My husband always says that a cute child with special needs usually turns into a weird adult. That what is cute today, will probably just be strange in 15 years. As a result, I try very hard to be very tolerant and kind to other children and adults with special needs. I know that to most of you this seems obvious, of course one should be kind and tolerant to people with disabilities but to be honest it isn't always so easy. As I have said in the past, I was not born with an abundance of patience and so when I found myself in line behind someone who was a little off and taking forever, I became impatient. Or when a stranger who was strange tried to speak to me at the supermarket, I found it annoying. I am sure I can come up with a whole bunch of examples like this but I think you get my drift. In the last 7 years however, I have worked hard to change this.
Being Yonatan's mother, I have not only become a more patient person (stop laughing, it is true. If you only remembered what I was like before...) I have also worked to be more tolerant and kind to people who are "different". One might say that not as many people as I think are "different" actually are, and that I would be better off not diagnosing every other person I meet with some form of autism or special needs, but the truth is, I really try to look at every person and treat them the way I would want them to treat my son. I would say that I have been successful in this endeavor.
I have started drinking a Cappuccino Blast from Baskin Robins daily. I pull up to the Baskin Robbins next to my house every day at lunch time and grab my lunch to go. When I got there today there was a man in front of me in line. There was clearly something a little off considering the fact that it is summertime and he was wearing a ski cap and a jacket and had some difficulty ordering. After he finished ordering he turned to me, put his hand out and said "Hi I am Tom". The new tolerant and kind me put my hand right out and said "it is nice to meet you" and smiled at him. Great, no problem. Martha, my favorite employee at Baskin Robbins handed me my drink and I was on my way.
Except, as I was leaving so was Tom. He walked me to my car and asked if we could be friends. He said that he had just moved to the neighborhood, had met Nicole and her child at the laundromat but was still looking to meet more people and asked if he could give me his roommates number so I could give him a call. No problem I said and took down his number and made a move towards my car. He then asked me what my name was and I said Mary (using my Coffee Bean and Starbucks name). As I turned to my car I noticed that he was lingering. At this point I started to get a little uncomfortable. I started to wonder if he might try to get into the car? Why he was still standing there? Would he ask me for a ride? Might he be dangerous? I told him I was going to leave now and he asked if he could watch me start my car. I said yes but told him to move back so I wouldn't hurt him and made a quick dive into my car and hit the lock button immediately. He then came to my window and asked me to roll it down at which point I told him that I really needed to leave. He said "bye Mary, it was nice to meet you" and waved. He was crossing the street while I waited for the light and waved at me for a full 2 minutes while I sat at the light.
Here is the thing. I did not want to be afraid. I looked at him and thought, this could be my son one day. I wanted to treat him the way I would want people to treat my son and I truly believe that I did. But, even though I did the right thing, I was still afraid and throughout the experience kept thinking that I really wish I weren't and how sad it was that I was. Because really, Tom was just looking for a friend and because of whatever disability he has, he truly doesn't understand that meeting people in Baskin Robins is not an acceptable way to make those friends. But that is not his fault. At the same time, one really doesn't have any way of knowing who is friend and who is foe. In this day and age you have to worry that someone may jump in your car and attack you. I get that, I just wish I didn't have to see my sons 40 year old face super imposed onto Toms.
Tuesday, July 17, 2012
Tuesday, July 3, 2012
Flying Solo
I am about to embark on my first solo vacation in ages. I am off to NY
for a wedding on July 4th.
While there is a work component to this trip and a kids element, really
it is a long overdue chance at some alone time mixed in with what I hope will
be some peace and quiet.
This is a 3 day trip only. I am spending a good part of the first day
driving up to visit a camp for kids with special needs that my husband and I
are considering sending our son to. That is the kids element. Tuesday night
will be spent hanging out with a friend and will possibly involve a trip to the
theater. Wednesday is a day off. I may go to the beach, I may just walk around
NYC and I may just stare into space. Whatever I do though, there will be no
children yelling at me, no dirty hands smearing my clothes, no obligations
(until the wedding starts) there will simply be some time to enjoy myself.
Thursday is back to work, with a long work meeting scheduled, but I will still
be in the city I love without my kids. So it will still feel like vacation.
I cannot tell you how much I need this. It has been a very long time
since I have had a break. My husband and I did go away in the winter for 5
days, which was amazing, but I worked every day of that week. July 4th
will be the first time in a long time that I don’t have to work and don’t have
to be a mom. I can’t wait. I may even try to figure out how to sleep late for
the first time in forever (although I doubt my internal alarm clock will allow
it. I guess even 7:45 will be a dream come true!)
If you ask my husband I have been very tense of late. My patience for my
kids has been thin and I have been snappy. I have known all along that he is
mostly right and that what I need is a chance to breathe, a chance to have some
me time. Our trip to Israel was
wonderful but intense. Trying to keep up with all we learned and balance things
back at home is hard. My son is now between school and summer school and having
him home for 2 weeks is hard on him and hard on me. I work from home, which
allows for way too much time for him to be screaming and yelling in my
presence. It is as if he saves it all up for the moment he sees me, and then
lets loose. My babysitter begs me to leave because he is so much better behaved
when I am not around. As I said, I
really need to get away.
I hope I am not pinning too much hope on this short little trip. I hope
it will be as refreshing, as I need it to be and that I will come back feeling
a little less tense and a little more relaxed. To be honest, if I don’t I am
pretty sure my husband will remind me that he sent me away for that reason and
that now he is “off duty”. No
matter what though, I will enjoy myself and be sure to make it about me. I have
earned this mini-vacation and I intend to enjoy every minute of it.
Wheels up and off I go…. Except wait, of course, just my luck. They just
told us to deplane and that the flight is now delayed 3 hours. Not an very
auspicious start. Silver lining,
At least my kids aren’t with me!
Wednesday, June 13, 2012
Whiplash
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.
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.
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.
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