much.  Sure, he would like to have people to interact with -- but it's not a NEED like it is with other people not on the spectrum.

Once, we sent my son to a church camp for four days, held at a local college.  He was going to room with people he didn't know, and he was going be doing all sorts of stuff that he had never done before (dances, classes that he chose to attend, etc.).  I was nervous, but I wanted him to try this experience so that he could see what college was like.  He texted me that first night, telling me about all the shenanigans that he and his fellow campers were getting up to.  He never did go to a dance, but he had a great time playing board games with a bunch of kids.  He was walking to and from classes when it was raining, with an umbrella, and had girls walk with him to stay dry.  After a few days, he texted me "So this is what you've been telling me is so great about college!!!!"   Yeah, that was a great day FOR ME.

He hasn't socialized very much since then.  That was a year ago.  But that doesn't mean he isn't capable of having this same experience again.  It will just be on his time, on his schedule.  It won't be my kind of social experience, but it will work for HIM.

I finally realized, this year, that it isn't about my kind of social life -- because that's probably not ever going to work for my son.  He can't take the noise, he doesn't understand the conversational mores, and he doesn't have the burning need to BE WITH PEOPLE.  But if he can go to college and find some like-minded people to goof off with for a few years, well, I'll be a happy mother.

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Tuesday, August 06, 2013

social skills help at

My daughter, who is 22 yrs., is home for the summer between finishing her undergrad degree and going off this fall for her grad degree.  She was teaching my son's age group at our church this last weekend.  In the process of asking her how that went, and what the kids were like, etc., I asked how her brother acted in class.

She said "He is really overly-opinionated, and when he spouts his opinions, with little or nothing backing them up, everybody else rolls their eyes at him."

Ever seen this happen with your kid?  Have you ever done this yourself?

Often, I think that my son is actually doing better than he really is, socially.  I think it's my way of putting my head in the sand -- if I'm not observing it directly, then he must be doing fine.  But I know that he is overly opinionated -- especially about politics -- and if people on the spectrum are about 3 years behind socially than their peers, then this kind of lack of social skills makes my son (and others) look childish and borish.  I can say this, because I'm pretty sure I have done the same thing in my life -- except I was probably older and should have known better.

So tonight, we had a big talk as a family about NOT spouting opinions, especially when you don't have facts to back up that opinion.  We talked about declarative statements, and how they lead to arguments. We talked about how couching your opinion in ways that are not aggressive lends itself to constructive conversation, and doesn't make people think you're stupid, and doesn't make the person you're conversing with feel attacked.  I tried to make it clear to my son that I try REALLY HARD to not open my mouth about things like politics unless I've read a lot on the subject, and watched the news, and looked up words or policies that I don't understand [which is often!].  My daughter and I role-played back and forth to show my son the difference between spouting unfounded opinions, and people's response to this -- and couching your opinions in language that is conversational and shows that you're open to learning new things from others, allowing a free-flow of ideas and improving relationships with people of differing opinions.  I tried to make him understand that if he is quiet, and waits to talk until he has something legitimate to say, backed up by numerous FACTS from a good source (newspaper, magazine, news program, etc.), people will take him seriously and may even come to respect him.

Tonight I was online looking for possible resources for this type of social problem, and I came across this website:

This is a site that has numerous articles on social skills subjects, written by a guy who used to be shy and socially awkward.  He has a background in psychology and counseling, but he says he's no authority on the subject -- he's just observed people a lot, and has improved by making sense of these observations -- and wanted to pass what he has learned on to other people.

I'm going to read these articles, and have my son try reading them as well, to see if it helps him to makes sense of some of his social skills that still need fine-tuning.  I have a funny feeling that many of the articles will deal with issues that came up tonight with my son and his "opinion" problems.

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Tuesday, July 30, 2013

How to use extended time on the ACT

I was shocked and surprised to realize that my son did indeed get extended time on the ACT!

After we sent in a huge box of an documents that could support the fact that he currently gets extended time on tests (and more importantly, NEEDS extended time on tests) -- including a copy of EVERY SINGLE IEP for every year since kindergarten, I called the ACT board to inquire about my son's extended time. I was fully intending to give somebody a piece of my mind about the fact that he wasn't currently approved for extended time.

THAT'S when I realized that, as I was looking at his most recent admission ticket from the ACT, up in the upper right-hand corner in small type was written "extended time."  I realized this just as I was hearing from the person on the other end of the phone that, yes, my son was receiving accommodations.  She could probably hear the "click, click" sound of the wheels in my head finally registering that, uh, duh, yeah -- we got what we wanted from the ACT board.  I said to her "well, I guess this phone call was totally unnecessary then, eh?" and she kindly laughed...

I was REALLY jazzed.  So sending in all of that documentation honestly WORKED???

Then, my son took the test.  Argh.  Not exactly a successful situation -- but one that can be dealt with.

The problem is that, yes, you get 50% MORE time than the regular population when you receive extended time.  I tried very hard to get information online to see how this 50% time worked.  With the regular population, this is how things work:

English section - 45 minutes - 75 questions
Math section - 60 minutes - 60 questions
Reading section - 35 minutes -- Four ten-question passages
Science section - 35 minutes - 40 questions

For the regular population, a test-moniter tells the students at the end of each section that it is over, and that they should put down their pencil.

THIS DOES NOT HAPPEN FOR EXTENDED TIME.  The extended time population has a total of over 4-1/2 hours to take the test, but it's up to THEM to figure out how much time to spend on each section.  I had mistakenly suggested that my son do the English section for maybe an hour, and then go on to the next section, etc.,  and then at close to the end of the test COME BACK TO each section to finish whatever questions were left.  I looked and looked online to see if anything talked about the structure of the test when extended time is given, and there was NOTHING.

As it turned out, my son couldn't go back to sections that were unfinished.  He knew that at the beginning of the test, so he just tried to finish each section.  That meant that he spent too much time on sections (Reading) that he couldn't do well, and by the time he got to the science section (where he would have excelled) he only got a few questions answered before he ran out of time.

So, what this teaches us is that in preparation for the next try at the ACT, we need to have my son take multiple trial tests in advance, to see how long he usually takes for each section.  Then, we need to have him get used to timing himself, and limiting himself to only spending a certain amount of time on each section.  It's very important that he has enough time for the sections that he does well in (math and science) and not spend too much time on the section where he will have problems (reading).

I was taken by surprise that the extended time population is given the least structure while taking the ACT.  Initially this bothered me.  These are the very students who need MORE structure, not LESS.  But, after thinking about it, I realized that it allows for the opportunity to spend more time on areas where a student can excel, and spend less time on the areas that a student struggles with -- therefore manipulating the test a little bit so that students can increase their chances.

I'll let you know how the next test worked in October.

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Sunday, March 17, 2013

Aspergers and Extended Time on ACT or SAT

If you are a parent of a student with autism or aspergers, a student with a learning disability of any kind, and/or a student with ADD, APPLY FOR EXTENDED TIME FOR THE ACT IN SOPHOMORE YEAR!!!

We are learning this the hard way.

Our son's high school advisor did all the necessary work to apply for extended time for his SAT test.  All I had to do was sign the thing.  Viola, a few weeks later, he received extended time, as he should have.  I thought this was just the way things were done.

Having heard that the ACT was a better test for kids with math/science interests, I began the application process for extended time on that test.  There was a lot more involved in the application process.  I provided a copy of his diagnosis from when he was four years old, as well as other documentation.  I sent the application back to our son's advisor/counselor for her to sign, and she sent the application on it's way to the ACT people.

This weekend, we got the rejection letter.

Apparently, over recent years, it has been the practice of wealthy parents to get a neuropsych exam done on their children to prove that their child has ADD, therefore receiving extended time on the ACT.  They then get the extra time WHEN THEY DON'T ACTUALLY NEED IT.

I had no idea, until now, that this was even a problem.

I've been doing a lot of research online about other people who have run into this problem (and apparently there are A LOT of us out there), and from what I can see, this is what we need to appeal the rejection of extended time on the ACT:

1.  A neuropsych evaluation -- with data that proves the student has a disability that affects their ability to do standardized tests in a timely manner
2.  Reports from their teachers specifically stating that the student actually USES extended time for tests -- preferably within the past year.
3.  Report from a special ed/resource teacher that verifies that the student needs extended time on standardized tests
4.  Possibly sending in something like a PSAT where the student DID NOT have extended time, showing a lower-than-average result (we have this).
5.  IEP's from elementary school and throughout the years proving a long-standing disability
6.  Diagnostic testing
7.  Basically, proof has to be made that there is daily impairment:

Under the ADA model, to get accommodation a student must demonstrate how his/her daily academic functioning is impaired. This is the new gold standard: evidence of functional impairment. According to the ADA, what may be a relative weakness may not indicate a true disability. Under this new ADA model, requests for accommodation for attention deficit disorders and many other types of disabilities are being denied left and right.  (

From what I can tell, the most important thing is to be able to prove that your son or daughter has needed extended time on tests WITHIN THE LAST 12 MONTHS prior to taking the ACT.

This should be a warning call to any parents who are thinking that they should avoid special accommodations for standardized tests for their children.  You need those special accommodations, because without proof of using them, the ACT testing people can deny your child access to extended time on their test.

It would appear that denying extended time on the first application is standard.  Then, even with appeals, it seems that THREE APPEALS is the average needed to receive the accommodations for your student.  UGH.  There is the temptation to give up on this, which is exactly what the ACT people are hoping for.  My reasoning for NOT giving up, at least for now, is:

1)  This just bugs me.  I cannot believe that I am having to PROVE that my son has a disability, and that with all of his struggles, we have to FIGHT to get extended time on a college entrance exam, when he has already received extended time on a similar college entrance exam.
2)  The ACT has a history of being better at measuring math/science proclivities.  I have also read that this test may more accurately measure things students have been learning more recently in their high school experience.  Also, I thought that I have read that the ACT just seems to produce a better result for LD kids.
3)  If my son's ACT score is better than his SAT score (which is pretty average, or lower than average), then we can just submit that score instead of his SAT score.

I am really hoping that by writing this post, I can save some other people the trouble of finding out what is needed for an ACT extended time approval too late.  

The moral of this story is DON'T WAIT to apply for extended time.  Make your application during sophomore year, and document LIKE CRAZY the multiple situations in which your child has needed/used extended time for their standardized, and their regular, tests.

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