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...

Venturing Off-World

The subject of traveling with Josh has come up within the context of several previous posts but none that have focused on it specifically as the topic. Since going anywhere with him, even just out to dinner, is an exercise in anticipatory planning, preparation, packing, and co-ordination, I felt it deserved a post all its own.

It's amazing, really, the things you take for granted before you have kids.  Of course, you don't realize that you are taking anything for granted until the kids come along and change everything.  Going places, and I mean, anywhere - grocery store, post office, DMV, or you know, Europe, is no exception.  It is probably one of the things that changes the most.  Kids = stuff.  Whether it's in your house or on the road, they have and need a lot of stuff.  Special seats, special beds, special food, special toys, special mobility devices, you name it, they've got it and you need to take it all with you.  Gone are the days of simply jumping in the car to run a "quick" errand.  Of course you get well versed in how to manage, marveling at how adept you become at handling strollers, bags, carriers, other kids and sometimes, dogs.  You get used to it.  And just when your memory of the time before all the stuff arrived in your life is about to fade completely... BAM, circumstances allow you to go out somewhere sans stuff and it all comes back to you. 

The amount of stuff  is always inversely proportional to your kids' age(s).  Normally, as they get older, the amount required when you go places becomes less and less.  This is not so much the case with Josh, or, I would imagine, any autistic child.  The first real travel challenge with him was when we moved from Philadelphia to Seattle when he was just two.  Though he had not yet received his "official" diagnosis, he was already in Early Intervention for all of his delays as well as his sensory integration/processing issues and we pretty much knew anyway.  We decided to fly.  Even though Josh had not turned two yet when I bought the tickets and he could have sat in my lap, we decided it would be best to buy a full ticket for him and have him in his car seat on the plane - he was used to the seat, comfortable in it, never fussed in it, so it seemed like a good idea.  It was... sort of.  While the theory of how Josh would be in the seat proved correct, traveling with a full-sized car seat ON THE PLANE is not easy.  His seat actually got stuck in the x-ray machine when we were trying to leave Philly.  True story.  Josh's dad managed to get it out, though the TSA folks were not at all happy about the damage to the x-ray machine.  Maybe they should have thought of that before making us put the seat through it.  Then you have to get it on the plane and fastened in to a seat, all the while managing the child or children, and all the rest of the stuff.  This, is why they invented pre-boarding.

As he got older, the thought of trying to manage his now special-ordered, extra large car seat on a plane was just too much.  So now a days he just sits in the airplane seat.  He can easily undo the seatbelt though, so the trick these days is to make sure he stays calm and happy for the duration of the flight.  A task that I'm sure you can imagine is easier said than done.  Since the move 10 years ago, we have not attempted any single flight longer than about 3.5 - 4 hours and I'm not sure I'd want to any time soon.  There is just so much that could potentially go wrong, visions of being escorted off a plane in the middle of nowhere because Josh becomes too disruptive make me too nervous.  Four hours or less is doable though.  Of course there's still a lot of stuff involved.  I mentioned in the Service dog posts about giving him a tiny dose of a sedative prior to flying - I may have said it was Valium, that was incorrect, we use Ativan, in an extremely tiny dose as prescribed by his psychiatrist.  We made sure to try it at home before the first time so we would know how he reacted to it.  You don't want to be trying out a new medication when you are traveling without knowing how your child is going to respond. I always try to make sure I have everything he will want DVD-wise, as well as having a spare, fully charged back up battery for the portable DVD player.  I order new or replacement Blue's Clues books before the trip and don't let him see them until we are in flight.  I bring a variety of special candy treats, and try to find a few other small, desirable (aka sensory) objects to surprise him with as well.  We always need a change of clothes and pull-up changing supplies.  I bring a small pillow that he's had since he was a toddler in case he wants to lie down.  I already mentioned I don't like the bulkhead because you can't lift the arms of those seats, but there is always the fear that if he does get upset, he will start kicking the seat in front of him.  The times I've flown with him, I have taken a chance on that not happening and not been seated in the bulkhead.  But we've been lucky, and if we were ever to risk a longer flight somewhere, it might be better to sit there as there would be a higher risk of his being unhappy at some point.

And of course there's Buddy.  He has his own stuff.  I talked about security with him in the Service Dog posts, that's always fun... on top of everything Josh needs/might need, I have to make sure I have Buddy covered too.  Poop pick up bags/cleaning supplies in case of any accidents, treats, vest, harness, leash, food, bowls, documents to verify vaccinations, etc...

The car is not quite as daunting as plane travel with him, though it still requires a lot.  I bring more in the way of food for him when we go places via car.  More of his toys and a blanket or two, as well as everything I usually bring for plane trips.  We don't use the Ativan for car trips though, that is strictly for flying.  And it doesn't knock him out, by the way, it really just seems to keep him mellow for a couple of hours.  Of course in the car I've had to stop at highway rest-stops to change him.  Which is not something that is enjoyable by any stretch of the imagination, just sometimes necessary.  When we go up to visit my family in Canada we have to stop at the border to go through customs.  The lines are often very long.  Josh is usually fine in the car unless it's not moving, then he's not so happy.  So border waits can be difficult.  There are two different ways for us to cross so when I am getting close I have to pay attention to the signs indicating wait times at both crossings to see which will be faster.  Man, when both boys were little and Josh was on the GFCF diet, I was packing food for both of them for however long we would be away... GFCF stuff for Josh, things Zach could eat because of his allergies, I had grocery bags, coolers, you name it.  I'd open the back of the car at my mom's and she'd be like "um, how long are you staying, exactly?!" Would take me half an hour just to get everything unloaded and unpacked.  Good times!

These days I don't travel with all the food, just some things for Josh that I can't find up there for him, like his almond milk (because I could not get him back on cow's milk after going off the GFCF diet).  We also don't pack as many toys as we used to for him - just a few of his most favorite books, a few favorite toys, and all his DVD's are usually ok at this point. 

I have to take those things when we are simply heading out for dinner as well, though.  Along with spare pull-ups and changing supplies and special candy treats.  We also have to plan so that we don't head out later than 4:30 - 5pm, as there are usually longer lines to be seated when you don't get places early, and Josh will NOT tolerate waiting when he knows fries are going to come. 

When I have had the rare opportunity to venture off without Josh in tow, I realize just how easy it is and am shocked.  Driving up to visit my mom a few months ago, by myself, I didn't have to worry about border waits, I could make a pit stop and not lose my mind over everything that Josh was touching, I packed in about 10 minutes and had one, small, bag.

My mom just looked at me.  "Where is everything?"  I laughed.