tag:blogger.com,1999:blog-86831889492202929992024-02-19T14:31:49.941-08:00Mark Miriam's WordI am a full time mom of 4 kids with a full time job. My oldest son has special needs and it seems I always have a story to tell.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.comBlogger61125tag:blogger.com,1999:blog-8683188949220292999.post-56569102188562280122015-12-27T20:28:00.001-08:002015-12-28T09:10:42.000-08:00A 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. <br />
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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.<br />
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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.<br />
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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.<br />
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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.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com2tag:blogger.com,1999:blog-8683188949220292999.post-26903523484906017612015-09-06T20:59:00.003-07:002015-09-06T20:59:20.575-07:00Sorry Kid, There Really Is No Santa When my second son turned 4 I wrote a blog called "<a href="http://markmiriamsword.blogspot.com/2013/02/when-nickel-drops.html">When The Nickel Drops</a>". 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.<br />
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.<br />
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.)<br />
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.<br />
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.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-82038563716566294802015-07-17T16:37:00.002-07:002015-07-17T16:37:34.959-07:00An 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....<br />
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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.<br />
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<i style="color: #222222; font-family: arial, sans-serif;">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.</i><div style="color: #222222; font-family: arial, sans-serif;">
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<i>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.</i></div>
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<i style="color: #222222; font-family: arial, sans-serif;">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 </i><span style="color: #222222; font-family: arial, sans-serif;"><i>forward</i></span><i style="color: #222222; font-family: arial, sans-serif;"> every day knowing that you are changing the lives of kids like Yo and their families.</i></div>
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Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-72958252455169102882015-06-12T19:50:00.002-07:002015-06-12T19:50:14.773-07:00The 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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).<br />
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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.<br />
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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.<br />
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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.<br />
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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.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com2tag:blogger.com,1999:blog-8683188949220292999.post-88193728089199718522015-03-10T22:28:00.001-07:002015-03-10T22:28:39.684-07:00Time 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.<br />
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.<br />
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.<br />
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.<br />
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.<br />
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?<br />
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!<br />
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Happy Birthday to my very special boy!<br />
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Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-40849544310423678512015-02-24T20:08:00.003-08:002015-02-24T20:18:39.110-08:00Now 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.<br />
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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.</div>
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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. </div>
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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.</div>
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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.</div>
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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?</div>
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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. </div>
Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-20015707639201841712015-02-04T22:45:00.001-08:002015-02-04T22:46:09.658-08:00Keep 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.<br />
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.<br />
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 <a href="http://en.wikipedia.org/wiki/Hemolytic-uremic_syndrome">HUS</a> 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.<br />
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%?<br />
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.<br />
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.<br />
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.<br />
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Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-69256164240509820662015-01-27T20:46:00.002-08:002015-01-27T22:02:03.350-08:00The Day I Retired My Cape I have had a running joke with a good friend of mine for years about being "supermoms". It started ages ago when she called me one day and asked how she was going to accomplish all the things she had to do in a short period of time. My response: "I'll tell you how, by going into your phone booth and putting on your cape". From then on whenever one of us found ourselves in one of those crazy working mom moments we would text each other things like "my cape is on tight" or "I have a snag in my cape" or "I can feel my cape billowing behind me" and so on. I used to find it hilarious! I am SO over that joke.<br />
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My babysitter of 10 years told me on New Years eve that she was quitting. She had been with me since I had one little newborn baby and a two bedroom apartment. I now have four kids, one with special needs, and a four bedroom house. I get it. She was tired and looking for something different and easier. I totally understood. After a moment of panic, I did what I always do and put on my cape. She agreed to stay with me until I found someone or to give me two weeks notice if she found something else first and I began interviewing new people. I could not believe my luck when I found someone who fit the bill on my second interview. Young, energetic, undaunted by the job, experience with kids with special needs and by her own admission "OCD about cleaning". What more could I ask for. We decided she would start on Monday of this week and I even helped my old babysitter find a new job.</div>
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Yesterday was her first day and it went off with out a hitch! Or so I thought. It seemed like everything went swimmingly well. That is until today when she didn't show up. No call, no text, nothing. Just a no show. When I finally reached her 2 hours after she was supposed to have been in my house she informed me that the commute was too long and she would not be returning, umm thanks, I kind of figured it out by then. Really appreciate your thoughtfulness!</div>
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And so today I donned my cloak yet again. I cleaned my house; made all the beds, did all of the dishes, took care of my baby, made dinner, took my son to his playdate (due to the never ending winter break from Maimonides) worked all day, collected my son from the bus, dealt with his massive meltdown because of the disruption to his routine, managed a carpool, interviewed four potential new babysitters and called everyone I know to tell them I am looking again. I even managed a swim (granted that was at 7 am before this entire debacle began). You are probably tired just reading this paragraph so you can only imagine how I feel right now and my night is not even close to over. </div>
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And so, after today, I have decided to retire my cape. I figure that if I stop appearing to be so damn capable I might not actually have to be. Maybe then I will catch a break, because I could sure use one. Or at least maybe I'll be a little less tired. Either of those sound grand right about now. </div>
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*funnily enough when I thought of writing this post in my mind it seemed like it might be funny. Pretty sure in reality, not so much.</div>
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**if you know an amazing babysitter please let me know!</div>
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Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-17921660386009545662014-11-23T16:14:00.000-08:002014-11-23T16:18:58.526-08:00Never A Dull Moment When I was younger my brother used to call me "move on move past Miriam". He gave me the nickname because I could literally get over anything and everything quickly. I would choose a moment when I was done being upset or annoyed about something and just decide in that instant that I was over it. I was a master at it. It is the kind of skill that should have carried into adulthood and really served me well in life. So why didn't it?<br />
We were supposed to be on a plane to Israel right now. My niece is getting married and the whole family, my husband, myself and my 4 children including my brand spanking new baby were going to Israel for the week of Thanksgiving. I decided that we would all go this summer even before the baby was born. I checked with my pediatrician and asked if he would let me take a newborn without shots on a plane and he said yes barring any issues. I was eager to book the tickets during the summer because the prices were great during the war. Nothing, literally nothing could deter me. Everyone told me I was insane to take an entire family, especially a newborn for just a week, but I was on a mission.<br />
Last week my oldest son was hospitalized twice. Once for low blood pressure for which we were discharged after about 24 hours and then not 24 hours later we were back in the hospital because he had hiccups for 3 days straight and non stop vomiting. That combined with the low blood pressure and the fact that he was acting strange got us a one way ticket to the MRI machine. Apparently these are potential signs of a brain tumor. When all of this was going on, I did not even break a sweat. After all we have been through enough of these medical emergencies to know that at the end he is always OK. When the doctor mentioned the words brain tumor, my husband and I did not even flinch. We were that sure that he would be just fine. Yes, it is exhausting every time we land in the hospital and sure it is really no fun, but thank G-d, we have never had to actually face anything serious. In the end (bli ayin hara) it always turns out OK and we chalk it up to "its Yonatan". After each of these episodes I always say "one day they will call it the Yonatan syndrome and diagnose other kids with it". Each and every time I move on and move past.<br />
So why then, when I discovered last night at 10 pm that his passport was expired and realized that there was no way we would be on a plane on Sunday at 1:30 pm did I find myself in a tail spin? Crying and being so upset that I thought I was literally going to vomit? Why is it, that when things as huge as the need to rule out a brain tumor happen I don't even flinch but an expired passport feels like it will be the end of me, the straw that breaks the camels back? That same brother said to me today "come on Mir, move on move past. You of all people should know that this is really not worth getting worked up over. You have much bigger fish to fry". I know he is right but as I told him, there are so few things in my life that I have control over. I have no choice but to get over them because they are the cards I have been dealt so when the things that are in my control go to hell they hit me extra hard because those are the situations that should be in my power to control and that makes them much harder to get over.<br />
In the last month I have had a baby, I have taken my son to the hospital twice, I have seen countless new doctors with him, I managed to get my newborn daughter an expedited passport (and yes, I even checked all my other kids passports before taking care of hers to make sure they weren't expired and somehow missed the date on his) and the question I kept asking everyone is "can I still go to Israel" and "don't forget that we are going to Israel next week. Can we travel with those hiccups", "is the blood pressure an issue, can we still leave on the 23rd?". I think that the idea that after all of that an expired passport was going to be what got in my way, overwhelmed me. I know this happens to everyone. Who does't have some passport nightmare story? The difference is that when it happens to them they haven't dealt with all of the crap that I have before even getting to their passport fiasco. They haven't had the kind of month I have. So they can deal with it, cry a bit and move on. For me it is the build up to the stupid things that make them so hard to swallow and so difficult to move past.<br />
The good news is that this story has a happy ending. No we did not get on a plane today but we will get on on one on Tuesday. All of us! and we will be at the wedding, with bells on. We may be a little travel and life weary and the bells may not ring as loudly, but we will be there.<br />
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<br />Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com1tag:blogger.com,1999:blog-8683188949220292999.post-35858822243681258382014-09-04T20:58:00.002-07:002014-09-05T09:55:19.697-07:00Between A Rock and A Hard Place I haven't blogged in a while. First I was at the beginning of my pregnancy and to sick too pick my head up to do anything. Then I got very busy with work and by the end of the day was so tired that all I could manage was either sleep or mindless TV for a few minutes before sleep. It is unfortunate because I missed many opportunities to blog about good things like my sons amazing summer at camp and our amazing visiting day experience. I didn't have a chance to talk about how great his homecoming was, or how much we all missed him. Or the ways in which I used the summer to relax. I wasn't able to share my feelings and thoughts on what was happening in Israel this summer or about the two trips my husband and I managed to take. I guess when everything is quiet we forget to take a minute to sit down and appreciate it, much less write about it. So here I am, months since my last blog post and I am back with a depressing story.<br />
My son has been back home since August 18th. We missed him madly and of course are very happy to have him home but what I realize again, with his homecoming, is that there is no re-entry, there is no easing back in. He is home and he is back to being himself immediately. The main difference honestly is how much he grew over the summer. He must be at least 3 or 4 inches taller than when he left. He is a giant. Before he left to camp I was already entering a new stage, one where I had begun to realize that at age 9 he is already stronger than me. That I can basically no longer physically over power him when necessary. So even though we have put many safety measures in place such as the double sided lock on the front door, the new gate to make sure he can't escape and the GPS device that he wears daily, we still have episodes. After all the plan is not to keep him locked up for life.<br />
And so, over the last 2 days I have had to tackle him to the ground three times. Once yesterday and twice today. At this stage though, this is a bit tricky because I am 8 months pregnant. So 1) there is a danger in it for me that was not there previously 2) it is physically more difficult and 3) I weigh considerably more than I used to and am unable to lay across him in a way that distributes my weight evenly across his body like I used to do (insert fat pregnancy joke here). But what am I to do when faced with a risk to his safety, allow him to run and potentially end up in the middle of the street or in some other dangerous situation. Obviously, that isn't a choice. Do I expect others (who aren't his mother) to have to manhandle him in that way, that seems pretty unfair to them. Or do I get down on the ground, lay across him while trying to protect my belly and call my husband to come home from work to help me? It seems there is only one answer, certainly in that moment.<br />
But there are bigger questions here. How do I choose in that situation who to protect? Do I protect my son who has no impulse control and can be a harm to himself. Do I choose to protect my stomach and unborn child? Is there a happy medium? Is it irresponsible of me, knowing that my son is stronger than me, to even be pregnant? My son would never hurt me on purpose, but when he loses control he can't stop himself, he is totally lost in his obsession at that moment. And what happens now that he is truly stronger than me? What does this next stage look like? How do I manage it? What happens in a few years when he is stronger than my husband too (those of you who know my husband know he is not a bog guy)? Who do I call then?<br />
Don't misunderstand, my son is not violent and this isn't an always problem, but we do have these moments and incidents. We also don't know what will be as he gets older, maybe it will get easier. Maybe he will be less impulsive. Maybe he will be calmer and easier to manage, or maybe not. I don't know how this story develops, all I know is that I wish I had blogged about something more sunny during the calm. It would be nice to be able to re read those blogs during the storm.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-13873750198796562432014-08-12T19:03:00.000-07:002014-08-12T19:03:06.376-07:00Walk For Friendship It has been a long while since I have posted and I can't even take credit for todays post. My only excuse is that pregnancy has made me too tired to sit down and write although I am sure I will get back to it soon.<br />
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Every year my husband and I raise money for <a href="http://www.fcla.org/">The Friendship Circle</a>, an organization that is very close to our hearts. Each year my husband writes a heartfelt letter about what it means to be the parent of a special needs child and how The Friendship Circle has helped us and so I thought I would use my blog as a way to share his beautiful words this year. It is a little long but as usual his letter truly encapsulates our feelings. He is a wonderful writer so enjoy:<br />
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<span class="yiv6512120258" id="yui_3_16_0_1_1407895139131_2337"><a class="yiv6512120258" href="http://www.walk4friendshipla.com/YoYoTheMailManMark" id="yui_3_16_0_1_1407895139131_2336" rel="nofollow" style="color: #196ad4; margin: 0px; outline: none; padding: 0px;" target="_blank">http://www.walk4friendshipla.com/YoYoTheMailManMark</a></span></div>
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<span class="yiv6512120258" id="yui_3_16_0_1_1407895139131_2339">As you probably already know ( if you dont that just means you probably sent me an email at some point this year sorry:-) if you are receiving this email every year I try to share with you a glimpse of the life of families blessed with the gift of raising a child with special needs. Every year brings with it new experiences as we continue our journey through the valleys and peaks of raising our special children. <span class="yiv6512120258"> </span>This year I would like to focus your attention on the parents of these children and their journey. I guess on our journey. And as always I apologize in advance for the length. I have learned that special needs requires a bit of patience.</span></div>
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<span class="yiv6512120258" id="yui_3_16_0_1_1407895139131_2348">I would like to share with you a personal experience but first a little bit of context. My family has been incredibly blessed by our communities warmth to my son Yonatan. Our experience has generally been positive and I assumed that this was the case for other families of children with special needs . However after a particularly negative experience I began to talk to other families and sadly learned that my generally positive experiences seemed to be almost exclusively mine.<span class="yiv6512120258"> </span>I decided I would try to change that and so I met with different community leaders in an effort to impress upon them the plight of these families. </span></div>
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<span class="yiv6512120258">So what is the plight of a family with a child with special needs ? I will try to explain. You will not be able to really understand but hopefully you will get a glimpse. </span></div>
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<span class="yiv6512120258">It begins with the four words that are constantly on our mind - <b class="yiv6512120258">Is it worth it ?</b> That sounds terrible doesnt it ? Well its not what you think. We dont ask whether our children are worth it. The answer to that is a resounding <b class="yiv6512120258">ABSOLUTELY! </b>Just as you likely will never understand the depth of the challenge you equally will never understand the depth of the reward. They are most certainly worth it. The question actually is far more practical. It goes something like this -</span></div>
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<b class="yiv6512120258">It is worth it</b><span class="yiv6512120258"> to make him wear his pants the right way ? ( I guess he doesnt know that Kris Kross hasnt been cool for a long time but its still better than no pants at all!<span class="yiv6512120258"> </span>)</span></div>
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<b class="yiv6512120258">Is it worth it</b><span class="yiv6512120258"> to have or go to a birthday party ?</span></div>
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<b class="yiv6512120258">Is it worth it</b><span class="yiv6512120258"> to go to the grocery store ? ( By now even our fridge is hungry but if I open the door and a mail truck happens to be in front I will be on a 4 hour excursion chasing Ming - he's the mail man)</span></div>
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<b class="yiv6512120258">Is it worth it</b><span class="yiv6512120258"> to have a friend over ?</span></div>
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<b class="yiv6512120258">It is worth it</b><span class="yiv6512120258"> to go to Baskin Robbins? (<span class="yiv6512120258"> </span>If I dont come with a janitorial staff I will either have to wash the floors or I will be asked not to come back)</span></div>
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<b class="yiv6512120258">Is it worth it </b><span class="yiv6512120258">to allow his siblings to have play dates at home ?</span></div>
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<b class="yiv6512120258">Is it worth it</b><span class="yiv6512120258"> to make him change his shirt ( because he has been wearing the same one for the last three days with so many stains of bodily fluid and half eaten food you could probably live off it in the wilderness for 6 months) ?</span></div>
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<b class="yiv6512120258">Is it worth it</b><span class="yiv6512120258"> to go to synagogue ?</span></div>
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<b class="yiv6512120258">Is it worth it</b><span class="yiv6512120258"> to accept an invitation ( and if I am brave enough to accept do I tell them about my son and his strong tendency to rummage through the fridge and pantry and take what he pleases and thats after he has gone through all the drawers in the house to find their mail so that he can do the same ) ? </span></div>
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<span class="yiv6512120258">The list goes on and on. The minutiae of every part of our daily routine begins with - Is it worth it ?</span></div>
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<span class="yiv6512120258">Most people go about their day without giving much thought to most of decisions they make. They instinctively make choices like normal people do. Families like mine dont have the luxury of normal. Every decision even the most mundane of activities is weighed against the pending disaster of making the wrong decision. The melt down that may last five hours or the tantrum the ends with me dragging my child to his room and blockading the door with my body. Maybe it is throw up all over the couch and carpet ( in someone else's living room ) or an entire grocery aisle filled with what moments before was on the shelf. Maybe its my child's hands and face deep into the toppings at the ice cream store or maybe its his "accident" while sitting there impatiently waiting. Maybe its my "accident" because I am afraid to leave him by himself even for a moment. <span class="yiv6512120258"> </span>The list goes on and on.</span></div>
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<span class="yiv6512120258">And of course let us not forget about the best part . <span class="yiv6512120258"> </span>All the evil disapproving stares encountered, as though we and our child delight in this messy life of disruption, while we so desperately try to maintain control over what is obviously an uncontrollable situation.</span></div>
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<span class="yiv6512120258">But none of this is the hard part. This is simply what we call life. The hard part comes after all of that. Eventually after enough such experiences we all realize that most often it simply is not worth it. And here begins the hard part. There are few outings, no birthday parties, no invitations, no play dates , no synagogue or other community events.<span class="yiv6512120258"> </span>Instead there is an incredibly rewarding but lonely experience. Rewarding because you are privileged to see things in our world that others never will. And lonely because that which you are privileged to see you watch alone. </span></div>
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<span class="yiv6512120258">This is an experience every parent raising a child with special needs has felt in some way. And so I wanted to help find places that would embrace these children and their families. I began meeting with different community leaders to try and express to them the plight of these families. I tried to explain to them that what makes our journey so unique is that unlike most other difficult journeys this one is not temporary and it does not wane. It is 24/7 and intensifies with time. Below is an email I sent to one of the community leaders after we met.</span></div>
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<i class="yiv6512120258">Dear <span class="yiv6512120258" style="background-color: black; background-position: initial initial; background-repeat: initial initial;">.............</span>,</i></div>
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<i class="yiv6512120258" id="yui_3_16_0_1_1407895139131_2351">Thanks for meeting with me yesterday. As you know this issue is important to me and personal. Unfortunately these families and their children will have no other advocates other than those of us who have been touched by this issue and although my experiences have generally been positive I know that it has not been the case for many (<span class="yiv6512120258" style="background-color: black; background-position: initial initial; background-repeat: initial initial;">........................................</span>). <br class="yiv6512120258" /><br class="yiv6512120258" />As we discussed what made Abraham different (than Noah) is that he truly loved G-d so much that he could not help but try to share that love with everyone around him. We all actively pursue what we love and if we are to be honest that is exactly why often these families and their children are forgotten. It is very difficult to love someone or something we ourselves would never want. After all no one sees disability and wishes for it nor should they.<br class="yiv6512120258" /><br class="yiv6512120258" />But for those of us who have been touched by this we have learned and seen that beneath the surface of challenge, difficulty, and disruption there is a treasure trove like no other of incredibly inspiring and beautiful humanity. There is a purity of soul that sees the world as it should be and each one of us as we should see each other. They see past human flaw and focus only on human goodness. Thats why those who have gotten close enough, literally just to notice it, are changed forever. <br class="yiv6512120258" /><br class="yiv6512120258" />On the surface there is nothing exciting about a project like this but it is right and more importantly just as these people forever change those around them they can also forever change our community.</i><span class="yiv6512120258"><br class="yiv6512120258" />While I hope that I have been able to make some strides there is still only one place where we are not alone and where <b class="yiv6512120258">IT IS ALWAYS WORTH IT</b>! There is one place where different is truly celebrated and special.</span></div>
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<span class="yiv6512120258">That place is Friendship Circle. <span class="yiv6512120258"> </span></span></div>
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<span class="yiv6512120258">When there are no play dates there are "Friend's at Home"</span></div>
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<span class="yiv6512120258">When there are no birthday parties there are "Birthday Bashes"</span></div>
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<span class="yiv6512120258">When there are no outings there are "Holiday Celebrations", "Basketball Club", "Karate Club" , "Summer Camp" , "Winter Camp", "Sunday Circle" and so much more.</span></div>
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<span class="yiv6512120258">Friendship Circle is a place where disapproving<span class="yiv6512120258"> </span>stares are replaced with warm accepting smiles and where uncontrollable disasters are met with loving embraces. It is a place where we are reminded that we have all had an "accident" and we have all dreamed of burying our face in yummy toppings. And most importantly its a place where if that happens its OK.</span></div>
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<span class="yiv6512120258">On Sunday, September 14th</span><span class="yiv6512120258">, we plan on joining Friendship Circle in the fifth annual "Walk for Friendship" to benefit their great work. Any way that you can participate will greatly support us, Yonatan, and this amazing cause. Miriam and I would like to begin this wonderful campaign with a contribution of $1,250.</span></div>
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<span class="yiv6512120258">You can participate in honor of Yonatan by clicking the link below to view our special page on the Friendship Walk website. Simply follow the directions from there, and you will ensure that every family and every child has at least one place where it is worth it!</span></div>
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<span class="yiv6512120258"><span class="yiv6512120258"> </span><a class="yiv6512120258" href="http://www.walk4friendshipla.com/YoYoTheMailManMark" rel="nofollow" style="color: #196ad4; margin: 0px; outline: none; padding: 0px;" target="_blank">http://www.walk4friendshipla.com/YoYoTheMailManMark</a></span></div>
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<span class="yiv6512120258">We thank you all for your endless support of Yonatan and our family and for so many other families.</span></div>
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<span class="yiv6512120258"> THANK YOU FOR YOUR SUPPORT!</span></div>
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<span class="yiv6512120258"><a class="yiv6512120258" href="http://www.walk4friendshipla.com/" rel="nofollow" style="color: #196ad4; margin: 0px; outline: none; padding: 0px;" target="_blank"><span class="yiv6512120258"><span class="yiv6512120258" style="color: #0066cc;">www.Walk4FriendshipLA.com</span></span></a> </span></div>
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<span class="yiv6512120258"> <span class="yiv6512120258">PS – Contributions to <span class="yiv6512120258">The Friendship</span> Walk are tax-deductible TX ID # 20-3270890. Any amount will help. Please know how grateful we are for you belief in the work of FCLA!</span></span></div>
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Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-41005276151139885622014-05-25T20:29:00.000-07:002014-05-25T20:29:03.315-07:00Fool Me Once Shame On You, Fool Me Twice Shame On Me After the bus incident in Israel we made some changes in our life. For example, we used to allow Yonatan to play in the front of our house as long as he stayed inside the gate. Since we came home we explained to him that we can no longer trust him and have taken that privilege away. I have spent time researching GPS devices, chosen one and ordered it. In addition, we used to have an issue with him running out the front door but a little while ago I installed a double sided combination lock so he couldn't get out anymore which solved the problem. We also have a fence on our driveway and so when the front door is locked, our home is a safe haven. It is a place where he can play inside or in the backyard freely and we don't have to worry. Or so we thought.<br />
Last night (shabbat), around 7:30 pm, that changed. I had been out visiting my cousin with the two younger kids and my husband was home with Yonatan. Yonatan was playing in the backyard and my husband was resting. Our bedroom window abuts the part of the back where he plays and you can hear everything. When I came home I checked in with my husband, asked him where Yo was and he told me that he was in the back. I went to put my youngest in bed and give my middle dinner. I have no idea what possessed me to even go outside and check on him in the back. After all, the backyard is a safe zone. Something obviously compelled me to go out there. When I went outside he was nowhere to be seen. I called his name, I looked everywhere. I came back in the house and searched each bedroom and called to my husband that he was not here. He was missing…again. It was a mystery, the front door was locked as was the gate. Where could he possibly be?<br />
My husband jumped up and ran outside. He looked to the left and the right and decided to go left. At that moment a car pulled up, a woman who we don't know (but apparently lives nearby and knows Yonatan) got out and said to my husband "you have a little blonde boy right? I just saw him crossing Roberston Blvd. and when I asked him where he was going he told me he was going to wait at the bus stop". For a little context for those of you are not familiar with Los Angeles, Roberston is a major street, <b>major</b>. While our corner has a crosswalk there is no light and it is certainly not a safe place for a child to cross alone. In addition, a few houses down from the bus stop is a halfway house full of very questionable resident. Junkies, drunks you name it.<br />
My husband immediately took off in a run towards the corner. On his way, he slipped fell face first into the asphalt and injured himself pretty badly but obviously picked himself right back up, ran across the street, retrieved our son and brought him back home.<br />
For those of you keeping score, this is way worse than what happened in Israel, far more dangerous and far more scary. We were very shaken up and once again damn lucky considering what the outcome could have been. I can't even give voice to the horrible possible outcomes that have been running through my head all day.<br />
I know what you may be thinking, how did you let this happen again? Why weren't you watching him. Didn't you know this could happen? Didn't you learn your lesson? That is very unfair! We were in our house. The one place on earth that we thought was a safe haven. Where we allow him to be free and roam, where we try not to have a million rules. Where we honestly thought he was safe and protected. We were wrong.<br />
That is the thing that I have been struggling with all day. The reason that I have been depressed since last night. It feels like no matter what measures we put in place, even when we think we are one step ahead of him, we aren't. In fact, he is always one step ahead of us. He is so damn smart. He is so determined that he wedged his body through a small gap between the fence and the wall and slipped out knowing full well that when he was caught he would be punished from here to next year. That he is so impulsive and so clever that he will always be outsmarting us, and also be a danger to himself. That he is so unable to control himself that he risked being able to ride the bus every week, which he knows will be the outcome of running away.<br />
It is very difficult for me to fathom a world where even my home is unsafe for him, where I can't turn my back for a second. Where there is no freedom for him or for us. Where no matter what I do to get ahead of him, I have to always fear that it isn't enough. It is very daunting and extremely upsetting. <br />
So while we have already put up a temporary measure to keep him locked in and already called someone to come and tell us what type of gate we need that even he will not be able to get around, I know that everything I do is simply a temporary solution. That he will outsmart us again. And to be honest, it is really frightening.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-34384718791478254872014-04-18T06:55:00.003-07:002014-04-19T12:52:49.131-07:00Scared Shitless It's been a while since I last blogged. The reason for that is because I have been sick. I am expecting my fourth child in October and I have very difficult first trimesters. I was basically bed ridden for the last 2 months. As you can imagine in and of itself that created much material for my blog but I have been too sick to write. I was finally feeling ready to write and then what happened today eclipsed all of my material from the last two months.<br />
We are in Israel for passover. I have been here for a few weeks with my two younger kids being cared for by my mother. My husband and oldest son came in time for the holiday. Yonatan loves to be here. He has a whole slew of activities that he loves to do when he is here, including riding the egged bus. He does it a few times a day with whoever is hanging out with him. He knows the bus numbers and where the buses go and he likes to ride to Machane Yehudah (The Shuk) and the city center (Ben Yehudah).<br />
My parents live in a complex of houses. Yonatan is of course best friends with many of the neighbors and he often wanders around the complex delivering mail and getting treats from everyone, no one can ever say no to that boy. This morning started off exactly the same way. He was outside hanging out in the courtyard doing his thing. We have a rule that before 10 am he may not knock on anyones door and usually he is pretty good about listening. He also knows he is not allowed to go past the gate at the bottom of the stairs. My husband and I were eating breakfast at the kitchen table periodically checking on him. At one point we both realized we hadn't heard him in a while and so I sent my husband to look even joking to my sister "it's no problem, he always comes back". A few minutes later I was no longer joking about it. My husband came back and hadn't found him. We searched the whole house, we went to every neighbor, we went across the street to the makolet (corner store) which is his all time favorite place because we have a tab there and so it is a mecca of endless treats. We called my Aunt and Uncle around the corner to see if he had gone there for chocolate, as he loves to do. We walked to the post office down the block, to the houses where he loves to steal mail (btw, sorry to all those ppl missing their electricity bills, we have them) and still couldn't find him.<br />
At this point I decided it was time to call the police. My husband didn't agree and thought we should give it a few more minutes but I knew he was gone and so I asked my brother in law to call them. I gave them his description, I remembered kind of which pajamas he was wearing and couldn't even say for sure if he was wearing shoes since he often walks around the complex with out them. As you can imagine at this point I was hysterical. He is nine, he doesn't speak hebrew and he is unintelligible to most everyone in english. We were at about the 45 minute missing mark. At this point we had a search mobilized. My sisters kids, my brother in law, my uncle, my very pregnant cousin, my other sister and brother in law and my parents were all out looking. All of my parents neighbors joined the search and even the man who owns the makolet was looking, because, as I often say, everyone loves Yonatan.<br />
A few minutes later the police came. For any mother that has been through this they know that the feeling you have when you have to call the police because your child is missing is terrible, it is indescribable when you have to call them and you know that your child has special needs and may not even be able to identify himself or where his home is to someone trying to help him. The police arrived and I began describing Yonatan and what he is like and his ability to communicate. I told them about his love of mail and his love of the bus and told them they should call Egged (the Israeli bus company). About 5 minutes later a call came in that they think they found him in a neighboring area. One he could only have gotten to by bus. My knees buckled and I became hysterical. My husband was still out searching so I couldn't even find him to tell him. The police would not let me go along because I was so hysterical and they took my sister and Yonatans camp counselor who has been hanging out with us for the holiday. A minute later my husband came back and jumped in my uncles car to get him.<br />
Guess what, he walked out the door, got on the back of bus unnoticed (and for free) and was taking a ride on the 18 bus to Machane Yehudah. He knew exactly what he was doing and how to do it. We were hysterical but he had everything under control. A few stops from the one on my parents corner the bus driver noticed him and pulled over. He evacuated all the riders and called over a soldier that he saw near by who alerted the police. The police already had the equivalent of an APB out and so they knew who he was right away. And THANK G-D he was home safe and sound. When the bus driver asked him who he was and what he was doing he told him "I am taking the 18 bus to Machane Yehudah" and when my husband got there to collect him he was royally pissed that we interrupted his outing.<br />
Yep, its a true story, I really can't make this stuff up! After clearly explaining to him why he was in big trouble and hugging him for dear life we punished him for hours and made him stay in his room. When we finally let him out of "prison" the first thing he said was that he needed to apologize to the bus driver. He is so damn smart! The only way to apologize to the bus driver is to get back on the bus. I bet, had we not noticed, he would have found his way back home. As I always say about this kid, the fact that he is so smart is going to be my downfall. I think I lost 10 years off my life today.<br />
Yes, the GPS device is already on order.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com1tag:blogger.com,1999:blog-8683188949220292999.post-49510233194484408252013-12-27T12:28:00.002-08:002013-12-27T14:32:25.676-08:00Running A Little Slower I am really busy. My life is crazy. Between work and my kids there is no time for dilly-dallying at all. As a result, I am always in a rush. It is a big problem for a New Yorker living in LA where no one else is ever in a rush. It always baffles me how relaxed everyone here is and why no one else has anywhere to go. Why is it that I am the only person in this town who bags her own groceries or honks in carpool line. It is truly mind boggling.<br />
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Of late, work has been particularly crazy, crazier than usual and so I have been in more of a perpetual rush than usual, if that is even humanly possible. Thank g-d for the holidays though when everything and everyone basically shuts down in the US. My company has sort of closed for the two week period and as a result, although I am working, I find myself a lot less frantically and frenetically paced. Which is why I had an incredibly defining moment as Yonatans mother this week.</div>
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I often joke that G-d gave me this life that requires so much patience but sadly forgot to give me the actual patience when creating me. Long before I was a mother I was already quite impatient. No one would ever call patience one of my virtues, least of all my husband (or my mother). The problem is, that doing anything with my eldest requires buckets and buckets of it. He marches to the beat of his own drummer always. He could care less that I am always in a rush. For this reason, I rarely take him with me to do any errands. There is almost never a "we are just going to run in and out with him". This is the biggest reason that if you drive down my block you will often see me secretly sneaking out of my house so that I can accomplish something quickly, with out my slow poke tag along.</div>
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This week though things are different. I am in less of a rush. It is the holidays and things are quiet. I termed christmas eve (one of only two days of the year that I have both child care and vacation) the "it's all about Miriam day" and lived it up to its fullest. I saw two movies and got a massage. I even managed to take a shower without a single soul screaming at me thru the closed bathroom door, AMAZING. A must be repeated moment. Tuesday was perfect, I really was free to do my own thing until 3:30 pm and man did I milk it.</div>
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The joy of Tuesday though was nothing compared to the amazement of 30 minutes on Wednesday morning spent with Yonatan. For the first time in as long as I can remember, I wasn't in a rush. I dropped the younger kids at school and Yonatan joined along for the ride. He asked if he could come with me to the supermarket and I actually said yes, something that would usually be a fate worse than death for me considering the long list of things I needed from there. But as I said, I wasn't in a rush. Let me tell you what a difference not being in a rush makes. We had a blast! I can't remember the last time I laughed so much or had such a great time at the supermarket. We raced with the cart, we laughed, he careened around the store making u-turns and giggling out loud. It was fun. The most dreaded of outings turned out to be better than an all me all the time day. All I had to do was simply slow down. Slow down and allow myself time to enjoy the experience of watching him be free to have fun. I didn't yell even once, I didn't threaten him that if he didn't listen I would have to take away his mail, all I did was sit back and enjoy my son for who he is and embrace it. And it was perfect.</div>
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If only I could be in a little less of a rush a little more often in my life. Sadly, I think we all know that is highly unlikely given my personality (and life) and so, I will have to take the moments I can get.</div>
Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com1tag:blogger.com,1999:blog-8683188949220292999.post-43673320786803629642013-10-30T10:00:00.001-07:002013-10-30T10:00:15.614-07:00Changing Winds <br />
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I have often said, when speaking of my oldest sons moods that "you just never know which way the wind is blowing" or "depending on whether or not the moon and stars are aligned in his little mind" is how the day might go. Since it is difficult to understand how he processes things it is hard to predict how he might react to things or how a day might go. In short, every day is a crap shoot.</div>
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But not lately. I am not sure what the cause is or why there is a change, but I looked at my husband lats night and said "he is simply easier lately". We pondered for a minute what the cause might be. Was it camp? Is it the new school? Is it simply that he is getting older and understanding more. Are his communication skills better and so he finds that people understand him better? Is the change actually in us? Are we calmer? Do we have a better handle on how to deal with him? Is the fact that we have fully accepted who he is and what our life is the reason? Or is it a combination of all of these things.</div>
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A few months ago, maybe even closer to a year, I woke up one morning and realized that my life was difficult. I know that sounds ridiculous considering that everyone else on earth already knew it but it seems I was a little late to the game. What I mean is, obviously I recognized that I had a big challenge in life, one that many others don't face however, I simply thought (and often verbalized) that everyone has to play the cards they are dealt and these are <i>my</i> cards. There are no choices, as a parent you do what you have to and that is it. I downplayed the difficulty of the situation. Not that when issues came up or that when we had a rough day I didn't have my meltdowns or find it hard. It was more that I looked at the total package and spoke about it as if it just was. And then one day, I vocalized that my life was hard. As if it was some great epiphany! I think that was a turning point for me. It was in that moment of fully accepting that it was hard, and that it was ok to say so, that I began to feel more comfortable in my own skin as a mother of a child with special needs. It was in the recognition that it was ok to admit it that I let out a major sigh of relief and probably acceptance. I thought I was already there but obviously I wasn't fully there until that moment.</div>
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So maybe that is the difference, or maybe it is all of the things that I listed above. It is also possible that we are having a good month and next month will be hellish or maybe not. Maybe this is the beginning of the season of change. Either way, I will take it happily and hope I am not jinxing it by writing about it (I know you are thinking that Amanda, so please knock on wood for me as only you can). </div>
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I found myself at the Apple Genius Bar for the millionth time this month on Monday. While waiting for my turn I overheard Dumb and Dumber (as I have been fondly referring to them in repeating this story) talking. Dumb mentioned that she works with special needs children. Dumber responded that it must be tough to which Dumber replied "yeah it is, the parents are the real idiots though". I will stop there in my recitation of the story because the language and opinions only get more colorful. If you know me, you know it took all of my restraint not to get up and voice my opinion but since I had already labeled them Dumb and Dumber I decided it was probably a waste of breath. If I can try to extrapolate some wisdom from this eavesdropping (and I recognize that is a stretch) I would say that maybe there is some merit to it. The idea that our children sense our emotions and react is very real. Maybe just maybe my son sees that I am calmer and so he is too.</div>
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People often come to me for advice about issues with their children. Fair warning, it is entirely possible that I give bad advice so this is in no way a suggestion that you ask me, but I think I will give some at this moment to parents who are behind me in this journey. Don't think that just because you are the parent of a child with special needs you do what you have to do. You are selling yourself short. Many people would simply pull the covers over their head and not get out of bed. They wouldn't deal with it. They wouldn't be their childs best advocate. Instead they would cobble along and do what they can. Pat yourself on the back, admit that your life is difficult. Fully accept your child and your situation and in that moment I think you too will begin to feel the season of change.</div>
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Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-68795630920276140142013-10-01T09:29:00.002-07:002013-10-01T19:39:29.141-07:00The Gift That Keeps On Giving<!--[if gte mso 9]><xml>
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">I have already written about our visit to camp and how
amazed and impressed we were by what we saw.</span><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">How special and incredible it was to see our son there and
watch him thrive. When we sent him to HASC it was with the hope that he would
have the best summer of his life. I truly did not understand the impact it
would continue to have on our every single day.</span></div>
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"> The first incredible moment happened when I picked him up
from the bus after camp. I stood there and watched the way the counselors
hugged him and didn’t want to say goodbye. The way he smiled and laughed and
had an expression of pure joy on his face. The smile on his face when he turned
to me and said “how many more weeks until I go back to camp?”</span></div>
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"> What has been even more amazing is seeing the continual
impact that camp has had on him. He is calmer and easier going. He has
something to talk about that he loves other than the mail. He has true friends
and people who he misses and can’t wait to see again. He has fun games and
activities that he picked up at camp that he continues to play at home, things
that really keep him occupied, which is definitely something new. He is easier
to transition, he started a new school the day he got back from camp and we had
almost no issues at all. He adjusted quickly and easily to both the new school
and going on the school bus everyday.</span><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span style="mso-spacerun: yes;">
</span></span><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">He is simply put, happier.</span></div>
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"> But the absolute and truly most amazing gift is the
counselors and the people who love him. We had the opportunity over the holiday
to travel to Israel. My family lives there and so we usually go twice a year.
It is not usually an easy trip to make with Yonatan. It is difficult to take
him out of his routine and bring him to a place where he really does not have
anything to do but eat candy and hit up all of my parents neighbors for ice
pops. Usually the entire trip is about survival and making it to the end. Our
last trip there, over pesach, was exceedingly difficult and ended in our
shigella nightmare (previously well documented in this blog).</span></div>
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"> Not this time! This trip was wonderful. Yonatan was calmer
and easier to begin with. However, what I truly attribute our amazing trip to
are the incredible people who came to spend time with him. Counselors from camp
who just wanted a chance to hang out with Yoyo because to them that is an
amazing way to spend a day. The boy who is working with adults with special
needs this year and came to stay with us to help out, who opened his heart to
Yonatan and had a blast with him. Greatest of all, was his counselor who spent
most of the holiday with us because he loves my son so completely and adores
him.</span><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Watching them together made
my heart sing and my lips smile all day long. So instead of two weeks of
difficulty and disaster we had a wonderful trip. Our other children got to go
places and do fun things; Yonatan learned to ride the bus in Israel and went on
the light rail. He actually did things outside of the house, every day, for the
first time ever. And every day my husband and I had an opportunity to see the
magic of HASC before our eyes as we watched the most incredible 18 year old boy
come to hang out with Yonatan during his vacation because that was really all
he wanted to do and where he wanted to be. He didn’t come because he thought he
had to or because the food was better at our house than in school. He came each
day (even on days he wasn’t supposed to) because he just couldn’t stay away.
And it was incredible.</span></div>
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"> And
so, when people ask me if I got a break this simmer and if sending him to camp
was good for us I have a new answer. The break I got was not having him out of
the house, because I love when he is home. Our break was knowing that for the
first time ever our son was someplace where he truly belonged. He was in a place
where he was normal and everyone “typical” was actually “non-typical”. What
gives me joy about having sent him there is that for the first time in his life
I was able to give him unadulterated happiness and joy and an opportunity to be
considered perfect as he is. And that is the break my soul needed. </span></div>
Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-81300139453266861152013-08-04T21:08:00.002-07:002013-08-04T21:08:28.732-07:00Visiting Day
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<span style="mso-spacerun: yes;"> </span>Sometimes we make decisions and we absolutely know with confidence that
they are the right ones. That we are making the best choice we can. More often
than not though, we decide to do something and then hope for the best. Many
things in life are a shot in the dark.</div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>That is what we felt about our decision
to send our oldest to sleep away camp. For more than a year everyone and their
brother had been trying to convince us to do it. They swore up and down that
this camp was Disney World for kids with special needs and that it was the
absolute best thing we could do for him and for our family. With all that
encouragement we felt that we had to give it a try. And so on June 27<sup>th</sup>
I packed him up and sent him, accompanies by his father, to NY for 7 weeks. As
we drove to the airport with our child crying and saying he wasn’t going, we
looked at each other and said “one summer! We will try it but after this time
we will not force him to go again”.</div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;">
</span>Even with all the assurances that he would have a blast and all the
smiley, happy pictures that were being sent to us by his counselors and our
“spies” in camp, we were still not sure we made the right choice. My husband
and I fretted nightly. We worried that he was homesick; we felt that no one
could care for his as well as we could and that he would simply not enjoy it.</div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;">
</span>A few Sundays ago was visiting day. My husband and I left the 2 younger
kids with my in laws and headed to NY. We were so excited, literally jumping
out of our skin. We could not wait to see him. We battled a delayed flight, a
confused GPS and made it about an hour and a half late. As I walked into the
camp scanning for my boy, I suddenly heard out of the corner of my ear “hi
Mommy” and my heart melted. I have never had such an amazing hug in my entire
life. We laughed, we cried and smiled ear to ear. </div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;">
</span>From the moment we got there he had a huge grin on his face. We met all
of his friends, we were stopped by countless staff members saying to us “Are
you YoYo’s mom and dad? I love him, he is amazing, he is my favorite”. Our son
took us from place to place showing us what he does all day and simply being
together and having fun. It was a perfect day.</div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;">
</span>About an hour into our visit my husband looked at me and said “it is
such a weight off”. It really was. As I said, it seemed like he was having fun
but until we saw it with our own eyes we couldn’t be sure. We couldn’t know how
right our decision was. That sending our son to a place where being different
is the norm was exactly right. That we were sending him in to the arms of an 18
year boy who is so incredible and so loves our child and with whom he has
probably formed what will be a lasting and wonderful friendship. That he would
make real friends, his own age! That we would three days later receive two separate
pictures of him smiling with his arm around his bunkmates. That this would
truly be even better than Disney Land. It is better because at Camp Hasc
everyone is like him where as at Disney Land, no one is.</div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;">
</span>There was one thing though, that everyone got wrong. Everyone talked
about how important this was for our other children and about how we needed a
break. No one told me how desperately we would miss him, how I would feel like
my right arm was missing. That my other children would ask for him daily. That
getting that good shabbos call each Friday would become what I would wait for
each week. That visiting day would be the happiest day of my entire summer.</div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;">
</span>And so I have learned something incredibly valuable. I have learned that
I do not need a “break” from him and that sending him away was not for me. I
have learned that sending him to camp was entirely for him. That giving him
this experience was absolutely the right thing to do for him because he
deserves to be somewhere where everyone thinks he is a rockstar, where no
matter what he does he is perfect in their eyes. Where kids much younger than
me choose to spend their summer caring for and loving for kids like mine. I am
blown away by this camp and by the people who work there. I wish I could say
that I would have been one of those kids who volunteer to work at camp Hasc.
But I am honest enough to say that I wouldn’t have been. </div>
<!--EndFragment-->Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com2tag:blogger.com,1999:blog-8683188949220292999.post-55211608554143235062013-06-24T15:25:00.001-07:002013-06-24T15:25:26.449-07:00Stoically Freaking Out As you know, these days I am stoic. I am taking everything in stride and it is working for me. Which is why, if you were to bump into me on the street or speak to me on the phone you would never know that I am actually totally freaking out.<div>
Why am I freaking out you ask? We have decided to send our oldest to sleep away camp this summer. There is a camp on the east coast for children with special needs. For about two years, people have been trying to convince us to send him there. There has been a real campaign going and we have finally been convinced to send him. We have been promised that it is like "Disney World for kids with special needs" and that he is going to have the summer of his life. Everyone who has ever been there swears up and down that it will be amazing.</div>
<div>
It's not that I don't believe them, obviously I do or I wouldn't be sending him. It's that I have a million emotions running through me as I think about this decision that we have made. I know that kids go to sleep away camp all the time, but honestly this really is different. First of all, he is only 8! He is still a baby and seven weeks is a long time. Second of all, I am not entirely sure that he gets it. I know he knows he is going to camp and that he is taking an airplane to get there. I know that he understands that he is sleeping there for seven weeks but I am pretty sure that he has almost no concept of time. He gets that his father is bringing him there, but does he realize that about an hour after he drops him off he is leaving him? No clue.</div>
<div>
Those are just the logistical concerns. I am not at all worried about the care he will receive, it is clear that he will be loved and well cared for. To be honest, I am more worried about myself in that regard. Being Yonatans mom is a full time job, 168 hours a week. It consumes me. In many ways it defines me. What will I do on Thursday morning when the thing that takes up 98% of my brain power is not here? Many people have offered to give me suggestions, but still, it really will be strange. I compare it to someone who G-d forbid is caring for a sick loved one on a full time basis. If that person becomes well or (G-d forbid) dies, and you no longer are responsible for their care everyday you suddenly find yourself at a loss as to what to do everyday. </div>
<div>
On the flip side, I keep hearing that this is not only the best thing for him but for all of us. A break for me and my husband. An opportunity for my other kids to shine and have all of our attention. To do things as a family that we can't otherwise do. While that sounds great, it makes me feel incredibly sad. We are a family, we do things as a unit. It saddens me to think that in order for us to be able to do things we need to not all be together. My greater family is going on a trip to Europe this summer and he will be the only one not there. That doesn't make me say "great, now we can go to more museums" it makes me want to cry that we can't do that with him. That in order to participate we need to ship him off for the summer. Yeah, I get it, he will be having a much better time. So what, I am still sad. It feels wrong as his mother to need a break. I know what all of you are thinking, every parent needs a break. This is normal. You are all wrong. Until you have a child with special needs, you really don't get it. It is not the same. There is a lot more guilt associated with my needing a break and your needing one. Sorry, but that is just the truth.</div>
<div>
My biggest fear? What happens if this is the most relaxing summer and 7 weeks I have ever had. What happens if what everyone says is true. Will it be hard to start again when he comes home? To slip back into the role of being his mom full time? Honestly, that feeling is what gives me the most guilt. </div>
<div>
And so, as I sit here 48 hours before his departure, I am silently freaking out. I am torn up in side and really hoping that he will have the summer of his life, which has been promised to me. Because if not, I will have an obscene amount of mom guilt and I may not be able to be quite so stoic about that.</div>
Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com1tag:blogger.com,1999:blog-8683188949220292999.post-5654918866488940542013-05-26T21:40:00.000-07:002013-05-26T21:40:47.168-07:00Around The Corner When I was younger I always believed that I was destined to be a great mother. Not average, not even good but truly great. I envisioned myself squiring around my large (and by large I mean many many children) brood effortlessly, being the house where everyone sent their kids to play. The mom with endless snacks and the house where all the fun was. Admittedly, in this pipe dream of mine, I conveniently omitted the fact that I am the least patient person G-d ever created and so clearly, that was in no way a factor working against my future amazing parenting. Well you know how the saying goes "Man plans and G-d laughs". At me apparently, like a hyena!<br />
Clearly, in real life I am not that Mom. For starters, there is no large brood. The word effortlessly is no longer part of the vocabulary and usually, I do not even attempt to squire all three of my children around alone anywhere. I used to always say that I would never be that mother who took her nanny places with her. I scoffed at <i>those </i>people! HA, look at me now, I can't go anywhere without at least one extra set of hands, and often I need two.<br />
On the rare occasion however, when I do make the attempt to do it and it is successful, I feel amazing. Sadly, that is the exception and never the rule. This may be a major factor in why I hate holiday weekends. It is because they loom before us as a great cavern of "no help" days.<br />
Today was one of those days of "lets just make it to bedtime". We were sailing along pretty well and at about 4:15 my oldest asked me to watch him play in front. This meant that he wanted to walk up and down the block delivering the mail. I said "sure" and with him and my youngest riding her tricycle in tow, we headed down the block. Around 10 minutes into it my middle came running down the block to check on me (per his Dads instructions) and see if I needed any help. Like I said, I rarely go anywhere with out an extra set of hands. I told my middle we were good and he said "wait for me, I am just going to get my scooter and I want to come with you". Two minutes later, he came back and we set off around the block. We were having a blast! Singing, dancing walking like old men hunched over and stooped and just simply having fun together. I was euphoric. I was patting myself on the back. See that, I told myself, you can do it. All that self congratulations over taking a walk with my <b>own</b> kids around the block, how pathetic. Not to mention presumptive. About half way down the block (literally almost backyard to backyard with my own house) we bumped into a woman who was playing in front of her house with her toddler. I have no idea why this so derailed my son and our great time but it did completely. He sat down on the grass and refused to go anywhere. He started trying to run into these people's home and hugging them (clearly stranger danger is still an issue for us). He began to run away from me and of course I ended up having to tackle him to the ground multiple times. I actually turned to my 6 year old, 6 YEAR OLD, and told him to ride home alone (without a helmut, which in and of itself takes me off the great mom list) and get his father. Before you call child protective services, don't worry, I canceled that request. All of this was of course happening on some strangers front lawn, until they finally asked if they could help and I borrowed their cell phone to call my husband who had to come help me get home. By that time I was sweating, my back and neck were killing, my bubble had burst and I was peeling off every layer I had on. Which may actually have been the more interesting show...<br />
Lessons learned? Don't be young and dumb? Don't leave home with out your cell phone? Or maybe most importantly (as my cousin pointed out) don't be so stupid as to congratulate yourself until you actually make it around the damn block!Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com2tag:blogger.com,1999:blog-8683188949220292999.post-7450928763655103772013-04-16T20:53:00.000-07:002013-04-17T06:38:54.936-07:00"I Pity The Fool" What is amazing about the Mark family is that we always try to excel at everything. We never want to be considered slackers and so we ALWAYS make sure to take everything to the next level. Really, a trait to be admired I think. Allow me to share with you our latest escapade....<br />
We went to Israel for Pesach. We had a lovely time. I will not pretend that it was easy and will admit, that for the first week my husband and I told anyone who asked that the flight had been the best part so far, but truly it was a lovely trip. Until... The night before we left my middle son became sick. He was burning up with fever, vomiting and had diarrhea. A few hours later, my husband began complaining of having the chills and feeling achy. By the next morning my middle seemed to be on the mend and I thought great, just a 12 hour bug although my husband still looked terrible. Like any good wife, I assumed he was just being a man and made him promise that he would be helpful on the flight home that night. When we got to the airport my oldest threw up all over the floor while we waited for the flight. Of course, I thought to myself, 12 hour bug 15 hour flight we are screwed. He proceeded to vomit a good portion of the flight but magically (and with great talent) got it all in the bag every time (great flying tip btw, way better than the airline sickness bags are the plastics that hold the airline magazines, try it next time. They are the perfect receptacle). When we got home he seemed to be getting worse. He had terrible diarrhea that every time I thought was gone came back. He was in and out of school and it just didn't seem to be getting under control. And then, I got sick. Terrible vomiting and stomach pains. I called the pediatrician and said "you have to help us" and had everyone in the family tested.<br />
There is a virus going around called Norovirus and that is what we thought we had. The thing about us though, is that we love to do everything the best we possibly can, and so we assumed we just couldn't shake it. Turns out we were wrong, and we could do it even better. On Sunday afternoon the pediatricians office called to inform me that we had tested positive for Shigella, which is a bacterial infection. I was elated, I cried tears of joy because I thought, yay we are all going to finally go back to feeling normal because we can take anti-biotics. HALLELUJAH! In passing she mentioned to me that we may be contacted by the health department since the lab has to report Shigella to them (yes Maimonides families, that email was about us. The mystery is solved). OK I thought, no problem. WRONG!<br />
The next thing I knew, the sh**t hit the fan (<i>literally</i>). Due to the fact that my son is in a class A sensitivity group (transalation: a class with special needs children) he had to be removed from school for a minimum of two weeks. So now, even though we are all finally healthy, I have him home from school indefinitely. Without going into all the details of what made yesterday insane suffice it to say I believe it is a miracle that my pediatrician has not yet fired us as patients. It was not a great day. I did quite a bit of crying and self pitying.<br />
When I got into bed last night I was exhausted, and sorry for the fact that I had cried so much. I finally felt sick of feeling pitiful. And so, I woke up this morning with a new resolve. I will no longer be pitiful, I will be stoic. Doesn't matter what you throw my way, I am a rock and I can not be knocked down. I am stoic. I am loving this new stoicism. It is quite liberating. So today, when I noticed that my son had a tooth that looked like it was rotting and I took him to the dentist and found out that not only does the tooth have to go but that he also has no adult bottom front teeth coming in and never will, I just smiled and nodded and said of course. Of course he has no front bottom adult teeth because we are the Marks and we love to excel at everything. So we can't just have bad teeth or cavities, we have to have no teeth, STOIC. I am telling you, it is awesome.<br />
And so, I encourage you to try it. Send something my way that you think will phase me. It won't because I am stoic and loving it.<br />
Stay tuned for the continuation of the teeth capades. I am sure they will be equally as entertaining.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-75888286171731297422013-03-17T20:41:00.002-07:002013-03-17T20:41:38.821-07:00A Really Bad Day Today was a difficult day. One of those days where part of you wants to go back and try it again and the other part of you can't believe you made it to the other side. Today may have been the most difficult one I have ever had with my son. It is hard to say if he was the problem or if I was. I am not sure what made this one the one that put me over the top. But it was that one.<br />
It started off bad, the truth is the last two weeks have been quite challenging. I don't ever know what is going on in that mind of his, or what sets him off but it has been this way for more than a week. He has really been giving us a run for our money. From the start, he was being difficult this morning. I should have known when he flagged down one of my neighbors and climbed into her car that it was only going to get to get worse from there, but somehow I decided to continue on with the day. Mistake #1.<br />
Every Sunday morning we go to The Coffee Bean. It is a long standing tradition. One I hate to punish him from and so I took him. My husband went to baseball with my middle son and My oldest and youngest went with me. We started off OK there but quickly spiraled downhill.<br />
I am not sure when the exact moment was when I began to lose it. It may have been when I had to drag him out of the Office Depot next door because he ran in the door, when the store was still closed, and they had opened to let an employee in. It could have been when I had to physically remove him from The Coffee Bean, dragging him by the arms in front of many people I knew. Possibly, when I realized that I could honestly care less what people think of me or when I realized I didn't even care what I thought about me. Maybe it was when I shoved him into the car in a pretzel fold and lodged him between the front and back seat so I would have enough time to get in the front seat and lock the doors before he could get out. It might have been when I actually drove home with him climbing between the front and back seat, a seatbelt a long lost dream. Or at the moment when I realized that if I was pulled over by a cop with an 8 year unbuckled in the front seat, tears streaming down my face, mascara everywhere he would likely arrest me and jail might have been a reprieve. Possibly, when I dragged him out of the car and gave up trying to get him in to the house because I was sweating so badly and shaking so much from all of the physical exertion and then told my son when he threatened to run away that "it was fine with me", sat myself down on the stoop and waited for my husband to come home and force him into the house. When I realized that he is already much stronger than me and that this is what the rest of my life looks like?<br />
I am not sure which moment it was. I can say that for the first time ever, as I was packing to go away for Passover, I looked at my husband and said "this may be a suicide mission and we should just stay home" and that we must be crazy to get on a 15 hour plane ride with him and then have him out of his routine for two weeks. Maybe it was the guilt that I felt over having made my other son leave his baseball game early. Or that fact that I left my 2 year old at Coffee Bean with my Aunt with out even a backwards glance.<br />
I don't know why today was the day that I thought to myself "I can't do this anymore" but now that the day is over, and my house is finally quiet (dirty and messy too, but at least quiet). Now that I have taken 3 showers because honestly that is the only place in the house where I can lock the door and be alone and breath, I know that I will do it again tomorrow. I know that I will, because I have no choice. We don't get to choose, that is not an option. And so I will wake up tomorrow morning, get my kids dressed for school, work all day, make dinner and finish packing for our trip (and yes, when I say finish packing I mean packing LOTS of drugs) because that is what we parents of special needs children do. We just keep doing. We also never stop hoping that tomorrow will be a better day.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com6tag:blogger.com,1999:blog-8683188949220292999.post-9585341635970421972013-02-13T20:36:00.000-08:002013-02-13T20:36:26.096-08:00When The Nickel Drops For my middle sons 4th birthday I decided he should have a bike. My parents came to town and we all got in the car together to go to the local bike store to get it. Being a 4 year old, he wanted something else instead, probably a lego kit or another action figure or whatever he was into at the time. But as his Mom, I decided that at 4, you need a bike and that he was getting one. On the way to the bike store, I was still working on convincing him what a great present it was when he asked me if his older brother was getting one too. I wasn't quite sure what to say, so I told him I wasn't sure. He looked at me and said "well YoYo has squishy hands so riding a bike will probably be hard for him". I am not really sure what squishy hands meant, but I did understand that he "understood". At that age he already knew his brother was different and that was how he expressed it.<br />
About a year ago, my husband and he were sitting on the couch watching TV. They were watching a show called Ninjago which is about lego ninjas who are "brothers". The white ninja, Zane, is different and is always "annoying" his brothers. In this particular episode we discovered that Zane is in fact a robot and that is the reason he is different. Sensei Woo, the leader and mentor of the ninja's, explains to the others that even though everyone is different, he is still your brother. At that moment, my son turned to my husband and said "oh, like Yonatan" and promptly turned back to the tv with out any further discussion.<br />
This past Sunday my husband went to a donate blood at a local blood drive. My middle son decided to go with him to witness his good deed. On the way there, he was asking my husband questions about blood and what it means to donate it. For some reason my husband decided to use Ninjago as a metaphor for giving blood. He talked about how Zane is a robot and just like him we also have a "jet pack" on our backs that turns our blood on and off. His little brain got straight to work and he said to his father "oh, can we turn Yonatan off of special needs" followed by "Do I have special needs?".<br />
We have never had a real discussion with our 5 (almost 6 year old) about his older brother. But we know that he "gets" it. What exactly he gets, I am not sure of. But I know that he gets it. In asking that, he wanted to know how we could help his brother. He recognizes that his brother is different and wants to help him. He is amazingly patient and compassionate towards his brother. He doesn't want him to be different because he sees that it is hard on Yonatan. He asks me all the time when he and his brother can go to the same school and why Yonatan can't go to a jewish school. It is always on his mind.<br />
I don't know when the right time to have the "talk" is. Truthfully, I dread it more than the "other" talk. It seems though, that I may not need to. That he is a pretty bright kid and so he is figuring it out on his own. That over time he will understand more and more and ask us when he has questions. It is interesting to watch this happen and to hear a 5 year olds perspective. It seems that he is piecing this together on his own in a childs way and I am pretty sure that we adults should not get in the way of that.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com9tag:blogger.com,1999:blog-8683188949220292999.post-67136220583295765272013-01-23T21:35:00.002-08:002013-01-23T21:35:25.236-08:00Palm Springs Redux It turns out that I have been blogging long enough that I am now able to write sequels. It is hard to top last years Palm Springs adventure (if you haven't read it yet, and want a good laugh, click <a href="http://markmiriamsword.blogspot.com/2012/01/sometimes-parents-are-problem.html">here</a>), so I won't try.<br />
After last years "success" we were far more gung-ho to go away this year than last. This year, both my sisters-in-law and their families came to LA for winter break and so the whole family was going away together. Everyone was going for 2 nights and 3 days. My husband and I decided that two days and one night was enough for our oldest. I did not want to take off to much time from work anyway, and so we decided that I would come home with him a day early. We came armed with our babysitter, plenty of snacks and technology and off we went.<br />
I drove with the kids and babysitter and my husband hitched a ride with one of his sisters. Happily, I employed a GPS this time and made it in great time (it helps when you don't drive two hours out of the way). The kids did great in the car, until the last 10 minutes, but I have no complaints about that.<br />
When we got there, my son needed some time to adjust to the new setting. He doesn't transition easily and was having a bit of a hard time, so I set off to the pool with the younger two and my husband took him for a drive and some ice cream. By the time he got back to the hotel he was ready to swim and enjoy. He did great the rest of the first day and even slept late the next morning.<br />
The second day was a little more challenging, but overall, he did great. (The thing about him is that even when he is great, he is a handful.) I made sure to pack it in around 3:30 so we could leave on a high note. All in all, it was a great and hugely successful trip. My younger kids had an amazing time with their cousins and my oldest did great. Yes, I did have to lie to him and tell him that both Monday and Tuesday this week were a holiday so that he would be able to get in the car and leave the city and not fear missing the mailman (that one may not work next year since he saw the mail when we got home and couldn't get over that the mailman came on a holiday). Yes, I had to feed him way to many snacks on the way so that he would be OK for the drive. But truthfully, he did great and I am really proud of him.<br />
The problem is that I am a glass half empty kind of girl. I wish I weren't, but sadly I am. As I got in the car to drive home, I was truly proud of his success but at the same time I felt myself tearing up. I was crying, because even though he was a total rock star I still dream of a "normal" life and a "normal" family. I still wished that we could be a family that could <b>all</b> go away together for 3 days and not two. I wished that I didn't have to end the vacation early in order for it to be successful. I recognize fully, that this is my problem and not his. I know that I should accept our family for who we are and not for what other families are. But it is hard. So while I am insanely proud of my son for being amazing and allowing us to have a nice family vacation, I still wish.<br />
Like I said, glass half empty...Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-44747701494180750542012-12-18T21:50:00.001-08:002012-12-18T21:50:58.060-08:00Fighting Someone Else's Battle Children like mine face all sorts of challenges in life. Being different is never easy. Some children are aware of their differences and some are not, but either way being different is an uphill battle. It is difficult to be accepted, you are often looked at funny, people are afraid of those who are different and usually don't know how to interact with them or how to act around them. Children and adults with special needs face so many challenges already, they don't need any more.<br />
I, like many others, was riveted by my TV screen on Friday and a for a lot of the weekend. I watched the events of the tragedy at Sandy Hook Elementary School unfold to my horror and disbelief. I cried for those children and their parents. I could not pull myself away from the screen even when my own children came home. I hugged them and held them close but could not bring myself to turn off the TV even in their presence. I sat there, with tears rolling down my face, thinking about those innocent children, the brave and equally as innocent teachers and faculty. I thought of the first responders who had to walk into that horrific scene and will never be able to put it out of their minds eye. I listened and watched for every bit of information that the media handed us.<br />
As I watched the first press conference being given by the chief of police, I thought to myself, he isn't giving us any info but the press is. They are filling in the gaps for us. They have given the gunman a face. They have given us details, we have the whole story. Like most people, I believed them. As the weekend unfolded though, it became clear, that much of what they were reporting was incorrect or false. This is nothing new. We have seen it happen dozens of times, we are used to it and truthfully, I usually don't really care when they report falsely, until now.<br />
When my Facebook feed begins filling up with trending articles asking if Autism or Aspergers is to blame I begin to care. When every major news website is reporting as to whether or not Adam Lanza had Aspergers and if this was what caused him to do what he did, I get angry. When people have to start writing articles in response to that notion in defense of special needs children I become furious.<br />
What happened in Connecticut is a hideous tragedy. I grieve for every parent who lost a child, for any person touched by this tragedy, for Adam Lanza's father who is left behind knowing that his son did something so heinous. I grieve for the country we live in, where tragedies like this occur way too often but I also grieve for every parent of a special needs child who now has another battle to fight because of media sensationalism.<br />
We don't know what caused Adam Lanza to wake up Friday morning and do what he did. We probably never will. It would be great to have something or some illness to blame. It would allow each of us to look at our own children and feel better knowing that we are safe from whatever it is. But as I said, children with special needs fight an uphill battle everyday. They don't need to fight this one too. They don't need people out there speculating that any one of them could do this. Parents like me should not have to worry that schools will worry about educating our children. This should not be super imposed on the face of autism or aspergers. It is wrong. Statistics say that 1 in every 4 children has autism today. Do you really want to look at every fourth kid sideways and wonder? It is obscene, it is unfair, it is just plain wrong.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0tag:blogger.com,1999:blog-8683188949220292999.post-64659628125518030942012-12-09T20:40:00.001-08:002012-12-09T20:41:38.429-08:00What A Difference A Year Makes I just finished rereading my last years post about Chanukah. As I read it, I could clearly remember the sadness and pain I felt last year. The feeling that this is what the future held. Chanukah after Chanukah of disappointment for me as a parent. Let me tell you what a difference a year makes. I want to share with you the amazement and wonder I feel right now.<br />
Last night was the first night of Chanukah. As soon as the sabbath ended we ran in to the living room to light the menorahs. As is the tradition in most homes, we light in age order. My husband finished lighting his menorah and I turned to my oldest and said "Yonatan, your turn". He looked at me and said "no" and I thought to myself, here we go again. We then turned to our middle son and said "your turn". He started to sing the blessings beautifully, when out of the corner of my ear I heard my oldest say "when Raphi finishes, it is my turn". True to his word, as soon as his brother had finished lighting his candle, my oldest stood up, held the candle and with our assistance said all the blessings and lit his menorah with a big smile on his face. After my daughter finished lighting her candle we all sang the songs that follow and had a big dance party. Yonatan led the pack! And then, like any regular kid, he sat himself down on the couch and said "OK, I am ready for my present"! It was amazing. Even more amazing, was the smile on his face when he opened his "My Own Mailbox" with its red flag, post cards and all (A huge thanks to my good friend who found that one for me). He could not stop saying thank you very much to me and my husband. He was over the moon. He was enjoying Chanukah like any other child and I simply could not believe it.<br />
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Tonight, the second night, we hosted my husbands family for a Chanukah party. Everyone came in time for the menorah lighting. Just like last night, my husband started us off and this time without even having to ask, my oldest came to the table and got ready to light his candles. As many of you know he is speech impaired and so it is not easy for him to say the brachot by himself. As he stood there reciting after us, to the best of his ability, I overheard my husbands Grandfather saying that it breaks his heart. It is very hard for him that his great grandson has trouble speaking and has special needs. It really causes him pain. As I looked at the tears in his eyes and then looked over at my son standing there lighting the candles, I thought to myself, this is not a painful moment. This is a joyous one. This is the moment when my son stood up and experienced Chanukah like all other children. I hope next year that is what my husbands grandfather will feel, because truthfully, it feels much better. It feels much better to look at my son with the pride of a Jewish Mother watching her son accomplish and enjoy what comes so easily to other jewish children. I truly hope that each year, I can go back and read my earlier posts and always be able to see Yonatans growth. It is these moments that really make it all worth while.Miriam Markhttp://www.blogger.com/profile/01034802997124846572noreply@blogger.com0