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 :)

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?

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.

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?