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.