I know that they say that you never know what goes on behind closed doors and that you never know what difficulties and troubles other people face in life. I recognize that although it seems like people have it easier than you, they don't necessarily and that really you would never want other peoples problems. That your problems are at least your own and known to you. Even knowing this, sometimes I still feel compelled to look to my left and my right. My husband always says that one of the most inspiring things he was ever taught, by someone who was truly an extraordinary role model, was to never do that. To wake up each morning, look in the mirror and say today is going to be a great day. Not to dwell on what others can do or have, but really to revel in what is great in your life.
I try very hard to live by that. I really try to thank G-d for for all the wonderful things in my life and to learn from my experiences and feel good about my challenges. There are certain times of year that this becomes more challenging. It is not really anything major, or anything that has any huge impact but rather the little things.
Summer vacation is upon us. It is a really fun time of year for families. Kids finish school and head to camp. They have short breaks before and after camp that are really meant to be family time. People go here and there. They travel by car or plane and try to do a few things during this time so that when their kids get back to school in September they have wonderful stories of fun filled days to share with their friends. I watch my friends plan trips and vacations. People take small trips to places like San Diego or bigger trips to Hawaii. They make big plans in advance or last minute ones and are gone and back before I even know it. It really is no big deal. For them.
That's what gets me. It is things like this that have me looking to the right and to the left. For my family, a sunday trip to the zoo or Underwood Family Farms takes careful planning. It takes us a while to come to the conclusion that it is even a worthwhile trip to make. Committing to going someplace 45 minutes away, a decision most people make at 9:30 on sunday morning and execute by 10:30, takes careful planning and anlysis. We can't go anywhere without making sure to have another set of hands. There always has to be an exit strategy. All of this is for a local outing that may last 2 hours. Obviously, planning to go anywhere further is off the table.
My 5 year had his last day of school today. When I picked him up he asked me where we were going this summer. Part of me wanted to tell him NO WHERE and don't be so spoiled! but the other part of me is upset for the boy who doesn't get to experience the things that many 5 year olds, and certainly most that he knows, do. I feel bad for him. I know that we have complications that others don't. (Having said that, we also have blessings and life lessons that others don't that are helping to shape him as well. This morning on the way to school, when talking about what he would ask G-d for, that same 5 year old told me that he would ask that his family be healthy. Pretty impressive, huh?! Second runner up in his requests was a lizard or a dog or both. My response was that he firsts needs to ask for another mother.)
My husband would say that it is true, that we have different challenges, but that there are plenty of special things that our kids do get to do. That we may not go to Palm Springs or Hawaii with them but that we do visit my family in Israel at least once (often twice) a year. That we have our traditions, like going to the Coffee Bean, with our Aunt and Cousins, every Sunday which my kids look forward to and love. That maybe it is time to start splitting up and taking our other children to places like Legoland or wherever so that they can experience the things their friends do as well. To decide this is how our family experiences these things and to know that it is ok too.
So this Sunday I am trying something new. We are going to take a family trip to Underwood. All of us. We are bringing two extra sets of hands belonging to grandparents and we are going to try it out. Exit strategy is in place, plans are set and we are off. It may not be a family trip to Hawaii but for us it is probably the equivalent of Cabo. A 2 hour flight is about the same as 45 minutes in the car, don't you think. We will see how it goes. Maybe it will be successful and maybe it won't. It may be the beginning of more activities or maybe it will be the first and final attempt. But at least we are trying it. I admit, the spontaneity is not there. I researched and thought about it. I asked friends who have been there if it seems like it could be a successful activity for us. I have hemmed and hawed and thought about doing it for months. But maybe, if it is goes well, next time we will be able to do it without over thinking it. Maybe if this is successful, we might consider trying something a little more extreme, like the zoo, and this may possibly be the start of a little less comparing to what others can do and embracing a little more of what we can do. Or not, and that will be ok too. At least I will have tried.
Wednesday, June 13, 2012
Sunday, June 3, 2012
My Little Ham
We received a flyer home on Tuesday or Wednesday inviting us to a presentation at our sons school of The Grouchy Ladybug. Usually, when we get these invitations, it means that the grade or multiple grades are putting on a performance and that our son and his class will be there somewhere mixed in with all the other kids. As a dutiful mom, I always go, but truthfully more often than not I find it to be a little dissapointing. My son can usually be found standing off to the side, kind of part of it but really doing his own thing. He always looks adorable but his participation level is usually pretty low. Sometimes we might get a minute of some cute dancing or clapping, but usually not. And so, when I saw this flyer I will admit, I kind of felt like skipping it. I will even go as far as to admit, that when Friday at 1:15 rolled around I ended a meeting with a colleague a few minutes early saying that I had to go to yet another annoying play at my kids school.
I could not possibly have been more wrong! What awaited me when I got there was probably one of the most special things I have ever experienced. To give you some background, my son is in a special ed class in a typical school. The class is for kids from kindergarten through 2nd grade. The performance was being put on by the kids in my sons class only. They had invited all of the grades in the school in that age range as well as all of the staff members that work with the kids in this class and their parents. One of the aids from the class narrated the play and each kid had at least one part. My son played the part of the stag beetle as well as a walking clock telling us what time it was. Each of the kids playing the various parts were adorable.
As I said, usually at these performances, I do not expect much. So as you can imagine, when my son walked on stage to play his part of the stag beetle, I assumed he would have no clue what to do. I sat there thinking to myself "oh great, my kid is going to be the only one to mess this up" but to my astonishment that was not at all the case. The first thing I noticed when he walked out was how almost every kid in the audience smiled and said "oh look, there's Yonatan" or "it's Yo Yo". Everyone in that school knows him, he is seriously famous in those parts! The second and far more astonishing thing was that he walked right out onto the stage and went straight to the microphone and after getting over a bit of a, wow everyone is looking at me stupor, said his part! Now, I won't pretend that it was super clear, or that if everyone didn't already know that the line was "if you insist" they would have understood him. But who the hell cares! He said it, and in front of an entire audience. He then turned his cute little tush around and exited stage center. I. could. not. believe. it.
And as I sat there, sitting in a row with all of these parents who probably in varying degrees also thought they would never experience this moment, I couldn't have been more amazed or proud of our children. Because, as I often say, when you are a parent you find so much pride in the things your children do but when you are a parent of a child with special needs the feelings of pride are indescribable. So when I looked around at all of the other parents, experiencing what I was experiencing, I thought to myself: today I am so happy to be a part of this club.
I could not possibly have been more wrong! What awaited me when I got there was probably one of the most special things I have ever experienced. To give you some background, my son is in a special ed class in a typical school. The class is for kids from kindergarten through 2nd grade. The performance was being put on by the kids in my sons class only. They had invited all of the grades in the school in that age range as well as all of the staff members that work with the kids in this class and their parents. One of the aids from the class narrated the play and each kid had at least one part. My son played the part of the stag beetle as well as a walking clock telling us what time it was. Each of the kids playing the various parts were adorable.
As I said, usually at these performances, I do not expect much. So as you can imagine, when my son walked on stage to play his part of the stag beetle, I assumed he would have no clue what to do. I sat there thinking to myself "oh great, my kid is going to be the only one to mess this up" but to my astonishment that was not at all the case. The first thing I noticed when he walked out was how almost every kid in the audience smiled and said "oh look, there's Yonatan" or "it's Yo Yo". Everyone in that school knows him, he is seriously famous in those parts! The second and far more astonishing thing was that he walked right out onto the stage and went straight to the microphone and after getting over a bit of a, wow everyone is looking at me stupor, said his part! Now, I won't pretend that it was super clear, or that if everyone didn't already know that the line was "if you insist" they would have understood him. But who the hell cares! He said it, and in front of an entire audience. He then turned his cute little tush around and exited stage center. I. could. not. believe. it.
Tuesday, May 15, 2012
Thank You!
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.
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.
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!
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