When The Nickel Drops

     For my middle sons 4th birthday I decided he should have a bike. My parents came to town and we all got in the car together to go to the local bike store to get it. Being a 4 year old, he wanted something else instead, probably a lego kit or another action figure or whatever he was into at the time. But as his Mom, I decided that at 4, you need a bike and that he was getting one. On the way to the bike store, I was still  working on convincing him what a great present it was when he asked me if his older brother was getting one too. I wasn't quite sure what to say, so I told him I wasn't sure. He looked at me and said "well YoYo has squishy hands so riding a bike will probably be hard for him". I am not really sure what squishy hands meant, but I did understand that he "understood". At that age he already knew his brother was different and that was how he expressed it.
     About a year ago, my husband and he were sitting on the couch watching TV. They were watching a show called Ninjago which is about lego ninjas who are "brothers". The white ninja, Zane, is different and is always "annoying" his brothers. In this particular episode we discovered that Zane is in fact a robot and that is the reason he is different. Sensei Woo, the leader and mentor of the ninja's, explains to the others that even though everyone is different, he is still your brother. At that moment, my son turned to my husband and said "oh, like Yonatan" and promptly turned back to the tv with out any further discussion.
     This past Sunday my husband went to a donate blood at a local blood drive. My middle son decided to go with him to witness his good deed. On the way there, he was asking my husband questions about blood and what it means to donate it. For some reason my husband decided to use Ninjago as a metaphor for giving blood. He talked about how Zane is a robot and just like him we also have a "jet pack" on our backs that turns our blood on and off. His little brain got straight to work and he said to his father "oh, can we turn Yonatan  off of special needs" followed by "Do I have special needs?".
     We have never had a real discussion with our 5 (almost 6 year old) about his older brother. But we know that he "gets" it. What exactly he gets, I am not sure of. But I know that  he gets it. In asking that, he wanted to know how we could help his brother. He recognizes that his brother is different and wants to help him. He is amazingly patient and compassionate towards his brother. He doesn't want him to be different because he sees that it is hard on Yonatan. He asks me all the time when he and his brother can go to the same school and why Yonatan can't go to a jewish school. It is always on his mind.
     I don't know when the right time to have the "talk" is. Truthfully, I dread it more than the "other" talk. It seems though, that I may not need to. That he is a pretty bright kid and so he is figuring it out on his own. That over time he will understand more and more and ask us when he has questions. It is interesting to watch this happen and to hear a 5 year olds perspective. It seems that he is piecing this together on his own in a childs way and I am pretty sure that we adults should not get in the way of that.

Palm Springs Redux

     It turns out that I have been blogging long enough that I am now able to write sequels. It is hard to top last years Palm Springs adventure (if you haven't read it yet, and want a good laugh, click here), so I won't try.
     After last years "success" we were far more gung-ho to go away this year than last. This year, both my sisters-in-law and their families came to LA for winter break and so the whole family was going away together. Everyone was going for 2 nights and 3 days. My husband and I decided that two days and one night was enough for our oldest. I did not want to take off to much time from work anyway, and so we decided that I would come home with him a day early. We came armed with our babysitter, plenty of snacks and technology and off we went.
     I drove with the kids and babysitter and my husband hitched a ride with one of his sisters. Happily, I employed a GPS this time and made it in great time (it helps when you don't drive two hours out of the way). The kids did great in the car, until the last 10 minutes, but I have no complaints about that.
     When we got there, my son needed some time to adjust to the new setting. He doesn't transition easily and was having a bit of a hard time, so I set off to the pool with the younger two and my husband took him for a drive and some ice cream. By the time he got back to the hotel he was ready to swim and enjoy. He did great the rest of the first day and even slept late the next  morning.
     The second day was a little more challenging, but overall, he did great. (The thing about him is that even when he is great, he is a handful.) I made sure to pack it in around 3:30 so we could leave on a high note. All in all, it was a great and hugely successful trip. My younger kids had an amazing time with their cousins and  my oldest did great. Yes, I did have to lie to him and tell him that both Monday and Tuesday this week were a holiday so that he would be able to get in the car and leave the city and not fear missing the mailman (that one may not work next year since he saw the mail when we got home and couldn't get over that the mailman came on a holiday). Yes, I had to feed him way to many snacks on the way so that he would be OK for the drive. But truthfully, he did great and I am really proud of him.
     The problem is that I am a glass half empty kind of girl. I wish I weren't, but sadly I am. As I got in the car to drive home, I was truly proud of his success but at the same time I felt myself tearing up. I was crying, because even though he was a total rock star I still dream of a "normal" life and a "normal" family. I still wished that we could be a family that could all go away together for 3 days and not two. I wished that I didn't have to end the vacation early in order for it to be successful. I recognize fully, that this is my problem and not his. I know that I should accept our family for who we are and not for what other families are. But it is hard. So while I am insanely proud of my son for being amazing and allowing us to have a nice family vacation, I still wish.
    Like I said, glass half empty...

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.