Postscript to the Birthday Post

There are a couple of things I'd like to touch more on from the last post.

First, it occurred to me when I read it over, that my frame of reference for what was assumed about autism or autistic individuals is likely very different from most of yours, unless you are close to my age or older.  Autism wasn't something people knew much about when I was growing up.  In fact, you'd rarely hear of it at all.  I only knew about it before I was in my teens because a cousin of my mom's had a son who was institutionalized because he was autistic.  I never met him, so I really don't know what he was like.  I only heard my mom and her relatives talk about him sometimes.  All I knew was that because he was autistic, it was impossible for his mother to take care of him so she'd had him placed somewhere.  As a kid, all I could imagine was that he was crazy and probably violent.  This was my first notion of what autism was, whether it was correct or not.  Keep in mind, we're talking about the 1970's here.

My next ideas of it came from a tv show.  St Elsewhere was a medical drama that aired on NBC from the Fall of 1982 to the Spring of 1988.  It was a fantastic show, and on it, the son of one of the main characters was autistic.  Tommy Westphall.  His character was completely replete of emotion, there was nothing about him that ever suggested he felt connected to anyone at all.  He just stayed in "his own world", barely interacting with his family and even when he did, it was always very robotic.  Stereotypical to be sure, though based on what was known at the time, I imagine.  This is the picture of autism I had.  It was the only picture.  Until 1988 when Rainman came out. 

There is a tremendous push in the autism community to distance themselves from that movie.  I don't have quite such strong feelings about it, and I'll get to that in a bit. But among most, there is.  It was probably the first time many people had any idea about autism or what it was like - the movie was so popular, that Dustin Hoffman's character WAS autism to just about everybody who had seen it.  Once again though, we were looking at a person who had been institutionalized for most of his life, who didn't like being touched or hugged. 

The Rainman character was actually based on 2 people. Much like the Tommy character before, this presented a very limited view of the disorder but it was really all we had. So this was my reference, this limited knowledge based solely on what I'd been presented with in the media.  Entertainment media at that.  Sadly, I learned nothing about it in the course of my nursing studies.

While the traits and characteristics of these characters can all be found in people with autism, what was not made clear was how much the disorder varies from person to person.  I don't believe it's possible to find two individuals on the spectrum who are exactly alike in how they are affected and/or how they behave.  I can say that now, after all my years of looking after Josh and having met many other autistic children along the way.  But I didn't know it back then.

In a way, I think Josh is a lesson the universe needed to teach me.  I didn't mention this in the "guilt" post because it's hard for me to admit, but I had a conversation once with my best friend in nursing school.  I remember it very well even though it took place a long, long time ago.  We were in our final year of school and were making decisions about the specialties we thought we'd be going in to once we started working.  The conversation eventually came around to pediatrics and sick kids and how hard it would be to take care of them and we somehow got off on a discussion of different childhood ailments.  I don't remember specifically what else was said, but I do remember saying this: "I think that having a child who was autistic would be the worst thing I could imagine. Can you imagine having a child that never shows any affection or love, that doesn't interact with you, that doesn't want you to interact with them? It would be worse than anything else that could go wrong. "  Deep breath.  Yes, I really said that.  And trust me, it haunts me to this day.  Understand though, I was basing that on what I have shown to be very limited knowledge.  At least these days, there is so much more information available and so much more given to us in the media, there is a much better frame of reference for people. 

But I have Josh. And Josh has taught me a great deal about many things.  He has shown me that he can love, that he wants and needs to interact despite the fact that it is very difficult.  He has expressions and uses them often.  He is not a savant.  But he is not a robot either.

I don't shun the Rainman comparisons as much as some for 2 reasons. First, Josh has many behaviors that are actually very similar to Dustin Hoffman's character.  So while I know that people shouldn't hold that up as the definition of autism, there are certainly enough similarities to make it a reasonable reference.  Second, it was a positive portrayal.  And it was a monster hit.  While it may have been entirely unrealistic, it also brought autism out to many who probably would never have thought about it otherwise.  I won't fault them for that. 

So when I talk about how different Josh is because he is so affectionate and loving, you now know why I see it as, in fact, "different" for a person with autism.

 

OK.  Now, on to something entirely different but still related to the birthday post.

Have you ever wondered, with a child that cannot communicate, how you buy gifts for them???  It's not like big brother, whom I can simply ask, "hey, what do you want for your birthday?" and he'll give me some ideas.  I used to rely on the "if it has anything to do with Blue's Clues, we're good" rule.  But with the series long out of production, there are no more toys/products.  I rely on fresh batteries and the hope that Amazon carries the books forever.  But we need to do something and Josh does like other things.  It's just figuring out what that's the hard part.

So a few years ago, I just decided that it was best to let him show me.  I'd take him to a toy store or department and simply watch what he seemed attracted to. I would get the things he seemed to like in the store but I wouldn't bring them in from the car after we'd get home.  I'd wrap them up later and voila!  He had his presents.  Josh doesn't care that he's seen them before, in fact, he's pretty happy about it since he'd wanted them in the first place.  At this point I just let him go and tell him to find what he wants and when he picks things up, I have him put them in the cart.  This has worked really well - he's always happy and we know he's getting things he's interested in playing with.  Which is much better than trying to guess like I used to.

Which just made me think of yet another post I can write...!

Postscript to the postscript coming soon :)

Dear Zach: A Letter to my Big Brother

As much as it is a challenge being the parent of an autistic child, siblings can have their own difficulties.  Zach is only 22 months older than Josh, so he doesn't remember how much Josh adored him before all of his issues were fully manifested.  In some ways I think that's good, because I know how terribly it broke my heart to see him disconnect from his big brother and I'm sure it would be just as hard for Zach to remember that.  But I also think it would be helpful for him, when things get tough with Josh, so he would know how much his brother loves him.  Zach has dealt with a lot over the years, having Josh as a brother, and I think Josh would like Zach to know some things:

Dear Zach,

Mom says that even though you were only 2 when I was born, you were the best big brother right from the start.  I know when I got a bit older I loved being with you.  That's why mom would always take me to the play room or sit me next to you if you were watching something on tv, it really made me happy.  There are a lot of pictures of us together when I was little like that, you should ask mom to show you sometime, I think you'd like them.  I remember you were right there with me when I first learned how to walk and you were so excited for me!  We used to play chase - well, as best we could in the house and with me not walking so well, but I would always follow you and you used to try to hide from me then surprise me when I would get close.  I liked this game. 

I don't know what happened that made things change for me.  But I want you to know that even though the problem I have makes it so that I don't talk to you or play with you any more, it doesn't mean that I don't love you.  I do!  I love mom and dad too.  I just can't make things work properly so that I can understand and communicate - but I do have feelings.  I just don't really know what to do with them.  Whatever is wrong makes things really hard for me.  So when I feel sad or angry or frustrated I don't know how to handle it and sometimes it's scary, so I act-out.  I know that this will get someone's attention and maybe they can help me.  When I hurt you, I know it makes you sad, and really angry at me.  I can understand that because being sad and angry is usually why I'm acting out.  So I know it's not fun.  And I am really sorry when I do end up hurting you, I'm not really trying to do that, though I know it doesn't seem like it.  You never, ever hurt me back - it would be understandable if you did - because even though you might be really, really mad at me, I know you love me and you know I can't help a lot of the things I do.

I know it has been hard for you, over the years, having me as a brother.  In many ways I'm sure it's like being an only child but without the benefits.  There are a lot of rules for you that don't apply to me and I'll bet that seems seriously unfair.  I know there have been a few times when you've said that I was "lucky".  I know it's because of that.  You don't want to be me though, Zach.  Even though it might seem nicer to not have all the rules, it's not fun, not being able to communicate with people or understand most of what goes on around you or even inside your own head.

I know it's embarrassing sometimes, especially when I'm being really loud out in public or at places like swimming or karate class.  And I am really sorry that there have been times we have had to leave wherever we were because I was having a hard time, I know that's not fair to you or mom and dad.  But I can't help it. I wish I could.  You have always been good about it though.  You're a great brother.

There are a lot of compromises and accommodations that have to be made for me all the time.  Many times this is at your expense somehow, whether mom can't attend a special school program because it wouldn't be appropriate to bring me or she doesn't get to go on a field trip with you or you have to stay after school to do Homework Club next year because mom has to come and pick me up first... I know it's a drag.  I wouldn't blame you if you didn't like me very much.  But I know that you love me.  You show me all the time.  You try to help when I'm upset, you tickle me and make me laugh, you kiss me goodnight when I'm falling asleep, and you always make time for me when I do want to talk to you.  That helps me a lot, to know that I can always count on you. 

When mom knew I was autistic, the thing she felt most sad about was you.  She may not have ever told you this, but, up until the time that things changed with me, she always thought how lucky she was to have two boys that were going to be such good friends as they grew up together.  So when she knew that things would be different with my problems, she cried for you, because she knew that we wouldn't have that relationship any more.  She still cries for you because of that.

I wish I could be that friend, in that way that we were when I was so little.  But even though I can't, I am so glad to have you as my brother, my helper, my defender (mom told me how mad you were when you found out someone had bitten me again at school... ).  You are the best big brother I could ever ask for and I love you very, very much.  I always want you to know and remember that, even when I'm making it hard. I know mom and dad think you're pretty awesome too.

Maybe one day we'll play chase again.  I'd like that.

*Head please*

Love,

Josh.

 

*Josh says this when he wants to kiss your forehead - it's his sign of affection*

 

 

What is "normal", anyway?

I wish I'd written this, but I don't think I would have done it justice - this is a fantastic post on the Thinking Person's Guide To Autism that I think everyone should read:

http://thinkingautismguide.blogspot.com/2010/08/arbitrary-normality.html

 

I have felt this way for a long time, so nice to see someone else put it in to words.

ps. I have a post up on the TPGA as well, but it was about service dogs and since I already tortured you with 4 posts on that here, didn't think you needed me throwing more of that around! Feel free to check it out though, if you are interested. :)  I have the Guide on my links page, but you can also just navigate from the post above.

Toothpaste is stupid. Also, the Purse-Baby.

The extent to which that was a pain in the ass is actually beyond my ability to describe right now.  No, wait.  That's not true.  Fuck.  FUCK CREST SPARKLE KIDS TOOTH GEL.  Yeah, that's close.  

It's blue.  And sticky.  And smells like fake bubble gum.  Did I mention that it's blue?  It's also all over the carpet upstairs, all over Josh's toys, all over his clothes, a little on the walls, but mostly the carpet.  And it's blue...

I just spent the last few hours trying to clean this up.  Well, I also went to retrieve Zach, more on that in a minute.  I used an entire bottle of Woolite OxyClean Deep carpet stain remover.  That wasn't even close to being enough.  I didn't have any more carpet cleaner on hand.  So, I grabbed an all purpose cleaner I use mostly in the kitchen.  The cleaner is like, whoa, lady, that's not my thing.  So I was all like, guess what?  Now you're carpet cleaner.  Cleaner said, BRING IT - it's a good cleaner.  So we went back to work.  Cleaner says, Lady, I think we need Special Ops for this one.  So I head to the laundry room and grab the laundry spot/stain treater stuff.  Stuff says, hey, I'm in laundry, I don't do carpets.  I ask how carpet is really all that different from clothes and stuff said I had a point.  I've been watching Blue's Clues for 12 years straight, you think I'm not going to be talking to inanimate objects in my house? 

SO all purpose cleaner and laundry stain stuff worked together.  With a lot of help from my right hand/arm. 

Then I ran out of paper towel.  And energy.  So I'm done with the stupid blue toothpaste cleaning for now. 

 

In other news, where was I?  Oh yeah, some sentimental crap about Zach growing up.  I was having a moment.  The moment got pooped on by a full tube of Crest Sparkle Kids Tooth Gel

I picked him up at the theater and he is fine.  The earth is still spinning in the right direction and I don't have to rip anyone's lungs out because they messed with my kid.  Score 1 for successful milestones.  I asked him how the movie was and if there were many people there.  He said the place was almost full and that there was a baby in the seat next to him.  A baby?  Yeah, a baby.  It was in a purse.  Ummmmmm, what?  The baby was in a purse.  The mother apparently came in, put this purse down on the seat beside Zach, and then she sat in the seat next to it.  He looked over at the purse.  It was open, then he saw a blanket move.  He looked in a bit and saw a baby, asleep, in a blanket, in the purse.  I ask him if this was really a "purse" or if it was like a bigger bag, and he insists it was a purse.  Bigger than what I carry, but not as big as his gym bag.  A PURSE!?  "Yea, mom, a PURSE."  Uh, wow.  Weird?  "Yeah, the baby slept the whole time.  The mom just sat there with her sunglasses on and didn't pay any attention to it."  Sunglasses.  What?  "Yeah, you know, the really big dark ones like movie stars wear when they don't want people noticing them."  During the movie... she wore them the whole time?  "Yep. She wore the sunglasses the whole time. Never paid any attention to the purse baby." 

I don't even know what to do with that.

On a side note, last night, while discussing his impending solo outing I requested that he and his friend not go crazy just because there would be no adult supervision.  Zach's response: "I promise we won't thieve anything, ok?"  Me: "Well, that's awesome.  I was thinking more along the lines of not making too much noise and kicking people's seats, but yeah, not becoming a complete delinquent is good too.  Nice use of the word thieve, by the way."  Zach: "Thanks". 

 

Guilt

I suppose it's inevitable, when you are a parent, to feel guilt over things that happen to your children.  I am no exception to this, whether we're talking about Zach's height (I'm only 5'2" on a good hair day) or Josh's autism.

I do understand when the logical side is in charge for a few minutes (yeah, that side doesn't ever get very much time... ) that I am not at fault for most of the things I feel guilty about, particularly when it comes to Josh.  But knowing that on the logical, objective level is one thing.  Really feeling it on the emotional, completely subjective level because this is my baby we're talking about, is another thing entirely.

Ironically, when comparing my two pregnancies, Josh's was the least complicated.  Honestly, with the exception of one time when my OB could not find his heart beat and had to do an ultrasound to make sure everything was ok (it was), it was probably the most straight forward, no-complaints pregnancy ever.  I didn't even have morning sickness with him - well ok, there was that one time I felt a little queezy after breakfast, but that was it.  Which was in stark contrast to when I was pregnant with Zach and had a very long list of complications and overall badness. 

While the pregnancy itself wasn't worrisome, my consumption of tuna was.  This was 1998 and the facts about how much toxic metal (among other things) was in a lot of the seafood we eat were only just starting to come out.  I knew to avoid eating certain types of fish but it wasn't until a year or two after I had Josh that the recommendations about adding tuna to that list came out.  Tuna.  Wait, tuna?  Oh, you mean the stuff that I ate at least once a week while I was pregnant with Josh because I had cravings for mac'n cheese with tuna on the side for whatever reason?  THAT tuna?  Yep. That tuna. 

So I think about this.  A lot.  And I feel guilty.

There's also the whole thing about the neighborhood we lived in possibly being toxic - specifically, the basements.

We were living in a suburb of Philadelphia in a brand new house.  It was a development on what had formerly been the playing field of an old high school.  Prior to that is where the history of that land becomes somewhat suspect.  But there we were, a nice neighborhood of about 2 dozen new homes, all with basements.  Within a couple of years, there were some incidents being reported of people (specifically young children and elderly people) falling ill while in the basements of a few of the homes.  It was enough to bring the EPA out to perform tests in everyone's basements and make the evening news.  Ultimately we were never notified of any conclusions regarding all of the tests that had been done and we moved not too long after this.  Why do I feel guilty about this?  Because after Josh was born I had a great deal of weight to lose.  Essentially, since I hadn't lost everything after Zach before I got pregnant with Josh, I had 2 pregnancies' worth to deal with.  We had a treadmill.  In the basement.  When Zach would go down for his nap each day, I would take baby Josh down to the basement with me, put him in his swing, and walk on the treadmill for an hour.  Every.  Day.  In the basement.  The toxic basement from hell. 

So there's that.

And let's not forget the genetics here.  We know from all of the current research that there is a large genetic component to autism.  There are some relatives on my side that are either autistic or have related issues.  No immediate relatives, but it's certainly there, floating around in the genes.  Can I help that?  No.  Do I still feel guilty about it?  Yes.  Because I'm human and I'm a mom, I can't help it.  This little being was my responsibility.  I often feel like I failed him.

There is also the question of have we done everything we could?  I touched on some of what we did as far as treatment goes in his Bio and in a couple of my earlier posts.  We tried a lot.  Conventional, unconventional, you name it.  There was not much we didn't attempt.  We got to a point though, where after several years, we simply weren't seeing much in the way of progress with anything we were doing.  The most progress he made seemed to be in regular old speech therapy and school.  So we stopped all of the "extra" things that didn't seem to be getting him anywhere.  Should we have persisted?  Should we have continued to try everything under the sun?  How do we know that there isn't something out there that could change his life dramatically?  We don't.  I just know that most of what we did made him exceptionally unhappy and did not produce much in the way of results.  I came around to the conclusion that accepting Josh as he is was perhaps our biggest challenge and really the only thing we could do for him.  I do not "embrace" autism,  as some out there suggest.  I embrace my son.  But I feel guilty every time I read other blogs or watch other parents' Twitter feeds about needing to find a "cure" and relentlessly pursuing every notion that comes along in order to help their kids.  There is so much out there on the alternative side of things that is un-researched, untested, unproven, and in some cases, just dangerous, that is being touted as the latest "treatment" or "therapy".  I personally don't believe that what Josh has is "curable".  Behaviors and symptoms treatable?  Some of them, yes.  But completely changing what has made him different from the rest of us in the first place?  I just don't believe so.  I also don't believe that all the cases of what is being diagnosed as "autism" today actually are.  I think that this is the reason some children respond to certain things where others do not, I don't think we are necessarily dealing with the same thing, despite similar symptomatology.

All this guilt is probably why I have such a hard time forcing issues with him.  I realize that this is just exacerbating some of his difficult behaviors but it's not an easy thing.  I truly just want my kids to be as happy as they can be, whatever circumstances they are in.  For Josh, being happy usually requires a lot of give on my part therein lying the difficulty.   I am not the kind of person who wallows around in guilt or self pity, I usually try to keep a positive outlook regardless of how stressful, difficult or just plain weird things are.  But inside, when he is frantic about something, there are those guilty feelings that bubble up to the surface and I think, well, maybe if I hadn't had him in the basement with me all the time or eaten so much damned tuna... maybe...

I try to focus on the good things I think I might have had a hand in with him.  I know that dwelling on the "what if's" don't help and only make things harder.  It's just not always that easy.

 

*for the record: Josh was tested for toxic heavy metals and came out negative.  Which should have put to rest my issues with the tuna.  However, I have not purchased nor eaten tuna since 2000, and actually turn away when I walk by it in the store.  I don't know why.  Probably because of the intensity of my anxiety over it when I found out I shouldn't have been eating it.  Like I said, guilt is not always rational.