Much has changed in the many years since I wrote that last post about my son's experience at Earlham college. What I'm going to write today will reflect what often happens with people on the spectrum when they attend college.

Like most families, our son -- and we as his parents -- were excited about the college experience, and Earlham seemed like an ideal choice in many ways. It was a beautiful campus, full of truly accepting and kind students. To this day I still have a very soft spot for Earlham College and it's student body.

Our son was there for two full years. He did well the first semester. He had access to many social activities, and seemed to have a handle on the academic side as well. But the second semester showed a dive in grades, even with my attempts to help with scheduling, etc. from far away. He returned for another year, but could not keep up with the expectations, and also seemed to really find it hard to socialize. He was somewhat depressed because he could not manage the social requirements of keeping up with people, texting, interacting on a regular basis, etc.

We also realized that his meds were not working very well. Late into the fourth semester, he began taking regular Ritalin four times a day ... and things improved but not enough and too late.

So, our son came home, and immediately got a job. He then enrolled in a nearby community college. He again did poorly. Then, a miracle happened -- but at the time, it didn't seem like a miracle. Our son forgot (ADHD much?) to refill his epilepsy medication. I had shifted the responsibility for his meds to him, instead of having me do it -- it was time for him to take control of the medical side of life, and he had previously been very good about keeping tabs on and taking his epilepsy and ADHD meds. But, at this point, when he finally told me that he had forgotten to refill his meds ... it had been two months. That medication was completely out of his system. Restarting the med would be catastrophic ... the first time he began taking it, his cognition was horrible, his sleep was horrible, and he was depressed. Many of these things shifted over time, but it took six months to adapt, and I still observed fairly negative effects from that med. 

As a family, our son and my husband and I came to the conclusion that he should just not take this med. That would seem to be a reckless idea ... but he had only had two seizures EVER. Once you have a second seizure, neurologists automatically slap the "epilepsy" label onto you and give you medications, often regardless of how those meds impact your life. To be fair, having medications take care of debilitating epileptic seizures is the most important thing. And yet, people like my son, who have only had two seizures and immediately were helped by the first medication they ever tried are somewhat unusual. Then, by going off of the medication for two months and having NO NEGATIVE SYMPTOMS, our son's experience seemed to lean towards being a very atypical case. It has now been 1-1/12 years off of the medication, with no seizures and no adverse effects. We make sure that he gets lots of sleep and try to keep the stress level low -- we are guessing that a lack of sleep and lots of stress may have triggered his two seizures many years ago.

Once off of this medication, his next semester was amazing. He got the highest score in his class for pre-calculus. The next semester, he took a Calculus class -- a six-week summer course -- and got a high B. All of his other grades were high B average grades, all while working part time. I help with scheduling, but even that chore is being passed toward him. As parents, we are available to discuss how long an assignment will take, and how to chunk the assignment into smaller amounts to make it easier to accomplish. We are here to brainstorm ideas for essays, etc. But our son is doing the work. He has decided to complete his associates in Mathematics -- an associates degree will make his credits all transfer to another university (rather than worrying about that university picking and choosing which credits they will accept). He will most probably finish his associates degree in a year.

We are taking these sorts of choices one step at a time, but I am learning a lot of things as a parent. I've learned that those two years away from home were still a success. There was a lot of social learning accomplished during that time, and there are still friends who contact my son as a result. I've learned that community college is a wonderful thing. I've learned that accomplishing a degree slowly is just fine. I've also learned that my son just needs more time for all sorts of things, and providing that time results in small accomplishments that will ultimately add to big accomplishments.

And I cannot tell you how many times I have spoken to other parents who have been through exactly that same trajectory with their son or daughter.

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.

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.

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.  (http://www.applerouth.com/blog/2006/04/27/extended-time-and-other-accommodations-on-the-sat-and-act/)

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.

Let's throw Inattentive ADD into the mix!

I just checked -- and the last time I blogged was a year ago.

This is because this year was my son's most difficult in a long time. It was hard on him, and equally hard on us.

We had the "perfect storm" of the following -- expectations raised in 8th grade, a LOT more homework, and the fact that all of the many ADD medications we've tried this year are not working. It has been an incredibly stressful time, and therefore, no posts.

The odd thing is -- the Asperger's element of this is relatively OK. My son has been doing fairly well socially. He's grown, he's matured a little, and he isn't so tied to computer and video games. This is definitely a step in the right direction.

The trouble, from what I can see, is that he has Inattentive ADD, or ADHD-Primarily Inattentive, or ADHD-PI, or ADHD-I, or whatever they call it. But it's the COMPLETE OPPOSITE to typical ADHD. These children (and adults) are daydreamers, they cannot focus (the one thing that is like ADHD), they are NOT hyperactive, in fact they are much more likely to be quiet and inactive. Sometimes this is juxtaposed with something else called Sluggish Cognitive Tempo. But basically from my research it all seems to mean the same thing -- someone with these type of ADHD cannot pay attention to anything that holds no interest for them. They are GREAT at whatever they are good at or interested in (in my son's case, math and languages) but just cannot keep it together for any subjects that they are NOT interested in.

We've been in and out of the doctor's office more times than I can count, trying new meds this year -- and none of them have helped. Maybe initially, even for a few weeks, but after that, nothing. It's been SO frustrating! What is also frustrating is that I am finding out that the psychiatric world isn't so quick to legitimize "inattentive ADD". Also, there is little to no help online. I get the feeling that the current feeling is that, yes, this could be a subset of ADD, and yes, it does prove to be a little different than your typical ADD -- but there's nothing much anyone can do for it. There's also very little research being done on it.

So this is my "new" task -- to figure out whatever is the problem with inattentive ADD, figure out who is out there writing about it or helping kids with it -- and if there's no one out there who's an expert, then I'm going to have to dissect this whole thing myself and figure out where to go from here. I sure wish I had a medical degree now...