TLC - The P.T. Barnum of Cable Television

Freak-shows.

Throughout history, differences in the human condition have been fodder for exploitation and entertainment, dating back to the 16th century with street "performances" to entertain the masses. In 1850 you could hand a man a quarter or less and gain admission to P.T. Barnum's "Great Travelling Museum, Menagerie, Caravan and Hippodrome" where you could look on in fear, wonder, amazement, or horror at a bearded lady, "Siamese" twins, a three-legged boy, "Fijian cannibals", giants, midgets (as they were referred to then), or any other number of human "oddities".

This phenomenon seemingly reached its peak in the mid-to-late 19th century, when there were over 100 such side-shows traveling with circuses and fairs around the country.

As we moved onward in to the 20th century however, our knowledge, understanding, acceptance and compassion grew, and shows like these disappeared from the mainstream. We have evolved and we look back on these cruel and demeaning displays with pity for the ignorance collectively suffered and sadness for those used and abused because of their differences.

Or have we?

I don't believe we have.

We're just better at making it look acceptable now.

These days all you have to do is sit in the comfort of your own living room and turn on the tv. But while the venue may be different, what's happening is exactly the same as if you handed a man a quarter to see what's behind that curtain. If you watch TLC, that is. 

TLC. Formerly The Learning Channel, they actually used to show educational programming. But when it was clear that was not where the money was, they changed their name and moved in a more lucrative direction. Lucrative, and unsettling.

Over the last decade TLC has essentially become a modern-day P.T. Barnum. While it can be argued that just about every channel/network out there offer some questionable programs (consider this a shout-out to MTV... ), TLC has cultivated a programming line-up that would rival any side-show of the past.

A current list of some of their shows:

- My Strange Addiction

- 19 Kids and Counting

- Sister Wives

- Hoarding - Buried Alive

- I Didn't Know I was Pregnant

- The Little Couple and Little People, Big World

- Toddlers and Tiaras

 

Let's look at that list. A recent episode of My Strange Addiction featured a woman who was obsessed with carrying around the ashes of her dead husband... and eating them. Then we have procreation run-amok and polygamy. People whose compulsion to collect so much of something that they endanger their own lives. Women who give birth without having any clue they were even pregnant. Shows about... that's right... little people. Sound familiar?

Don't misunderstand what I'm saying. I am not calling any of the people on these shows "freaks". What I am saying, is that their differences, whatever they may be, are being exploited for the purpose of entertaining others. Of course these days, with the exception of the children, being shown like this is the choice of those we are watching. This was sometimes the case during the heyday of the circus side-shows as well, where many of the adult "exhibits" displayed themselves willingly, in order to earn money. Seems to me, this is not much different today.

But let's please not forget the children. Who truly have no voices here except what their parents or guardians have chosen for them. How is being put front and center on a tv show that people watch because they think you are at best, a curiosity, any different than the parents that sold or contracted their children to the freak-shows of old?

The jewel in this dirty crown (pun entirely intended) without question is the abhorrent and irresponsible Toddlers and Tiaras. This show has been in the news quite a bit recently, and for good reason. Here, TLC shines a big, blinding spotlight on the world of "beauty pageants" for little girls. And by little, I mean as young as a year old, and by beauty, I mean if you consider spray-tans, fake teeth, false eyelashes, more make-up than Ru Paul in full drag, hair that defies any explanation and outfits more suited to 18 yr-old cheerleaders or Vegas show girls, beautiful, on babies and elementary school-aged girls.

I could rant for days on how horrifyingly wrong this is. Why these pageants are legal is frankly a mystery. The exploitation is rampant and obvious - for all of the supporters out there, all you have to do is watch a few episodes with Eden Wood's mother in them and you won't be able to get away from it. For all who cry "scholarship money!", I'd like to point out, that at least from what they have shown, cash is handed over to the winners of these pageants, not checks made out to trust, cash. Ms. Wood said right on camera that she was just waiting for "Hollywood" to call to offer her 6 year old a 2 million dollar contract so that she could then go out an buy a big house in L.A. What parent says to their 6 year old "it's all on YOU, all the money, all the work, it's all on YOU." ? How can you say "well, when we first did her make up we were really bothered by it because she looked 17 and she's only 4, but, well, you get used to it, it's just what you have to do." ? Actually, no, it's not. No one is putting a gun to your head and forcing you to do this to your children.

Yes, I understand that there are exceptions, and that there are likely parents of these girls who are truly trying to earn some money to help with their future education. But people, giving your 4 year old fake boobs, a hot-pink, skin tight outfit, making her up to look like a bad Barbie on What Not to Wear, filling her full of coffee and Pixie Stix, and making her believe that she is not beautiful unless every single thing about her is fake... is not the way to do it. The body image issues these very little girls already have, just make me sick to my stomach.

And while TLC may not be forcing anyone to do anything, they are certainly providing the incentive/motivation/vehicle for this to continue and possibly flourish. The chance to "be on tv" and "get famous" are powerful drugs to those hungry for any kind of attention, even if it's negative.

 

Human nature will not change. I'm not writing this to judge anyone who watches these types of shows, I understand that when given the option to observe unusual people or circumstances, we will. We will always be drawn to things that are different, things we find strange, outrageous, bewildering, amazing, in both good and bad ways. Whether it's because we are curious, afraid or confused and want to understand, or because knowingly or not, we feel better about ourselves when we see others in situations we deem difficult, or, we actually find the differences of others entertaining somehow, there will always be an audience for the freak-show.

TLC has simply chosen to capitalize on this.

Ol' P.T. would be proud.

 

I think about this a lot because I have Josh. My son. My Toadie, who, even in this day and age, prompted a man to say that he should be in a cage.

I know that people look at us when he's acting out. Even when he's not. Because he's different. Back in the day, he probably would have been abandoned or sold to some freak-show purveyor. This makes me die a little inside.

So am I being too hard on TLC? Am I over reacting? Come on now, it's just tv... right?

Right?

 

You tell me.

 

Paws and Effect: The Service Dog Story, Part 3

The final chapter.  Well, sort-of.

I'll be honest.  After Josh and I returned home from Ohio I really wasn't sure I wanted to continue working with 4 Paws, given what had happened.  Having had a brief go of it with a dog for Josh though, I was as convinced as ever that it was a good idea.  I figured we could probably get back on the NSD list if I talked to them, but, we'd be back at the bottom and I couldn't see waiting yet another 2 years.  There was also the tracking piece.  NSD does not train the dogs for tracking as 4 Paws will and at the time, I had some concerns about Josh wandering off so I still felt that would be a good thing.  With reluctance I resolved to keep going with 4 Paws.  It was hard though, not going to lie, I was still so angry and so hurt about what had happened.

I was in e-mail contact with the director and she informed me that the intern that had been the one talking about Josh with the other families and staff had been terminated.  Apparently she was not well liked by them anyway and her indiscretion just solidified their decision a little sooner.  Small victory. 

This time around, instead of finding out with not much notice when we would be looking at heading to training, she told me that they had a dog in mind already for Josh and figured that dog would be ready by August (it was April at this point).  So, we agreed to come back and were set for their August class.  She reminded me that they would be moving in to their new facility before then so things would be better for the kids, easier for the families. 

So now I had several months to plan.  I also had the experiences of the first trip out there to draw from so this time I would do some things differently.  Many things, actually.  Maybe everything.  For starters, I would not be going alone with Josh.  Both my mom and Zach would be coming with us.  Josh really likes my mom and I knew Zach would be a big help with whatever might be needed of him.  I also knew that if there was ANY way to avoid it, I would not be staying at that Holiday Inn again.  Especially with 4 of us going this time.  I searched and found a Residence Inn that had kitchens, 2 bedroom/2 bathroom suites, guest laundry facilities, and, an indoor pool.  PERFECT.  It was not in Xenia though, so I had to get it approved by 4 Paws.  Their rule was that it had to be within a certain drive-time/distance of the training facility.  It looked to me like it wouldn't be too long of a drive, maybe 20 minutes or so.  The director approved it, but we were warned that being late to training sessions would not be tolerated so we had to use judgement about whether we would have enough time to go back on lunch breaks, etc. 

Just the change in where we were going to be staying for almost 2 weeks made such a big difference in my outlook on the whole thing.  I knew it would be easier, more comfortable.  I could cook the things for Josh that I knew he would eat.  We'd have enough space for all of us, Josh could be in one room watching his DVD's while Zach could be in another watching whatever he wanted on tvZach and my mom would share one bedroom, while Josh and I had the other.  This way Josh could be up at night without bothering them too much.  There would be plenty of room to practice with the dog.  And of course, there was the pool.  Josh loves water.  LOVES IT.  He cannot swim but loves to just be in it.  So I knew having the pool to use in our down time would be a great thing.  Then I found out that my friend from the first training class was going back in August as well.  They had taken their dog home but decided that he was not a good fit for them and so they were coming back.  She had actually requested to come back for the session that I would be in, so that was another plus.  She arranged to stay at the Residence Inn as well. 

Goes without saying that we did not fly with Northwest.  This time I went with Frontier.  We were booked from Seattle to Indianapolis via Denver, had a minivan rented, and would drive from there to Xenia, OH.  Was about a 3 hour drive.  I didn't care, it was relatively inexpensive compared to flying in to Cincinnati or Dayton and it wasn't Northwest. I also did not do anything as far as telling them that I had a disabled child with me though I did mention there would be a service dog coming back. I did not want to have to go through the hassle about bulkhead seating again.  I would deal with Josh in the airports myself, I had Mom and Zach to manage bags this time, plus, I knew that my mom coming with us was going to make Josh intrigued so I didn't anticipate too much trouble this time.  Besides, after what we went through last time, I knew I could handle just about anything.

The other thing I decided to do differently was not to change the dog's name.  Yes, they can learn new names.  But when there is so much else for us and the dogs to learn and get used to with each other, it really seemed like that was only serving to make the whole process slower, more difficult for the dogs and potentially frustrating for the families.  So we (our family) agreed that no matter what, the dog's name was the dog's name and we would just go with it so that would be one less thing to have to work on when we started training.

I was letting myself get excited again.  More so when I found out that my friend from our first class would be there with us too. 

August was getting closer but I didn't have too much time to anticipate - we were moving, so there was much to do on the home front.  In fact, we were to leave for training a little less than 2 weeks after getting in to the new house.

At some point during all the insanity of the move we got the e-mail, the one introducing us to the new dog. 

His name was "Buddy".  This is the picture we got of him in that e-mail. Buddy

The story was that he had been taken in by a family down south somewhere, and they believed very strongly that he would make a good service dog so they drove him all the way to 4 Paws in Ohio.

He has one brown eye and the other is half blue and half brown.  They had no idea what kind of dog he was, just that he was unique and had a wonderful temperament.

I'll admit I was a bit taken aback when I got the picture.  When you think about service dogs, the usual labs, retrievers and shepherds come to mind.  Buddy was definitely unique, I didn't really know what to make of him.  But Josh is also pretty unique, so, who am I to judge?

 

So, the time came and we were off.  Again.  Much more prepared this time, armed with experience and help.  Flights were no problem,  we arrived in Indianapolis and then drove to Ohio. 

Training this time around was like night and day.  The new facility was certainly a big factor.  There was so much more room, it was much more comfortable, the kids had more room to move around in relative safety and there was the back yard.  A huge, fenced area where we could take the dogs out for breaks but also had a play set for the kids.  It had a swing.  Thank goodness for small miracles.  My mom took Josh out to the swing and spent most her time there with him.  He was happy.  He would hang out inside with us too sometimes, but there was always the ability to just take him out to do what he likes best while I was working with Buddy inside.  There were other siblings there so Zach made a new friend or two when he wasn't helping my mom or watching me work with Buddy.  He actually got to participate sometimes - the trainer would have him and some of the other siblings walk around the dogs as "distractions" while we had them "sitting" or in a "down".  Zach loved it.  Most lunch breaks we spent in Xenia, there were a few places we could eat and it gave me a chance to practice taking Buddy in to places like that.  On days when we had a longer break we would just go back to the hotel.  The evenings were spent mostly with me taking Zach and Josh to the pool, while my mom was either bonding with Buddy or doing laundry (seriously, she offered, I certainly didn't ask her to do it!).  It was nice, the dog got to rest after working all day and the boys got to play in the pool, something they both love doing.  I had to be in the pool with my hands on Josh the whole time but it's fun to see him happy so it was never a problem. 

The tracking went much better this time as well.  Josh would go with my mom and sometimes Zach as opposed to someone that was a stranger to him.  So I was able to learn to handle Buddy and that was important since Buddy is basically a rocket with legs.  I kid you not, this dog can MOVE.  Had everyone wondering if he had some Greyhound in him, given his deep, barrel chest and his speed.  And boy did he love tracking, this dog has a nose on him that could find you in another country I think.  Most of the dogs needed a trail of hot-dog pieces to get used to tracking their children.  Buddy did that once, then did not need them again.  He really LIKED the hot dogs mind you , but he didn't need them.  This was Buddy's world.  So I learned quickly how to work with him, learn his signals, manage the track, and not get myself pulled off my feet or dragged by him.  He always found Josh.  I got better and better at managing him and reading him. 

Everything was going well.  His obedience was a little less solid than his tracking skills but nothing truly worrisome.  The hardest thing really when it came to the 3 of us as a team (Josh being tethered to him) was that he just moved too fast.  Keeping this dog to a more casual pace was going to be the biggest challenge, he wants to have the nitro firing at all times.  Other than that, it was just a world of difference from our first time out. 

On our last tracking training session, the trainer took us to a wooded area and instead of telling people where to take the kids to hide, he just sent them off in to the woods so that we would be working a completely blind track, none of us knowing where they went.  So it was a simulation of what it would really be like if heaven forbid your child ever did become lost or wander/run away and you needed to find them.  For this track, we had Zach go out and hide with an adult from another family.  Josh was not in a great mood that day and since it was a blind track, we all knew it was going to take longer and it was unlikely that Josh would handle being in the woods/bush for any length of time.  The trainer said that was fine, most of this training was for the people, not the dogs, since the dogs already knew what to do.  It was for us to really get a feel for how to handle them through any type of terrain and know what to do with whatever signals they were giving us.  There is a lot to know about tracking, it is not simply a matter of following the dog.  You have to watch, sometimes they lose the scent, you have to know how to help them find it again.  You need to understand the difference between the dog being on the child's scent vs the dog getting distracted momentarily by some animal that had also been there.  They need water regularly so you have to watch the time.  More than I can tell you here, just know that there is a lot that goes in to it so this was really a big test for those of us handling the dogs. 

Zach and the person who took him out to hide did a good job, meaning they were well hidden.  Buddy went for it and never gave up.  We were running through bushes, trees, mud, you name it.  I was sweaty, out of breath, and looked like I'd just been voted off Survivor on Day 28.  We even had to come back out to where the cars were, give Buddy a drink, and then went back in again.  The deep, barrel chested dogs have a much bigger lung capacity than dogs who aren't built like that so the trainer said that most of the other dogs would have stopped before this point, just wouldn't have it in them to keep going.  Buddy did though and he knew Buddy was good (one of their best trackers ever, they told me) so we kept going.  We eventually found them.  Poor Zach, sitting out so quiet in the bushes for so long, what a trooper!  It took us over an hour. Might have been an hour and a half, I can't remember.  All I know is we made 4 Paws history, longest successful blind track they've ever done.  Apparently the trainer still tells classes the story.  They gave me a bonus break that day and let me go back to the hotel and shower before coming back that afternoon.

We completed training with a test in a large shopping mall.  Met the trainer there at the set time, had Josh tethered to Buddy, and I had to walk with them through the mall, around the Food Court, in to different stores, etc.  Josh has never, ever, been a fan of malls.  In fact, it had been years since I had even been in one, I just stopped going since it would always be a nightmare.  Yet Josh was great, walking around without having me hanging on to him, but tethered to Buddy.  It was just as I had imagined it would be.  We passed the test.  Went to the class graduation ceremony back at the center, and got ready to leave. 

Now came the hard part.  Doing everything with a service dog.  The dogs have special vests/harnesses that they wear so it's obvious, but it's still something that gets a lot of attention and not everyone is always as understanding as you would think.  When we went to dinner that night before we drove to Indianapolis, the hostess who sat us made us wait while she went to talk to I assume the manager, and then sat us way in the back of the restaurant at a tiny table that wasn't really big enough for 4 people but it was not in their main restaurant area.  Pretty sure they were trying to keep us away from as many of the other customers as possible. Buddy tucks himself under the table as he is supposed to so most people won't even know we have a dog with us until we leave or unless they happen to see us come in.  They had us sitting at this tiny round table that was free standing, almost like a little bistro table, as opposed to a booth, so it was really hard for Buddy to manage sitting under this, but he did a good job despite the awkwardness of it.

The flying home presented a lot of stress on my end with him.  Had to make sure he went to the bathroom as close to airport time as possible, didn't eat or drink much before the flights, and just hoped like hell he wouldn't have an accident somewhere.  We were told in training that this happens sometimes, so we were to be prepared for it.  I had clean-up supplies if I needed them, just really didn't want to have to deal with that, it was hard enough making sure Josh was not going to lose it while en-route.  Security turned out to be an interesting and ultimately humorous experience with him.  So Josh, Buddy and I are a team, all attached by the dog's harness, Josh's tether, and the lead I hold.  My mom and Zach do their thing and walk through the metal detector.  We're up.  The security team is just looking at me, scratching their heads.  They ask if I can un-attach everything and if we can come through one at a time.  I tell them I'll try, but that Josh is autistic and not likely to do that well without me managing him.  They want me to do it anyway.  So, I get us separated, and do my best to send Josh through, then I walk through with Buddy.  Of course alarm bells are going off everywhere, the harness has several metal attachment rings on it.  We take off the harness completely.  They want to "wand" Josh.  He is supposed to stand still with his arms out so they can do this.  I start helping and they tell me I can't touch him.  I start laughing and say, "well, good luck with that".  Maybe not a great idea to laugh at airport security but really, watching them try to get Josh to stand still was a joke and I had explained that it wasn't going to work.  They did what they could and kind of gave up on Josh.  It was my turn, so I stood still like a good little passenger and got properly wanded.  Too bad that isn't as fun as it sounds.  *ahem*  So then it was Buddy's turn, yes, they wanted to wand Buddy.  They even switched from the female agent to a male one for him, which made me bust out laughing again, I mean, guys, it's a DOG, he doesn't care!  He'll be happy if one of you gets his happy spot going, don't worry about your sensitivity training with this one.  The agent got down to Buddy's level and sat there for a minute, wand at the ready.  I was trying not to giggle too much watching him try to wave the wand around Buddy's tail.  He looked at me, then the other agents and just said, forget it, pretty sure the dog doesn't have any weapons on him.  Indeed.  So we got our selves  put back together and made our way to the gate. 

Buddy was terrific on the plane.  Little nervous on take off mostly because of the noise, but he settled down quickly, I gave him lots of treats, and he curled up at Josh's feet for the rest of the flight.  Since Josh is small, and Buddy is not a large dog (I swear he can curl up in to the tiniest ball, it's pretty impressive) he fit with no problem at all  and we weren't even in the bulkhead.  Most of the fight attendents were surprised to see him when we got off the plane, said they had no idea he was even there.

So we were home once again, this time with our dog.  Buddy.  The story that the director told me when we got there was that he had been a Katrina refugee, his original family had been displaced by the hurricane and were not able to keep him where they ended up, so another family took him in.  They were the ones who brought him to Ohio.  My mother and I are convinced he is a Catahoula Leopard Dog, a breed indigenous to Louisiana.  Who knows.  Our journey with Buddy has not been perfect - there have been a lot of really great things and some not so great things that have happened with him over the last 4 years.  I will be putting up pics of him in the photo gallery.  I will end this story here.  I can talk more about Buddy, but will leave that to future posts.  These were more about what it took and what we went through to get him.

What is this, 8 pages long? Seems like it should be, takes me half the day to write these things :) 

 



Paws and Effect: The Service Dog Story, Part 2a

Alternative title: Why I will NEVER fly with Northwest Airlines again, ever. 

I may have subconsciously been putting off writing this second part because to this day, this is a very difficult memory for me but it's part of our story so I need to do it.

So we got Ellie's picture and note and were beyond excited.  I just couldn't stop thinking about what a difference she was going to make for us and Josh, plus I love dogs, so I was like a little kid waiting for Christmas.  Now, getting your dog requires attending a training program at the organization with your child.  This is true of both NSD and 4 Paws.  The dogs have already been trained, their new families need to learn how to work with them and all need a chance to bond.  If you are getting a dog that is trained to track, then the training is more extensive.   We had asked for tracking so this meant a longer training session.  They invite a certain number of families to each session as the dogs are felt to be ready.  We were set for March (2006). 

The training sessions for tracking dogs is 10 days long.  4 Paws asks that at least two adults accompany each child who is receiving a dog, so that there will always be someone who can be with the child while the adult who will be the primary handler can participate fully in the training process.  The children are a part of the process as well, especially during the tracking work, but their participation is not needed 100% of the time as is required of the adult handler.  Given that this is a program to place dogs with children of varying disabilities, obviously there will be times the child will not want or be able to participate.  At the time, Josh's father could not take any time off of work.  It was March, so school was still in and I was very reluctant to pull Zach out for that length of time.  I decided that I would just take Josh on my own.  This turned out to be a mistake, but at the time I felt I could manage.  Josh was also not very good about being with too many other people at that stage aside from myself, some of his teachers, and family members, so I just figured I would be best able to manage him and we didn't have a lot of options anyway.  After a little more than 2 years of working on this, I was also just so anxious to get him his dog, I couldn't bear the thought of putting it off any longer.  I discussed it with the director of the organization, told her we just didn't have any options at the time, and that I believed I could manage it.  She was reluctant and told me to continue to try to figure out a way to bring someone else along.  My mother was coming to stay with Zach and his dad so that she could help with taking care of Zach while Bruce was at work and I didn't have any friends or other family members that either were able to take that much time off or close enough to Josh for it to be helpful (didn't make much sense to bring someone if Josh was simply going to tantrum with them the whole time).  So I just decided I was taking him on my own. 

Then came the travel plans.  At that time, Josh was still fairly difficult in terms of public melt-downs and I was extremely nervous about how to manage him on my own with carry-ons, changing planes, and very specifically, security.  Josh is not someone who is capable of standing in a line for great lengths of time without dissolving in to a tantrum (if you haven't read my post titled "That Woman With the Screaming Kid", now would be a good time to do that so you understand what we're talking about here!).  I also knew that coming back, I would have all the same concerns but we would be traveling with the dog as well.  I knew I had to do a lot of planning and preparing.  I spent hours researching airline rules and regulations and policies regarding traveling with people with disabilities as well as service animals.  Did you know that there are "Helper Monkeys" ?   Seriously.  I came across policies relating to them in my research travels.  I have never, ever heard of a "helper monkey" before, let alone seen one in action but now I want one!  Anyway, helper monkeys aside, I figured I had enough info under my belt to make some calls once I'd made our flight reservations.  I booked with Northwest Airlines.  4 Paws is in Ohio, little town called Xenia, which is closer to Dayton and Cincinnati than to Cleveland, so I ended up on a flight that went from Seattle to Minneapolis-St Paul where we would need to change planes and get a second flight to Dayton.  I e-mailed the folks at Northwest Airlines customer service about my situation and was told that traveling with the dog would be no problem as long as it was clearly a service dog.  I also called them.  I know a lot of people like to request the bulkhead seats but I did not want those - I knew Josh would have his baby dose of Valium on board at least for the longer of the two flights and there was a definite possibility that he would want to sleep.  You cannot lift the arm rests of bulkhead seats, your trays come out of them so they are immobile.  I wanted to have the ability to lift the arm rests so that Josh could lie down more easily if he needed too.  The people I spoke to about it said that was fine.  I also asked them if they could have a service agent meet us in Seattle as well as in MSP, to help get us through security faster in Seattle and help me get us to our next flight in MSP, as our connection time was pretty tight.  They said they would do all of this for us.  I actually called them again a couple of days prior to our scheduled departure to make sure all was in place and they assured me that they had notes about it all with our reservation and everything was set. 

We arrived at the airport for our departure and upon checking-in, asked the ticketing agent about the service agent that was supposed to be meeting us, as there wasn't one when we got there.  She said she would check for us.  Josh was already upset because his dad had to leave us at the airport and I was starting to get a really terrible feeling in the pit of my stomach.  No agent.  Ticketing lady said she couldn't find anyone.  I told her there were supposed to be notes about this on my reservation.  She says she sees the part about the dog, wants to know where the dog is.  I tell her we will have one on the return trip but what I really needed now was someone to get us to the front of the security line because at this point Josh was in full-on melt down on the floor.  She said she would try to find someone for us.  I am livid.  But I have to deal with Josh so there is no time for me to let loose on Northwest right now.  I dragged him, literally, off to the side after she checked us in and waited.  And waited.  And waited some more.  Keep in mind that Josh was screaming the whole time.  On the floor.  This is a busy airport.  I'm getting those looks.  I know that each and every person who passes us is praying that we are not on their flight, and I didn't blame them, I was really scared about getting on a plane with him for several hours at this point.  I couldn't give him the Valium yet, that had to happen as close to flight time as possible because of how long it lasts, I didn't want it wearing off mid-flight, and really didn't want to give him more than one dose despite how small it was.  Still no service agent.  So, I steel myself, set my jaw as I do when I am pissed off and determined, and maneuvered my screaming son to the security line, people's looks be damned.  I decided if it got too disruptive security would just pull us up and put us through on their own, so whatever.  The one small miracle of this day would be that the line at that time was not very long, luckily for all of us. 

We got through security, me  still fuming, Josh is calming down a little as we are walking.  I look to see where our gate is...Terminal C.  Where the hell is Terminal C??  I find a map.  Oh, goodie, we have to take a train to get there.  OK.  I can do this.  I find the escalator to take us down to the transit level.  Josh loses his mind and starts screaming like I have never heard him before.  Wow... what the hell?  I realize as I try to get him to the escalator, that it is, the escalator that is the problem.  He had never done this before.  Mind you we had not been on too many in his life so there wasn't a lot of past experience to go on.  He was clearly terrified.  I looked around quickly for an elevator but couldn't see one in the immediate vicinity.  It was at this point I thought about just bagging it.  This was ridiculous, I couldn't even get to our gate with him.  I have a real stubborn streak (all of you who know me STOP SMIRKING!) though, and just felt that if I could get us to the gate, I could give him the Valium and he would calm down.  So we went in search of an elevator to get us down to the train.  Finally found one - note to SEA, you should really make handicapped access more ACCESSIBLE by having it closer to where people will need it.  We got to the train and made our way to Terminal Freaking C.  We get to the gate and I take Josh to the bathroom so I can give him the Valium.  This does not come in child-friendly liquid or chewable forms, for obvious reasons, so I had a small spoonful of peanut butter in a medicine cup in our carry-on, stuck the pill into a blob of it, and stuck it in his mouth (thank goodness he likes peanut butter).  He ate it, and we were set.  We boarded the plane and took our seats, which were perfect, no bulkhead and no one sitting with us.  We get settled, I can see Josh calming down already so I start to relax a little.  Flight attendant comes to me.  Says we are sitting in someone else's seats.  I show her my boarding pass which has these seats printed on it.  She is confused and goes back up front to pow-wow with the other attendants.  No more relaxing for me, that feeling is back in the pit of my stomach.  She comes back.  Tells me that someone must have made a mistake when we checked in because we are supposed to be sitting in the bulkhead seats.  Ok. No, we're not, I told her that I had specifically requested NOT to be sat there and explained to her why.  She goes back to pow-wow some more.  Back to me.  Well, the note we have on your reservation says that your son is disabled and our policy is that you are supposed to be seated in the bulkhead seats.  You're kidding me, right?  I DO NOT WANT THE BULKHEAD,  IT WILL BE WORSE TO PUT US THERE,  THESE SEATS ARE FINE YOU NEED TO TRUST ME ON THIS.  He's my son, I know what will work and what won't and I was told that none of this would be a problem.  Mind you, I had been told a lot of things by Northwest at this point.  Back for more discussion amongst her crew.  I am fairly certain that steam was actually coming out of my ears at this point.  My jaw was starting to hurt from how clenched I'd had it all morning.  I may have scared her.  She came back and said they would LET us stay where we were.  Oh, thank you, how kind.  Plane takes off, Josh is actually doing well, quietly looking at his books and watching Blue's Clues DVD's on our portable player.   I have a picture of him during the flight, I will put it up in the photo gallery after I post this.  For a couple of hours I let my jaw relax and was able to go back to being excited that we were really on our way.  Josh managed the flight really well, so that helped a lot.  We get off in MSP, a little late, so I knew we were going to have to really move to make our connection.  Was there a service agent there waiting for us as we got off to help us as there was supposed to be? Of course not.  How silly of me to think at this point that Northwest was going to come through on ANYTHING they had told me they would do.  So I told the gate agent what my issue was and asked where the next gate was.  I am not sure how many of you are familiar with MSP but it is a massive airport, I mean, really just enormous.  She tells me that our next gate is way the hell away in some other terminal and that we'd better hurry, because we hardly had any time.  Uh, thanks for the help.  She didn't call anyone, wouldn't get a cart for us, nothing.  Also, neglected to tell me about the inter-terminal transit system.  I had never been to MSP before and had no idea where to go except to follow the signs.  I think we only had about 15 minutes at this point.  I was beside myself.  I grab all our stuff, get Josh by the hand, and started running.  Really running.  Poor Josh, for a while he found this amusing but then he was getting tired, it was a long way and he is a little person.  I was dying, I had my purse,  and 2 carry-on's over one shoulder and Josh with the other hand.  People were looking at us.  Carts with older people on them would drive by us but none would stop.  One man even started laughing as we went by and made a comment about how we'd better keep running.  Why are people so horrible?  I stopped at a gate of a different Northwest flight along the way, desperate, sure we would miss the flight.  I asked the agent to call to our gate and please let them know that we were coming.  She wouldn't.  Why not?  She never really even answered me except to say no.  This was the same damn airline, is this really a problem?  Wow.  So we keep running.  We get to the gate as they are literally starting to close the doors and we actually got on the flight.  I am sweating, out of breath, so is Josh, I feel like I have been bulldozed both physically and emotionally.  Northwest not only failed to do any of what we had arranged for them to do, but essentially went out of their way to make things MORE difficult for us. 

We land in Dayton.  As I am at the rental car counter I realize much to my horror that on the way back we will be dealing with Northwest again, this time, dog in tow.  Or so I thought.

(Evil as I am, going to leave it at that for now.  Since it was clear that part 2 would have be divided in to an "a" and a "b", looks like this is going to be at least 4 posts for the whole story - told you not to hold me to 3!  Might even be 5, there is a lot to it). 

To Be Continued...

 

Paws and Effect: The Service Dog Story, Part 1

Ok. This subject is likely going to require multiple posts to cover the whole story so this will be the first of however many it takes.  I'm thinking three, but don't hold me to that. 

When Josh was about 5 years old my mom sent me an article from the Vancouver Sun newspaper about an organization in Canada that was training dogs to work specifically with young, autistic children.  I had been thinking about a dog but had no idea that this was even a possibility until she sent me the article.  It started with the mother of an autistic child who approached this group that were training dogs for people with other types of disabilities.  Her son was a "runner" - in the autism universe, this is the term we use to describe children who take off anywhere and everywhere at any time, without warning, with no regard for their own safety.  Some will even wake up and leave their houses in the middle of the night.  Trying to hang on to a child like this is impossible.  This mother was desperate and was hoping that there would be some way for National Service Dogs http://www.nsd.on.ca/ (this is in Canada, by the way) to help her.  The trainers decided to give it a shot.  They trained a dog that would be a part of a team: adult, child, and dog.  The child would be tethered to the dog with a special lead hooked to the vest of the dog, this being about 3 feet long.  The dog would be handled by the adult.  This ended up working well for this child and he actually developed a bond with the dog that literally changed everything for him and his family.  This led the folks at NSD to think maybe they were on to something here and as the story came out, they started getting more and more calls from parents of autistic children.  They decided to focus solely on training service dogs for autistic children at that point, developed a training program, and started accepting applications. 

I investigated this thoroughly.  Josh has never been a "runner" in the classic sense but these dogs were helpful for so many situations, I knew it was a good idea for Josh.  Once he got too big to sit in the grocery carts, he was loose, and at that time, was NOT interested in holding my hand or being held on to in any way.  Then trying to get him to stay with me would cause a tantrum... which was something I tried to avoid whenever possible.  I figured with the freedom for him to move around without being "held" but still safe and not loose because he would be tethered to the dog, it seemed like a fantastic idea and one that just might work.  There was also the hope that he might develop a bond with the dog and be able to take it to school, maybe it would help keep him more calm and focused.   NSD is a Canadian organization though, and we are in the states.  They were taking applications from families outside Canada, but Canadians were given priority on their wait list.  So I did a lot of research to see if there was anything similar in the U.S.  At the time, there was not.  Service dog organizations trained dogs for those who were blind, in wheel-chairs, had epilepsy or were deaf, but no one was training dogs to work with autistic children - that being the other issue, no one was training dogs for anyone younger than 16 period, regardless of their disability.  Not that I could find anyway and believe me, I looked long and hard. 

We decided to apply to NSD, even if it meant a long wait list, feeling it would be worth it in the end.  We did, and were accepted, but the wait was going to be about 2 years, possibly longer. 

I started getting impatient though, I really wanted this for Josh.  So after about a year on the NSD wait list, I started looking around again for something in the states or even anything similar, didn't matter where it was.  That's when I found 4Paws http://www.4pawsforability.org/  who are located in Ohio.  I'm not sure why I didn't find them initially but I don't think they had been working with autistic children at the time I started checking in to all this.  They were when I found them though, and not just for autistic children, they trained dogs for children and adults with many different disabilities.  For the autistic children, the dogs were not only trained as service dogs, but also as tracking dogs, if you felt that was a skill important for the dog to have (ie. in case your child ever wandered off or was lost somehow).  I got in touch with them and ended up applying to see where it would put us as far as wait time for a dog.  NSD bred their own dogs to use in their program, which was a big part of the reason for the long wait list.  4 Paws used all kinds of dogs, including rescued dogs, as long as they met temperament and health standards required for training.  This made the wait list much shorter for them.  I contacted NSD to find out how close we were and was told it would still be another year or so.  4 Paws said we would likely be able to get our dog within the year.  So I had NSD take us off their wait list and set us up with 4 Paws. 

The process to get the service dog required a written application from us stating why we wanted a dog for Josh, how we thought it could help him and our family.  We needed letters of reference and recommendation from teachers, friends and doctors.  We had to submit a video of Josh and the family.  Mostly of Josh though, so they could get an idea of what he was like to better match him with a dog.  I made sure to get a tantrum on the video, so they could see what he was like when upset - better to know ahead of time to make sure they chose a dog that could handle that.  We did everything we were supposed to including submit the required donation.  Both NSD and 4 Paws asked for a certain amount as a donation to the organization, they obviously need to function somehow.  You can donate the money yourself if you have the means, or you can fundraise.  The difference was this: NSD asked for it, but, if you were unable to raise the full amount by the time you were up on the list for getting a dog, you would still get your dog.  They guaranteed a dog to anyone that they accepted on their list.  With 4 Paws, you are not eligible for a dog UNTIL you meet the required donation amount.  Neither is right or wrong, just different organizations functioning the way they feel is best for them and what they do.  What that did mean though, was that with 4 Paws, you had power over when you could get your dog - fulfilling the requirement sooner put you at the top of the list.  With NSD, your place on the list is set when you are accepted and you cannot do anything to change that.  I don't want to get in to the ethics of all this, I have conflicted emotions about it to this day.  Both organizations do wonderful things for our kids. 

Our requirements fulfilled, we were notified that we had a spot in a training class that was to take place in March of 2006.  I was so excited I can't begin to tell you.  The hardest part was waiting to meet Joshua's dog.  They send you an e-mail with a picture and note from your child's dog anywhere from 1-2 weeks prior to your training class.  This was something I had been working on for a couple of years by this point and we were so close... I had all sorts of visions in my head of how it be, how Josh would develop this amazing bond with his dog... how much it would help.  March arrived, and so did our e-mail.  Her name was Ellie.  A beautiful golden lab and she was anxiously awaiting our arrival so she could meet her new friend Josh. 

... And this is where I will leave the saga of the service dog for now.  I know, I know, don't hate me, I just can't fit it all in to one post and this is a good spot to break it  (of course that will be more obvious with the next post, but you just have to trust me :P ).

That Woman With the Screaming Kid

"Hi, I'm Sarah, this is my son Josh and we will be annoying you today."

There was a time when I wanted to make this announcement any time I left the house with Josh.  I refer to this period in Josh's life as the "dark side" - essentially the years of his worst behavioral/emotional issues thus far. 

We've all been there as parents and if you haven't yet, you probably will: the joys of enduring your child's melt-down, out-burst, tantrum, whatever you want to call it, in public.  Toddlers are fabulous at this.  Be it in a store, restaurant, plane, entertainment venue of some sort, no place is sacred, it's all fair game.  So most of you understand what it is like to be the subject of the negative attention this brings, the object of the judgmental scrutiny of others.  And we all do that too - judge people in these situations.  Even if you've been through it yourself, I'd be willing to bet that there have been times when you have encountered others in this situation and made some sort of judgement about the parent(s) and or child.  I know I have, even though of all people, I know I shouldn't. 

With Josh however, as with most things because of his issues, this was taken to an extreme.  From the time that he was about 20 months until he was close to 7 years old, it was pretty much a given that he would tantrum at some point when I would be out with him, no matter where we were going.  Joshua's tantrums were brutal, and I mean that literally as well as figuratively.  Not only would he scream, a very high-pitched, ultra-annoying sound, but he hit himself.  He would take his little hands, and either open or closed fisted would slap his ears from behind (back to front, as opposed to just clapping his hands to his head).  Doing this over and over and over would result in raw, bloody skin on the backs of his ears.  He would do this at school too.  I remember getting a phone call from the school one day asking me to come and get him because he had been tantrumming so much that his ears were dripping blood and the staff were concerned about the safety of the other children and themselves... meaning they were worried about blood-born diseases.  I assured them that he did not have AIDS or Hepatitis B, but picked him up anyway.  I also remember being told several times that his classroom staff had been asked by the principal to remove him from the classroom and take him to one of the portable buildings that was not being used, because he was too disruptive to the rest of the school when he would scream for so long.  My 3-4 year old had to be REMOVED from the school.  I'm pretty sure this kind of stuff was not in my instruction manual...

It got to the point where we had to do something.  I think the breaking point for me was one summer afternoon - and this was at home, not even out anywhere - Josh had been screaming for 3 hours straight.  Nothing I did seemed to help.  I didn't know what to do to help my son, and I remember sitting against the wall of the family room crying.  Zach who was all of 6 or so at the time, came to me with his two little neighbor friends to give me a hug and ask if they could help.  We talked to Josh's doctor at length and ultimately decided to try a medication that did not have any scientific proof for its use in these situations, but there was so much anecdotal evidence we had to give it a shot.  So we started him on Celexa, some of you might know that this is an anti-anxiety/anti-depressant drug on the market for adults.  Science or no science, within 2 days of starting him on it he stopped hitting his ears.  Just stopped.  The tantrums and screaming were still there, but he was no longer hurting himself.  I can't tell you the blessing that was and is to this day. 

The tantrums persisted though.  I could not get through a trip to the grocery store without his screaming at some point.  We didn't travel with him, it was too much of a risk, I had visions of un-scheduled landings and air-marshals escorting us off in the middle of nowhere.  Going out to eat was always hit-or-miss.  He wanted to do it, nothing better than people serving you fries, but it was unbelievably stressful.  Wherever we went they had to be fast, and I had to have every method of counter-tantrum tactics at my disposal: portable DVD player, every DVD, books, treats that he likes a lot but doesn't usually get like certain candy, his water in the appropriate drinking container, you name it.  And even then there were many times we just had to leave because he would start up and we didn't want to disturb everyone else in the restaurant.  It was the day-to-day errands though, that were really the worst for me.  The family needs food, other things, I have to go out, but it was always at the expense of my self-worth as a parent.  The looks you get from other people when your child is acting out or extremely upset are harsh, to say the least.  One of the things that hit me through the course of all this was, he doesn't  look  like there is anything wrong with him.  Autism is like the invisible disability, you don't see it until you interact with an affected child or adult.  On the surface, he looks like a regular kid.  So to others, it just looks like a badly behaved child and a mother with poor parenting skills.  There were certain stores I would go to regularly as we all do.  I would start to get looks from some of the staff in these places like "oh great it's that woman with the screaming kid again".  That's me.  His father would jokingly suggest I wear a t-shirt that had an arrow pointing to Josh saying "he's autistic".   It probably would have helped. 

One of the worst moments - mind you there is a good list of those, but there are certain stand-outs among them - I can tell you about occurred at a grocery store I had been going to regularly.  The staff at this particular store seemed more understanding than most and a number of the cashiers knew about his issues from talking to me.  One afternoon I was there with Josh,  Zach was at a birthday party so it was just the two of us.  Josh started screaming, as usual, and so I tried to hurry up with what I needed to get.  He'd been screaming for a couple of aisle walk downs, and I got to about the third after he'd started and this woman in the aisle approached me and said "you know, you should leave."  I was stunned.  I told her I was sorry, but that Josh was autistic and he couldn't help what he was doing.  Again "I don't care, you really should leave, you are bothering everyone in the store. "  Ouch.  Never in my life had I ever been told or asked to leave anything, anywhere, for any reason, even with Josh.  I could really hardly believe anyone would be so insensitive especially when I had explained it to her.  I always knew it bothered people, I even knew that a lot of them probably felt the same way this woman did.  But that someone would have the nerve to do what she did to this day shocks me.  I teared up and told her I thought she was the most insensitive person I had ever encountered and she came back with "YOU are being insensitive to everyone else here, just leave!"  Wow... just wow.  I started to cry, and walked away.  I did finish my shopping but I have never felt so awful as I did then.  Was she right?  Of course everyone told me I should have followed her around the store just to annoy the hell out of her and that sounds like a great way to come back at someone like that, unless you are the one in that situation.  I was shocked, sad, embarrassed, guilty, angry - it's hard to sort that all out, especially when the little toad was still screaming.

There was one time that stands in contrast to that though, so it deserves to be mentioned.  One summer I had taken the boys to visit my dad who lives on Vancouver Island.  You have to take a ferry to get there, and the ferry part of the trip alone is about an hour and a half long.  The way up had been pretty un-eventful.  The way back, however, was not.  It was an early trip, since we still had to drive for a few hours after getting off the boat to get home.  Zach and I needed breakfast so we went to the cafeteria to get some food.  Josh started screaming.  Can't get off a ferry, and I didn't want to force Zach to go hungry because his brother was acting up.  So, I stuck it out with him in the cafeteria.  I learned to stop paying attention to all the looks so I was just focused on the kids, doing what little I could to try to get Josh out of his funk.  A woman who was seated at a table with some other people not far from us came over.  She asked if there was anything she could do to help me... said she and her family thought maybe they could take Josh out for a walk or something so Zach and I could eat.  I explained the situation and thanked her very much for the offer but had to decline given Josh's issues.  She told me if there was anything they could do to help to let her know.  Probably one of the nicest things anyone I don't know has ever done for me.  So it wasn't always a matter of being judged harshly by others, but this was the one and only time that anyone has ever taken the time to be kind to me about it. 

Over the last few years, the outbursts have decreased in the public setting significantly.  So much so that we did fly to go to Disney a few times, mind you that's DisneyLAND, not World, since it's only a 2 hr 45 min flight vs 5 hrs and we give him a very, very, tiny dose of Valium before flying.  Doesn't knock him out, but it does keep him quite calm for a couple of hours.   Home and school are a different story, but I can take him to the store these days without outbursts, which is wonderful.  We can go out to eat and as long as I have what he needs to keep him happy and it's usually ok, though there are still occasional times when he just can't manage it for whatever reason and we have to leave.  But it's nothing like it was.  I am grateful for this every day.  There are still many challenges to face with him daily, but at least this is not the nightmare it used to be. 

Next time you are out somewhere, anywhere, and there is an unhappy child and a frazzled mother, please don't be too quick to judge - you never know what might really be behind the all the noise.