"I Pity The Fool"

     What is amazing about the Mark family is that we always try to excel at everything. We never want to be considered slackers and so we ALWAYS make sure to take everything to the next level. Really, a trait to be admired I think. Allow me to share with you our latest escapade....
     We went to Israel for Pesach. We had a lovely time. I will not pretend that it was easy and will admit, that for the first week my husband and I told anyone who asked that the flight had been the best part so far, but truly it was a lovely trip. Until... The night before we left my middle son became sick. He was burning up with fever, vomiting and had diarrhea. A few hours later, my husband began complaining of having the chills and feeling achy. By the next morning my middle seemed to be on the mend and I thought great, just a 12 hour bug although my husband still looked terrible. Like any good wife, I assumed he was just being a man and made him promise that he would be helpful on the flight home that night. When we got to the airport my oldest threw up all over the floor while we waited for the flight. Of course, I thought to myself, 12 hour bug 15 hour flight we are screwed. He proceeded to vomit a good portion of the flight but magically (and with great talent) got it all in the bag every time (great flying tip btw, way better than the airline sickness bags are the plastics that hold the airline magazines, try it next time. They are the perfect receptacle). When we got home he seemed to be getting worse. He had terrible diarrhea that every time I thought was gone came back. He was in and out of school and it just didn't seem to be getting under control. And then, I got sick. Terrible vomiting and stomach pains. I called the pediatrician and said "you have to help us" and had everyone in the family tested.
     There is a virus going around called Norovirus and that is what we thought we had. The thing about us though, is that we love to do everything the best we possibly can, and so we assumed we just couldn't shake it. Turns out we were wrong, and we could do it even better. On Sunday afternoon the pediatricians office called to inform me that we had tested positive for Shigella, which is a bacterial infection. I was elated, I cried tears of joy because I thought, yay we are all going to finally go back to feeling normal because we can take anti-biotics. HALLELUJAH! In passing she mentioned to me that we may be contacted by the health department since the lab has to report Shigella to them (yes Maimonides families, that email was about us. The mystery is solved). OK I thought, no problem. WRONG!
     The next thing I knew, the sh**t hit the fan (literally). Due to the fact that my son is in a class A sensitivity group (transalation: a class with special needs children) he had to be removed from school for a minimum of two weeks. So now, even though we are all finally healthy, I have him home from school indefinitely. Without going into all the details of what made yesterday insane suffice it to say I believe it is a miracle that my pediatrician has not yet fired us as patients. It was not a great day. I did quite a bit of crying and self pitying.
     When I got into bed last night I was exhausted, and sorry for the fact that I had cried so much. I finally felt sick of feeling pitiful. And so, I woke up this morning with a new resolve. I will no longer be pitiful, I will be stoic. Doesn't matter what you throw my way, I am a rock and I can not be knocked down. I am stoic. I am loving this new stoicism. It is quite liberating. So today, when I noticed that my son had a tooth that looked like it was rotting and I took him to the dentist and found out that not only does the tooth have to go but that he also has no adult bottom front teeth coming in and never will, I just smiled and nodded and said of course. Of course he has no front bottom adult teeth because we are the Marks and we love to excel at everything. So we can't just have bad teeth or cavities, we have to have no teeth,  STOIC. I am telling you, it is awesome.
     And so, I encourage you to try it. Send something my way that you think will phase me. It won't because I am stoic and loving it.
     Stay tuned for the continuation of the teeth capades. I am sure they will be equally as entertaining.

A Really Bad Day

     Today was a difficult day. One of those days where part of you wants to go back and try it again and the other part of you can't believe you made it to the other side. Today may have been the most difficult one I have ever had with my son. It is hard to say if he was the problem or if I was. I am not sure what made this one the one that put me over the top. But it was that one.
     It started off bad, the truth is the last two weeks have been quite challenging. I don't ever know what is going on in that mind of his, or what sets him off but it has been this way for more than a week. He has really been giving us a run for our money. From the start, he was being difficult this morning. I should have known when he flagged down one of my neighbors and climbed into her car that it was only going to get to get worse from there, but somehow I decided to continue on with the day. Mistake #1.
     Every Sunday morning we go to The Coffee Bean. It is a long standing tradition. One I hate to punish him from and so I took him. My husband went to baseball with my middle son and My oldest and youngest went with me. We started off OK there but quickly spiraled downhill.
     I am not sure when the exact moment was when I began to lose it. It may have been when I had to drag him out of the Office Depot next door because he ran in the door, when the store was still closed, and they had opened to let an employee in. It could have been when I had to physically remove him from The Coffee Bean, dragging him by the arms in front of many people I knew. Possibly, when I realized that I could honestly care less what people think of me or when I realized I didn't even care what I thought about me. Maybe it was when I shoved him into the car in a pretzel fold and lodged him between the front and back seat so I would have enough time to get in the front seat and lock the doors before he could get out. It might have been when I actually drove home with him climbing between the front and back seat, a seatbelt a long lost dream. Or at the moment when I realized that if I was pulled over by a cop with an 8 year unbuckled in the front seat, tears streaming down my face, mascara everywhere he would likely arrest me and jail might have been a reprieve. Possibly, when I dragged him out of the car and gave up trying to get him in to the house because I was sweating so badly and shaking so much from all of the physical exertion and then told my son when he threatened to run away that "it was fine with me", sat myself down on the stoop and waited for my husband to come home and force him into the house. When I realized that he is already much stronger than me and that this is what the rest of my life looks like?
     I am not sure which moment it was. I can say that for the first time ever, as I was packing to go away for Passover, I looked at my husband and said "this may be a suicide mission and we should just stay home" and that we must be crazy to get on a 15 hour plane ride with him and then have him out of his routine for two weeks. Maybe it was the guilt that I felt over having made my other son leave his baseball game early. Or that fact that I left my 2 year old at Coffee Bean with my Aunt with out even a backwards glance.
     I don't know why today was the day that I thought to myself "I can't do this anymore" but now that the day is over, and my house is finally quiet (dirty and messy too, but at least quiet). Now that I have taken 3 showers because honestly that is the only place in the house where I can lock the door and be alone and breath, I know that I will do it again tomorrow. I know that I will, because I have no choice. We don't get to choose, that is not an option. And so I will wake up tomorrow morning, get my kids dressed for school, work all day, make dinner and finish packing for our trip (and yes, when I say finish packing I mean packing LOTS of drugs)  because that is what we parents of special needs children do. We just keep doing. We also never stop hoping that tomorrow will be a better day.

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