Sunday, December 27, 2015

A Million Little Earthquakes

     Not long after we moved into our house we decided to decorate our living room. We spent a lot of time, effort and money on it. I remember the day our (very expensive) chairs were delivered. The delivery man unwrapped them from their protective wrapping and we stood and looked at them. We were so excited and we loved them. I sat down in one of them for the first time and was marveling at how comfortable it was when my son began to melt down. In the blink of an eye he bit into one of my brand new too expensive chairs and the next thing I knew I was looking at a tiny little hole in the arm of that beautiful chair that I had owned for less than 10 minutes. That story has kind of become a depressing metaphor for our lives. It was in that moment that the "its just not worth it" approach took shape.  
     Lately though, that approach has lost its luster. I have found myself feeling sad. It isn't something specific but more like a million little cracks that that have been building up to one giant earthquake. I have said in the past, that I sometimes find myself envious of the ease of other peoples lives. Jealous of the fact that people can just sail through life without a heavy weight holding them down. Without a tiny little puncture in their chair that is leaking air. I know of course that everyone has baggage and that life isn't really that simple for anyone, but from my vantage point is seems a heck of a lot easier for them than it does for me.
     I see it in everything. It's in the way they causally take their kids out to dinner for someones birthday to whatever restaurant they want, not just the pizza store because that is the only one they can safely manage.  It's in the way they decide at 10 am on Sunday morning to go to SeaWorld that same day, or to fly up to San Francisco for the weekend. It's in the decision to have another child and add to their brood, or to just hire a local teenage babysitter and go to the movies because any 13 year old can manage their kids. The way they can take all of their kids to the mall, by themselves, and not worry about whether or not they will actually make it out alive and with everyone they went in with still in tow. It's the ability to go to their nephews Bar Mitzva in NY for the weekend and not obsess for weeks in advance about whether or not it will actually be ok. It's the ease with which they decide to decorate their den and not spend four years living with a filthy couch and even filthier rug because they just know that it will be vomited on within seconds of owning it. Its the knowledge that when their shutters break they can call someone to come fix them instead of living with broken ones because they don't have to worry that it will just happen again in 5 minutes. It's the fact that while, if they broke their foot, it would totally suck but not actually be catastrophic and debilitating for their family.
    If I am honest, it is the feeling that when I look around it seems like everyone else is in control of their lives, that they are in the drivers seat, and I am simply not.  And so even though there is nothing major that has happened lately. No huge crazy story for me to tell, I find myself feeling crushed under the weight of it all. Crushed by the feeling of how difficult my life is and wishing I could go back to the Miriam who never actually said that out loud. Who pretended like life wasn't so hard so that she didnt' have to admit it, even to herself. Who didn't have to feel stagnant and sad by the limitations of her life.
     Someone recently commented to me about the fact that I hadn't written anything in a while and I responded that some things feel too personal to write about. They laughed and said "too personal for you?!?". Yes, it is true that I have shared many personal things here in this blog, but somehow this post feels a little more deeply personal which is why I have held it back for a while and mulled over it. But somehow today, as I anticipate the arrival of my brand new couch and the purchase of my new rug the time to share seemed right.

Sunday, September 6, 2015

Sorry Kid, There Really Is No Santa

     When my second son turned 4 I wrote a blog called "When The Nickel Drops". In it I told the story of the time my parents took him to get a bike for his birthday and how he asked about why his older brother wasn't getting one. I spoke about the comment he made about Yonatan not being able to get one because his hands are "squishy" and how I thought that was the moment when he got it, when the nickel dropped.
     This Saturday morning while in the boys room helping them get dressed for synagogue, my younger son turned to me, having just been drooled on by his brother, and said "Mom, you have to remember to tell him to close his mouth and swallow. I really don't like when he drools on me". I responded OK you are right and prepared to move on. We were obviously not on the same page. He then said to me "Isn't there a shot you can give him". I said "so that he won't drool?" and he said "no, so that he won't have special needs anymore". WOW.  I took a deep breath, tried to hide my tears and said "no, there isn't". At which point he turned to me and said "so he is going to be like this forever?". I told him yes, that if he didn't have special needs he wouldn't be the Yonatan that we know and love to which he responded "nope, we would". He then asked me "Do you think Yonatan knows he has special needs?". I told him I did, and that I was happy to answer all of his questions but that I would prefer not to  talk about it in front of Yonatan, since I felt that Yonatan was absorbing the conversation. At which point Raphi said "nope, I am good, no more questions" and moved right on. I tried (I think pretty successfully) to hide my tears and move on with him.
     Where to start with this one! First off, clearly the squishy hands moment of  4 years ago, was not quite what I thought it was! The nickel had obviously not dropped. Raphi is a very bright kid. I really thought he already understood and that he had gotten it ages ago. He is so amazing with his brother, he is so patient and kind and protective. It truly did not occur to me that until now he didn't really understand. That he still had questions or that he thought that we could take Yo to the Doctor and "fix him". (I do kind of wonder why if he thought that was a possibility he didn't think we would have already gone that route, a question for when he is older I think.)
     In that moment, I was also very sad for Raphi. I haven't had the chance to revisit the conversation with him yet, and I still haven't decided if I will or should, but I do feel a little bit like yesterday was the day I had to tell him that there really is no Santa Claus or Tooth Fairy. That the things we want to believe can happen sometimes, just can't. I wonder how his newfound understanding will shape him and his interactions with his brother. If it will change him or them in anyway. How that brief conversation will impact him in his life. The moment the nickel really dropped. The moment he truly got it. Or if maybe in a year, I will find myself having a different version of this conversation and if in that moment  I will realize that just like I can't completely comprehend it at 36, he certainly can't get it at 9, 10 or even 25.
     Either way, I do believe that being Yonatans brother is shaping Raphi into an amazing kid and ultimately an incredible adult. I used to worry that the impact would be negative, that the challenges that having a sibling with special needs create would outweigh the benefits. But I know better now, because I have seen first hand the depths of kindness that exist in my younger children towards their brother.  I am actually (much to my surprise) pretty confident, that with each passing year and deeper understanding that kindness and goodness will grow deeper.

Friday, July 17, 2015

An Open Letter To Yonatans Camp Counselors

    By now many of you have probably seen the myriad of photos and videos that I have been posting of Yonatan at camp. You are having the opportunity to share in our joy and to hopefully view the amazing world of HASC through his eyes. Sunday is Visiting Day and we are so excited to spend the day at camp and experience it first hand with him. It is the day we wait for all summer and honestly probably most of the year. Pics to follow....

     I was asked to write a letter for the HASC staff newsletter to give them a glimpse of what HASC means to us as parents and I wanted to share it here. This letter truly sums up how we feel as Yonatans parents every summer.

I am sure by now you have all met Yonatan, or YoYo as he is known to most everyone. You have probably even fallen in love with him already because, man does he know how to wrap almost any human being around his finger. He just gets you with that smile of his, and you just melt. And somehow, five minutes later, when you are covered completely in M&M drool you are wondering to yourself, how did I fall for that again?. Right, you know exactly what I am talking about. I know you do.

As you can imagine, being YoYo's parent isn't all sunshine, smiles and M&M drool. It is a big challenge every single day. As my husband always says, our biggest challenge is also our greatest bracha. Truer words have never been spoken. While Yo can be a huge ball of love he is also a very frustrated child. Much of his life consists of hearing the word no and being restricted from the things he loves to do, you know, like delivering the mail and gardening, because sometimes there just isn't time to deliver mail, to the entire city of Los Angeles, exactly when he wants to.

As his parent, we struggle considerably with finding and delivering on the things that really truly make him happy. We try, we give it our all, but it really just isn't easy. That is, it wasn't, until we found HASC. I tell everyone that the best part of HASC is that we really feel each summer like we are delivering him to the happiest part of his year. That sending him to HASC is the best thing that we have ever done for him as his parents. We truly feel that way with every fiber of our beings. The reason that is true is simple, it is because we are sending him to people like you. To counselors and staff who love him and just want to make him happy. We have tremendous hakarat hatov to you each and every day. Any time we meet anyone who was a counselor at HASC, my husband says, their stock rises immediately. More than that, we stand in awe of you because we would never have been HASC counselors, and we are honest enough to say that. We do this job every day because G-d gave it to us but each and everyone of you has chosen to and that sets you apart. You should go forward every day knowing that you are changing the lives of kids like Yo and their families.

Friday, June 12, 2015

The Absolute Wrong Way To Help

     I am seething, I am furious. I know that writing when I am this angry is probably not the best idea. I recognize that it is hard to be objective when you are this angry, but I simply must write.
     To start, I want to say, that I recognize that there are people out there who genuinely want to help others and really don't know how. As a result, they sometimes do the wrong thing but with the right intentions. Also, as a Mom, I know that making sure that children are safe is a natural instinct and is mission critical. So please recognize that thru this rant, I am not unclear about that. I also know, that often (and unfortunately) many people are self absorbed and self righteous and don't usually stop to think about what impact their actions have on others. That people who truly want to help stop and ask how they can do so and don't sit in judgement of those around them.
     Last Saturday afternoon, on the way home from synagogue Yonatan had a meltdown tantrum. He became unmanageable while we were walking in the middle of our neighborhood and in order to get the situation and him under control my husband had to pick him up, throw him over his shoulder in a manner in which he could protect himself from being scratched and bitten and carry him home. Everything about this instance (and this was not the first time and will not be the last) is heartbreaking and horrible for us as parents. First off, no one wants to have to restrain their child in this was or in any way. Also, it is devastating to feel that your child might want to hurt you, even when you know that he can't help himself and that in a few hours, when he is calm he will feel devastating remorse and apologize endlessly for hours. It is embarrassing when this happens in public and it is extremely physically difficult to throw a 70 lb screaming, yelling, struggling child over your shoulder (especially when you are just a short jewish man). Simply put, it is awful.
     Now close your eyes and compound that terrible feeling with the feeling you have when you look back and see that the people walking behind are very clearly judging you unfavorably for your actions. When you can see the look of disgust on their faces. I want to be clear on this point. The look on their faces was not of concern but rather of judgement . They didn't ask if they could help. They didn't turn to my in laws who were walking with us and say "is everything ok? are you concerned by what is happening?". Nope. They just gave us dirty looks. At that same moment that I noticed them  Yonatan began to vomit. Understand, this is not an uncommon occurrence. Yonatan vomits when you look at him funny. He vomits when he sneezes and he always vomits when he is screaming and carrying on. So obviously, considering that, I didn't even blink or bat an eye when he did. It was at this moment, that in a nasty tone, one of the onlookers turned to me and said "don't you think you should finally put him down. He is vomiting!" I, being the friendly person I am, turned back and said (in an equally nasty tone) "we are just fine, I don't think we need your help and advice" and continued helping my husband. When I turned back, I noticed that my mother in law had stopped to educate these onlookers about our situation. I immediately turned to her and said "do not speak to them, we do not need to justify ourselves to them". The accuser at that point said "I was just concerned because your son was vomiting blood!" The fact that he can't tell the difference between cholent vomit and bloody vomit was not a point in his favor.
     After that encounter, my in laws tried to point out to me that people should in cases where they suspect abuse and in cases where they have concern speak up and that it is our responsibility to teach them. I explained to them that 1) no one abuses their kid in broad daylight on the busiest corner in their neighborhood at a time when everyone is walking home from shul and that 2) if they were in fact concerned then what they should have done is stopped and said "can we help you" or "is everything ok"? and not have been obnoxious and judgmental.  Because in fact, even that 1 minute dialogue with them hindered our ability to make sure our son was safe in the moment. Any distraction during one of these incidents can be incredibly detrimental. And it is time we can not afford to waste on other people. All of our attention in these instances must be on our son (not to mention our other 3 children).
     Fast forward to Thursday morning. My husband gets a call from the director of an organization that my son is involved in asking if he can come over and chat. He of course says yes and they sit down at our dining room table. He informs my husband that he received a call from this person saying that they believe that we are a family that sends their son there and that she was going to call child protective services for what she witnessed but having remembered that our son goes there decided to contact him first. She specifically noted that if this is what we do to him in public she can only imagine what we do to him in private. Obviously, he explained to her that there is no way that we would ever abuse our child and also how difficult he can be.
     Before I continue, I want to make one thing very clear. I feel very strongly that the only appropriate thing that was done here is that they called this organization. I think that in a case like this, where there is an organization with a leader who you know can be trusted and cares for children with special needs the absolute best thing to do for that child is bring it to their attention. I also feel strongly that no matter what you think (as the director) of any family you should always investigate every single claim because every child could be at risk and every child deserves every single advocate. Especially children who may not have their own voice.
     However, and this is a very big however, you need to understand the implications of your actions in a situation like this. Child protective services removes children first and investigates second. Can you imagine the impact of being removed from your home if you are a special needs child. Can you imagine the impact on the other children who will forever fear that if their older brother misbehaves they will be removed from their home? Can you understand for one second the depression that my husband and I experience from an encounter like this and generally from the difficulties of these situations.
     So to those of you out there who truly want to help but don't know how (or think they know how), if you witness something like this get off your high horse. Stop and say "is everything ok?" offer to help. Show kindness and compassion. Evaluate the situation in its entirety or recognize that in the moment you can't understand it fully. Don't rush to judge. Think through your actions. Look around and ask around. These people obviously knew who we were. They could have easily investigated us before making accusations. It is by but the good graces of G-d that they called this organization first. Even if the intention of these people was good my heart stops as I imagine the damage they could have done had they acted on their opinions and not on fact first.

Tuesday, March 10, 2015

Time Flies....

     Today is Yonatans 10th birthday. What a great day we had. From start to finish the day was truly special. We woke him up singing, we had a big family send off when he got on the school bus, I went to school with cupcakes, we went out for pizza and for ice cream. It was truly a great day. He had a blast. It was clear that he felt special, which is not an easy accomplishment when it comes to him. I am laying in bed (after all we partied all day) feeling very accomplished.
    Throughout the day I kept thinking to myself, wow, he's 10. Hard to believe that I have been at this for 10 years. Not that I have been a parent for 10 years. Thats not hard to believe. But that I have been HIS parent for 10 years. That I have been the mom of a special needs child for that long.
    It has been a long road (as chronicled in this blog). It is rewarding and challenging. It is exhausting and hard. Some days I am flying high and some days I am in the depths of darkness. I feel older than my 35 years old. I feel pride and excitement with each of his accomplishments and my love for him has no bounds.
     And I feel scared. I am scared because I feel with certainty that the next 10 will be even more challenging. I fear that whatever I have encountered and have been through thus far is nothing compared to the next stage. I am frightened by the idea of puberty and adolescence. Times that are a minefield in any childs life seem like a potential IED in our life.
     At age 10 he is already running away. What happens when he does it when he is older. When he weighs more than me and is taller than me. I already struggle with his strength now, what happens when I no longer even have a chance of overpowering him. When his impulsivity is an even bigger challenge for him and us? How do I keep him safe? I already told my husband that I feel like we need an electric fence that zaps him if he tries to leave our house (I'm not sure if that would get me arrested for child abuse but the idea does have some merit). For the first time last week I heard a voice in my head saying "what if we really can't figure out how to keep him in, what if he can't continue to live with us". It was a truly frightening moment.
     Today, in most peoples eyes he is a pretty cute kid. Yep he isn't always easy to be around but by and large he is a yummy little boy. What happens when he is no longer a cute kid but  a really difficult teenager or a strange adult? How does the world treat him then?
     So while I was grinning ear to ear today thinking about what a fabulous birthday he had, patting myself on the back for making it this far I was also contemplating what the future holds. Will I look back after the next 10 and think, WOW, I did it? Will it be better and easier than the first 10. Will all my fears and worrying be for naught? I truly don't know. Only time will tell. One thing is for certain though, I really need to learn to drink a little more. Life will certainly be rosier with a few cocktails!

Happy Birthday to my very special boy!

Tuesday, February 24, 2015

Now You See Him, Now You Don't

     I often say about my son that the most difficult part of this whole "situation" is how smart he is. That at every turn he outsmarts us and that whatever measures we put in place to protect him and keep ahead of him will ultimately fail because he is just. so. damn. smart. Truer words were never spoken.
      I have written more than once about my son running away. It has happened to us more times than it should. To be honest, it shouldn't even have happened once. As you know (if you read my blog) we have put many environmental controls in place to stop him. We have a double sided lock on our front door that requires a combination to get in and out. We built a new bigger and better fence and we put a GPS on his person. We stopped allowing him to play in front of the house even though he loved to and we totally secured the back. We don't really like the fact that we have to limit his world all the time but it is for his own safety and so we do. It does make us sad because he loves to be outside and so we are always trying to find ways to keep him safe and give him access to the things that he loves. It is not easy to find solutions but we try. We have hired someone who comes on Saturdays and spends the entire afternoon walking around the neighborhood with him. We never leave him unattended outside, we are constantly on watch. It is difficult to manage life this way and so wherever we can we try to find ways to give him freedom and still maintain our sanity. Easier said than done.
     About two weeks ago my husband figured out a way to tie the front gate closed in a a manner that my son could not figure out how to open. It was a great solution because this way my son could be outside and we didn't have to worry. It even worked for a bit. Until today when as usual my son outsmarted us. 
     My car was being washed in front of my house. I told the man washing my car that I was tying up the gate and that he shouldn't open it when he was done but that he should text me. My son was hanging inside the locked gate watching him and watching for the mailman and believing him safe I went back to work. About 20 minutes later my phone rang, it was my new babysitter telling me that Yonatan had run away. I ran outside and started down the block where I found the car wash guy running and searching for him. I looked up and saw him about a block and a half down and took off after him. I bumped into a neighbor of mine who saw me and told me she had been driving around following him because she didn't have my number. She was pretty sure this outing was probably not parent approved. Um,Yeah, Probably not! I hopped in her car and caught up with him about 4 blocks from our house where another neighbors babysitter was chasing after him trying to keep him safe as he ran through the middle of the street.
     How did Houdini do it you wonder? Well I did too, until the car wash guy explained to me that he hopped over the fence. He was there one minute gone the next. For a minute I thought, wow, totally didn't think he had the gross motor skills for that (secret proud parent moment) and then thought, oh shoot, do I now need to build a new fence. Not going to do that. So back to locking him in the house I guess.
     I hate that we always have to take things away from him. That the response to this is always to limit his life more than it already is, but what choice do I have. As his mother isn't my most important job to keep him safe and alive?
     You know what was most interesting to me about todays escape? I was totally calm. It was actually weird to me. Usually I am flustered, out of breath, sweating profusely and furious. This time, I of course took off running but I wasn't gripped by the usual fear that over takes me. I am not fully sure that I understand why. The same issues as always existed. He could have been hit by a car or kidnapped. He could have fallen and gotten hurt. Somehow, I wasn't nervous about any of that. Maybe it was because of the really nice car wash man who was out searching for him, or the fact that I know that everyone in this neighborhood knows him and looks out for him. Maybe it is because I know he won't get lost because he has an incredible sense of direction. Or maybe it is simply that I have been in this movie so many times and I feel confident that I already know the ending. Or maybe I am finally losing my mind. 

Wednesday, February 4, 2015

Keep Your Second Hand Smoke To Yourself

     I used to say about people who smoked in public places that just because they were choosing to kill themselves didn't mean that they should be able to take others down with them. Not only are they blowing smoke my way or my kids way but they are blowing the worst part of the smoke at us. You can only imagine how happy I was when states began to make smoking in public places illegal. It's pretty much almost never a problem anymore and every once in a while when I encounter someone smoking near me and my family at the Coffee Bean or someplace else I simply get up and tell them that it is illegal to smoke within 10 ft of the establishment and off they go. Problem eradicated.
     There has been a lot said and written about the new measles outbreak. A lot of attention has been given to people who refuse to vaccinate their kids. There has been much talk about the fact that they have brought back illnesses that were completely wiped out and that they are endangering others and truthfully mostly their own kids.
     I want to add my two cents. I want to explain to those parents what they are doing to families like mine. If you read my blog you know that we often find ourselves in medical crises. Thankfully, to date, we have managed to come out unscathed. We may be a little battle weary but we are OK. Every time we end up in the hospital with Yonatan, I say that even though it is undiagnosed, I KNOW that my son has some type of immunodeficiency. I may not have a medical degree but mothers intuition and experience is all I need. Yonatan is that kid who gets everything. He is the kid who had HUS at an a very early age when kids usually don't develop it. He is the one who had the chicken pox even though he was vaccinated. When he had walking pneumonia, it turned into a full blown hospitalization because he wasn't breathing right and had a pulse oxygen of 86 when we got the hospital. He is the kid who had the crazy reaction to steroids that affected his liver function and landed us in the hospital, yet again. The kid that had the roto virus 6 times when there are only 5 strains of it. The boy who was hospitalized for the hiccups because we needed to rule out a brain tumor. The list goes on.
     My pediatrician has tried to reassure me by telling me that the chances of a child who is vaccinated getting the measles would be like "being struck by lightening" that 99.9% of kids who are vaccinated will not become infected.  Does it seem like we would be that lucky? I mean, when has Yonatan ever not been in the .01%?
     The measles for us would be deadly, because not only do I have a child with special needs with a compromised immune system I also have a newborn baby. A poor little adorable defenseless newborn baby who is too young to be vaccinated. So if my son who catches everything gets measles, that is who he is bringing it home to. That is who the parents who don't vaccinate their kids are putting at risk. Not one of my children but two. Can you tell me what my kids ever did to you or yours? Quite the opposite, my children are protecting your children because they have been vaccinated. You in your selfishness are relying on my children to offer yours their "herd immunity". So let me get this straight, you get to put my children at risk while also benefitting from my good sense? Really? Explain that to me, because I truly don't get it.
     Besides the fact that the study linking autism and other developmental issues to vaccinations has been proven false over and over again, consider this; I actually HAVE a child with special needs and I vaccinate my kids. Why don't you, what on earth can you possibly be thinking. More than that, did you even ask your kids their opinion on the matter? Did you allow them to be a part of the decision? I would guess not. I would guess that you decided without their input that they were better off without life saving vaccines. Are you sure they would agree with you? Do you think they want to be the cause of another child becoming ill or even G-d forbid worse? Do you think that they want to be singled out as the kids that no one is allowed to play with? Did your parents do that to you? Because I would venture to guess that all of you parents out there who choose not to vaccinate your kids were vaccinated as children. Did it cause you  much harm? You seem to be walking around just fine.
     So here is my request to you, if even after reading everything that has been written about the harm you are doing and assuming the law is not changed, you still refuse to vaccinate your kids could you just please keep your kids home until this is over. Give the rest of us some peace of mind. Hell have a chicken pox party with the other crazy families like yours like we used to have as kids. I'll even supply the oatmeal for the baths, just please stay away from me and mine.