Tuesday, December 20, 2011

Happy Holidays?

     Tonight is the first night of Channukah. To me, holidays are always a joyous time to spend with family and friends. As a child I loved Chanukah, I mean what child doesn't? Gifts every night, dreidel with gelt, chocolate coins and latkes. Nothing not to love. I remember, as a kid, that my dad had this huge plastic coke bottle (probably about 4 ft tall) filled with pennys. We used to bust it out and play dreidel with those pennys. We always had the best time. I remember the anticipation as my mother went to her room to get the presents just as we were finishing singing Maoz Tzur. The excitement when I opened a gift and truthfully, the let down when it wasn't something I had been hoping for. I have amazing memories of Chanukah at home.
     Now I am a parent and let me tell you, that bubble has been burst! Chanukah is a whole different story when you are a parent. The  exhaustion that comes from running around trying to get the gifts, compounded with the stress of choosing the "right gifts", coupled with the annoyance of having to hear every day for a month, before it even starts, about what gifts your children want for Chanukkah. I am now actually amazed that my own parents didn't throw in the towel when we were kids. I mean there were seven of us multiplied by eight nights. To me that equals hell.
     For us though, there is a whole added level of stress and honestly, pain. It is very difficult to buy our oldest son gifts. There are very few coneventional things he enjoys. I could walk up and down the aisles at Toys R Us, Target and Walmart and walk away with out even a single idea. We literally rack our brains for what to get him . Where my four year old has spent a month making a list, my six year old has not even mentioned Chanukah. I was actually pretty lucky this year because he has recently gotten into guitars. As a result, I was able to knock off one night and buy him a child size real guitar, which he seems to love. I literally wiped my brow with relief after the gift unwrapping. It was a "Chanukah miracle" to see only smiles.
     The pain though was not as easily assuaged. It is very hard for me, a religious mother, to watch my son show little interest in a tradition and holiday that has always been such a happy time for me. We stood there, lighting the menorahs this evening, and my oldest was pretty much uninterested. My four year old knew each bracha and was so excited to light the candle. My 19 month old shuckled and swayed, like she has seen her father do when he prays, as we recited the blessings and my oldest had to be begged to stay put and light his menorah. As his parent, it is very difficult for me to think forward towards all of these types of events in jewish life that hold little appeal to him. It is sad to think, that he will never find joy in these integral parts of religion and childhood. These times are so important in a jewish home and they simply don't hold that same excitement for him.
     I think, when you are a mother, you experience everything differently than you did before. You view everything from the view point of your children. You feel happiness and joy when they feel and experience it. Unfortunately, it is these holidays and times, which are meant to bring joy to any jewish home, that make it all the more difficult for me. It is hard to find that same joy that I felt as a child when I can not witness my own child experience it. 
     

Wednesday, November 23, 2011

Team Players

     You know the expression "it takes a village to raise a child"? Well in the case of a special needs child it actually takes a city or some may even say the entire state. With any kid it is safe to say that the parents, grandparents, teachers babysitters etc... are all involved in the raising of a child, with a special needs child you have the addition of the OT, the PT, the aides in the class, the speech therapist, whoever manages special ed in the school, the behavior therapists, the myriad of doctors, the entire state in which you live who helps with funding for all of the above people and in our case even the mailmen.
     All of these people, who on a daily basis, assist in the betterment and the challenge of raising your child really become part of your family. You rely on them to give him what he needs and to help you learn how to help him develop. They come in to your home multiple times a week and are part of the fabric that makes up your day and your life. I can honestly say that we would not be where we are today, or probably anywhere, without these people.
    It is because of the fact that they are so integral in the life of your child (as well as your own) that it is often heartbreaking when one of them moves on from their job. Like in all industries, people switch careers or move to different agencies and  leave their previous positions behind. The problem is, that when you are the one being left it can be extremely difficult to find a replacement. More often than not you do not get to choose who the replacement is and usually the change can be very upsetting to your child. It can take months for him/her to build a rapport and a relationship with each therapist, doctor or caregiver and can take double that for them to let someone new in. In addition, to some extent, you have to teach them everything that the previous person already knew about your child and your child has to learn their approach and their way of doing things. While I recognize that this can happen with any child, it can be intensely magnified when it happens to a special child.
     For more than 6 years I have been seeing the same pediatrician. They are a practice of 5 fantastic doctors but when it comes to my eldest I will only see mine or one other in the practice. It isn't that I don't think that they are all equally qualified and wonderful it is simply that I don't have the energy to have to give the history each time I visit the doctor. I am just way too tired for that. It is the same feeling with a new therapist, while I am sure the new one is probably great I really don't have the energy, or truthfully the inclination, to have to go through the "history of Yonatan" each time someone from our team leaves.
     The truth is though, it is more than that. These people, the members of the "Yonatan Team" are part of our family. They each contribute immensely to his care and have made such an impact and difference in his life. When one leaves it is just like losing a member of your family and it is painful each time. It is difficult to watch your child have to adjust and it is hard to adjust yourself. Each time I get that dreaded phone call from a member of the team in which they make the "I am leaving the..." announcement I end up in tears. Not just tears running down the cheeks by the way, sometimes a whole crying jag. It is very difficult to lose and say goodbye to someone who has so incredibly impacted your life.
     So while we wish you luck Alison please know that we will really miss you and move forward feeling very good about the fact that you have made a huge difference in a very special boys life. (you can feel a little bad about abandoning us too :)

Thursday, November 17, 2011

B- Anyone?

     My Dad often recounts the following story. He tells of the time he was at a friends wedding and the Rabbi officiating the ceremony was going on and on, for quite some time, about the institution of marriage and its responsibilities. At some point during the Rabbis speech, a close friend of his stood up and called out to the groom "take it for pass fail!". This story has become somewhat of running joke in my family. I have to say, his suggestion has merit. I mean really, must everything we do be A+ quality?
     Of late, I have found myself not only thinking of that story but also telling people of my new outlook on life. Instead of always shooting for the stars and aiming for an A+ I have decided to embrace mediocrity. You should try it. It is truly liberating. Lets be real, most of the world is running at below average anyway, why must I always be different? So what if the look of my blog isn't beautiful and is really just a template. Who cares if my house is a little (ok, a lot) messy, as long as it's clean right? Is it really a problem that I didn't proof-read the email that I sent to a potential customer today who called me laughing because my iPhone had auto-corrected the word tried to tryst? I mean, she did laugh and I did close the sale...
     The truth is, I realize that I accomplish more in an hour than most people do during an entire day, so who cares if only most of the I's are dotted and only some of the T's crossed? Do you think it's an issue? There is the one thing about this great new plan of mine, to embrace mediocrity, that gives me pause though. It seems that I have surrounded myself with a whole bunch of over acheivers. It is a slight problem. If I embrace it too much I may end up feeling a wee little bit bad about myself. Instead of being happy because I have decided to let go, I may just start to feel a little pathetic. Like I said, it's a problem. I guess I will just have to think of a few things to excel at. Any suggestions?

Sunday, November 13, 2011

Speaking For The Children

     Every morning at 7 am I turn on the Today Show. I like to watch the news in the morning and see what is going on in the world. This week, aside from learning the answer to the burning question of "where in the world is Matt Lauer", I found myself very disturbed by what I saw and heard.  I recognize that most days in this country, and around the world, there is senseless violence and terrible things that happen. But this past week, it wasn't only about what happened, but also about the way the people around the "incident" have been reacting.
     Unless you live under a rock, I am sure you know what has been going on with Penn State University. It is a terrible story. It is sickening. It is disheartening to every parent out there. Just knowing that there are monsters in this world that would pretend to do good in order to do so much bad can scare you enough to keep your kids locked up in your house all day long. But what is so much more upsetting and that much more disturbing is knowing that there are people out there who would put their own personal career goals, and that of their institutions, ahead of innocent children. There is something so sick about the fact that more people are upset to see their coach "retire" than they are to know that the very same coach had the opportunity to protect these children and didn't. That not only, is the pedophile to blame but also countless other adults who could have helped these children but in the name of football allowed this to continue. To turn on the news and see students and adults rioting over the fact that the coach was fired and not over the fact that this horror was perpetrated is insane.
     I sat at a table this weekend where this topic was discussed and someone, who was in no way defending what happened, posed the following question: "Imagine if your greatest dream was to coach college football and you had the opportunity to learn under the best. Would you be so quick to inform about what you saw (to the police) if you knew that it would be the end of your career?" I can tell you unequivocally that if I had witnessed what he witnessed, not only would I have called the police but I would have jumped in that shower and ripped the guys eyes out. There is no excuse! There is no explanation for not protecting children. It is unacceptable that barely anyone has talked about the tragedy of what has happened to these children because they are so focussed on the careers of the people who allowed it to go on for all those years. I am sickened.
     As a mother,  I can tell you that this is one of my greatest fears. I worry every day that someone will view my child as weak and will prey on him (or them) in the way that predators do. After seeing what I have seen this entire week I am even more fearful. I am scared because now, it is not only the predators that I must fear and worry about but also the people surrounding them who are to cowardly to speak up for our children. I am truly disheartened by the world this week.

Tuesday, November 8, 2011

Attention Please!

     When you are a parent (especially a working one) you are constantly being pulled in one direction or another. Honestly, most days, you are being pulled in multiple directions at the same moment. Making sure to always give everyone and everything in your life your full attention is no easy feat. To be completely honest, it is exhausting. The goal it would seem, is to prioritize. To line up all of the people and things in your life that need your attention and decide how to divide them and it on any given day.
     As I am sure most of you know I am one of seven kids. Inevitably, when you share that information with anyone from a family of 5 children or smaller you always get the same questions "did you feel loved", "were your parents able to give you any attention" "did you ever do anything alone with your parents" and some more questions along those lines. My response is always the same, an emphatic "of course". I truly believe that there is no a limit to how much love a parent can feel whether they have one kid or 20 (that number inspired by the Duggard announcement  today). No matter the number of children there is always enough love for all of them.
     I can tell you what my parents did. They say that every child has different needs at different times in life and you need to recognize when one of them needs some extra attention and prioritize accordingly. I have always appreciated that approach and agreed with it. It seems based in good logic and hey, I turned out ok.
     But... as it turns out, it really isn't that simple. That is a great formula when all of your kids have basically the same "needs". One may be a little more complicated or needy then the next but their basic make up is the same. What does one do when they have a child who is, by no fault of their own, needier than all of the others all of the time? How does a parent balance that childs needs with those of their other children? How do you make sure that the "typical" children don't feel shafted every day? Regardless of what any day brings it is a pretty sure bet that your "special needs" child will take up more time and energy. I would venture to say that it is a given that they will end up with more of your attention no matter what. What do you do then? Do you over compensate? Work really hard to make sure that the other kids are showered in kisses or candy or whatever it takes? Does carving out some time each week for alone time with them really help to ensure that they won't grow up resentful? What is the formula? Or, do you just do what you do and hope for the best? I mean honestly, doesn't everyone resent their parents at some point anyway?

Wednesday, October 26, 2011

Teaching By Example

     I was a mean girl. I might wish it weren't so, but sadly, it is the truth. There were 5-6 of us in our clique in elementary school and it is a sad but true fact that when you woke up in the morning and got ready for school you never knew if you were going to be on "the in" or on "the outs" that day. We were terrible to each other and probably to those around us as well.  It was not a pretty time in my life. Ironically, we are all friends to this day. I guess then that we weren't TOO bad to each other, although I would speculate that our parents would not agree with that assessment. I am pretty sure that it was in those days that my otherwise spotlessly clean mouthed father (a father of five girls, I will add) coined his well known and well used phrase "girls are bitches".
     Interestingly enough, when I look back on those days, I am not super remorseful.  I mean, obviously I wish I hadn't been mean but... OK, I can hear you thinking at this moment "really, what's wrong with her" but it is true. What I mean to say is, aside from being mean to each other there wasn't anything so horrible that went on. Certainly nothing along the lines of the Lindsay Lohan movie Mean Girls. 
     There is however, an incident from my childhood that I do to this day feel guilty about. I would like to believe that I have felt guilty about it for a long time and not only for the past 6 years, although honestly I am not sure. I remember vividly one shabbat afternoon having a playdate with a friend of mine from down the block. We were playing hide and seek and there was a girl at my house as well who was a few years older than us who had "special needs". I clearly remember being annoyed that she was there and complaining to my mother that she was "bothering us". I was probably somewhere between the ages of 6 and 8 if I had to guess.
     Like I said, I would like to believe that I have always, since I have been old enough to understand, felt badly about the way I acted. About my intolerance. But truthfully I can't honestly say whether or not I have always felt bad or if now that I have a sensitivity to this topic I have guilt when looking back. What I can tell you for sure is that I very clearly remember the incident.
     I recently had the opportunity to observe my son around many children. Some of them were related to him and some of them not. These were mostly children who know him but do not spend a lot of time with him as opposed to the kids in LA who know him very well and for whom he has always been around. I watched carefully. I wanted to see the different interactions. I quietly observed the various children and their responses to having him around.  Here is my take away. It is so incredibly important to expose your children to kids like Yonatan. There is a certain sensitivity that exists just because they are "used" to being around him. I say this because I care not only about my son, but about your children as well. Trust me, it will be amazing for your kids.
     I have seen this theory in action. There is a child in LA with Downs Syndrome that has been in one of the Jewish day schools here since early childhood. He has been in the same class with the same kids for about 11 years. It is amazing to see the incredible impact this child has had on the typical children in his class as well as the entire student body. He is just one of the gang! Trust me, exposing your children to children like mine will truly make them better people. They will learn sensitivity and patience in a way that is best taught by example. I really believe that if you have not yet introduced your child to a child with special needs, you should do it today.
     You may not believe what I am about to say but I started this post because I wanted to tell the story from my childhood. I wrote it, because I truly feel that it is important to teach this lesson to children (and adults). Now that I have put it in writing I realize that it is also the perfect place to tell you about The Friendship Cirlce. The Friendship Circle is an organization that we are a part of. It is a place for children like ours to go and make friends, to experience the same social friendships that "typical" kids experience. Honestly, the friendship circle does exactly what I am urging you to do. It exposes your children to mine. High Schools students from many schools throughout Los Angeles  (and the country) volunteer on a weekly basis to come and spend time with special needs children through a variety of programs. I can tell you that while my son is benefitting, so are the children who get to be with him. I can tell you with certainty that it is changing my sons life, but I can also say unequivocally that I have seen firsthand how it is changing the lives of the children who volunteer to spend time with him each week.
     We are raising money to help support this amazing organization. Click here to learn more:
http://www.walk4friendshipla.com/yonatanmark

Tuesday, October 18, 2011

Welcome Home...

     This has been a pretty crazy week for the Mark family. Most weeks usually are, but this one may take the cake! I am in Israel with my husband and three children. We arrived before Yom Kippur and are leaving after Sukkot. Last week, we learned that while we were here celebrating the holiday my husbands grandfather fell and broke his hip, his great aunt was put on a respirator and someone very close to our family was succumbing to cancer. As you can imagine it has been a rather depressing week. Just this afternoon we attended the funeral of that close friend and his passing is truly a great loss for our family.
    In the middle of all of this was today.  Today, we were "lucky" enough to be in Israel on what can only be described as an awesome day. When I say awesome, I mean in it in its literal sense and not its usual slang. Today was truly an AWEsome day. By being here on this historic day, we were able to be part of the day Gilad Shalit returned home. The feeling in this country today is indescribable to anyone who has not experienced it. Today was a day so full of happiness yet so tinged with sadness. To see this man return home to his family, to think of his mother and father opening their arms to hug him for the first time gives me goose bumps. To imagine what he must be feeling and thinking, what each and every first must feel like to him, to look out the helicopter window and see the land of Israel...there just aren't any words.
    But, it is not only about the wonder and the amazement and the joy. It is also about the price that had to be paid to bring him home. One must also think of all the family members who have lost loved ones to terrorists who walked free today. We must fear and worry about what the consequences will be. Will someone who was released today be next weeks terrorist? Have we set ourselves back by showing that we will go to any lengths to free one single Jew? I don't really know if there is a right answer or how one makes the decision. I am certainly happy that the decision was not mine to make. 
     I wonder what the world sees today. Being in Israel I can tell you what I saw. I saw streets that were empty because people were at home watching the news. I saw an entire nation waiting for its soldier to return. I saw tears in the eyes of everyone here.  My sister noted the soldiers watching the live footage as they stood guard at the entryway to where she lives. I felt and saw a nation that told the world the the Jewish People are one. I felt the pride of this nation. I felt God. I wonder, is that what the rest of the world saw?

Tuesday, September 13, 2011

Disrupting The World

         I am currently at Tech Crunch Disrupt with my company Farmigo. We are here competing against 29 other companies in their Start-Up Battlefield competition. It is a great opportunity for us as well as the other companies to let the technology world know who we are and what we are trying to accomplish. Farmigo was the second company to present in the competition yesterday. (Here is the link to Farmigo's presentation:  http://techcrunch.com/2011/09/12/farmigo-tapping-into-the-power-of-the-web-to-bring-you-fresh-veggies/ )
     When I told my four year old son that I had to go away for a few days to Start-Up Battlefield he immediately perked up at the mention of a battle and asked me what kind of battle it would be. He, of course was envisioning some awesome Super Hero battle with fire balls and flying machines. Something he has undoubtedly seen on TV and has obviously found pretty cool. Stop, hold your judgement of me, yes I let my kids watch too much TV and way to many shows with super heroes battling it out. Yes I know it's not good, no it probably won't change any time soon.You know what, my mom let me watch TV and by all accounts I came out passably OK.
    In any event, as you can imagine, this competition is not that kind of battle. In fact, it is a really cool conference. For me though, the coolest part is the response that we have received since our presentation. I have been manning the Farmigo booth, handing out organically grown apples provided by one of our local farms and hearing what people have to say about Farmigo. I have to tell you, it feels great. Countless people have come over to tell me what a great thing we are doing for the world. We have already had an amazing response to the challenge set forth to the audience by my CEO, Benzi Ronen, During his presentation Benzi challenged members of the audience to go out and become local heroes and create CSA groups (or pick-up sites) in their area. He has offered the first 100 people to successfully launch pick up sites, using the new Farmigo Marketplace, free produce paid for by Farmigo for one year. 
    You know what, I actually kind of feel like a hero today, maybe not the kind in a super suit that my son is talking about, but the kind who is part of something that is really making a difference in this world. It feels good to know that I am part of a movement to change the way we (by we I mean the world) eat. It feels wonderful to know that I am part of helping local businesses grow. I am proud of the fact that by growing local businesses I am helping to reduce pollution and hopefully global warming. It feels right. Maybe next time, when I tell my son that I am Super Mom it will not only be because I managed to carry him and his brother and sister through the world for another day but also because I am making a difference and hopefully helping to "disrupt the world".

*sign up to be a local hero at www.farmigo.com

Sunday, August 14, 2011

All good questions, no good answers....

     Recently, my 4 year old has begun to ask us lots of "why" questions. He is a very bright kid who doesn't miss a beat. He has basically been asking questions since the day he started speaking at 10 months. Question after question after question. As he gets older though, he is beginning to notice the differences between himself and his brother and has started to ask us about them. The first question came a few months ago when my parents and I took him to buy a bike for his birthday. Before we even got out of the car he asked me "Is Yonatan going to get a bike for his birthday too?" When I answered him that I wasn't sure he told me "oh right, his fingers are squishy so it may not be good for him". Not sure what that meant in his little four year old brain, but it became obvious to me that he was beginning to understand that something was somehow different.
     Now that he is a little older the questions have become clearer and more complicated. Things like "why if I am four and a half and Yonatan is six do I speak better than him?" or "How come I make poop on the toilet but he doesn't?", "Why can't I go to the same school as Yonatan?", "If Yonatan was in my school he would be in the same class as ....". With each new question, we struggle with the appropriate answer. Not because we are trying to hide anything from him (and even if we did want to, it's pretty obvious. Not much room for secrets here) but because we don't know how to respond. How do you explain to him that the brother that he so completely adores is "different". What does different even mean to a four year old or for that matter to an adult? I sometimes struggle with how to describe him to adults, since he is so complex, let alone to a child. What is the best way to convey this to a little boy without changing the way he see's his brother and without diminishing the way he worships him?
     I don't have any good answers. In fact, I am looking for help with this issue. I am sure there are plenty of books I could buy online or at Barnes and Noble to read to both myself and my 4 year old that could give me guidance, but I don't really want to. I would like advice from someone who has gone through this. Ideas from someone who has experienced it and knows what it is like to be in my shoes. So if anyone reading this knows someone who might be able to help me, or can help me themselves I would really appreciate being put in touch with them or speaking with you. You know what they say, it takes a village to raise a child!

Wednesday, August 3, 2011

Hard Habit To Break

     So, by now you all know how busy my life is ( as if you didn't already know before I started a blog). Most of you probably also know that I have recently started a new job. I am now doing sales for a company called Farmigo. Not to bore you with the technical details but, Farmigo has a web based software system to help CSA's manage their CSA programs. For those of you who don't know what that is, CSA (community supported agriculture). are those programs that you subscribe to for a season and receive a weekly (usually) share of organic, fresh, seasonal fruits and vegetables. I remember reading about CSA's for the first time in Bon Apetit about 7 years ago and turning to my husband and saying that I really wanted to join one of those. His response, which will not shock most anyone who knows him, was "that's ridiculous, you buy everything you need and more at the supermarket". He is ever the frugal one :).
     You may wonder why I am telling you this since you probably don't really care what I do for a living and in all likelihood don't have a farm and therefore do not need Farmigo. As a working mom, who works a full day, I often struggle with what and how I am going to put on the table for dinner. More often than not, my kids eat before I am even home from work and as a result the three most popular dinners in my home are Mac N' Cheese (and not the good kind that adults like), hot dogs and frozen french fries and chicken nuggets and frozen french fries. Obviously any kids dream. We go through ketchup in our house like other people go through water. I often think, that if I did not work full time, my kids would eat amazingly nutritious meals since I really do love to cook. Don't get me wrong, this is not me complaining about being a working mom. I do not envy stay at home moms, I do often revere them though. I am pretty sure that if I were a stay at home mom, someone would end up dead and I am not sure who would be on the losing, or winning, side (whichever the case may be).
     The thing is though, that my new job has awakened me to the need to give my  kids better healthier foods. I don't just mean NOT feeding them processed chicken nuggets and hot dogs full of nitrates. I mean feeding them organic grass fed meat and chicken and milk that isn't full of hormones that are causing girls to develop early and boys to have more estrogen than they need. I mean teaching them to eat as they were meant to. To eat those foods that are in season. Teaching them about polluting the environment less by not trucking their foods across the country. Helping them to understand the value in supporting your local businesses so that the smaller people don't loose to the bigger businesses that are thousands of miles away.
     More and more I have been hearing stories of younger people who have diseases that people their and our ages should not have. In the last few months alone, I have learned of more people than I can count who I have known for a long time, who have cancer. I can't help but think that part of the problem is what we eat and what we feed our kids from a young age.
     If you know me then you know, that I am the first one to let my kids eat snacks, I cook with oil, love red meat and bake with margarine. Substitutes like buttery sticks and Pam just don't do it for me. I don't usually think about these things but now think it is time I started to. I am sure things will not change over night, as we know, Rome was not built in a day, and I often really do need to rely on short cuts. I also need to work with what my kids will eat. for example, my oldest has difficulty with certain textures and really only likes specific foods.
     This time of year,  more than any other, we are reminded that we can not escape G-d and his plan for us. Regardless, I want to feel like I am doing my part. I want to feel that when I am drowning in the ocean and the whale offers for me to hop on his back, I realize that it is my chance to be saved. I know that if I don't start to change the habits in my home now, it will only get harder. I would like very much to stop hearing sad stories and only hear of people who have overcome the illnesses that they shouldn't even have had.
     I know what you are all thinking. Her biggest challenge of course will be her husband. Organic food can get really expensive :)
* If you are interested in learning more about CSA's or similar programs you can check out localharvest.org
    

Tuesday, July 26, 2011

Selfless or Self Less?

     I was watching The Today Show this morning and they had a segment about women who choose not to be mothers. Ann Curry interviewed a woman (whose name I don't recall) who wrote a book on the topic. During the course of the interview she mentioned that she had received the exact feedback that she had anticipated. Comments like "you are selfish" or "you will regret it one day when it is too late". She of course does not expect to feel that way ever. For some reason the interview has stuck with me and I have been thinking about it all day.
      The truth is, it is not a feeling I understand. I have always wanted to be a mother.  I honestly can not imagine what it would feel like to not want to experience the most amazing kind of love out there. It is not a love that can be described to someone who has not experienced it. You can't explain how holding your child for the first time feels, or the joy you experience when watching them take their first steps, the first time they hug or kiss you or the first time they pretty much do anything.You can't explain what it means to be truly selfless. What it means to really never put yourself first.
     Recently I have been experiencing something else, something that I believe goes hand in hand with this. I have been feeling to some degree the loss of self. I don't mean being selfless, I mean the changing from the person I was to the person I am now. I think it's natural, I think once you become a parent your life is changed forever. You are never the same person you were because now you have to evolve to fit your new role. That is not what I mean, as the mom of a child with special needs, I find that being that person, that mom, is all consuming. It is the axis that my entire world spins on. It is part of everything I do and every conversation I have. There is no putting it down or away. There is no vacation from it. As a result it, in large measure it defines who I am. I am no longer the care free, I can get over everything that comes my way person I was. The person who used to pride herself on being able to "move on and move past" every difficulty that came my way. The one who never allowed things to completely weigh her down, and when they were heavy allotted a time by which they had to be shaken off. I can't do that any more. Every decision is monumental and every need is great. The constant of "what will be and what will he need next" is always on my  mind. The idea that this is forever, it is not strep throat or some other small childhood illness that will go away. The knowledge that there is no cure is a weight to carry around all the time.
     Don't get me wrong, it is not all bad. Just like you can't describe to a person who isn't a parent what it is like to experience the joys of parenting you also can't explain to the parent of a typical child how it feels when that child, who you were told may never walk, walks for the first time. Or the elation when he speaks his first sentence, or the happiness on his face when people understand what he is trying to say to them. The way it makes you feel to watch him have a profound impact on the lives of the people around him. The way people love him and the way he loves so wholly and unconditionally. It is truly amazing.
     Sometimes I miss my old self and sometimes I am grateful for who I have become. Often I feel like my life is spinning off of its axis but some days I truly feel it turning towards the sunshine.

Wednesday, July 20, 2011

The Memory Game

     Recently, while on a call with my boss, he commented to me that it seems like I have the potential for a great memory but am always so busy that my memory is actually only fair. He went on to say that while I am great at my job he can only imagine what a super star I could be if I didn't have a million other things on my mind at any given moment. Not really what you want to hear from your new boss (although, I do believe he meant it as a compliment, or maybe I just hope he did)! Ever since that conversation, I have been thinking about what my brain can hold and what is reasonably fair to expect of it.
     Here's the thing, I am constantly on the go. I am always rushing to be someplace and to get something done. There is nothing worse to me than finishing one errand with 10 minutes to spare until the next thing on my list, because I hate wasted time. I will inevitably try to cram something into that 10 minutes and then frantically be rushing to the next stop.
     I am always balancing a million things at once. There's work, and 3 kids, endless therapy and doctors appointments, school and camp bags to pack, a bus to make, dinner to prepare and a million other things in between in any given day that I can't even remember right now. I am sure many of you know exactly what I am talking about.
    I am constantly telling my husband that I am a multi-tasker while he can only do one thing at a time (and sometimes just barely one). His response is always the same,"yes you can do many things but how many of them are you doing completely."
     The truth is I think that is a fair question. What's the right answer? To always be doing a million things but never actually being able to devote yourself entirely to each of them or to focus on one thing at a time and never get everything done?
     I am not really sure what the answer is but at least now you may understand better why I sometimes repeat the same stories to the same people and never seem to remember who I have already told what to. Why I call you but can't for the life of me remember why when you call me back, why my kids eat more processed food than they should and get forgotten at school and most of all why I always have a cup of coffee in my hand, it's my version of speed!

Wednesday, July 13, 2011

The Kindness Of Others?

     I originally sat down to write my Blog last night (Tuesday). I was going to start off by saying that I am sure by now most of you have seen the amazing video of our son and his incredible experience with Fedex. I was going to expound upon the kindness of strangers and talk about the countless people we encounter all the time, who show considerable kindness to him. I was going to list all the mailmen who let him deliver the mail with them, even though he can be quite disruptive and annoying; Who bring him official USPS hats and let him carry their mail bags. I was going to mention the school bus driver at his school, Mr. Tinsley, who lets him climb on the bus each and every morning and afternoon and touch the school bus patch on his jacket, who knows him by name and makes him smile everyday. I was going to go on and on about how amazing it was that each of the Fedex employees in that video came to work on a Sunday to make a little boys dream come true. I was going to tell everyone how lucky we have been to have met so many amazing people who have contributed to his happiness.
     But then I saw todays news and I thought to myself: here I have been thinking about how amazing so many people can be and look at the horrors that others can perpetrate. So instead of thinking about how wonderful people are, I have spent all day thinking of how terrible they can be.
     My mind can not help but see that little boys beautiful face. I can not stop thinking about those parents whose lives are irrevocably changed, who will never again get to hug or kiss their son, who from now on instead of seeing his smile have to imagine the horrors he lived through before he died. The pain that one horrible person can inflict somehow seems to obliterate the kindness of so many others.
     Today, instead of smiling at the UPS driver passing by, I made sure to talk to my children about stranger danger. We told them never to speak with them, no matter what they say or do never go any where with them, don't accept candy from them. Simply put, do not even look at them.
     As I sit tonight and think about it all, I truly want to believe that the incredible and amazing kindness that we have seen, that has been demonstrated to our son, is what is real. That the world is actually full of goodness and amazement. It is filled with everyday people who do extraordinary things. That the place where we are raising our children is a safe and happy place to be. I hope this is true, because I would very much like to be able to believe it myself.

In case you haven't seen the movie, here is the link (it will make you smile): http://www.youtube.com/watch?v=6_qJPo4YoG0

Wednesday, July 6, 2011

P.A.N.D.A.S- and not the cuddly bear

     I have a strict rule, one that I have lived by for about 5 years. I never Google it. What do I mean? (since obviously I use google all the time like every other person on the planet) I never look up medical things on Google. Over the years we have had many scares with our son. We have had all sorts of weird symptoms pop up and all sorts of bizarre medical occurrences. We have seen it all. We have been to many doctors, we have seen specialists that practice speacialties I didn't even know existed, we have reduced our pediatrician, who is entirely a man of science, to making the diagnosis of "it's Yonatan"often instead of an actual medical condition, since there seems to be no clear answer, but like I said, through all of it, I stick by my rule.  I never Google it. Well, until recently...
     A few months ago we were having dinner with friends and talking about our son. The husband was asking us all sorts of questions about him and we were telling him all about our son and what some of the challenges we face are. The next day I got an email from this friend saying that he thought he may have lit upon what was going on. He had googled all of the "symptoms" we had described and come across an illness called PANDAS. After that first email they kept on coming. Email after email with case studies and medical information describing PANDAS. So like the good mother I am, I forwarded it all to my pediatrician and asked him what he thought. After reading up on the info that my friend sent we both felt that he did not fit the pattern of kids with PANDAS. I called my friend back and told him that I thank him so much for his help but this isn't what Yonatan has. He responded by telling me that he would not rest until we went for the simple blood test to see if it might be this. About 2 days later my doorbell rang at 7:30 am and it was the same friend dropping off a book that he had ordered for me on Amazon. The book was written by a mother who had a son with PANDAS. Like he said, he would not rest. So, I read the book and even though I did not think the symptoms described there were exactly like what we were dealing with I said to the pediatrician "we have poked and prodded this child for every little thing, why would I stop at one more blood test" and so we did it.
     PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. In essence it is what can occur when a strep infection goes untreated. The strep antibodies continue to grow in the blood and can cause all sorts of problems. One problem that they can cause is OCD (obsessive Compulsive Disorder). While our son does not wash his hands repeatedly or tap his nose and feet he does have a severe problem with obsessions. Anyone who lives near us has seen the little boy who delivers the mail all over our neighborhood because he is obsessed with the USPS. He is famous at our local post office and all the mailmen know him. A year or two ago, if you had us over, you probably remember quite well the obsession with bottles that he had, and who can forget the doors, he could open and close those for hours. (PANDAS is an extremely controversial medical diagnosis for various reasons and is also not well known.)
    About a week after we went for the blood test the results came in and sure enough my sons strep levels were way elevated.  I researched and googled and spoke to the mother who wrote the book to learn more. She told me that while a typical PANDA is a child who is normal all his life and then one day develops the symptoms of PANDAS she does know of stories of children who were never normal, who never spoke, or acted like normal kids and then once treated for PANDAS were healed. The crazy thing is that the potential cure for PANDAS is long term high doses of anti biotics. Something so simple!    
     And so we began our journey. After the initial two weeks of anti biotics we could not believe our eyes. The same child who had been recorded as speaking about the mail truck at least 35 times in a 30 minute period at school went an entire day without talking about it. While out walking we were able to get him to wave to the mail trucks we passed instead of delivering the mail to each and every house. We were floored and thought to ourselves: is this even possible, for 6 years we have lived with this and now look, it can be cured by anti biotics! After the first two weeks though things seemed to settle. While there were many significant changes in our sons behavior it was no longer miraculous. He has definitely changed for the better while on the anti biotics but he is by no means cured. At this point I can't even say for sure that he has PANDAS (since while the blood levels are an indicator they are not a clear diagnosis) but still we are continuing to explore this avenue. We are trying some of the different treatments and still hoping that they can help him. With PANDAS, it's kind of "treat it and see is it gets better" and so we are.
    So whats the take away here? I probably would still hesitate to google things because who really wants to have to sit and imagine half of the awful things you can find online but I will definitely continue to share my stories with friends because you truthfully never know who is going to have the insight that may make a big difference. You just never know where the missing link may come from or the the thing that was there but you missed because you were knee deep in t and couldn't see what was all around you. You know what they say "It takes a village to raise a child" in our case it may actually take a city :)

* for more information on PANDAS visit http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdf

or just google it!

Thursday, June 30, 2011

Sleep: My long lost friend

     As most people know, the first thing everyone tells you when you are about to embark on parenthood is  "sleep now, because you won't sleep again for at least 18 years or so". While I am sure most of you reading this (which means probably about 5 ppl :) are parents and have experienced this loss of sleep, it seems that my husband and I are experiencing it on speed. You see, while a typical child may wake up once a week, or even crawl into your bed every night, at least they go back to sleep.  You have to be dealing with a pretty high fever or painful ear infection to really be kept up all night. Here's the thing about special needs children, or at least mine, he seems to have given up on sleep as we know it.
     Ask any of my friends and they will tell you that I am all about giving my kids drugs to aid with sleep. I am always the mother on the flight with enough benadryl for the entire plane and then some and have been known to dispense it liberally to anyone in need (try flying with me, its fun, everyone is happy). I keep both my local pharmacy and probably the makers of Benadryl in business.  Recently though, it seems that my always reliable pal benadryl has let me down. In the last few months, no matter how much I overdose him (just kidding, no need to child protective services), my son never seems to want to go to sleep. He can usually be found wandering the house until somewhere between 10 and 11 pm at which point he collapses wherever he may be at that moment; the living room floor, the play room couch, my bed or on the floor in front of the heater in his bedroom in 80 degree heat. If that were not exhausting enough he seems to think the day starts between 4 and 4:30 am at which point we begin to hear the telltale signs of him being awake; doors opening and closing, the ipad blaring, lights going on and off and eventually his footsteps bounding down the hallway near the bedrooms. Now you may be wondering how it is possible that his brother who shares a room with him doesn't wake up? No need to be concerned, he has already climbed into our bed hours before that can possibly happen. Like I said, sleep my long lost friend.
       I guess the good news is that I have always been "early to bed early to rise". The problem is that at the rate we are going I will need to go to bed at 7 pm! (Which by the way would probably be great for my diet.) You would think that my son must be suffering from his lack of sleep as well, but no he somehow always seems to find time for a cat nap during the day, the lucky guy!
     A friend of mine, who I used to work with always used be amazed by how many things I managed to get done in the morning before I arrived at work at 8:30 am. The supermarket, the dry cleaners, the gym and at least one carpool. Now she knows my secret. Not so hard when you are up at 4:30 am!
    And so, I am looking for an opportunity to catch up with my friend sleep. My in laws have agreed to babysit so that my husband and I can go away for a weekend. We are looking for somewhere local, so that I don't have to take a day off from work on the friday before, and economical. Any suggestions? All are welcome. I am looking forward to the reunion!

Wednesday, June 29, 2011

My First Blog

       In the past few months two separate things occurred that made me think it was time to start blogging. The first was back in February or March when I was going through a particularly interesting period in my life and a friend told me "he would definitely follow me on twitter" (Btw Phil, I expect you to be my first follower).  After that, in June, when I was in the ER with my oldest son for the second time that month, I told a friend of mine that I was exhausted and couldn't believe that I was back there.  She replied to me "think of it  this way, you will never have writers block when you write your book". A few nights later I expressed to my husband that maybe I should write a book and he suggested I start with a blog. So here I am.
     To be honest, I am not really sure what I plan to blog about but I can tell you this, I always have stories and often even I can't believe them. So one thing is sure, if you follow me you will likely be entertained.