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.

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.

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.