What Would You Do?

Alright, time for a tough one.  Not that any of it is easy but this is a dilemma.  Something that weighs heavily on me but is frankly a medical and ethical minefield so it's one of my many, "can't go there" subjects.  Josh will be 12 in just a few short months though, so it's time to deal with it.

I'm talking about puberty. 

Josh is very small for his age as is his brother.  At nearly 12, he is about the size of a 6 year old.  I watch him going in to school every morning, sweetly holding the hand of his aide, wearing his Blue's Clues back-pack, and it is very hard to believe he is a 5th grader let alone headed to middle school in the Fall.  There are a few check-out ladies at one of the grocery stores we go to that know us pretty well, we've been shopping there semi-regularly for almost 10 years now.  Yet they will still ask me every now and then when Josh will be starting school... they are and always have been very nice to us there, especially back in the days when Josh was very difficult in public, so I am always polite when I answer that he is already in school, and I leave out the part about the fact that he has been for almost 9 years already.  But you get the point here, he is small and under-developed enough that he does not appear anywhere close to his chronological age.  Matches his developmental and behavioral levels as well as they are more consistent with a smart toddler in most respects. 

While this is challenging on many levels, it works well on others.  Because he is so dependent on me/ an adult for help with just about everything, his size and lack of development make that relatively easy.  I give him a bath and it is not much different than when he was 3 or 4.  I help him on the toilet, clean him up, again, not much different than when he was actually, a toddler.  I get him dressed, carry him up to bed when he falls asleep on the couch (which is almost every night), climb in to bed with him sometimes to help him fall back to sleep when he is up at nights.  It's not a big fat deal when he decides he wants to take his clothes off as he looks like a little kid in every way. 

One of the things I have not talked much about yet so this is probably a little out of sequence, is that Josh can be aggressive, in his own way.  When he is really unhappy about something, he will act out not only with screaming but he will hit things.  Mostly walls and toys, but sometimes windows, cupboards, and any other inanimate object that will make a good noise when you hit it hard.  This includes the car window if we happen to be there.  He will also pinch, as described in the Service Dog story.  This used to be a much bigger problem and one of his medications helped with this behavior a lot, but it is still there, just not as frequent.  Apart from the acting out when he is upset, there are also times when I need to do things he doesn't like or understand and he will fight me.  The shoes are one example, but the best example of this is when he gets a nose-bleed.  Josh having a nose-bleed is a nightmare.  He does not understand that I need to pinch his nose to stop the bleeding and that he can breathe through his mouth.  He is terrified and fights me with everything he has.  For a child that cannot do so many things for himself and is so small for his age, he is freakishly strong.  And I mean freakishly.  Josh can lift the mattress up off of his bed and move it all around his room, flip it over completely.  He has kicked in both air vents in the back seat of the car.  He fights hard.  And I know it's because he is scared and doesn't understand what I am doing.  Doesn't make it any easier.  I can't let him hemorrhage all over the house but I hate having to be forceful with him.  It destroys me to know that he feels so afraid that he has to fight for his life.  These times have usually ended up with blood everywhere, Josh exhausted and me in tears. 

So what happens when he goes through puberty?  What happens when he gets bigger, stronger, and more developed?  I can barely think about it, it's too upsetting, but I have to, he's closing in on it.  Josh and I are bonded in a way that is not easily replicated.  All of the time that I have spent with him over the years means I understand what he's saying when most people can't, I know what he wants even when he's not being specific, I know all his Blue's Clues and Little Bear episodes, where they are, how to script back and forth with him, I know how to handle him in various situations, and he is very attached to me.  He has strong bonds with his father and some other family members, but none quite the same as what he has with me.  Makes sense, I've been the one taking care of him his whole life so far.  I intend to remain his primary caregiver, as long as I am able.  He is not going to be independent enough to live without full support and we have no intention of placing him in any kind of facility.  Puberty is going to lead to some very serious problems though and this is the dilemma.  I know I can take care of him the way he is.  I can't imagine how I'm going to manage once he goes through puberty, however.  And given that he already has some aggressive tendencies, what happens when the testosterone kicks in?  There are stories, real stories of terrible, terrible things that have happened with some post-pubertal autistic teens.  One in particular you may have read about last year (I think) about an autistic young man who ended up killing his mother during a struggle.  I realize this is extreme, but it happened. There are other similar stories and situations and I don't want to end up in a position where I can't take care of him any more, where we're faced with being forced to place him somewhere.  I can't do it.  I won't do it.  Josh is a sweet little boy, his tantrums aside, just so affectionate and dear.  I can't bear the thought of puberty changing him, as it certainly might.

Yes, we can get help, I can have people come and help me with him at home.  I am aware of this.  But my point has a broader scope to it.  He is happy, for the most part.  I foresee the changes that will have to happen after he goes through puberty making him much less happy, along with the rest of us.  I think his life and ours will be far more challenging than it already is.  Maybe it seems like a minor thing to others, but how could I make him understand why I can't just lie down and cuddle him in his bed to help him get back to sleep when he is a grown man?  He would never understand.  Do we really have to go through shaving?  Really?  This is a child that will not allow a band-aid on his body, anywhere, still sits in my lap for haircuts and even then won't sit still... shaving, oy.  Honestly, I can't even imagine some of this.  There are other things, I'm sure you understand all that is implicated here.  So as extreme as it may sound, I have been thinking a lot about exploring a medical intervention if there even is one, to keep him from going through puberty.  I realize that this flies in the face of a lot of medical and conventional ethics.  I am not on a campaign to alter every disabled person so please don't misunderstand what I'm saying.  It's very specific to Josh and our situation that I think about it.  There have been other cases.  All very controversial, so I know this is a big deal.  I don't think it's right for everyone, but I would certainly consider it if it were possible, for us.  I just think it would make his life better in the long run.  He is not ever going to be capable of having a family or a job when he is older so keeping him from maturing physically wouldn't be taking away anything from him.  It would be ensuring a better, happier existence for him.  Would also make it much easier in the very long term for his brother, in the event that I can no longer manage due to age or physical issues.  Zach is still very determined to take over Josh's care down the road.  If Zach has his own family, taking on the care of a little boy will be far easier on everyone than if Josh is a fully matured man.  I just can't see any reasons to argue that letting it happen would be a good thing, aside from religion and laws of nature and those aren't a factor here. I can see many reasons why it will not be a good thing.  I'm sure you are all thinking I'm crazy and maybe terrible, though I hope not.  Put yourselves in my shoes for a minute.  Think about if this was your child, think about what it all means, think about the future. I understand there would be a big difference if he were not as profoundly affected as he is and I would not be of the same mind set in that case.

This is only something I think about, something Josh's father and I have talked about a bit, though not extensively. I know of one case in recent memory where a severely disabled, bed-ridden little girl underwent a surgical procedure and hormone treatment to keep her from going though puberty to make it easier for her parents to continue to care for her at home. Girls come with maturity complications of their own.  I completely understood why her parents had this done but this case garnered a great deal of negative attention in the media and sparked medical-ethics debates all over the country.  Which is why I have only been thinking about it as opposed to actively exploring it.  I'm not sure I have the fortitude to deal with everything that would likely result in the event we were to truly pursue this as an option.  Honestly I don't even know if it's really possible or if we'd even be able to find medical personnel who'd be willing to even talk to us about it.  The media was very hard on all the Dr's involved in that little girl's case.

I have spent most of Joshua's life convincing myself that he is so delayed in everything, so small already, that he just simply won't go through puberty.  I realize this is some serious denial and many who read this might just be thinking, "hey, suck it up like everyone else who has a disabled child, it's tough, but that's just something you have to deal with."  Maybe.  But I know in my heart he will be better off if he doesn't go through it.  Life is hard enough for him as it is without adding the confusion, stress, frustration and possibly aggression, that physical and sexual maturity will bring. 

Well, this is about as real as it gets, this is something I haven't talked about with anyone except Bruce and a little bit with my mom. It's something I think about, it's something I know we will have to deal with and work through, though part of me still quietly hopes that my happy delusion of it just not happening will hold true.

Post Script: I had to stop writing this to go to Josh's IEP meeting, where we discussed his goals for middle school.  The teacher he will have next year was there.  She told me toward the end of the meeting that I was going to be surprised at how much he was likely to mature over the next couple of years.  I burst in to tears.


     Hello and welcome to the blog :)  My name is Sarah, and I am the mother of two boys, one of whom is severely autistic. For a long time now I have been thinking of writing about this. I initially had something more substantial in mind, but my very intelligent big sister suggested I start with a blog and I decided that was a great idea.

     Autism has certainly garnered a great deal of attention over the last 10 years and rightly so. However, I find that most of that attention is focused on one of two things. We see the "success" stories or we see the arguments over what may or may not have caused it. Don't get me wrong, I think it's wonderful to draw attention to the positives or when people have been able to do things that have helped their children in significant ways. I also do not have a problem with people expressing their opinions or fighting for their beliefs. However, I do feel like what has been missing is the reality of this for many of us. As a parent, I would often feel guilty when I would see news stories or read books about people who "cured" their children of autism, or recovered them significantly - because that hasn't happened with Josh. We tried many, many things and he has been receiving interventions or therapy of varying intensity and focus since he was 19 months old. I believe that for many of us, the big success stories aren't the norm and we shouldn't feel alone or guilty because of that. So part of this is to share with you my family's reality of life with an autistic child. I'm hoping that this will be of interest to many people, not just those in my situation. Chances are if you haven't yet, you likely will someday, run into someone whose life has been affected by autism in some way.

     What this is: with as much humor as possible (hey, laughter is GOOD!) it's a look at the day to day strangeness that is Planet Josh. What this is not: a place for political debate or to argue over things like cause or treatment modalities. We all have our own opinions and our children are all different and there are places where you can argue to your heart's content about those things if it's important to you. This is not one of those places :)  Here is where you can come to learn, laugh, maybe cry, relate, share, or spend a few minutes because you couldn't find anything better to read. Whether you are a parent, relative, teacher, health care professional, friend or just interested in how my life might be different from yours, please, read on.

     For a while, the posts will be focused on getting to know Josh. You can't really understand this planet of his until that happens. Since this is my first foray into the Blog-o-sphere, I imagine the site will evolve over time. So be patient, stick with me if you can, and I will do my best to make it work.


ps. the "counters" on the sidebar will make more sense after you read my first couple of entries.