Sunday, May 25, 2014

Fool 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.
     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?
     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, major. 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.
     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.
     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.
     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.
     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.
     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.  
     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.

Friday, April 18, 2014

Scared 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.
     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).
     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.
    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.
      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.
     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.
    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.
     Yes, the GPS device is already on order.

Friday, December 27, 2013

Running 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.
     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.
     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.
     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.
     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.
    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.

Wednesday, October 30, 2013

Changing Winds

     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.

     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.

     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 my 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.

     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). 

     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.

     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.

Tuesday, October 1, 2013

The Gift That Keeps On Giving

     I have already written about our visit to camp and how amazed and impressed we were by what we saw.  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.
     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?”
     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.  He is simply put, happier.
     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).
     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.  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.
     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. 

Sunday, August 4, 2013

Visiting Day

     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.
     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 27th 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”.
     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.
     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.
     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.
     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.
     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.
     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. 

Monday, June 24, 2013

Stoically 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.
     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.
     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.
    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. 
     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.
    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. 
    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.