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...


How Far Do We Go?

Wasn't planning on another post today, but something happened yesterday that I think is important to talk about here. 

Josh was bitten by another child at school.  This is not the first time it has happened, it was in fact, the third time in the last couple of months, all by the same child.  A child getting hurt at school or being targeted by another child is certainly not unique to special needs children, but dealing with the issue in that respect is an entirely different ball-game on all sides. 

On the one hand, I am in Angry Mother-Bear mode, someone HURT MY CHILD.  We all have that instinct, the need to protect and keep them safe.  It's a big part of our job as parents.  When they do get hurt or their safety is compromised, we feel guilty, angry, scared, sad, you name it.  With typically developing children however, as they grow up, you transition that responsibility for their safety gradually over to them.  We teach them to look both ways before crossing a street, not to touch the stove or iron when it's hot because they could get burned, not to use the stapler on themselves (don't laugh, I did this when I was about 4 or 5 while standing at the counter in a bank with my mom - kids are insane, I actually remember thinking, "I wonder what this would feel like?" and then just stapling my thumb...  ), and we can even teach them to stay out of or away from situations/people that might harm them.  I can't do this with Josh.  He has absolutely no concept of danger, therefore personal safety is also meaningless.  So with him it's completely in the hands of the adults that are responsible for him at any given time, whether it's me, his dad, or the staff at his school.  So part of me is angry with the grown-ups he was with at the time, especially since this has happened before and I was assured after the first time that the staff had a "plan" in place to make sure that this other child would not ever be close enough to Josh for this to happen again.  Clearly that "plan" is not working, since it has happened twice more since then.  But I can't really be angry with them, since as a parent I know perfectly well you cannot always keep things from happening even when you are right there.  I can't be angry with the other child either.  If he were a child without special needs, that would be different.  A child without developmental issues can understand right and wrong.  Children like Josh and this other little boy, cannot.  I feel badly for his parents too, as I know how devastated I would be to find out Josh was hurting another child or children like that, and I know it's not their fault either. 

There is responsibility here though and it lies with those that make decisions about staffing.  In the world of Special Education as in all types of schooling, it always comes down to money and who gets how much and for what.  Giving a child a 1:1 aide costs $$ and many districts will not just hand those out to every teacher who says they need one for one of their kids.  It usually needs to be pretty extreme issues of care/safety to get this.  Josh had 1:1 for many years when he was younger, primarily because his tantrums were so extreme and prolonged, and he engaged in self-abuse behaviors.  In my mind though, any child who is known to be a danger to others should automatically be given 1:1 supervision.  The risk that is run when they are not, is too high for everyone involved.  You risk other children being hurt, as Josh has been.  I am contemplating posting pictures of the bite marks, just so you can see what we are talking about here.  Not sure if I should, I'll decide later, but these bites have left CSI-worthy dental impressions complete with bad bruising that lasts a good week or more - and this was through two layers of clothing, including a sweater.  So I know these bites were hard.  Have you ever been bitten?  It's extraordinarily painful.  All I can say is thank goodness he wasn't in short sleeves when it's happened, as his injuries would have been pretty severe.  

So now what?  Well, after discussing the situation with his dad, we have decided that we won't send him back to school until they can come up with a solution to this problem.  The easiest and most sensible seems to be to provide the extra staff member so that this other child can have the constant supervision he clearly needs. But I have no idea if the school district will do that.  School districts are interesting entities and I think will likely be the subject of another post here down the road.  So the question is, how far do we take this?  As Josh's mother I cannot bring myself to send him knowingly back in to a situation that I now consider un-safe.  I wouldn't be doing my job if I did.  Here in Washington state however, we have a law called the Becca Bill which allows the state to go after parents whose children are absent from school more than a certain percentage of time.  As an example, let me just throw this at you: when Josh gets sick, you can pretty much count on his having to be out of school for at least a week, sometimes a little longer.  This is just the way he is when he gets ill, things tend to linger with him. I get letters from the school, warning me that they will invoke the Becca Bill if he misses any more, and this is after he has been SICK and they know he has been sick.  Seems to be taking the Bill out of its intended context, which is truly negligent parents who don't know where their kids are or simply don't send them to school or provide any alternate form of education.  Regardless, this is what we deal with.  So now I have him home, he is not sick, and I honestly don't know how long it will be before we get some resolution on the issue.  If they tell us he has to come back or they will take us to court using the Becca Bill, do we come back with the pictures I have of these injuries and counter sue?  How far do we take this?  This is what his dad asked me and we decided we were in agreement that Josh's well being was worth it even if it means a court fight.  But really, that would be the last thing any of us needs to be dealing with, let's hope it doesn't come to that.

Behind this surface issue of there needing to be appropriate measures in place to keep our kids safe, there is the more difficult one of dealing with your child being hurt in the first place.  A child who doesn't understand except that he has been hurt a few times now, all I can think is does he wonder why I haven't helped him? Does it scare him? And I just die inside.  Josh first started school when he was three.  In Washington, once children who need special services reach three years old they move from Early Intervention to the school districts.  Three.  I had to take my three year old to a regular elementary school.  The program and teacher were great, but it was still a very difficult thing, especially since at that time he was in the uber-tantrum and self-abuse phase of his existence (we'll talk about that in detail another time).  He had only been at school for about two months when one day I brought him home, was changing him and noticed he was covered in bruises.  Covered.  I was horrified and completely stunned.  I took the rest of his clothes off.... they were everywhere, finger-tip shaped bruises all over his little body, as well as a large, circular pattern of bruising in the center of his back.  I was beside myself, honestly the emotion was the worst combination of heartbreak, rage, and guilt you could ever possibly imagine.  We kept him out of school, had the requisite meetings and were told that the staff working with him to that point just didn't have the necessary training to handle him during his tantrums - they were trying to hold him so that he wouldn't keep hitting himself (which he did at that stage), but in the process held him too hard and at one point tried holding him in a chair, hence the bruising on his back.  So we informed them we had taken photos, and that they had better provide him with staff who had appropriate training.  Turned out that was quite effective.  But the damage was done, no pun intended.  I can't tell you how hard it is trusting others to care for and be responsible for him at this point.  If anyone ever wonders why I will not ever have him take the bus or go to the camps that his teachers keep pressing me about, this post is your answer.  At not yet 12 he has been injured badly enough like this 4 times now - that first incident and now the three bites. 

I know that school is good for him, the routine and the structure work well for him and it keeps him busy.  When he is on breaks for too long he gets bored and then destructive, which is not good, and I can't enforce structure at home the way they do at school, he is very rigid about those worlds being separate.  All I want is to keep him safe and happy and it kills me that he's had to go through all this.

Edit for update:  A meeting with the school district SpEd co-ordinator and the school staff is scheduled for Monday April 19th, we'll see what comes of it then.  In the meantime, he is at home with me.