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.

Toadie McToad-Burger and the Mystery of The Orange Store

The CSI crew gets a pass on this one, no crime has been committed - yet. 

Recently, Josh has started asking me for "orange store".  Honestly, I have absolutely no clue where this came from or what he's talking about.  None of the stores we go to regularly are "orange" and he's not asking for the fruit... LOLOLOLOL, fell off my chair laughing just then - Josh, asking for a fruit!  AS. IF.  Ok, you get the idea.

So, I don't really know what he's after. 

Curiously, he's also been taking this book of the shelf a lot recently:

Which I also can't explain.  He's been interested in it off and on for years, but this latest interest is definitely more significant.  It's very odd - he has 1,000 Blue's Clues books and a few other children's books he likes and he can't read, but boy, does he like looking at this.  I have a theory.  I think he's getting a better sense of how to demolish things by seeing how they get put (back) together.  I've mentioned that he's a master at taking things apart and has a compulsion to do so - one of these days there will be a post devoted to that, I've been putting it off because I don't want people to think he's horrible.  But indeed, his skill in the destruction of things is really quite impressive. So I figure he's looking at this book (there are pictures of everything) and working the steps backwards in his head, so he knows how to take things apart. I suppose it's possible he's trying to figure out how to fix the things he's already demo'd ... yeah, no.  He's not.

So here's the question:  is the "orange store" Josh keeps referring to Home Depot

I mean, it IS an orange store.... So. Very. ORANGE.

But I can literally count on one hand the number of times I've been there with him.  There certainly isn't anything there that would normally interest him.

Target, on the other hand, is right across the street from HD. 

 

 It's not orange, but it is red.  So.  Very.  RED.  I can see how he might be confusing the two, especially given their proximity to each other.  And there are definitely things he likes at Target.  So how then, does the book tie-in?  I'm sure it's related.  He only just started asking for "orange store" recently after I noticed he had the book out a lot.  Maybe, because he recognizes the logo on the book, and knows that the two stores are close to each other, and doesn't know how else to ask me to go to Target, this is how he's doing it.  Figures it's close enough.  I DON'T KNOW.  Seems plausible though, otherwise I don't have a clue.  Not even a Blue's Clue.

 

5 Things I Hate About You

** I wrote this for Momversation this week, however, as they are currently undergoing their "makeover" and already sitting on two posts from me no one has seen yet, figured I'd put it up here first**

 

Ok, so maybe hate is a strong word. Or not. Hi, happy middle of summer and welcome to my annual pool rant.

My older son Zach takes swimming lessons every summer at the local aquatic center. I’ve lost count of how many this is now, but it will likely be the last unless he wants to do Life Guard training. We’re there every morning, Mon-Fri. It is, as it turns out, quite the place for people/kid watching - I’m sure there are many psych or sociology papers you could write just from spending a couple of weeks there.

On Friday mornings, we also have Josh with us. Josh is my younger son, who is in a summer school program the other 4 days because he is autistic. Josh can be quite loud sometimes. While I understand how startling that can be, it’s just noise, he’s not hurting anyone or interfering in any way. So what I do not understand are the dirty looks I get, as though I have done something offensive by bringing my son to watch his big brother swim.

Really? We’re going there? Ok, pool people, this unfortunately happens every summer, and it pisses me off, so guess what? Your turn. Let me share with you now, the reasons you can all bite me, you big bunch of judgmental babies:

Helicopter Moms You know who you are. You are literally standing at the edge of the pool, following your kids as they swim lengths, waiting, perched over them like vultures when they reach the end of the lane. GIVE YOUR KIDS SOME SPACE, you are going to suffocate them. Not to mention the fact that you are freaking the other kids out hovering the way you do. Stop it.

Coo-Coo Clock Moms Yes, I made that up, but there needs to be a term for it and this seems to fit. Oh, you guys are definitely my favorites. You engross yourselves in everything but your children. Every now and then, you’ll pop your head up and yell something useless, then immediately get back in to the “house” of whatever it is that is so much more important than your kids. An example: Blackberry Mom, has her face glued to that little screen. Her 3 year old, is running back and forth and up and down the bleachers. He climbs through the railing and onto the pool deck. Coo-coo time, Mom looks up though not really at her son and yells “Alex don’t do that” then immediately gets back to the Blackberry. Doesn’t wait to see if Alex heard her or was going to do what she said. He continues his escapade and she is oblivious. Instructors are yelling at him to stop running by the pool. Mom, is still working that Blackberry. Alex wipes out, hitting his head on the concrete pool deck. Huge surprise. This is just one of many examples, you’re on cell phones, listening to i-pods, talking to the other Coo-coos, doesn’t matter, you’re not supervising your children and you should be. Smarten-up.

Completely Clueless Parent I’m talking to you, mom who had her 4 year old “supervising” the 2 year old alone, in the lobby, while she was in the changing room with the 6 year old. 2 year old opens the door to leave, 4 year old follows. The parking lot and road are about 20 feet from that door. Before I had a chance to get to them, they came back in and promptly headed for the pool. Alone. Mom comes out of the changing room - looks around, starts to panic. Well, really? I’m thinking maybe this wasn’t the smartest thing you’ve ever done. Pool staff and I point her toward her children.

Kids Behaving Badly I blame your parents. Rude, inconsiderate or disrespectful behavior needs to be addressed, not ignored. They’ll have no one but themselves to blame when you are miserable teenagers.

Hot Instructor Guy Yes, you are a fine specimen, you’ve got no argument from me on that, dear boy. If I were 20 years younger we’d be dating. However, your tendency to wear swim trunks that sit several inches below your navel, showing those tan lines and that amazing “V” you only see on well-defined males whose pants are too low - while entertaining for the cougars in the stands, is somewhat inappropriate for the pre-teen girls you are teaching. PULL YOUR PANTS UP.

My son is autistic, he can’t help the way he behaves. What are your excuses?

 

This post is dedicated to all the parents, kids, and 1 or 2 instructors at the Covington Aquatic Center (formerly the Tahoma Pool).

A Day in the Life

Perfect day for me to write this one, will also kill two birds with one stone - that, is a horrible expression, by the way -  as it will also cover going to the dentist.

Today, he was scheduled to see the dentist for a check up, he goes every 6 months.  Between his diet, my reliance on candy to keep him happy in some difficult situations and his constant need to have "things" in his mouth at all times, I figure it's necessary.  Though as I'm sure you can imagine, taking an autistic child to the dentist can have its challenges - sometimes taking non-autistic children and even some adults can be difficult, so yes, it is that much harder with Josh. 

My little son, who won't let you near him with a Band Aid, whose finger and toe nails I have to clip while he is in his deepest stages of sleep (and even then it can still be tricky), for whom a nose bleed and someone holding tissue to his nose is like Armageddon, is not about to let a dentist in his mouth willingly.  So this is a challenge. 

The first and frankly most important thing was to find a dentist that was good with and well equipped/prepared for special needs kids.  This was the easiest part - Josh's dad, being a pediatrician, knew of a great dentist in the area to whom he referred most of his special needs patients.  Not only are they patient, understanding, well equipped, and experienced with kids who have all sorts of issues, they are also collectively the nicest bunch of people, from the reception staff, to the hygienists, to the docs themselves.  This was a godsend.  They have special private rooms for the kids who need extra care, every chair in the place has its own video screen in the ceiling, and you can choose from one of their movies or bring your own DVD's.  There is a working model train that runs on tracks suspended from the ceiling so that the kids can watch the train going by as they are lying in the chairs.  The kids can have sunglasses if the lights bother them.  There is always nitrous oxide available for those who want/need it, and, they have a Pediatric Anaesthesiologist who works with them when they need it.  I wish they took adult patients, I'd totally go there myself!

SO, we've had Josh seen there for years.  They know him pretty well.  Most of the time we go in, Dr Kenny gets a very brief look at Josh's teeth but not much else can be done.  About 5 years ago, he had an appointment where he received general anaesthesia, so that they could get a set of x-rays, pull a few teeth that needed to come out, and give him a really good cleaning/fluoride treatment.  It went well, though I was so nervous for him.  Poor little toadie woke up with 5 teeth missing!  But it was really the only way to do it.  The idea is to try to keep the amount of dental work he might need to an absolute minimum, I mean, there's no way we could even contemplate braces for him.  So they want to try to do what they can to keep his mouth healthy and spacing etc reasonable, to avoid serious problems while not having to go too far work-wise. 

Last year his dentist suggested we try oral sedation for his regular appointments, to see if we could optimize what he is able to do.  The first time we did this, it worked amazingly well.  Josh got really loopy and tired and even though he wasn't completely out, he was sleepy enough that they were able to get a good look in his mouth and get his teeth brushed and fluorided.  Sweet!  Or, so I thought.  Next time we went in, we tried it again, only that time he had a paradoxical reaction to the sedation - instead of getting calm and really tired, he became extremely hyper and loud.  He was jumping around all over the room.  Also, no way on the dental exam.  Hmmmm.  So, we came back in a few months to try again.  Nope.  Another paradoxical reaction.  This morning, we were set to try one more time.

For the last couple of weeks, Josh has been in one of his not sleeping at night modes.  It hasn't been every night, but probably more than half the nights of the last couple weeks he's been up.  His being up means I'm up.  Last night was no exception.  Josh woke up at 2am and was up until 7:30am.  He fell asleep 1 hour before we had to leave for the dentist.  I decided that this was actually a good thing... maybe this time he'd be so tired from not sleeping the night before that the sedation would knock him right out.  I am forever an optimist!  So I was obsessing a bit about not messing with him too much, he was also not allowed to eat or drink anything so if he woke, he'd be asking for things I couldn't give him, leading to the usual tantrums.  So I did something this morning I have always judged others for - I left him in his pj's.  Granted, there is a huge difference between my leaving my autistic son in his jammies for a morning appt where he was likely going to go to sleep anyway, and people who take their kids to Target in their pj's... which I can't stand... but still, I felt the sting of hypocrisy just a little.

I load the sleeping toad in to the car along with big brother, and we head out.  Josh woke up just before we got there.  We got Josh to stand on the scale so they could calculate how much of the sedation he would get and took us to our room.  First thing Josh says, since he's familiar with the place, was "Blue's Birthday!"  Meaning he wanted his DVD loaded so he could watch on the screen in the ceiling.  Before he'd even finished the word "birthday" my heart sank and I wanted to die.  Zach was just looking at me, his eyes huge with the sudden realization of why I looked like I was about to cry.  "I forgot his DVD's.... "  Extreme fail.  I had been so pre-occupied by his being asleep and trying to keep him that way, I totally spaced and didn't bring his DVD collection.  Honestly, I may have to blame the lack of sleep for this one, it's normally just part of the going anywhere with Josh routine, I can't figure out why I left them this time.  Needless to say, Josh was not pleased.  I was beside myself, I felt terrible, I knew I'd probably mucked this up.  Did my best to keep him from losing it completely, but it was a real fight to get him to take the medicine this time, when usually he takes things quite well. 

He did calm down once the medication started to take effect though, thank goodness.  He was clearly tired.  I convinced him to climb off of my lap and in to the chair where he just kinda chilled.  They brought him a very snuggly blanket - I so wanted to curl up under that bad boy myself! As tired as he was though, he's no dummy and his "people are going to try to do things I don't like" senses were on high alert.  As soon as the dentist or hygienist tried to do anything he went in to full-on ninja-defence mode.  I swear he could fight off a grizzly if he thought it was going to try to look in his mouth or *cue suspense music* floss him. 

Ultimately it took me getting on the chair behind him and wrapping him in a bear hug, the amazingly wonderful Dr Kenny holding and squeezing Josh's head (he really likes deep pressure, especially on his head when he is upset) and the hygienist patiently cleaning his teeth a couple at a time when she could coax him in to opening up for a couple of seconds.  Also, big brother Zach was there by his brother the whole time, doing what he could to make Josh feel better. 

It sounds horrible, and it's not easy and obviously I would prefer not to have to hold him and struggle, but, better this than having cavities that need to be filled (not a single cavity in his mouth, if you can believe it) or other issues that are preventable with the proper care.  And I don't mind holding him, that way I know he's not getting hurt and I whisper in his ear the whole time which, even if it doesn't help him, I like to think it does. Zach was given the task of watching Josh in the car on the way home in case he fell asleep, to watch his positioning so that he wouldn't compromise his airway.  I know the post-sedation drill, though as you can see, Josh is a beast, he should totally have been sleeping the rest of the day... but wasn't. 

We got home and he was like a stumbling drunk.  Thought he could just run around like he usually does but kept falling over.  So Zach and I managed to steer him toward the couch till he got his legs back.  You have to be careful after the sedation as far as eating and drinking, just water at first, then soft foods.  Water was no problem but you know Josh and his diet... he would cough a lot every time he tried to drink so he didn't have much water the rest of the afternoon.  He was asking for things to eat, but he wasn't really eating them.  At 4:15  we took Zach to karate class.  Josh had asked for fries - he seemed fine and the sedation had been at 9:15am so I figured he'd probably be ok by that point.  Just as we were pulling away from the dojo, Josh started coughing and threw-up, all over himself and his seat.  Then he did it again.  Aw, toadie... but, ugggggghh... I didn't have anything in the car with me to clean him or anything else up.  Luckily the dojo is only about 8 minutes from our house, so I made for home, Josh yelling at me for fries when we did not stop at the McD's.  Yes, even after throwing up all over himself and the back seat, he still wanted fries.

We got home and I cleaned him and the car and his seat up best I could, loaded us back in to go pick up Zach - class is only an hour.  This time I brought a couple of towels.  We get to the dojo again, Zach jumps in, and Josh throws up.  Again.  I was ready this time though, I had pulled in to a parking spot, jumped out, opened his door so I could hold the towel for him.  FUN!  Poor toadie. 

Yes, he asked for fries again on the way home that time too.

He's a little on edge tonight because I was unable to give him his Celexa and Lamictal this morning since he wasn't allowed to have anything before his appointment.  I'm hoping he'll actually sleep tonight, the whole night, and not be too unhappy by the time tomorrow morning comes when I can give him his meds again.

No, we don't go to the dentist with him every day.  But, it's just an example of how something as routine as a dental appointment for your child can turn in to a fairly major ordeal when that child is autistic.

Also, I'm tired.  I kept dozing off writing the first part of this, hope it makes sense !

 

On the business end of things here at the blog, I have a new little Facebook "like" button in the sidebar, just below the Archives list.  I am highly resistant to most of the usual things we have to do in the blog-o-sphere to build our readership, but this is more about creating a credible platform - it has always been my intent to write a book, and you can't get a publisher's attention for non-fiction material unless you can show an established audience for what you're writing.  Believe it or not, they actually look at how many followers you have on Twitter and how many Facebook fans you have as part of the whole deal. As Zach would say right about now, "GET ON WITH IT, MOM"... so, yeah, if you could hit that little "like" button for me, I would appreciate it, thank you :)  

 

 

 

So This is New

I guess since the whole sleep-weirdness thing didn't pan out, Josh is taking a new tack in his efforts to keep me on my toes.

Earlier today, a Walgreen's Specialty Pharmacy rep came to the house to meet with Zach and I - Zach is starting on Growth Hormone shots this week and she needed to come and orient us on how to give it, store it, prime the injector, dial up the dose, etc etc.  Josh was happily doing his thing up in his room, so Zach and I were downstairs in the dining room with the rep.  I had already warned her that Josh might show up without pants and not to be alarmed.

Apparently I should also have warned her about his random, sudden, ear-piercing primal screams when he's only about 3 feet away...

Josh came downstairs while we were talking, took one look at us sitting and talking at the table, and promptly went in to upset-whiny mode.  He started asking me for everything.  I excused myself for a minute to go get what I thought he wanted, turned out it was one of those, "nothing you get me or offer me even if I've asked for it is going to make me happy, in fact, it's just going to make me more upset" moods.  Those are fun.  So he was getting louder and more disruptive, I went back to continue with the rep.  Josh followed me.  He would not leave me alone.  So we tried to continue our orientation with Josh grabbing at me and crying in that high-pitched knife to the brain way that he has.  I tried tickling him to break the funk, often this works well.  He'd start laughing for a few seconds but he was determined to continue the disruption, undeterred by my distraction he'd let loose with the primal scream.  It will make you jump even if you're used to it, and the poor rep must have come off her chair a good 6 inches.  I had to give Zach his first injection with Josh harassing me the entire time. 

About 5 minutes after the rep had gone, Josh was perfectly fine.  Happy as a clam, going about his business like nothing had happened.  Whaaaaaaa?  OK.  I am used to his tantrums being somewhat random and occasionally inconvenient but this was... purposeful.  He'd come downstairs, saw us talking, and decided for whatever reason that this was unacceptable, and did his best to interfere.  The only other times I've ever seen him behave this way ON PURPOSE, with the intent to change something that was going on, has been when we've tried watching a movie or tv show on the family room tv at a time when he was not interested relinquishing it for our use.  We've had people to the house before, it's not like he's never seen someone he doesn't know come in.  It was a surprise and honestly, really annoying.  I love Josh, and I don't like complaining about him or making it seem like he's terrible to be around because he's not, for the most part.  But he gets so much of my time and attention as it is, and this is a really big deal for Zach and I need Zach to know that I am 100% there for him on this.  Usually I take Josh's tantrums in stride but I let my annoyance show while the rep was here.  That's right, I'm talking about you, Mr Toad. No, I don't have any more Pop Tarts...

So now I feel guilty.  Guilty because I couldn't give Zach and the discussion 100% of my focus and guilty because I lost my patience with Josh, who, can't exactly help how he is.  So, it was a fairly suck-tastic parenting episode.  Both kids getting the short end of the stick on this one.  WHO TOOK THE LONG ONE? Damnit.

 

In other news, Josh helped himself to about 7 Pop Tarts after dinner.  Hey, I'm all for his being able to get things for himself, but, this may have been a little bit of an abuse of that freedom.  Little. Bit.  Someone should figure out how to fill them with meat and veggies yet still have them look and taste the same...