Fighting Someone Else's Battle

     Children like mine face all sorts of challenges in life. Being different is never easy. Some children are aware of their differences and some are not, but either way being different is an uphill battle. It is difficult to be accepted, you are often looked at funny, people are afraid of those who are different and usually don't know how to interact with them or how to act around them. Children and adults with special needs face so many challenges already, they don't need any more.
     I, like many others, was riveted by my TV screen on Friday and a for a lot of the weekend. I watched the events of the tragedy at Sandy Hook Elementary School unfold to my horror and disbelief. I cried for those children and their parents. I could not pull myself away from the screen even when my own children came home. I hugged them and held them close but could not bring myself to turn off the TV even in their presence. I sat there, with tears rolling down my face, thinking about those innocent children, the brave and equally as innocent teachers and faculty. I thought of the first responders who had to walk into that horrific scene and will never be able to put it out of their minds eye. I listened and watched for every bit of information that the media handed us.
     As I watched the first press conference being given by the chief of police, I thought to myself, he isn't giving us any info but the press is. They are filling in the gaps for us. They have given the gunman a face. They have given us details, we have the whole story. Like most people, I believed them. As the weekend unfolded though, it became clear, that much of what they were reporting was incorrect or false. This is nothing new. We have seen it happen dozens of times, we are used to it and truthfully, I usually don't really care when they report falsely, until now.
     When my Facebook feed begins filling up with trending articles asking if Autism or Aspergers is to blame I begin to care. When every major news website is reporting as to whether or not Adam Lanza had Aspergers and if this was what caused him to do what he did, I get angry. When people have to start writing articles in response to that notion in defense of special needs children I become furious.
     What happened in Connecticut is a hideous tragedy. I grieve for every parent who lost a child, for any person touched by this tragedy, for Adam Lanza's father who is left behind knowing that his son did something so heinous. I grieve for the country we live in, where tragedies like this occur way too often but I also grieve for every parent of a special needs child who now has another battle to fight because of media sensationalism.
     We don't know what caused Adam Lanza to wake up Friday morning and do what he did. We probably never will. It would be great to have something or some illness to blame. It would allow each of us to look at our own children and feel better knowing that we are safe from whatever it is. But as I said, children with special needs fight an uphill battle everyday. They don't need to fight this one too. They don't need people out there speculating that any one of them could do this. Parents like me should not have to worry that schools will worry about educating our children. This should not be super imposed on the face of autism or aspergers. It is wrong. Statistics say that 1 in every 4 children has autism today. Do you really want to look at every fourth kid sideways and wonder? It is obscene, it is unfair, it is just plain wrong.

What A Difference A Year Makes

     I just finished rereading my last years post about Chanukah. As I read it, I could clearly remember the sadness and pain I felt last year. The feeling that this is what the future held. Chanukah after Chanukah of disappointment for me as a parent. Let me tell you what a difference a year makes. I want to share with you the amazement and wonder I feel right now.
     Last night was the first night of Chanukah. As soon as the sabbath ended we ran in to the living room to light the menorahs. As is the tradition in most homes, we light in age order. My husband finished lighting his menorah and I turned to my oldest and said "Yonatan, your turn". He looked at me and said "no" and I thought to myself, here we go again. We then turned to our middle son and said "your turn". He started to sing the blessings beautifully, when out of the corner of my ear I heard my oldest say "when Raphi finishes, it is my turn". True to his word, as soon as his brother had finished lighting his candle, my oldest stood up, held the candle and with our assistance said all the blessings and lit his menorah with a big smile on his face. After my daughter finished lighting her candle we all sang the songs that follow and had a big dance party. Yonatan led the pack! And then, like any regular kid, he sat himself down on the couch and said "OK, I am ready for my present"! It was amazing. Even more amazing, was the smile on his face when he opened his "My Own Mailbox" with its red flag, post cards and all (A huge thanks to my good friend who found that one for me). He could not stop saying thank you very much to me and my husband. He was over the moon. He was enjoying Chanukah like any other child and I simply could not believe it.

     Tonight, the second night, we hosted my husbands family for a Chanukah party. Everyone came in time for the menorah lighting. Just like last night, my husband started us off and this time without even having to ask, my oldest came to the table and got ready to light his candles. As many of you know he is speech impaired and so it is not easy for him to say the brachot by himself. As he stood there reciting after us, to the best of his ability, I overheard my husbands Grandfather saying that it breaks his heart. It is very hard for him that his great grandson has trouble speaking and has special needs. It really causes him pain. As I looked at the tears in his eyes and then looked over at my son standing there lighting the candles, I thought to myself, this is not a painful moment. This is a joyous one. This is the moment when my son stood up and experienced Chanukah like all other children. I hope next year that is what my husbands grandfather will feel, because truthfully, it feels much better. It feels much better to look at my son with the pride of a Jewish Mother watching her son accomplish and enjoy what comes so easily to other jewish children. I truly hope that each year, I can go back and read my earlier posts and always be able to see Yonatans growth. It is these moments that really make it all worth while.

After The Storm

            When I was a kid we lived in NYC. For weekends in the spring and for summers, like many families, we left the city and headed to the beach. My family, nuclear and extended, went to Long Beach on Long Island. I have amazing memories of those times. Playing with cousins, going to the beach for hours at a time, eating sandy sandwiches (always grilled cheese for me), flying kites, going to the arcade on the boardwalk (back in the day when $2 could buy you endless fun at an arcade) and riding our bikes to Baskin Robbins. To this day I can’t believe how often I ate a Banana Royale myself. 3 scoops of ice cream, always mint chocolate chip, bananas, whipped cream, butterscotch and a cherry on top.

            We just traveled with our whole family to NY for my nieces Bat Mitzvah. It was, oddly enough, our first trip with our kids to NY. I was very excited to show my kids the different parts of my past; the building where I grew up, Central Park, my cousins apt where I spent half of my childhood. I wanted to take them on the subway and make sure they had plenty of time to play with their cousins and I really wanted to take them to Long Beach. I have been telling my middle child stories about the fun we used to have there, for the last few months in anticipation, and he was dying to see it.

            In the wake of Hurricane Sandy it became evident that Long Beach was one of the worst hit places. Bordered on one side by the ocean and the other by the bay, the whole town was over taken by water. The Bay and the Ocean actually met during the storm in the middle of Long Beach. It seemed that even if I wanted to take my kids there it might prove impossible. It was being guarded by The National Guard and was declared a disaster zone. More than one person told me to preserve my memories and not to head back there.

            We were in NY for 5 days. We had an incredibly successful trip. The kids had a great time. We spent time with family; we rode the ferris wheel in Toys R, even got to go in the Scooby Doo car. My kids went to Dunkin Donuts twice, played in my grandmother’s house doing all the things we did as children. Everyone behaved, even though no one really slept enough. It seemed all my nerves about taking this trip were for nothing. Even my oldest was a rockstar.

            We were going to try to get to Long Beach as our last stop before heading to the airport but in the end my kids opted to play with their cousins for the last two hours instead. As we were driving to Long Island my daughter fell asleep in the car and rather than wake her I decided to sit in the car with her. I then realized I could seize the opportunity and head to Long Beach with just her.

            As I drove over the Atlantic Beach Bridge I began to see the destruction. Throughout Atlantic Beach and Long Beach there is trash piled everywhere. Houses are dirty and are being picked apart by construction workers. It smells bad. People in Hazmat suits with masks are working in homes and buildings. Port-a-Potties on the streets and Red Cross relief trucks coming to help out.  All of this, weeks after the storm.

            I was relieved to see that all of the homes that had significance to me were still standing and while they had damage, they seemed like they would be OK. I was happy to see The Laurel Luncheonette open for business and looking the same as it did more than 10 years ago. It was crazy to see that half of the sand from the beach was on the wrong side of the boardwalk and pieces of the boardwalk were missing. I wanted to go check if my Baskin Robbins had survived and get some ice cream, for old times sake, but I ran out of time, it was that or catch my flight! Truthfully, I think had I gotten there and seen it gone it would have been too much sadness.

            It was devastating to see the destruction, to see many of my childhood memories be tarnished in this way and to see what the residents have to do before they can even begin to rebuild. It was truly sad. I am glad I went so that I could see that my grandparents home was still standing, even though my grandfathers beloved dock on the bay did not look like it made it. It was wonderful to see the synagogue next door to our house was mostly intact, even though I understand that the basement was destroyed. I wonder if the arcade is sill there or if that part of the boardwalk was destroyed.

All in all, I am happy I went back. But I am also very sad.

My Grandparents home

           

The Dock On The Bay across from my grandparents house

Our First Home In LB

The last home we lived in there for many years

Piles of trash in front of homes, these are everywhere you look

            

The Tooth Fairy

     Tonight, while I was at back to school night for my middle child, my oldest lost his first tooth. Well, not exactly his first, but his first spontaneous tooth loss. (The first two came out after an unfortunate incident with a swing and some unsupervised time with his grandfather- but that story is for another posting). When I got home, the babysitter pointed to the tooth, sitting on a tissue next to the kitchen sink, and said "oh by the way, I almost forgot to tell you...".
     As I stood there looking at the tooth I found myself feeling sad and melancholy. The truth is, that losing a tooth is a big milestone for a child. They watch it happen to their friends, their relatives and their siblings and they wait excitedly for it to happen to them. They hear rumors about the tooth fairy and try to guess who it is. They take that tooth and put it under their pillow and wake up bright and early to see what awaits them in the morning. Like I said, a really exciting milestone in any childs life. But, like most of these "normal" experiences, they are different in our house. My son likely doesn't care that he lost a tooth. It is not inherently exciting for him like it is for other children. He won't be excited about the "tooth fairy" and who she is. He won't equate losing a tooth with feeling proud and grown up. It will probably be just a blip on his radar. Far less interesting than the fact that the mail man came at 7 pm the last few nights which, by the way, has sent our daily schedule into a tailspin!
    If I hand him a dollar in the morning (inflation is out of control, when I was a kid it was a dime or a quarter) and tell him that the tooth fairy left it for him, he will shrug and tell me to give it to his teacher so that he can buy a drink from the lunch lady at school, which we do every day anyway. Like I said, just a blip on his radar. Nothing out of the ordinary.
     Maybe I should be happy. I never have to see his sad face when he realizes that there is no tooth fairy, and that is just me creeping into his room at night. I will save a good twenty bucks, nothing to sneeze at with the going rate per tooth, and I won't have to feel bad on the mornings when I realize that I forgot to make the tooth for money exchange during the night. I should look at this as "my luck". But, I don't. I want to experience those moments as a parent. I want my child to experience the joys of being a child. I still remember the little tooth pillow I had when I was a kid with it's little pocket for the tooth and a place for my loot. I want it for me and I want it for him. It is part of the myriad of pleasures that we should get to experience as parents.
     Maybe I am wrong. Maybe, he will wake up in the morning and be excited to show me that he lost a tooth. Maybe I will be able to explain to him that the tooth fairy came during the night and left him something. Maybe he will get it and with each successive tooth, I will be out a buck. If so, it will be the best and happiest $20 (or however many baby teeth we have) that I have spent. I don't know. But either way, I am going to try. I will get up right now and put the dollar under his pillow. Maybe, I am not actually doing this for him and really I am doing it for me, but that is OK too. I think, part of being a parent is doing things that make us feel good too.
   

Divide and Conquer

     When I was younger I always pictured my life nice and tidy and tied with a big bow. I think most of us do. We imagine the life we will have and it is usually bright and shiny and easy. We are too young and dumb to think it could be any other way. So I envisioned a life with my big family and all the things we would do. I think one of the hardest parts of my actual life, for me, is the adjustment I had to make from the life I imagined to the life I actually live.
    That is a reality we all face. Not only me as the mother of a special needs child but anyone whose life has at all veered from the path they imagined (which is probably everyone in some form). I find that I am often still coming to terms with this reality and so it is sometimes challenging to figure out what path to take. For example, for the longest time I resisted getting help on Saturdays. In my mind, Shabbat was a family day and if I had someone else watching my son that meant he was not experiencing the things that were special and unique to that day. Until one day I woke up and realized that none of us were because instead of sitting down at the shabbat table or being inside of synagogue one or some of us were out delivering the mail with him. Instead of just him losing out on something that he had no idea he was missing, we all were. And so I hired someone to help out on Saturdays. It is true, that is not the way I imagined my family experiencing shabbat but it works, and that is what matters. So to with Sundays. As I have written in the past, for a long time we rarely did anything more than going to the Coffee Bean on Sundays (which as many of you know is somewhat of its own religion for us). The truth is, that it works for us. It is something that all of my children enjoy and so that was enough. Only recently have we begun to expand our repertoire to include more activity on Sundays. And you know what, that was OK.
     Until now. Our middle child is getting older. He is 5 and ready to experience more. He hears about all of the things his friends do and is ready to do them too. Unfortunately though, he is often held back. It is difficult for us to do these things as a family. Taking our older son to a lot of these fun and exciting places is out of the question and truthfully just plain not worth it. Does that mean though that his siblings should not have those opportunities that they crave. That we as parents should not be able to provide them and watch our other children bask in the amazement of these things.
    It is a very big step to look at your family unit and be able to say that it works best when divided. The dream is to be able to do everything together. To go places and experience them with all of our children. To have albums filled with pictures (at least theoretical albums because anyone who knows me knows that even if I had the pictures printed they would just collect dust in their envelope) of all of the great things that our family has done. We are finally taking that step. We are untying the big imagined tidy bow.
     Tomorrow my husband is packing up the car early in the morning (or at least early for him) and hitting the road with our middle child. They are going to San Diego to visit Sea World and Legoland. Two rites of passage for any Southern California child. This is not a trip that would work for my oldest and my youngest is too young to know that she missed it. So we have decided, that for our family, not all pictures will have to include everyone and that it is OK. There will be plenty of things  that we will all do together but that it is also ok to understand our family unit and be comfortable with how it best functions. Sure, I am a little sad that we can't do it together and jealous of the fact that my husband will be there to see my middle ones face light up as he pets his first dolphin or goes on a roller coaster but the truth is, I am mostly excited for my son. He is going to have the best time. He doesn't know that he is going yet. The plan is to tell him when he gets in the car tomorrow so that I can have the opportunity to see his face light up without his siblings feeling left out or sad. Yeah it stinks that I won't be a part of it but truthfully, roller coasters make me nauseous and I am afraid of animals and these two facts help to console me.
    So while part of me is sad about the fact that the life that I envisioned is not the reality, the other part of me is excited that we have managed to figure out how to still make it work. How to provide each of our children with experiences and memories that they will cherish. Some will be together and some will be apart but I know that each one will be special.

Making Lemonade

     I received an inquiry on Friday through my companies website from a farmer who asked me to contact her. She sent an email like many others do, saying that she was interested in learning more and asked that someone contact her to show her a demo. What I particularly love about what I do is that I have the opportunity to speak with people who are 1) truly fascinating and 2) extremely passionate about making this world a better and healthier place. Because of this, I can really say that I am often lucky enough to speak to many interesting people in the course of my day/week. This woman though, blew me a way.
     I would never have thought, when I started this job that my personal and professional life would intersect in so many ways. As it turns out though, they do. When you work with people who are passionate, you often find yourself meeting people who apply their passions in many ways. For example, there is the farm that is actually a home/program for adults with special needs. The adults come to live on the farm, in one of their many community homes, and while living there learn about agriculture, farming as a profession and how to run a csa. They provide them with an opportunity to have a profession, invaluable life skills as well as a community to be a part of. There is probably no greater gift that you can give to an adult with special needs then a place in society.
    There is the buying coop a colleague of mine came across in Florida that was started by moms of kids with special needs who have to adhere to certain diets and so they decided to make it easier for all of the mothers like them in their area. I could give more examples but I am sure you catch my drift.
     And then there is the woman I spoke with on Friday. I started off the conversation as I always do by saying "So tell me about your CSA program". Her response: "well I have an 11 year old son with special needs who needed a specific diet..." Part of that diet was to drink 2 gallons of organic cream each week. So she figured, since she lived on a farm anyway, she might as well get a cow because it was so much cheaper, and from there she started her dairy csa. The next thing was that her son needed organically grown fruits and vegetables and she began farming them and so began her veggie csa. She then thought to herself, that the youth in her area seemed to be spending too much time hanging on the street corners. Since she needed labor for her farm anyway she started a riding program for youth. In exchange for riding lessons they would work the land and with that she got the teenagers off the streets. She made sure in purchasing her horses that they were trained for people with disabilities so that she could accommodate children with epilepsy or other disabilities.
     And that was just her getting started. She was probably one of the most impressive people I have ever spoken with. I told her about my son, we exchanged some stories and she totally got it. By the end of the call I felt like we were friends.
     I often think about what my legacy will be. I don't mean in a grandiose way but more in a "in what way will I impact people" way. I feel like I was given this life for a reason. I feel strongly that it is not just about getting through my "situation" but about what impact I can have on others as a result. After speaking with her I know that it is time to kick that into high gear. Her son is only a little older than mine and look at what she has already accomplished! I want to take my lemons and turn them into lemonade. I want to make sure that my legacy is that I helped as many mothers like me and as many children like mine. I don't know how yet, but I guess it is time to start figuring it out.

Stranger Danger

    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.

Flying Solo

     I am about to embark on my first solo vacation in ages. I am off to NY for a wedding on July 4^th.  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 4^th 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!

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.

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.

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.

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.

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.

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!
   

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!

The Spectrum Of Normal

     Close your eyes for a moment and imagine that feeling you have when you are taking your kids to a place where you know they will have to be relatively well behaved and quiet. Focus in on that nervousness you have in anticipation of getting there and the worries you have on your way. Usually, you can't even relax until it is over. Now, open your eyes and magnify the feeling you are experiencing by about 1,000 and you might maybe possibly feel a tiny bit of what I feel in that same situation. I don't mean to minimize what all parents go through when they get a plane with their kids, or go to a restaurant or take them someplace full of adults. It is nerve racking for everyone. The difference is though, that for you the chance of having a problem is a possibility whereas for me, it is usually a sure thing.
     Last night and today was purim. My husband and I spent quite a bit of time trying to figure out how best to approach the hearing of the megillah on Wednesday night. Most families dress their kids up and go but for us, it is obviously more complicated. After much discussion, we decided to "divide and conquer". I was going to take the younger kids to an early reading at someones home and my husband was going to take our oldest to shul for the carnival. This way he could have some fun in a place he loves, and then my husband could catch a later reading for himself.  It seemed like a workable plan. And then, just as I was trying to get out the door, my oldest said he wanted to come too (which  of course excited me since it meant that he wanted to take part in Purim) and so I said no problem, lets go, and the whole family of 5, plus 1 iPad for distraction, jumped in the car.
     Let me preface by telling you that we were in the home of a family that we are closely related to and where my son is very comfortable. You would think, that being the case, that I could relax. Not so much. I will tell you, that he was pretty good. There were no meltdowns, no screaming so loud that no one could hear the megillah, he didn't bother a single other child and yet, the experience was exhausting. He took up residence in their pantry, fridge and freezer. He proceeded to eat them out of house and home, (which I of course allowed in the name of fulfilling the mitzvah of hearing the megillah) to open every other cabinet in their kitchen and he required constant supervision by both me and their live in babysitter. I would like to believe that I heard the whole thing but to be honest, as my dad would say, I  pretty much took it for "pass/fail".
    And so, when the megillah reading was over and a few people came over to me to tell me what a great job he did all I could do was look at them as if they had grown second heads. While they were not wrong in saying that, for me, it was still a totally hands on, stressful and exhausting experience. I am not even sure if 24 hours later I have entirely recovered.
     What I later tried to explain to a friend of mine was that what I miss most of all is that feeling of normalcy. I looked around at all the women sitting there, who essentially managed to sit the whole time with barely any interruption from their kids, and felt jealous. Now, I am sure, if you asked them they would describe their experience as stressful too. They might tell you that they worried about their kids making too much noise, or that they missed a verse or two as a result of their kids, but they basically had a normal experience.
     Since last night I have been trying to dig back as deep as I can to remember what it feels like to just be normal. To do all of things that people do and experience them in the same way. I want to say that it is a feeling I miss but truthfully, I am not sure I even remember it or that I would recognize it if it smacked me in the face. To be completely honest, I don't need to be normal I just wouldn't mind being somewhere on "the spectrum".

My Other Man

     I am not easily amazed. Often, I am not even easily impressed. I am somewhat of a cynic and often expect the worst. It is rare for me to really be wowed by someone. Occasionally though, I am.
     I am currently sitting in the hospital with my husband's grandfather who is 91 years old. He fell about 10 days ago and fractured his pelvis. This is the third in a series of falls over the last few years. The first time he fell and broke his hip, I cautioned my husband that it is very difficult for elderly people to recover from such a break and that he should prepare himself for what may come. He was furious at me. Unfortunately though, I had seen it quite a few times and knew that often, the outcome of a broken hip is not a good one for an elderly person. Well, as it turns out, I was wrong. It was an amazing recovery. He healed and some might say, got even better.
     About 6 months ago he fell again, another broken hip. By this time I had learned my lesson and told my husband, that just as he has done it before, his grandfather would do it again. We could expect a full recovery and sure enough, we all watched it happen. Another remarkable recovery. Just two weeks ago, when I went to his house to visit with him, he proudly told me that he had walked to and from the store by himself. He was having a great day.
     And then 10 days ago, he fell again. This time he fractured his pelvis. Since then, he has been in the hospital and it has not been an easy time for him. He is very weak and in tremendous pain. It is hard for those of us who love him to watch him suffer so. We are worried about him because he is in pain and because his spirits are low.
     But here is the thing about Zaidy. He is truly amazing. He has been through so much in his life and he is a true survivor in every way. He never gives up and and has the most incredible will to live. It is awe inspiring. But more than that, it is a lesson for me every day. He has shown me that no matter what, you can never give up. That life deals you difficult cards but you must play them. That being strong is a must and that making it through is the only option. I recently told him that had I lived during the time of the Holocaust I don't think I would have survived it. He answered me that you have no idea what the human body is capable of.
    I have been having a pretty bad day today. Lots going on, some tough decisions to make about my son. I have been sick for a few weeks with something I can't seem to shake and so when I woke up this morning with a splitting headache it seemed the only course of action was to have a good cry. I had a pretty big crying jag and have been feeling pretty gloomy all day. But as I sit here, doing my "shift" with Zaidy, it occurs to me that I really need to take a page out of his book. I could learn quite a bit from this man who simply won't quit. It probably wouldn't hurt for me to try to take a positive spin on life. To emulate him. The truth is, I am not sure yet exactly how to apply the lesson he is teaching me right now to my life, but I am going to figure it out. I will figure it out because I know, that if I can get even an ounce of his spirit I will be doing pretty ok.
    And I will tell you this, he just turned to me and asked me  if my parents are proud of me. When I answered him that I think so and that I hope so he said to me "that is not enough. If you were my daughter I would tell everyone how wonderful you are". Not a bad way to end my crappy day. I am going home with a big smile on my face.

Incredibly Loud

     If you read my last post you know that last Thursday night was not a pretty one in my home. As I reported I was at the end of my rope, My eldest was way overtired and my husband was still at work. My son, you may already know, has a tendency to scream whenever he feels like it. As you may also know, It is not a pleasant sound. It is kind of blood curdling to be honest. On a good day, it happens multiple times but can be mostly ignored but on a bad day, it is a constant. We like to think of it as the sound track to our lives. It is like a combination of heavy metal and hard core rock at the highest volume possible. As you can imagine, it is pretty painful to listen to.
     Back to Thursday night. There I was alone with all three children, exhausted and sick and he was screaming on the top of his lungs repeatedly. At that point, I pretty much felt like I had no other course of action but to scream back. Yes I know, counter productive, against everything they teach me in behavior therapy, but seriously as I said, END OF MY ROPE. So pretty much, you have the picture. It went something like this, he let out a few big screams and I would scream back at him saying "I CANT TAKE IT ANYMORE JUST STOP ALREADY!." As I said, not a pretty picture. I really couldn't think of anything but getting him to stop.
     Here is what I was not thinking of, and probably have not thought about enough, my other kids. As this screaming fest was going on, my four year put is hands over his ears, clenched up his entire body and screamed "I can't take the screaming any more!". He was referring to both me and my son but it occurred to me at that moment, that while I can control my screaming, my oldest can not. I started to think about the impact this screaming is having on my other kids. After that, my four year old spent the rest of the night telling me he hated his older brother, he is so mean, he only loves me, his father and his little sister not his brother and so on and so forth. Here is the thing, I don't think that kind of talk is unique to our family and our situation. Every body hates one or all of their siblings and parents at some point in their lives. The difference that I can see, and that I fear most of all, is that while usually kids get over it and grow to be close and love their siblings, my kids may not. They will have this resentment and anger towards their brother, and truthfully their parents, forever.
     While it is hard as a parent to juggle kids, home life, marriage and work it is exponentially more difficult to juggle a special needs child in that mix too. The nature of the beast (so to say) is that he/she really truly runs your life. Every decision that you make from the moment you wake up to the moment you go to sleep in some way revolves around that child. How is it possible that your other kids won't feel shafted, no matter how much you try to over-compensate. Couple that with the resentment they are going to have towards that sibling, as well as the discomfort they may feel about him and it is a really scary future.
     So while most of your kids will hate each other one day and love each other the next, I spend all day worrying about the future. Will my other kids ever get over it. Will the screaming (and other difficult behaviors)  impact them in ways that I can't see and won't be able to see until it is too late? Will they gain from this experience and grow up to be better people for it? Or will they grow up angry and sullen and hate me and their brother. It is really pretty scary to think about.
     The truth is, that we have countless opportunities to screw up our kids while we are in the business of raising them, but I sometimes feel like the scales are already not tipping in my favor.

Knowing When To Stop

     I'm sick. Nothing serious, no big deal, but feeling lousy. Just a sinus infection with a cough attached. You are probably wondering why I am sharing this with you? Who cares? I hear that, but I am sitting here trying to remember a time when I was sick and actually had the chance to do what it takes to get better. I am trying to recall what it felt like to just get into bed and take care of myself.

     Probably, this was the kind of thing that with some antibiotics and a day in bed would have been over before it really even began. I started off right, got the antibiotics and even remembered to take them. Somehow after that, it all went to pot. The kids did not cooperate, the job did not cooperate and the husband didn't either. 

     I obviously had to work everyday, which meant no rest during the day when the kids weren't around. My kids decided this week that each of them should be up at least one time during the night every night. My oldest thought that yesterday morning at 5 and this morning at 4 am were his wake up times. I might have ignored him except that I heard him waking up our houseguest (his uncle) and felt bad and so I jumped out of bed. My husband has been working late every night this week which has meant it was all me all the time in the evenings. Basically it has been non stop. And so, what should have been a sinus infection that would have been over in a day has turned into a cough that won't quit and a pulled muscle in my back from all the coughing. It has been compounded by exhaustion and all around crankiness. 

     I am not telling you this to complain but rather, because I have learned something from this. The bottom line is that being a Mom is really hard work especially when you also work full time (not to mention when you are measured by a quota). It is non stop! As a result what happens is, we don't. We simply don't stop because there isn't any time to. You are like a mouse on a wheel and usually you either can't figure out how to get off or you are afraid that if you do it will be too hard to get back on. Turns out, that is a mistake. If only, I had taken a few hours for myself and let myself get better I probably would be better by now. In the end, I did myself a disservice because now I really can't move because everything hurts and I haven't slept all week. Mistake, big mistake!

     And so, I am hoping to learn from this mistake. I am hoping that the next time I am feeling lousy, I will be smarter and that I will encourage my friends to be smarter too. This way, hopefully, I won't have a repeat of the disaster that was this evening in my home. All of my children screaming at me and me yelling right back at them. (btw- it honestly could have been the other way around). No body was happy and least of all me.

Sometimes the parents are the problem...

     I remember when my son turned 3 my pediatrician informed me it was time to take him to see a dentist. I had total approach avoidance. In my mind I could think of no place that could possibly be worse on earth. We are socially friendly with our dentist and every time I saw him I told him that I was afraid to bring my son to see him. When I finally gave in and took him he was amazing, a total rockstar. Turns out the dentist is the easiest doctor to take him to. I have no idea why.
     It was this same approach avoidance that has been the reason that we have not gone to a hotel with him for almost 7 years. We obviously had no way of knowing how he would do, and truthfully didn't want to risk it. Our friends often hop in their cars for quick family getaways and we are always left waving at the backs of those cars as they drive off in to the sunset. Until now.
     This being yeshiva break week, my sister-in-law and brother-in-law are in town. My father-in-law decided that we should all go away to Palm Springs for a few days . My husband was very against the idea saying as always "what is the upside? If it works, ok, but if it doesn't we are two hours from home with a child in full meltdown mode".  I usually go with that flow, but this time I really felt that I wanted my other children to have this experience. We thought about leaving our eldest at home with a babysitter, but truthfully, I didn't want to take a family vacation without my entire family. And so, at the last minute we decided to join.
     We did not get off to a very good start. It took us 45 minutes to convince our son to get in the car. This has never happened before. It occurred to me, at some point the next day, that the reason he didn't want to go was because he knew that he would miss seeing the mailman that day. After 45 minutes we finally got him in kicking and screaming. At this point, I was already crying and thinking "why can't we ever be normal". Thankfully (and truthfully, thanks to our trusty iPad) he settled down and we were on our way.
     As it turns out though, we are morons! You would think, people in our situation would be better prepared. I am apparently an expert at preparing snacks, changes of clothes and technology for the road but not quite so expert at directions. I very diligently went on Mapquest and printed up the directions but did not read them correctly. As a result, of my confusing the words "take" and "towards", we found ourselves near San Diego at which point we finally realized that we had driven 2 hours out of the way. Yes TWO hours out of the way. It should only take two hours to get there! So after some more tears and disbelief we got back on track, turned east and headed on our way again. About 30 minutes into the correct direction, just as we were pulling off the highway to make sure we were in fact going the right way, our daughter, age 21 months, proceeded to vomit everywhere. So yet another 30 minutes later, with her all clean and me now stinking of vomit we got back on the road. Finally, with our destination in sight, just 5 miles from our exit, my husband was pulled over for speeding. SERIOUSLY! And so, as the cop sidled up to my window, I took one look at him, promptly burst in to tears and said to him "would you mind if I told you about my day". Needless to say, with that story, he very kindly let us go, gave us directions to our hotel and suggested we buy a Garmin. Thanks for the suggestion buddy, wish you had given it to us 4 hours ago!
     Keep in mind that we hadn't even gotten to the scary part yet, the hotel. The good news is, it wasn't too bad. As far as first experiences go, we did OK. Here is the thing, if we let our son do what he wants, follow him around while he does it and don't force him to do the things we think he should want to do, it can work. It gets a little complicated when our other children want to do regular things and we need to split our attentions (yes the life guard had to jump in the pool and rescue our 4 year old) but overall we survived the experience and even came home smiling. My son even said that next time he is going to sleep in a hotel and go swimming again. Success? I think so...
     Lessons to be learned: 1) buy a GPS 2) bring someone to help
With those two things in place, we may even try this again. I hope it won't take another 7 years!

The Sky's The Limit

     I don't think I was always a glass half empty kind of girl. I am not suggesting that I was ever a positive outlook glass always full kind of girl either but I probably fell somewhere in the middle. Sometimes positive and sometimes negative. I will say though, that some of my more recent experiences in the past few years have changed that. Where I was once solidly in the middle, I would definitely say that today, I have slipped over the line and am now pretty ensconced in the glass half empty world.
     As a result, I find that I often focus on the difficulties and the challenges of my situation and I do not often enough stop to see the good. I have a friend, who always tells me that in the business of raising our special needs children it is always one step forward and two steps back. Every time she says that, I am reminded of that annoying game I used to play in camp called John Jacob Jingelheimer Schmidt (or something like that) where you would walk forward singing a song and then double it up backwards and end up where you started. That game really must have annoyed our counselors to no end since it always took so long to get where we were going. I would say that game is a perfect metaphor for my life. I somehow feel like I am on a moving sidewalk but it is not really taking us forward. In a sense I am often watching others pass me by but never quite reaching my goals or getting where I am hoping to be.
     This week though, felt different. I mentioned once, in a previous posting, that it is difficult to describe what is is like when my special needs child succeeds at something. It is euphoric, it is better than anything you can imagine. It is that much greater because I know just how difficult it is for him to do things that are so simple and obvious to others. If you bumped into me just two weeks ago you would have probably noticed that I was having a  complete melt down (there were quite a few people to have that misfortune). All I could think was "I will not make it through this weekend or this life". I was in a pretty bad place. And then, just when I felt I really couldn't any more, my son turns around and shows me that we can.
     For years, and I mean that literally, we have been trying to get him fully toilet trained. (I hope this isn't too much information for some of you but I really want to share it.) He has been peeing on the toilet already for a few years but has been having a lot of difficulty with the other part. I really thought that I would be cleaning up poop accidents for the rest of my life.  Then suddenly, one day, he just plain figured it out. It took a lot of hard work on all of our parts but it felt like a miracle and now (knock on wood) I have not cleaned even a single accident in almost 2 weeks. It is literally astonoshing. He wakes up in the morning, takes himself to the toilet, does his business and then comes and lets me know what he has done. You know, like any normal kid! I truly never thought we would be here, and now, we are.
     If that is not enough, in this same two week period  my son, for the first time basically ever, has expressed interest in a friend. He has been trying to play with our friends daughter for the last two weeks. While we have a ways to go with social interactions, it is possibly the first time that he has sought out a friend and really wanted to play with her. It is amazing. But wait, there is more! Last night, for the first time ever, he asked me to read him a book and he sat through the entire story. Twice! I have never been able to read him a book before because generally after the first page (if we even get that far) he becomes uninterested.
     I know I usually use this as a forum to speak about the challenges and struggles that we face but I really wanted to share the successes as well. Often they are few and far between, but these amazing achievements can really help to carry me through the next few storms. They will make me smile and believe that really, the sky is the limit and if we simply believe in Yonatan and support him, who knows what he can achieve. Hey, one day he may even be The Post Master General!

Parenthood Vs. Parenting

     I love TV. I think it comes from my childhood during which, TV played a big part. We used to come home from school, throw our knapsacks in the entryway and race to get the best spot in front of the tv, or idiot box, as my mother was known to call it. (Just so you understand, the best spot was about 2 ft in front of the TV on a pulled up dining room chair. I must say it is a miracle that we are not all blind). When you were home sick from school, you would grab your blanket and lie down in the corner of the couch with the remote and watch for the whole day. I am pretty sure I faked quite a few illnesses just to enjoy that corner for a day here and a day there. The truth is, it is not just TV that I love, I love movies and reading as well. I think that what I like is to sit and lose myself in somebody else's story and troubles for a little while. I usually prefer fiction because then, when it is over I can leave it behind. I don't have to turn it off and continue to think about the people in the stories and wonder how their lives are today. When I watch a TV show, read a book or go to a movie, all I want is to turn off my own life and my own struggles for the duration of the story telling and be absorbed into their storyline.
     The thing about these stories though, is that sometimes they mirror your life but the similarities get lost in the absurdities. What I mean is, that often I watch in disbelief, and think to myself "could the writers really be that stupid?". I remember in ninth grade my teacher teaching me the concept of "suspending your disbelief" when reading a fictional novel. These days, I ofter hear her voice (no idea what her name was anymore) repeating that line and I think to myself, she couldn't possibly have known how far fetched things would be in todays day and age. It is getting harder and harder for me to do this.
     A few weeks ago a friend of mine suggested that I start watching Parenthood. My cousin was kind enough to let me use her Netflix account and so I started watching the first season. Before I continue, I will admit, that I have been completely drawn in and have stayed up way too late (anyone who knows me knows that means until 10 pm) on too many occasions because I keep having to watch "just one more episode".  My friend was right, it is a good show. I am enjoying it. At the same time though, I keep thinking to myself, seriously? Are the writers that stupid?
     Early on (in episode 1), we are presented with parents who have a son who is odd. I am guessing he is about 7 or 8 years old. I believe in episode 2 they find out that he has Aspergers. Not to knock anyone whose child is diagnosed on the later side of things but if your child has been wearing a pirate costume to school everyday for years it really shouldn't take you that long to figure out that something is not right.
    Watching this show is like watching my life on speed in an alternate universe. It is as if they have the components but the picture is just not coming together. For example, in a single episode they manage to hire a behaviorist, on the first try she gets the kid to play a board game, go to the park with her and he makes a friend who he supposedly plays four square (no idea what that game is by the way) with, for two hours. Where do I start? Is it with the fact that in reality it can take a behaviorist weeks to gain a childs trust? Or that a child who has not had a friend ever does not suddenly play a game with a complete stranger for 2 hours or that no behaviorist in one day plays with the child at home, then at the park for two hours and then stays during dinner? Like I said, I like the show but I am having some trouble suspending my disbelief.
     I think that what this highlights for me is what I often feel. When you are living in something and experiencing something unless someone is sitting in your seat they can't possibly really understand. They can listen, they can care, they can offer advice but they can not possibly really get it. This is true of any situation, not just the one I find myself living in. The writers of this show are attempting to mimic the life of a family dealing with this but truthfully, they just don't really get it. They can research it, they may have even spoken with families who deal with this but the storyline somehow leaves me wanting. Just like it was truly difficult to believe that Meredith Grey (of Grey's Anatomy) after drowning, could live with full brain function after having been dead for 3 hours, it is difficult to believe this entire story line.
     I think what I am trying to say with this TV metaphor is that people don't get it. To be clear, I don't mean this in a negative way. It isn't their fault, honestly it is their blessing. I hope they never do have to get it. But still, often, it can be a lonely existence. It is lonely simply becuase while the people around you may really be trying to understand, they just can't.
In case you are wondering, yes I still watch Grey's Anatomy and yes I am still staying up too late enjoying Parenthood....