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 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!

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.

social skills help at sociallysucceeding.com

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:

http://www.succeedsocially.com/index

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.

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.

Dishonesty and Asperger's

The latest issue that we have ...

You all have heard that kids on the spectrum can't lie, right?

Well, today's post wants to kick that concept's butt.

Our son has been lying for YEARS.  He doesn't do it to get stuff, or bug us, or much of the typical reasons teenagers lie.  But, in one of the typical teenager ways, he lies to get out of doing homework.  He says he has done it when he hasn't.  He says he doesn't have tests at school that week when he actually does.  Last night, he wrote down the answers from the back of the math book, but DIDN'T show his work -- an obvious ploy to get out of doing the work.

Thing is, he's really good at lying.  He's such a good kid in every other way, that when he does lie, it's like a smack to the face.  A punch in the gut.  A real downer.

This boy is a people-pleaser.  He really wants to make his parents, teachers, and other authority figures happy.  When he lies, he sees it as a means to an end -- make everybody happy.

Trouble is, it never, NEVER works out that way.  Parents now have access to online gradebooks, and if you have to be as fanatical as I do to try and catch the huge variety of ways that my son can slip up, you know when your son is lying.

Last year, when the meds were working phenomenally well, there was a lot less lying.  The meds were working, and the school load was good.  Nothing seemed insurmountable.  THIS YEAR, however, there has been a trial of a new honors class, and that is proving to be difficult... thus, the lying.  Trouble is, he's also lying about the other classes that are NOT difficult.

I am mystified that, when my dear son is caught in a lie, he is so surprised.  He gets very emotional, and I of course get very angry... but no matter how many times we have a big drawn out fight over lying, he continues to do it.  I have tried yelling, I have tried being very controlled and philosophical.  I've tried every different approach there is.  I've especially tried to explain to him that lying isn't even effective -- it doesn't give him the peace he is hoping for.  Thing is, if my son lies, I CAN'T HELP HIM.  You kind of need a baseline of honesty to be able to deal with problems, and if that baseline isn't there, you really can't do anything to improve the situation until the lack of honesty is dealt with.  I try to explain to my son that we can deal with problems he has in math, as long as he tells us WHAT IS GOING ON.  When he hides stuff, we are basically hand-cuffed.

Currently, I have no recommendations or positive experience about how we managed to get our son to stop lying.  It's unfortunate that he is lying AND his meds currently aren't working -- a perfect storm situation that leads to a bad beginning to the semester.  I will, however, talk with his therapist about the situation and see what HER take is on the subject, and write about it in my next post.

Mothers' Depression when dealing with Asperger's children

I always wanted to write really positive things for this blog -- I figured that as parents of children with Asperger's syndrome, we read and experience enough of the negative that reading instead about happy experiences and good "stuff" to try would be more beneficial to any readers who might be out there.

But, as the primary caregivers (this could include stay-at-home fathers as well), mothers by and large experience some real heavy-duty depression when dealing with their children on the spectrum. Don't get me wrong -- there are days when the sun shines, and your kid seems more social, and you truly LOVE watching their amazing ability to do math/music/write/sing/or just look at any subject in a truly different and incredible way. Most of the time, I'm on the positive upswing.

Then there are the other days. Usually the depressive episodes don't last too horribly long. Many times, they are not directly related to my son, but rather how others "perceive" my son. Tack onto that, my PERCEPTIONS of how others "perceive" my son (and yes, I do take things incredibly personally) and you have a real recipe for a full-blown depression.

It seems as if, about every six months, something "hits" me and I feel as if I'm receiving my son's diagnosis all over again, as if it's the first time. Most days, I think he's doing really well, and I don't worry too much. But once every six months, something occurs where I really feel that nothing is ever going to change, that it will never get any better. I realize that there is no comparison between my son and my other two children. For example, a milestone for a teenager and his parents is when they turn 16. We had small "sweet 16" parties for my other two children -- nothing big or fancy, just a get together with a very few friends their age. I think my depression this time is preparing for this milestone for my last child, and realizing there will be no get-together for him. My daughter advised against it -- she recommended that I not "push it" for him, that I not make him do anything he would be uncomfortable with. She is right. It would be uncomfortable for him -- and it would be more for ME, not for him.

I've already come to grips with the fact that he won't be dating anytime soon, that he won't go to a prom, that he won't be on any sports team, and that he won't be inviting a bunch of friends over every weekend. I'm ok with all that. What I would literally KILL for, though, is just to have any friend over. To hear the phone ring for him, to be invited to somebody's house. Just once. Or, if that cannot happen right away, to hang onto the hope that he can get into a college where there are other nerdy aspie kids, or just plain nerdy kids, and that they can all hang out together and play video games and eat pizza. I would be so happy if that could happen.

But, every six months, I start to believe that WON'T happen. I get in a funk, and I don't know how to get out. I get mad at my husband -- who is a great father -- because he doesn't have to experience this. He gets to go to work, he gets to interact with smart, interesting people. My social life diminishes, and sometimes it's a direct result of my son's lack of social skills, because there are few people who "get" him, and can tolerate his differences. I used to be EXTREMELY social, and now -- I don't even want to be around people anymore.

I searched the internet to see if anybody else is feeling this way. There doesn't seem to be a lot of research or information on the subject of mothers and their depression when dealing with kids on the spectrum. [There probably is, but I think I was too depressed to stick with my search for very long. Actually, I just checked, and there's tons of info.] I did, however, find one letter that touched me, in that it was identical to what I was going through. The mother had just lost her parents (as I have, a year or so ago) and they were the ones who truly understood and loved her son. Without them, she felt lost. And as her son was reaching adulthood, she was realizing that things were not going to improve. That is how I have been feeling.

The thing is, there ARE improvements. It's just that we can't see them so much, because we are too close, and in my case I compare way too much to the kids that we see at church or at school. What's truly going on is that I'm NOT seeing the other nerdy kids at school, who have asperger's or not, who are having just as rough a time socially as my son is. I'm only seeing my little microcosm of a world, and currently I'm only seeing it in a bad light. Also, when I'm going through these depressions, I tend to discount the improvements that have happened over the years. Something that also feeds this depression is the incredible knowledge that I have it EASY, that there's another adult in the house who can take over [how do single mothers/fathers do this???] The knowledge that a child who has low-functioning autism is a lot more exhausting physically. The knowledge that there are others out there who are going through a hell of a lot more than I am... then I get depressed that I'm stupid enough to think that I have problems.

So -- the reason for this post today: If you're feeling depressed, and feeling like things are never going to get better, I hear you. You're not crazy, you're tired. You feel defeated. You can't see the forest for the trees. In our situation, that's probably NORMAL. There are a ton of us out there who are feeling exactly like you, and it would be awesome if we could only find each other, so that when one of us is down, the others could rally around in support. Also, if my son ever reads this, and I hope he doesn't -- none of this is YOUR FAULT. You are the best thing in the world. This is MY PROBLEM, and I need to figure it out.