Close your eyes for a moment and imagine that feeling you have when you are taking your kids to a place where you know they will have to be relatively well behaved and quiet. Focus in on that nervousness you have in anticipation of getting there and the worries you have on your way. Usually, you can't even relax until it is over. Now, open your eyes and magnify the feeling you are experiencing by about 1,000 and you might maybe possibly feel a tiny bit of what I feel in that same situation. I don't mean to minimize what all parents go through when they get a plane with their kids, or go to a restaurant or take them someplace full of adults. It is nerve racking for everyone. The difference is though, that for you the chance of having a problem is a possibility whereas for me, it is usually a sure thing.
Last night and today was purim. My husband and I spent quite a bit of time trying to figure out how best to approach the hearing of the megillah on Wednesday night. Most families dress their kids up and go but for us, it is obviously more complicated. After much discussion, we decided to "divide and conquer". I was going to take the younger kids to an early reading at someones home and my husband was going to take our oldest to shul for the carnival. This way he could have some fun in a place he loves, and then my husband could catch a later reading for himself. It seemed like a workable plan. And then, just as I was trying to get out the door, my oldest said he wanted to come too (which of course excited me since it meant that he wanted to take part in Purim) and so I said no problem, lets go, and the whole family of 5, plus 1 iPad for distraction, jumped in the car.
Let me preface by telling you that we were in the home of a family that we are closely related to and where my son is very comfortable. You would think, that being the case, that I could relax. Not so much. I will tell you, that he was pretty good. There were no meltdowns, no screaming so loud that no one could hear the megillah, he didn't bother a single other child and yet, the experience was exhausting. He took up residence in their pantry, fridge and freezer. He proceeded to eat them out of house and home, (which I of course allowed in the name of fulfilling the mitzvah of hearing the megillah) to open every other cabinet in their kitchen and he required constant supervision by both me and their live in babysitter. I would like to believe that I heard the whole thing but to be honest, as my dad would say, I pretty much took it for "pass/fail".
And so, when the megillah reading was over and a few people came over to me to tell me what a great job he did all I could do was look at them as if they had grown second heads. While they were not wrong in saying that, for me, it was still a totally hands on, stressful and exhausting experience. I am not even sure if 24 hours later I have entirely recovered.
What I later tried to explain to a friend of mine was that what I miss most of all is that feeling of normalcy. I looked around at all the women sitting there, who essentially managed to sit the whole time with barely any interruption from their kids, and felt jealous. Now, I am sure, if you asked them they would describe their experience as stressful too. They might tell you that they worried about their kids making too much noise, or that they missed a verse or two as a result of their kids, but they basically had a normal experience.
Since last night I have been trying to dig back as deep as I can to remember what it feels like to just be normal. To do all of things that people do and experience them in the same way. I want to say that it is a feeling I miss but truthfully, I am not sure I even remember it or that I would recognize it if it smacked me in the face. To be completely honest, I don't need to be normal I just wouldn't mind being somewhere on "the spectrum".
Thursday, March 8, 2012
Monday, February 27, 2012
My Other Man
I am not easily amazed. Often, I am not even easily impressed. I am somewhat of a cynic and often expect the worst. It is rare for me to really be wowed by someone. Occasionally though, I am.
I am currently sitting in the hospital with my husband's grandfather who is 91 years old. He fell about 10 days ago and fractured his pelvis. This is the third in a series of falls over the last few years. The first time he fell and broke his hip, I cautioned my husband that it is very difficult for elderly people to recover from such a break and that he should prepare himself for what may come. He was furious at me. Unfortunately though, I had seen it quite a few times and knew that often, the outcome of a broken hip is not a good one for an elderly person. Well, as it turns out, I was wrong. It was an amazing recovery. He healed and some might say, got even better.
About 6 months ago he fell again, another broken hip. By this time I had learned my lesson and told my husband, that just as he has done it before, his grandfather would do it again. We could expect a full recovery and sure enough, we all watched it happen. Another remarkable recovery. Just two weeks ago, when I went to his house to visit with him, he proudly told me that he had walked to and from the store by himself. He was having a great day.
And then 10 days ago, he fell again. This time he fractured his pelvis. Since then, he has been in the hospital and it has not been an easy time for him. He is very weak and in tremendous pain. It is hard for those of us who love him to watch him suffer so. We are worried about him because he is in pain and because his spirits are low.
But here is the thing about Zaidy. He is truly amazing. He has been through so much in his life and he is a true survivor in every way. He never gives up and and has the most incredible will to live. It is awe inspiring. But more than that, it is a lesson for me every day. He has shown me that no matter what, you can never give up. That life deals you difficult cards but you must play them. That being strong is a must and that making it through is the only option. I recently told him that had I lived during the time of the Holocaust I don't think I would have survived it. He answered me that you have no idea what the human body is capable of.
I have been having a pretty bad day today. Lots going on, some tough decisions to make about my son. I have been sick for a few weeks with something I can't seem to shake and so when I woke up this morning with a splitting headache it seemed the only course of action was to have a good cry. I had a pretty big crying jag and have been feeling pretty gloomy all day. But as I sit here, doing my "shift" with Zaidy, it occurs to me that I really need to take a page out of his book. I could learn quite a bit from this man who simply won't quit. It probably wouldn't hurt for me to try to take a positive spin on life. To emulate him. The truth is, I am not sure yet exactly how to apply the lesson he is teaching me right now to my life, but I am going to figure it out. I will figure it out because I know, that if I can get even an ounce of his spirit I will be doing pretty ok.
And I will tell you this, he just turned to me and asked me if my parents are proud of me. When I answered him that I think so and that I hope so he said to me "that is not enough. If you were my daughter I would tell everyone how wonderful you are". Not a bad way to end my crappy day. I am going home with a big smile on my face.
I am currently sitting in the hospital with my husband's grandfather who is 91 years old. He fell about 10 days ago and fractured his pelvis. This is the third in a series of falls over the last few years. The first time he fell and broke his hip, I cautioned my husband that it is very difficult for elderly people to recover from such a break and that he should prepare himself for what may come. He was furious at me. Unfortunately though, I had seen it quite a few times and knew that often, the outcome of a broken hip is not a good one for an elderly person. Well, as it turns out, I was wrong. It was an amazing recovery. He healed and some might say, got even better.
About 6 months ago he fell again, another broken hip. By this time I had learned my lesson and told my husband, that just as he has done it before, his grandfather would do it again. We could expect a full recovery and sure enough, we all watched it happen. Another remarkable recovery. Just two weeks ago, when I went to his house to visit with him, he proudly told me that he had walked to and from the store by himself. He was having a great day.
And then 10 days ago, he fell again. This time he fractured his pelvis. Since then, he has been in the hospital and it has not been an easy time for him. He is very weak and in tremendous pain. It is hard for those of us who love him to watch him suffer so. We are worried about him because he is in pain and because his spirits are low.
But here is the thing about Zaidy. He is truly amazing. He has been through so much in his life and he is a true survivor in every way. He never gives up and and has the most incredible will to live. It is awe inspiring. But more than that, it is a lesson for me every day. He has shown me that no matter what, you can never give up. That life deals you difficult cards but you must play them. That being strong is a must and that making it through is the only option. I recently told him that had I lived during the time of the Holocaust I don't think I would have survived it. He answered me that you have no idea what the human body is capable of.
I have been having a pretty bad day today. Lots going on, some tough decisions to make about my son. I have been sick for a few weeks with something I can't seem to shake and so when I woke up this morning with a splitting headache it seemed the only course of action was to have a good cry. I had a pretty big crying jag and have been feeling pretty gloomy all day. But as I sit here, doing my "shift" with Zaidy, it occurs to me that I really need to take a page out of his book. I could learn quite a bit from this man who simply won't quit. It probably wouldn't hurt for me to try to take a positive spin on life. To emulate him. The truth is, I am not sure yet exactly how to apply the lesson he is teaching me right now to my life, but I am going to figure it out. I will figure it out because I know, that if I can get even an ounce of his spirit I will be doing pretty ok.
And I will tell you this, he just turned to me and asked me if my parents are proud of me. When I answered him that I think so and that I hope so he said to me "that is not enough. If you were my daughter I would tell everyone how wonderful you are". Not a bad way to end my crappy day. I am going home with a big smile on my face.
Saturday, February 4, 2012
Incredibly Loud
If you read my last post you know that last Thursday night was not a pretty one in my home. As I reported I was at the end of my rope, My eldest was way overtired and my husband was still at work. My son, you may already know, has a tendency to scream whenever he feels like it. As you may also know, It is not a pleasant sound. It is kind of blood curdling to be honest. On a good day, it happens multiple times but can be mostly ignored but on a bad day, it is a constant. We like to think of it as the sound track to our lives. It is like a combination of heavy metal and hard core rock at the highest volume possible. As you can imagine, it is pretty painful to listen to.
Back to Thursday night. There I was alone with all three children, exhausted and sick and he was screaming on the top of his lungs repeatedly. At that point, I pretty much felt like I had no other course of action but to scream back. Yes I know, counter productive, against everything they teach me in behavior therapy, but seriously as I said, END OF MY ROPE. So pretty much, you have the picture. It went something like this, he let out a few big screams and I would scream back at him saying "I CANT TAKE IT ANYMORE JUST STOP ALREADY!." As I said, not a pretty picture. I really couldn't think of anything but getting him to stop.
Here is what I was not thinking of, and probably have not thought about enough, my other kids. As this screaming fest was going on, my four year put is hands over his ears, clenched up his entire body and screamed "I can't take the screaming any more!". He was referring to both me and my son but it occurred to me at that moment, that while I can control my screaming, my oldest can not. I started to think about the impact this screaming is having on my other kids. After that, my four year old spent the rest of the night telling me he hated his older brother, he is so mean, he only loves me, his father and his little sister not his brother and so on and so forth. Here is the thing, I don't think that kind of talk is unique to our family and our situation. Every body hates one or all of their siblings and parents at some point in their lives. The difference that I can see, and that I fear most of all, is that while usually kids get over it and grow to be close and love their siblings, my kids may not. They will have this resentment and anger towards their brother, and truthfully their parents, forever.
While it is hard as a parent to juggle kids, home life, marriage and work it is exponentially more difficult to juggle a special needs child in that mix too. The nature of the beast (so to say) is that he/she really truly runs your life. Every decision that you make from the moment you wake up to the moment you go to sleep in some way revolves around that child. How is it possible that your other kids won't feel shafted, no matter how much you try to over-compensate. Couple that with the resentment they are going to have towards that sibling, as well as the discomfort they may feel about him and it is a really scary future.
So while most of your kids will hate each other one day and love each other the next, I spend all day worrying about the future. Will my other kids ever get over it. Will the screaming (and other difficult behaviors) impact them in ways that I can't see and won't be able to see until it is too late? Will they gain from this experience and grow up to be better people for it? Or will they grow up angry and sullen and hate me and their brother. It is really pretty scary to think about.
The truth is, that we have countless opportunities to screw up our kids while we are in the business of raising them, but I sometimes feel like the scales are already not tipping in my favor.
Back to Thursday night. There I was alone with all three children, exhausted and sick and he was screaming on the top of his lungs repeatedly. At that point, I pretty much felt like I had no other course of action but to scream back. Yes I know, counter productive, against everything they teach me in behavior therapy, but seriously as I said, END OF MY ROPE. So pretty much, you have the picture. It went something like this, he let out a few big screams and I would scream back at him saying "I CANT TAKE IT ANYMORE JUST STOP ALREADY!." As I said, not a pretty picture. I really couldn't think of anything but getting him to stop.
Here is what I was not thinking of, and probably have not thought about enough, my other kids. As this screaming fest was going on, my four year put is hands over his ears, clenched up his entire body and screamed "I can't take the screaming any more!". He was referring to both me and my son but it occurred to me at that moment, that while I can control my screaming, my oldest can not. I started to think about the impact this screaming is having on my other kids. After that, my four year old spent the rest of the night telling me he hated his older brother, he is so mean, he only loves me, his father and his little sister not his brother and so on and so forth. Here is the thing, I don't think that kind of talk is unique to our family and our situation. Every body hates one or all of their siblings and parents at some point in their lives. The difference that I can see, and that I fear most of all, is that while usually kids get over it and grow to be close and love their siblings, my kids may not. They will have this resentment and anger towards their brother, and truthfully their parents, forever.
While it is hard as a parent to juggle kids, home life, marriage and work it is exponentially more difficult to juggle a special needs child in that mix too. The nature of the beast (so to say) is that he/she really truly runs your life. Every decision that you make from the moment you wake up to the moment you go to sleep in some way revolves around that child. How is it possible that your other kids won't feel shafted, no matter how much you try to over-compensate. Couple that with the resentment they are going to have towards that sibling, as well as the discomfort they may feel about him and it is a really scary future.
So while most of your kids will hate each other one day and love each other the next, I spend all day worrying about the future. Will my other kids ever get over it. Will the screaming (and other difficult behaviors) impact them in ways that I can't see and won't be able to see until it is too late? Will they gain from this experience and grow up to be better people for it? Or will they grow up angry and sullen and hate me and their brother. It is really pretty scary to think about.
The truth is, that we have countless opportunities to screw up our kids while we are in the business of raising them, but I sometimes feel like the scales are already not tipping in my favor.
Thursday, February 2, 2012
Knowing When To Stop
I'm sick. Nothing serious, no big deal, but feeling lousy. Just a sinus infection with a cough attached. You are probably wondering why I am sharing this with you? Who cares? I hear that, but I am sitting here trying to remember a time when I was sick and actually had the chance to do what it takes to get better. I am trying to recall what it felt like to just get into bed and take care of myself.
Probably, this was the kind of thing that with some antibiotics and a day in bed would have been over before it really even began. I started off right, got the antibiotics and even remembered to take them. Somehow after that, it all went to pot. The kids did not cooperate, the job did not cooperate and the husband didn't either.
I obviously had to work everyday, which meant no rest during the day when the kids weren't around. My kids decided this week that each of them should be up at least one time during the night every night. My oldest thought that yesterday morning at 5 and this morning at 4 am were his wake up times. I might have ignored him except that I heard him waking up our houseguest (his uncle) and felt bad and so I jumped out of bed. My husband has been working late every night this week which has meant it was all me all the time in the evenings. Basically it has been non stop. And so, what should have been a sinus infection that would have been over in a day has turned into a cough that won't quit and a pulled muscle in my back from all the coughing. It has been compounded by exhaustion and all around crankiness.
I am not telling you this to complain but rather, because I have learned something from this. The bottom line is that being a Mom is really hard work especially when you also work full time (not to mention when you are measured by a quota). It is non stop! As a result what happens is, we don't. We simply don't stop because there isn't any time to. You are like a mouse on a wheel and usually you either can't figure out how to get off or you are afraid that if you do it will be too hard to get back on. Turns out, that is a mistake. If only, I had taken a few hours for myself and let myself get better I probably would be better by now. In the end, I did myself a disservice because now I really can't move because everything hurts and I haven't slept all week. Mistake, big mistake!
And so, I am hoping to learn from this mistake. I am hoping that the next time I am feeling lousy, I will be smarter and that I will encourage my friends to be smarter too. This way, hopefully, I won't have a repeat of the disaster that was this evening in my home. All of my children screaming at me and me yelling right back at them. (btw- it honestly could have been the other way around). No body was happy and least of all me.
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!
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!
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....
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....
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