I once wrote, in a previous blog, that it takes a city to raise a special needs child. Apparently, there are times when it can actually take 2. We are back home from a long journey. It started back in October when we began to explore the possibility of taking our son to this program. There was a lot of decision making and planning involved in doing this. It was not an easy one to make or to implement. As I have said before, like most parents, we would do anything for our children and so we made it work but, it was not simple.
When you make a decision, for which you know that you will need a lot of help implementing, it can be extrememely stressful. It is one thing to decide to do something that affects only you and therefore all of the responsibilty falls on you. It is an entirely different thing to make a decision that impacts many others. For some of those people you can try to anticipate the impact but for many others you dont even realize that they will have a role.
I would say that our decision was the right one and that this program was a success. Both my husband and I learned a ton and so did our son. We have already begun the process of implememting what we learned there and are excited about this new path we are taking. We have already seen growth and are hopeful that it will only continue. We are exceedingly proud of Yonatan and how hard he worked while he was away. I am in awe of his strength and willingness to learn. I am so amazed by my other kids who even though they acted out and had a hard time with all of the upheaval, were actually pretty awesome.
As I look back on the past six weeks there are many people to whom I am extremely grateful and want to thank. I don't want to list anyone by name, because who knows if they want their names permanently seared into the internet, but nonetheless I would like all of you to know that you have had a hand in helping us with our sons growth. To all of my friends who listened to me endlessly and tirelessly talk about this before, thank you. To everyone who did carpool or had us for shabbos, thank you. To all of my parents neighbors (some right next door and some around the corner and related) who didn't realize that being nice to Yonatan once meant mating for life and daily visits, thank you. To all of my friends who helped out with playdates, thank you. To all of my nieces and nephews who came over all of the time to play, Yonatan had a blast! Thank you. To the owners of the Makolet and the pizza store, who might actually be thanking us for the boost to their businesses (or mourning our departure), thank you. To my friend in Israel who visited me every day, thank you. To my brothers and sisters for being so helpful, thank you.
A special shout out though to 4 people. I want to thank my in laws for watching my kids here, and even taking them in jet lagged and straight from the plane. For people who really like to sleep late, that is a huge deal. For helping us make this happen and for the simple fact that when we planned it, I knew I could count on you to help out. Thank you. Finally, to my parents who totally rose to the occasion. Living with Yonatan (and me for that matter) is not easy. You were amazing. I am so happy that you had this time together with him but I know that it was hard and you didn't let that show at all. He had the best time with you and you really made it possible for us to do this. So, thank you. You really earned that vacation.
Tuesday, May 15, 2012
Wednesday, May 9, 2012
A Chance Encounter
I once sat at a table with some people where one of them was telling a story about a family with many children who adopted another baby. When the child was two they discovered that he was autistic. The person telling the story commented on how amazing it was, that the family had decided to stick with it and keep the child. I remember thinking at the time, "what is so amazing about that?". I assumed that by then they loved the child like their own and anyway, this is not a choice to make. We are given the children that we are given and they are ours to love, no matter what.
Today I met a woman who has a downs syndrome child. The child is 2 years old and adorable. We got to chatting and I learned that her and her husband had adopted their daughter at birth. She has three older children and as she put it "their baby just fell into their lap". I looked at her and said to her that she was amazing. That while I love my son to death and wouldn't change him or trade him in for the world, I don't know that I would be able to say that I would have chosen to do this every day. Now that I am doing it, I wouldn't turn back, but making the choice?!?!
She looked at me and said that she is amazed by me. She said she had the choice and spent time considering it whereas I, did not. She thought that I was the one to be commended. It occurs to me that we are really only able to see our lives through our own vantage point. I look at her, and am in awe. I can not even begin to understand the strength it takes to decide to take on this challenge. I would like to believe about myself that I would have been that wonderful, but most of you who know me know, that I probably wouldn't have been. Truthfully, I am honest enough with myself to say that I likely wouldn't have been.
It was fascinating for me to see myself and my life through her eyes for a minute. I don't mean whether or not I should be commended or that someone should think that it is wonderful that I am Yonatans mom. It is just who I am. It is more, that it never would have occurred to me to look at this as something I have chosen. It is just something that is, it is simply my life. I guess I am more shocked, that there are people out there who would find themselves in my position and say this is not something they can do or that they can't be that person or that mom (I am not judging, please do not misunderstand. It takes an amazing amount of strength and courage to admit that you can not be the best mother to your child). I am even more amazed, that there are incredible people out there who can and would choose to be that great. To be honest, I aspire to be her and I think her daughter is the luckiest child in the world.
Today I met a woman who has a downs syndrome child. The child is 2 years old and adorable. We got to chatting and I learned that her and her husband had adopted their daughter at birth. She has three older children and as she put it "their baby just fell into their lap". I looked at her and said to her that she was amazing. That while I love my son to death and wouldn't change him or trade him in for the world, I don't know that I would be able to say that I would have chosen to do this every day. Now that I am doing it, I wouldn't turn back, but making the choice?!?!
She looked at me and said that she is amazed by me. She said she had the choice and spent time considering it whereas I, did not. She thought that I was the one to be commended. It occurs to me that we are really only able to see our lives through our own vantage point. I look at her, and am in awe. I can not even begin to understand the strength it takes to decide to take on this challenge. I would like to believe about myself that I would have been that wonderful, but most of you who know me know, that I probably wouldn't have been. Truthfully, I am honest enough with myself to say that I likely wouldn't have been.
It was fascinating for me to see myself and my life through her eyes for a minute. I don't mean whether or not I should be commended or that someone should think that it is wonderful that I am Yonatans mom. It is just who I am. It is more, that it never would have occurred to me to look at this as something I have chosen. It is just something that is, it is simply my life. I guess I am more shocked, that there are people out there who would find themselves in my position and say this is not something they can do or that they can't be that person or that mom (I am not judging, please do not misunderstand. It takes an amazing amount of strength and courage to admit that you can not be the best mother to your child). I am even more amazed, that there are incredible people out there who can and would choose to be that great. To be honest, I aspire to be her and I think her daughter is the luckiest child in the world.
Thursday, May 3, 2012
There Are No Magicians
The thing about having a special needs child is that the day you realize that this is not an illness that goes away or something to be cured, is the best and most liberating day of your life. A few years ago, when my son was maybe somewhere between 3 and 4 years old, I asked my pediatrician to please tell me when enough was enough and when I was simply spinning my wheels. When you have an undiagnosed child your life can become about chasing the "diagnosis". You go from specialist to specialist, lab to lab and hope for some answer. At the time he told me that we weren't yet at that point and promised that he would tell me when it was time to stop searching. When that day finally came, while it was hard to stop, it brought with it a sigh of relief. When you stop searching and begin realizing that in most of these cases it is not the diagnosis that counts but rather the treatment, you can begin to shift your focus to giving your child every possible advantage.
While it was obviously extremely important for me to know that I was doing everything I could for him and that he was receiving the best therapies available to him, I no longer felt the pressure to "cure" him. I began to hope for the same thing that I hoped for all my children, which was to simply provide them with the tools to live the best possible life they could. While my husband and I will do anything in our power to help him (and his siblings for that matter) we clearly understand that there are no miracles.
The decision to bring Yonatan to this program in Israel was not so that we could "cure" him. As far as we are concerned, he is not in need of a cure. He may struggle more than other children to do what comes naturally to most but that is not because he is unwell. Our goal was simply to try anything possible to give him every tool and every advantage in life. Before we left to Israel, I sat at a table with a bunch of friends and was asked by one of them what I expected out of this program. I answered him that my husband always says "if you have no expectations, you can never be disappointed" and so truthfully we were going with out any expectations. His response to me was brilliant. He said that we should hope that at the end of the month Yonatan was equally as expert at delivering the mail in Jerusalem as he was in Beverlywood. (FYI- if that was our goal, we have totally achieved it!)
Having special needs is not an illness. It is not a cancer that can be cured with chemotherapy and radiation. It is not a parasite that can be killed with some anti-biotics or appendicitis which needs a quick surgery and has you back at work the next day. It is simply who you are. Some people are tall and some short. Some ugly and some beautiful. You might have brown eyes and your brother or sister blue. It is simply part of your genetic make up.
When we embarked on this journey we hoped as parents, that doing this would provide only good and do no harm. Which is exactly what is has done so far. He is learning a lot and working very hard. He has incredible therapists who believe in him and his abilities. As his parents we are learning valuable skills. I fear that we may have provided false hope to people out there. We are constantly asked how he is doing and what changes we see. People want to know if it is "working". My answer to them is simply to say that there is no magic wand to wave, no fairy dust to sprinkle. Yonatan will always be Yonatan. He may speak more clearly or learn to read and write he may honestly be whatever and whoever he chooses. We hope that every journey we take with him and every different approach we try will only serve to help him. To us though, he is perfect and so we are not looking at this and wondering if it is working. We are simply proud of him for trying every single day.
While it was obviously extremely important for me to know that I was doing everything I could for him and that he was receiving the best therapies available to him, I no longer felt the pressure to "cure" him. I began to hope for the same thing that I hoped for all my children, which was to simply provide them with the tools to live the best possible life they could. While my husband and I will do anything in our power to help him (and his siblings for that matter) we clearly understand that there are no miracles.
The decision to bring Yonatan to this program in Israel was not so that we could "cure" him. As far as we are concerned, he is not in need of a cure. He may struggle more than other children to do what comes naturally to most but that is not because he is unwell. Our goal was simply to try anything possible to give him every tool and every advantage in life. Before we left to Israel, I sat at a table with a bunch of friends and was asked by one of them what I expected out of this program. I answered him that my husband always says "if you have no expectations, you can never be disappointed" and so truthfully we were going with out any expectations. His response to me was brilliant. He said that we should hope that at the end of the month Yonatan was equally as expert at delivering the mail in Jerusalem as he was in Beverlywood. (FYI- if that was our goal, we have totally achieved it!)
Having special needs is not an illness. It is not a cancer that can be cured with chemotherapy and radiation. It is not a parasite that can be killed with some anti-biotics or appendicitis which needs a quick surgery and has you back at work the next day. It is simply who you are. Some people are tall and some short. Some ugly and some beautiful. You might have brown eyes and your brother or sister blue. It is simply part of your genetic make up.
When we embarked on this journey we hoped as parents, that doing this would provide only good and do no harm. Which is exactly what is has done so far. He is learning a lot and working very hard. He has incredible therapists who believe in him and his abilities. As his parents we are learning valuable skills. I fear that we may have provided false hope to people out there. We are constantly asked how he is doing and what changes we see. People want to know if it is "working". My answer to them is simply to say that there is no magic wand to wave, no fairy dust to sprinkle. Yonatan will always be Yonatan. He may speak more clearly or learn to read and write he may honestly be whatever and whoever he chooses. We hope that every journey we take with him and every different approach we try will only serve to help him. To us though, he is perfect and so we are not looking at this and wondering if it is working. We are simply proud of him for trying every single day.
Thursday, April 26, 2012
The Half Time Show
I figured many of you might want an update as to how things have been going on both coasts. So here goes...
Leaving was torturous. As we got ready to put our oldest to sleep the night I was leaving with the younger kids, my husband and I sat down with him so I could say good-bye. While I know he understood that he was staying to go to school there, he clearly thought it was some kind of punishment. He became hysterical and started begging to be allowed to go home. He even told us to "give him one more chance" which is the line he uses when he is being punished. We tried to explain to him that this was a special experience and that we were doing this so that he could learn more but to be honest, it was horrible. To quote my husband "He literally ripped the hearts out of our chests" that night. After a while he finally conked out from all of the crying. I on the other hand, felt exhausted from all of the crying, but had 15 hours of flying with 2 little kids ahead of me so falling asleep was obviously not an option.
The flight went as well as could be expected. My middle one slept around 5 hours and the baby about 6. If you are doing the math, you realize that still left 10 hours of entertaining to do! We made it home though and as my son crossed the threshold into our house, he turned to me and said "wow Mommy, it feels so good to be home!" I couldn't have agreed more. Unfortunately, I was only home for about 8 hours before I had to turn around and head back to LAX for my trip to Chicago. The fact that I was able to function as well as I did at that conference, considering the lack of sleep, was even shocking to me.
I can tell you, that while I can see the anxiety that my two younger ones have knowing that I will be leaving again soon, it was still definitely the right decision to make. They are back in their routine, happy to be home and thankfully over their jet lag. I am able to give them my attention and do special things with them. They are sad without their dad and brother around but we skype as often as we can and they are comforted by their routine. I know that had we all stayed in Israel they would have definitely been shafted.
Yonatan has also adjusted well to the program. He goes happily and it seems is learning quite a bit. He is the new mayor of my parents neighborhood and has been charming all of the neighbors and nearby relatives out of their chocolates and bottles for recycling. My husband tells me that it has been an amazing bonding experience for them and that he, my husband, is learning quite a bit as well about how to interact and teach our oldest. He misses us, and both of us are lonely without each other but at least we will see each other for 2 days next week.
Part of me is very excited to go back and be a part of the program. I am looking forward to seeing first hand what my husband is talking about. The other part of me though is so tired just thinking about making the trip again. I have been tempted a few times to beg my husband to just finish out the remaining two weeks so that I don't have to take that flight again.
The most amazing part of it all though is seeing how much we all miss him. Sometimes living with a special needs child can be extremely overwhelming. They can really take up all of the air in the house. You sit and wonder "what would it feel like if he were normal and just like any other kid, what would the house feel like then". The answer is, it would feel very quiet. Honestly, it would feel too quiet. Yonatan is a part of the fabric that makes up our home. Our home would not feel the way it does if he were different in any way. He is perfect and helps to make us the family that we are. Being without him here, for this long, feels empty. His brother told me last night how happy he is that when I come back from Israel next time I am bringing him with me because he really misses him. His little sister lights up at the sight of him on skype and my babysitter told me today that the house is too quite without him and that she can't wait for him to come home. I can't tell you how much all of that makes me smile.
Having said all of that, I don't want any of you to think that my house is suffering from too much quiet. My other children have dramatically increased their volumes in his absence. It seems that they were happy to fill the void!
Leaving was torturous. As we got ready to put our oldest to sleep the night I was leaving with the younger kids, my husband and I sat down with him so I could say good-bye. While I know he understood that he was staying to go to school there, he clearly thought it was some kind of punishment. He became hysterical and started begging to be allowed to go home. He even told us to "give him one more chance" which is the line he uses when he is being punished. We tried to explain to him that this was a special experience and that we were doing this so that he could learn more but to be honest, it was horrible. To quote my husband "He literally ripped the hearts out of our chests" that night. After a while he finally conked out from all of the crying. I on the other hand, felt exhausted from all of the crying, but had 15 hours of flying with 2 little kids ahead of me so falling asleep was obviously not an option.
The flight went as well as could be expected. My middle one slept around 5 hours and the baby about 6. If you are doing the math, you realize that still left 10 hours of entertaining to do! We made it home though and as my son crossed the threshold into our house, he turned to me and said "wow Mommy, it feels so good to be home!" I couldn't have agreed more. Unfortunately, I was only home for about 8 hours before I had to turn around and head back to LAX for my trip to Chicago. The fact that I was able to function as well as I did at that conference, considering the lack of sleep, was even shocking to me.
I can tell you, that while I can see the anxiety that my two younger ones have knowing that I will be leaving again soon, it was still definitely the right decision to make. They are back in their routine, happy to be home and thankfully over their jet lag. I am able to give them my attention and do special things with them. They are sad without their dad and brother around but we skype as often as we can and they are comforted by their routine. I know that had we all stayed in Israel they would have definitely been shafted.
Yonatan has also adjusted well to the program. He goes happily and it seems is learning quite a bit. He is the new mayor of my parents neighborhood and has been charming all of the neighbors and nearby relatives out of their chocolates and bottles for recycling. My husband tells me that it has been an amazing bonding experience for them and that he, my husband, is learning quite a bit as well about how to interact and teach our oldest. He misses us, and both of us are lonely without each other but at least we will see each other for 2 days next week.
Part of me is very excited to go back and be a part of the program. I am looking forward to seeing first hand what my husband is talking about. The other part of me though is so tired just thinking about making the trip again. I have been tempted a few times to beg my husband to just finish out the remaining two weeks so that I don't have to take that flight again.
The most amazing part of it all though is seeing how much we all miss him. Sometimes living with a special needs child can be extremely overwhelming. They can really take up all of the air in the house. You sit and wonder "what would it feel like if he were normal and just like any other kid, what would the house feel like then". The answer is, it would feel very quiet. Honestly, it would feel too quiet. Yonatan is a part of the fabric that makes up our home. Our home would not feel the way it does if he were different in any way. He is perfect and helps to make us the family that we are. Being without him here, for this long, feels empty. His brother told me last night how happy he is that when I come back from Israel next time I am bringing him with me because he really misses him. His little sister lights up at the sight of him on skype and my babysitter told me today that the house is too quite without him and that she can't wait for him to come home. I can't tell you how much all of that makes me smile.
Having said all of that, I don't want any of you to think that my house is suffering from too much quiet. My other children have dramatically increased their volumes in his absence. It seems that they were happy to fill the void!
Tuesday, April 17, 2012
Splitting up is hard to do
It has been a while since my last post. There have been many things that I have wanted to write about but I just simply haven't had the time. There has been so much going on, I think I will try to catch you up.
When you are a parent, you are often faced with complicated decisions. Sometimes the decisions affect only one of you and sometimes they affect all of you. About 6 months ago we took our son to be evaluated at the Feuerstein Institute in Israel. After the evaluation they recommended that we bring him to their intensive therapy program for one month. At first, when they suggested this, I thought ok no problem maybe we can come for a month in the summer. That way, our other son will be done with school and he can go to camp with his cousins in Israel. My baby could go to some program with her cousins too and my Husband and I could take our oldest to the program. Unfortunately, that plan did not work for the institute. They wanted us to come right after Passover which is when they could fit him in. There is apparently a very long waiting list to get in and if we were interested we needed to grab the opportunity. After some deliberation and some convincing from outside sources we decided it was worth a try. As his parents, or anyones parents for that matter, we are of course willing to do anything for our child. We had heard amazing things about this program and thought, we have tried everything else, why not this.
Once that decision was made, the planning stages began. One would think that with only 3 kids, the oldest being 7, it shouldn't be too complicated. One would be wrong! We were all going to Israel for Passover anyway so to have him stay after was not too big of a deal but then the question became what to do with our other kids. Should all of us stay in Israel for the entire 6 week period, put my 5 year old in school with his cousin, figure what to do with my 2 year old for the month while my husband and I attend the program with our son in the mornings. For me that would mean working all afternoon and night (on American hours) and the same for my husband. The other option, the one we went with, was to divide and conquer. Spend Pesach together as a family and then one of us go home with the younger kids while the other stayed in Israel with Yonatan and then swap half way through.
We are now on day three of the program. It is 4 hours a day of intensive one on one therapy for my son and for us. Today he will also start a group program in the afternoon as well. He is working very hard and is exhausted. Truthfully it is tiring for us too. Sitting in four hours of therapy can really wipe you out. I don't think I truly understood until now why my son is so tired all the time. I now totally get why he needs a nap some times. I feel like I need one after all of the therapy too!
Today is the day that I go back home with the two younger kids and leave my husband here with Yonatan. At the time that we decided what to do, it seemed clear to me that this was the best decision. When I am objective, I continue to think so. It really feels like the least disruptive option for all of the kids. My two younger ones can be in their routine, back in their own beds and in their daily lives. My oldest and the program we have come to, can have the undivided attention of the parent he is with and both my husband and I will have an opportunity to be in our routines and focus on all of the kids and jobs as well. As I get ready to pack to get on a plane alone with my two younger kids (neither of whom slept a wink on the way here btw) for a 15 hour flight, as I prepare to say good bye to my son and as I think about not seeing my husband for a month (with the exception of two days when we do the swap) I wonder if I this was the right decision. Intellectually, I know it is, emotionally though, I am not so sure.
I warn you that this could be the exhaustion speaking. Jet lag was the first few nights, I was sick for two of the nights we were here and I know that when I land in LA tomorrow I have to turn around the same day and go to a conference in Chicago. Clearly, there is not much sleep in my immediate future. I will essentially be home for one week and then I am turning around and coming back to Israel for 2 weeks. I am tired just thinking about it, you might be tired just hearing about it... You think it is a problem that the thing I am most looking forward to is the return flight alone to Israel? 15 hours of uninterrupted quiet and alone time? Is it wrong to hope that there is not a single crying child anywhere near me on the plane?
I hope that this was the right approach. I hope that my oldest will be ok and not feel too discombobulated. I hope that my husband is still smiling when I come back after living with his in laws alone for two weeks. For that matter, I hope that my parents survive living with Yonatan for 6 weeks because trust me, that is no easy feat. I hope that my other kids are comforted by their routine and that they are not overly upset by the separation from their brother and father/mother. I hope that my husband and I are not too lonely while we are apart. Most of all tough, I hope that I am not comatose by the end of it!
When you are a parent, you are often faced with complicated decisions. Sometimes the decisions affect only one of you and sometimes they affect all of you. About 6 months ago we took our son to be evaluated at the Feuerstein Institute in Israel. After the evaluation they recommended that we bring him to their intensive therapy program for one month. At first, when they suggested this, I thought ok no problem maybe we can come for a month in the summer. That way, our other son will be done with school and he can go to camp with his cousins in Israel. My baby could go to some program with her cousins too and my Husband and I could take our oldest to the program. Unfortunately, that plan did not work for the institute. They wanted us to come right after Passover which is when they could fit him in. There is apparently a very long waiting list to get in and if we were interested we needed to grab the opportunity. After some deliberation and some convincing from outside sources we decided it was worth a try. As his parents, or anyones parents for that matter, we are of course willing to do anything for our child. We had heard amazing things about this program and thought, we have tried everything else, why not this.
Once that decision was made, the planning stages began. One would think that with only 3 kids, the oldest being 7, it shouldn't be too complicated. One would be wrong! We were all going to Israel for Passover anyway so to have him stay after was not too big of a deal but then the question became what to do with our other kids. Should all of us stay in Israel for the entire 6 week period, put my 5 year old in school with his cousin, figure what to do with my 2 year old for the month while my husband and I attend the program with our son in the mornings. For me that would mean working all afternoon and night (on American hours) and the same for my husband. The other option, the one we went with, was to divide and conquer. Spend Pesach together as a family and then one of us go home with the younger kids while the other stayed in Israel with Yonatan and then swap half way through.
We are now on day three of the program. It is 4 hours a day of intensive one on one therapy for my son and for us. Today he will also start a group program in the afternoon as well. He is working very hard and is exhausted. Truthfully it is tiring for us too. Sitting in four hours of therapy can really wipe you out. I don't think I truly understood until now why my son is so tired all the time. I now totally get why he needs a nap some times. I feel like I need one after all of the therapy too!
Today is the day that I go back home with the two younger kids and leave my husband here with Yonatan. At the time that we decided what to do, it seemed clear to me that this was the best decision. When I am objective, I continue to think so. It really feels like the least disruptive option for all of the kids. My two younger ones can be in their routine, back in their own beds and in their daily lives. My oldest and the program we have come to, can have the undivided attention of the parent he is with and both my husband and I will have an opportunity to be in our routines and focus on all of the kids and jobs as well. As I get ready to pack to get on a plane alone with my two younger kids (neither of whom slept a wink on the way here btw) for a 15 hour flight, as I prepare to say good bye to my son and as I think about not seeing my husband for a month (with the exception of two days when we do the swap) I wonder if I this was the right decision. Intellectually, I know it is, emotionally though, I am not so sure.
I warn you that this could be the exhaustion speaking. Jet lag was the first few nights, I was sick for two of the nights we were here and I know that when I land in LA tomorrow I have to turn around the same day and go to a conference in Chicago. Clearly, there is not much sleep in my immediate future. I will essentially be home for one week and then I am turning around and coming back to Israel for 2 weeks. I am tired just thinking about it, you might be tired just hearing about it... You think it is a problem that the thing I am most looking forward to is the return flight alone to Israel? 15 hours of uninterrupted quiet and alone time? Is it wrong to hope that there is not a single crying child anywhere near me on the plane?
I hope that this was the right approach. I hope that my oldest will be ok and not feel too discombobulated. I hope that my husband is still smiling when I come back after living with his in laws alone for two weeks. For that matter, I hope that my parents survive living with Yonatan for 6 weeks because trust me, that is no easy feat. I hope that my other kids are comforted by their routine and that they are not overly upset by the separation from their brother and father/mother. I hope that my husband and I are not too lonely while we are apart. Most of all tough, I hope that I am not comatose by the end of it!
Thursday, March 8, 2012
The Spectrum Of Normal
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".
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".
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.
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