Thursday, January 26, 2012

Sometimes the parents are the problem...

     I remember when my son turned 3 my pediatrician informed me it was time to take him to see a dentist. I had total approach avoidance. In my mind I could think of no place that could possibly be worse on earth. We are socially friendly with our dentist and every time I saw him I told him that I was afraid to bring my son to see him. When I finally gave in and took him he was amazing, a total rockstar. Turns out the dentist is the easiest doctor to take him to. I have no idea why.
     It was this same approach avoidance that has been the reason that we have not gone to a hotel with him for almost 7 years. We obviously had no way of knowing how he would do, and truthfully didn't want to risk it. Our friends often hop in their cars for quick family getaways and we are always left waving at the backs of those cars as they drive off in to the sunset. Until now.
     This being yeshiva break week, my sister-in-law and brother-in-law are in town. My father-in-law decided that we should all go away to Palm Springs for a few days . My husband was very against the idea saying as always "what is the upside? If it works, ok, but if it doesn't we are two hours from home with a child in full meltdown mode".  I usually go with that flow, but this time I really felt that I wanted my other children to have this experience. We thought about leaving our eldest at home with a babysitter, but truthfully, I didn't want to take a family vacation without my entire family. And so, at the last minute we decided to join.
     We did not get off to a very good start. It took us 45 minutes to convince our son to get in the car. This has never happened before. It occurred to me, at some point the next day, that the reason he didn't want to go was because he knew that he would miss seeing the mailman that day. After 45 minutes we finally got him in kicking and screaming. At this point, I was already crying and thinking "why can't we ever be normal". Thankfully (and truthfully, thanks to our trusty iPad) he settled down and we were on our way.
     As it turns out though, we are morons! You would think, people in our situation would be better prepared. I am apparently an expert at preparing snacks, changes of clothes and technology for the road but not quite so expert at directions. I very diligently went on Mapquest and printed up the directions but did not read them correctly. As a result, of my confusing the words "take" and "towards", we found ourselves near San Diego at which point we finally realized that we had driven 2 hours out of the way. Yes TWO hours out of the way. It should only take two hours to get there! So after some more tears and disbelief we got back on track, turned east and headed on our way again. About 30 minutes into the correct direction, just as we were pulling off the highway to make sure we were in fact going the right way, our daughter, age 21 months, proceeded to vomit everywhere. So yet another 30 minutes later, with her all clean and me now stinking of vomit we got back on the road. Finally, with our destination in sight, just 5 miles from our exit, my husband was pulled over for speeding. SERIOUSLY! And so, as the cop sidled up to my window, I took one look at him, promptly burst in to tears and said to him "would you mind if I told you about my day". Needless to say, with that story, he very kindly let us go, gave us directions to our hotel and suggested we buy a Garmin. Thanks for the suggestion buddy, wish you had given it to us 4 hours ago!
     Keep in mind that we hadn't even gotten to the scary part yet, the hotel. The good news is, it wasn't too bad. As far as first experiences go, we did OK. Here is the thing, if we let our son do what he wants, follow him around while he does it and don't force him to do the things we think he should want to do, it can work. It gets a little complicated when our other children want to do regular things and we need to split our attentions (yes the life guard had to jump in the pool and rescue our 4 year old) but overall we survived the experience and even came home smiling. My son even said that next time he is going to sleep in a hotel and go swimming again. Success? I think so...
     Lessons to be learned: 1) buy a GPS 2) bring someone to help
With those two things in place, we may even try this again. I hope it won't take another 7 years!

Tuesday, January 17, 2012

The Sky's The Limit

     I don't think I was always a glass half empty kind of girl. I am not suggesting that I was ever a positive outlook glass always full kind of girl either but I probably fell somewhere in the middle. Sometimes positive and sometimes negative. I will say though, that some of my more recent experiences in the past few years have changed that. Where I was once solidly in the middle, I would definitely say that today, I have slipped over the line and am now pretty ensconced in the glass half empty world.
     As a result, I find that I often focus on the difficulties and the challenges of my situation and I do not often enough stop to see the good. I have a friend, who always tells me that in the business of raising our special needs children it is always one step forward and two steps back. Every time she says that, I am reminded of that annoying game I used to play in camp called John Jacob Jingelheimer Schmidt (or something like that) where you would walk forward singing a song and then double it up backwards and end up where you started. That game really must have annoyed our counselors to no end since it always took so long to get where we were going. I would say that game is a perfect metaphor for my life. I somehow feel like I am on a moving sidewalk but it is not really taking us forward. In a sense I am often watching others pass me by but never quite reaching my goals or getting where I am hoping to be.
     This week though, felt different. I mentioned once, in a previous posting, that it is difficult to describe what is is like when my special needs child succeeds at something. It is euphoric, it is better than anything you can imagine. It is that much greater because I know just how difficult it is for him to do things that are so simple and obvious to others. If you bumped into me just two weeks ago you would have probably noticed that I was having a  complete melt down (there were quite a few people to have that misfortune). All I could think was "I will not make it through this weekend or this life". I was in a pretty bad place. And then, just when I felt I really couldn't any more, my son turns around and shows me that we can.
     For years, and I mean that literally, we have been trying to get him fully toilet trained. (I hope this isn't too much information for some of you but I really want to share it.) He has been peeing on the toilet already for a few years but has been having a lot of difficulty with the other part. I really thought that I would be cleaning up poop accidents for the rest of my life.  Then suddenly, one day, he just plain figured it out. It took a lot of hard work on all of our parts but it felt like a miracle and now (knock on wood) I have not cleaned even a single accident in almost 2 weeks. It is literally astonoshing. He wakes up in the morning, takes himself to the toilet, does his business and then comes and lets me know what he has done. You know, like any normal kid! I truly never thought we would be here, and now, we are.
     If that is not enough, in this same two week period  my son, for the first time basically ever, has expressed interest in a friend. He has been trying to play with our friends daughter for the last two weeks. While we have a ways to go with social interactions, it is possibly the first time that he has sought out a friend and really wanted to play with her. It is amazing. But wait, there is more! Last night, for the first time ever, he asked me to read him a book and he sat through the entire story. Twice! I have never been able to read him a book before because generally after the first page (if we even get that far) he becomes uninterested.
     I know I usually use this as a forum to speak about the challenges and struggles that we face but I really wanted to share the successes as well. Often they are few and far between, but these amazing achievements can really help to carry me through the next few storms. They will make me smile and believe that really, the sky is the limit and if we simply believe in Yonatan and support him, who knows what he can achieve. Hey, one day he may even be The Post Master General!

Sunday, January 8, 2012

Parenthood Vs. Parenting

     I love TV. I think it comes from my childhood during which, TV played a big part. We used to come home from school, throw our knapsacks in the entryway and race to get the best spot in front of the tv, or idiot box, as my mother was known to call it. (Just so you understand, the best spot was about 2 ft in front of the TV on a pulled up dining room chair. I must say it is a miracle that we are not all blind). When you were home sick from school, you would grab your blanket and lie down in the corner of the couch with the remote and watch for the whole day. I am pretty sure I faked quite a few illnesses just to enjoy that corner for a day here and a day there. The truth is, it is not just TV that I love, I love movies and reading as well. I think that what I like is to sit and lose myself in somebody else's story and troubles for a little while. I usually prefer fiction because then, when it is over I can leave it behind. I don't have to turn it off and continue to think about the people in the stories and wonder how their lives are today. When I watch a TV show, read a book or go to a movie, all I want is to turn off my own life and my own struggles for the duration of the story telling and be absorbed into their storyline.
     The thing about these stories though, is that sometimes they mirror your life but the similarities get lost in the absurdities. What I mean is, that often I watch in disbelief, and think to myself "could the writers really be that stupid?". I remember in ninth grade my teacher teaching me the concept of "suspending your disbelief" when reading a fictional novel. These days, I ofter hear her voice (no idea what her name was anymore) repeating that line and I think to myself, she couldn't possibly have known how far fetched things would be in todays day and age. It is getting harder and harder for me to do this.
     A few weeks ago a friend of mine suggested that I start watching Parenthood. My cousin was kind enough to let me use her Netflix account and so I started watching the first season. Before I continue, I will admit, that I have been completely drawn in and have stayed up way too late (anyone who knows me knows that means until 10 pm) on too many occasions because I keep having to watch "just one more episode".  My friend was right, it is a good show. I am enjoying it. At the same time though, I keep thinking to myself, seriously? Are the writers that stupid?
     Early on (in episode 1), we are presented with parents who have a son who is odd. I am guessing he is about 7 or 8 years old. I believe in episode 2 they find out that he has Aspergers. Not to knock anyone whose child is diagnosed on the later side of things but if your child has been wearing a pirate costume to school everyday for years it really shouldn't take you that long to figure out that something is not right.
    Watching this show is like watching my life on speed in an alternate universe. It is as if they have the components but the picture is just not coming together. For example, in a single episode they manage to hire a behaviorist, on the first try she gets the kid to play a board game, go to the park with her and he makes a friend who he supposedly plays four square (no idea what that game is by the way) with, for two hours. Where do I start? Is it with the fact that in reality it can take a behaviorist weeks to gain a childs trust? Or that a child who has not had a friend ever does not suddenly play a game with a complete stranger for 2 hours or that no behaviorist in one day plays with the child at home, then at the park for two hours and then stays during dinner? Like I said, I like the show but I am having some trouble suspending my disbelief.
     I think that what this highlights for me is what I often feel. When you are living in something and experiencing something unless someone is sitting in your seat they can't possibly really understand. They can listen, they can care, they can offer advice but they can not possibly really get it. This is true of any situation, not just the one I find myself living in. The writers of this show are attempting to mimic the life of a family dealing with this but truthfully, they just don't really get it. They can research it, they may have even spoken with families who deal with this but the storyline somehow leaves me wanting. Just like it was truly difficult to believe that Meredith Grey (of Grey's Anatomy) after drowning, could live with full brain function after having been dead for 3 hours, it is difficult to believe this entire story line.
     I think what I am trying to say with this TV metaphor is that people don't get it. To be clear, I don't mean this in a negative way. It isn't their fault, honestly it is their blessing. I hope they never do have to get it. But still, often, it can be a lonely existence. It is lonely simply becuase while the people around you may really be trying to understand, they just can't.
In case you are wondering, yes I still watch Grey's Anatomy and yes I am still staying up too late enjoying Parenthood....