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.

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.

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.