Why S L O W is also GOOD

When my son was preparing for college, we were all excited about the possibilities. 

I wasn't overly concerned about his ability to take care of himself. He could do his own laundry, he could cook, he knew how to tip the pizza delivery person. So, partially because he seemed fairly self-sufficient, I felt like he could handle life at college. This is partially because I wanted to feel that way. I wanted to see him succeed, but I also wanted to feel as if he was just like any other kid going off to college. I wanted him to have a great time, and enjoy meeting new people, and learn a variety of things from a bunch of different classes. Most of all, I wanted him to enjoy that feeling of being in charge of your own life.

Well, if you read my post from yesterday, you know that he wasn't ready for college.

His therapist tried to tell me this. She really did. She tried to suggest that maybe taking a year off from college might be a good idea. Whenever she suggested this idea, all I could see was my son having an entire year of not socializing. No interaction with other people his age, doing fun things. Honestly, I was blinded by the thought of this lack of interaction. I was afraid it would halt his progression.

My son's therapist also suggested the idea of community college. I also ignored this idea. I had recently taken a class at our local community college, and I wasn't all that impressed with the other participants of the class. They may have been smart kids, but they weren't social with each other. Nobody talked to each other, in a class of at least 20 students. It seemed weird to me. Of course, I didn't stop to think that it was a class on Macroeconomics, and maybe that wasn't the most social of subjects. So, based on that very limited experience, I considered community college for my son -- and tossed that idea rather quickly.

Now, three years later, I can see that my son's therapist had more experience than I had, and she knew what I didn't understand -- that people with ADD or autism or any other myriad types of learning issues often need to take a little longer to mature. This extended maturity window applies to many college students, not just my son. I talked with my other two kids, and they had lots of peers who took five or six years to finish their bachelor's degree. It's common, and we as parents need to take a step back and realize that maybe it's preferable to take longer to accomplish some goals.

I have one friend who has a son who is just now finishing his bachelor's ... and he's 30. He had several missteps along the way, but once it was HIS DECISION to go back to college, he nailed it. He was able to get much better grades, and he was able to figure out exactly what he wanted to do. It's hard to hear that concept, that sometimes people need a decade to figure out life ... but isn't that better, to take a long time, than to never figure things out at all?

So, my husband and I watch our son, and we see progression. He won't have his associates until he's maybe 22 ... but it's PROGRESS. He looks happy. He's going to community college, and it's a good one, and he's made friends. Ya know what? There are LOTS of guys just like him, almost identical to him, at his school. He watches those students, and notices that some do better than he does, but a lot of them are struggling. He also notices that his professors "get" him there, and they are helpful. He is also, now, figuring out what his direction may be, what he enjoys, and that times when he fails on a test are followed by times that he gets one of the highest scores in the class. You just never know what a person can accomplish ... and it may not be the path you expected or wanted for your son or daughter. But if they can just keep working, and slowly making progress, that's a beautiful thing.

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.

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.

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.

Mothers exhaustion and Aspergers

I've been spending some time reading the comments section to the post I wrote about mothers and depression when dealing with Aspergers.  I marvel at what we mothers deal with, and the fortitude that is required to keep doing the work that we must do to support our children.

I have a funny feeling that if we were able to get a group of women together who have children on the spectrum, we would all look very tired.  We might look ten years older than our peers of the same age.  We might not be as stylishly dressed as others -- because our spare income goes for therapy, or social skills classes, or even just for nice clothes for our children to make up for their lack of social skills.  We don't have time to be stylishly dressed, or to wear much makeup.  We have a job to do.  A job that others never even have to worry about.

Only another mother of a child on the spectrum understands that you spend almost EVERY WAKING HOUR wondering what you could be doing to improve your child's chances.  Every waking hour is spent reading books about autism or aspergers.  Every waking hour is spent dealing with teachers or therapists or psych people of many persuasions.  As the children age, every waking hour is spent checking their grades, checking teacher's websites, making sure that you catch the fact that the child has forgotten a test, forgotten a paper, forgotten a project.  Every waking hour is spent feeling a sort of pervasive sadness that your child isn't asked to a party, that your child isn't involved in a sports team, that your child doesn't even think to invite a friend over.

It gets pretty overwhelming, doesn't it?

Trouble is, this isn't helpful.  Sure, reading the books helps, because you need to understand the situation you're in.  BUT, after a while, you learn that you can't physically take in any more information.  You've become saturated on the topic of autism, and you shouldn't take in any more data or your head will explode.  YOU MUST READ OTHER BOOKS THAT BRING YOU HAPPINESS.

Sometimes we go to support groups, to hear from others which school is the best school, what is the best program, who is the right "expert" to see in the hopes of learning something new.  As great as these support groups are, again, one becomes saturated with all things autistic.  YOU MUST MAKE OTHER FRIENDS UNRELATED TO AUTISM.  It is frustrating, because sometimes these friends don't understand what you're going through.  But the very fact that they don't deal with what you deal with on an daily basis can be liberating.  You'll find that all of us have our difficulties with life -- and though we don't have the same difficulties, we still all have to find a way to get through the hard times and come out the other side in tact.  Friends outside of autism are helpful -- going to dinner or lunch with them provides laughter, and a chance to see how the other side lives.

Do you ever look at your child and think "if only we didn't have to bother with school, we could all be happy"?  I think this a lot.  When taken out of the school context, I really adore my son.  He has so many wonderful qualities.  He's funny, he's charming, he's more sensitive to my needs than my other children.  He's good looking, he's beautiful, he's easy to be around.  Yes, sometimes we don't get his jokes completely because he thinks we can read his mind -- that's ok, when the situation is separated from other people.  Eventually he'll explain his joke, and ya know what?  It's pretty dang funny.

SCHOOL IS TEMPORARY.  Eventually, your child will be out of school.  Yes, real life has it's pressures as well, but social pressures will never be as hard as they are in school.  I've come to realize that at some point, my son will either have a life of his own, or he will be with us permanently -- and either way, life will become routine and will calm down.  It may even be enjoyable.  There will be future happiness there.  Let's repeat that.  THERE WILL BE FUTURE HAPPINESS THERE.  It may not be what I had hoped for, or even what I think my son is possibly capable of -- but eventually, we won't have to work as hard, and eventually, the routine and the calmness of regular life will be a sort of happiness.

THAT'S what we are all working toward.  Let's not be so hard on ourselves.  We parents deserve a break.