Well here it is, it's been on my mind for days now, and try as I might to wish it away and go on rampages of appreciation, and give thanks for what I have and all that jazz, I realize that another school year will be upon us soon. This school year marks a special milestone in every parents life. This is the year that would be Zachary's senior year. Yes the exciting senior year, so many choices, so many possibilities, so much excitement right?
Well, this household does not need to search around and find a photographer who takes way too many pictures, charges way too much money and guilts parents into buying massive packages that they can't afford, but also can't refuse. Nope! None of that here. There will be no college applications, SAT's senior projects, volunteer opportunities, senior pranks, skip days, and no talking about becoming a responsible adult ready to go out into the world and make his mark. I guess I am spared about teaching my son how to treat a girlfriend and how to be responsible for his actions. I don't have to fear that the crowd he is hanging with is no good for him, I don't have to sit up late at night waiting for him to bring the car home and hoping he will make the right choices regarding peer pressure. We don't need to have the talk about choosing a college major that will provide him a decent living and help him become a contributing member of the work force.
My son's senior year for me, is filled with researching the technicalities of becoming his legal guardian and representative payee when he reapplies for Social Security Disability. I will be busy researching choices of where he is going to go once school is out. Do I send him to a day program for special needs adults, do I try to find him a "special needs vocation"? I have to face the reality that my boy will always be with me and the choices in my life aren't really choices they are more like "best options". What will coincide with my work schedule? Will my parents be able to help out? Will the place I send him be safe? What if he doesn't like his new placement? What plans do I have in place when my parents who have been a god-send for us are no longer around? What plans do I have in place for when I am no longer around? This is where my brain usually shuts down because it is too painful.
These questions roll around in my mind everyday, meanwhile life still goes on, bills keep rolling in, responsibilities increase, options decrease and I am not getting any younger. My mind is tired, it flips and flops from being enlightened to frightened, to pissed off, to jealous, to grateful, to confused, to guilty for feeling this way. So here is my pity party, it's out there, it's real, I will overcome it because I always do, and I will pull the strength from somwhere.
Wednesday, July 27, 2011
Sunday, July 3, 2011
What do I want for you
It is so easy to think about all of the things in the world that we do not want. The list is endless. I don't want debt, I don't want to clean, I don't want to wake up in the morning, I don't want to watch every little morsel of food I put in to my mouth, I don't want cellulite, I don't want grey hair, I don't want to spend my hard earned money on bills, I don't want the money I earn to have to be "hard earned" I think you get my drift. Imagine if we flipped the script ( I just love that saying and have been searching for a chance to use it). Oooooh what fun that would be. Focusing ONLY on what we DO want
At first I imagine my list would go something like this, I want oodles of money to live comfortably, I want the perfect figure, I want to de-clutter my home and my life, I want to go on a vacation, I want to open my closet and actually be stumped as to what to wear each day because there are so many fabulous clothes, lots of cool handbags and totes, I want a lightening fast computer with all sorts of cool softwear, I want an Ipad, Ipod, Iphone, an endless supply of peanut M&M's, a hot pink Toyota SUV that is good on gas, new furniture, a new stereo system, I want to drink 10 corona beers and not wake up with a hangover,I want a well stocked refrigerator, ( the kind that makes it's own ice and pours water), I want an endless supply of books on my kindle, glowing skin, and my own gym. I want straight silky hair, perfectly plucked eyebrows, pedicure, manicure and a lifetime of facials and spa luxuries.
I imagine having all of that would be so much fun, so delightfully delicious, so endulging and satisfying. And while all of those things are fabulous and there is nothing wrong with wealth and having nice things and treating yourself wonderful, the real question is sure to come up again and again. after the initial bliss of material possesions begins to sink in. What is it that I truly want?
These are the answers I came up with. I want to be there for Zachary in the morning when I send him off to school. I want to make him breakfast and laugh with him and send him off on his day, relaxed and calm. I want him to leave in the morning without feeling rushed and pulled and prodded like cattle, because Mom has to be to work on time so she can please other people. I want to be there for Zach and Ron when they get home. I want to be in the house, with all of their clean clothes and supper cooking while I make Zach a snack and we go through his backpack together and see what he did during the day. I want financial freedom to be able to do this without feeling like some antiquated throwback form the 50's. I want to spend my days doing the things I love to do, instead of squeezing them in at night between laundry, showers, cleaning up, and pure exhaustion. Most of all I want to find out who I really am. without apologizing to anyone, especially myself. I want to do this with the absence of judgement, FROM MYSELF. The absence of guilt from MYSELF. Who was it that said life had to be such a struggle? I watch Zachary and how he lives. Simple living he is ruled by his ID but has leaned how to control it. If zach wants to sleep after school he does, if he wants to roam around in the middle of the night listening to music, he does that too. If he loves standing out in the yard by the trees for hours at a time, doing what we all call nothing, he does it. If he runs from the pool to the hot tub back to the pool back to the hot tub, he does it. He makes sure he is true to himself, everyday. For the longest time, I tried to set an example for Zachary, he has a very good work ethic, he wakes up every morning and does what he needs to do without complaining but he makes sure he also does what he WANTS to do. I am learning from him in so many ways. I am in awe of his simple lessons he teaches me everyday. He has started a burning inside me to ask those important questions of myself. What is it that truly makes me happy? Zach knows that when he is happy I am happy. I need to keep watching and learning from him. I am so proud of the person he is and the person he has turned me into. I began talking to him as though he is a silent monk who has all of the wisdom of the wise men inside of him. He teaches me by his example. How lucky I am .
At first I imagine my list would go something like this, I want oodles of money to live comfortably, I want the perfect figure, I want to de-clutter my home and my life, I want to go on a vacation, I want to open my closet and actually be stumped as to what to wear each day because there are so many fabulous clothes, lots of cool handbags and totes, I want a lightening fast computer with all sorts of cool softwear, I want an Ipad, Ipod, Iphone, an endless supply of peanut M&M's, a hot pink Toyota SUV that is good on gas, new furniture, a new stereo system, I want to drink 10 corona beers and not wake up with a hangover,I want a well stocked refrigerator, ( the kind that makes it's own ice and pours water), I want an endless supply of books on my kindle, glowing skin, and my own gym. I want straight silky hair, perfectly plucked eyebrows, pedicure, manicure and a lifetime of facials and spa luxuries.
I imagine having all of that would be so much fun, so delightfully delicious, so endulging and satisfying. And while all of those things are fabulous and there is nothing wrong with wealth and having nice things and treating yourself wonderful, the real question is sure to come up again and again. after the initial bliss of material possesions begins to sink in. What is it that I truly want?
These are the answers I came up with. I want to be there for Zachary in the morning when I send him off to school. I want to make him breakfast and laugh with him and send him off on his day, relaxed and calm. I want him to leave in the morning without feeling rushed and pulled and prodded like cattle, because Mom has to be to work on time so she can please other people. I want to be there for Zach and Ron when they get home. I want to be in the house, with all of their clean clothes and supper cooking while I make Zach a snack and we go through his backpack together and see what he did during the day. I want financial freedom to be able to do this without feeling like some antiquated throwback form the 50's. I want to spend my days doing the things I love to do, instead of squeezing them in at night between laundry, showers, cleaning up, and pure exhaustion. Most of all I want to find out who I really am. without apologizing to anyone, especially myself. I want to do this with the absence of judgement, FROM MYSELF. The absence of guilt from MYSELF. Who was it that said life had to be such a struggle? I watch Zachary and how he lives. Simple living he is ruled by his ID but has leaned how to control it. If zach wants to sleep after school he does, if he wants to roam around in the middle of the night listening to music, he does that too. If he loves standing out in the yard by the trees for hours at a time, doing what we all call nothing, he does it. If he runs from the pool to the hot tub back to the pool back to the hot tub, he does it. He makes sure he is true to himself, everyday. For the longest time, I tried to set an example for Zachary, he has a very good work ethic, he wakes up every morning and does what he needs to do without complaining but he makes sure he also does what he WANTS to do. I am learning from him in so many ways. I am in awe of his simple lessons he teaches me everyday. He has started a burning inside me to ask those important questions of myself. What is it that truly makes me happy? Zach knows that when he is happy I am happy. I need to keep watching and learning from him. I am so proud of the person he is and the person he has turned me into. I began talking to him as though he is a silent monk who has all of the wisdom of the wise men inside of him. He teaches me by his example. How lucky I am .
Sunday, December 19, 2010
Nana
Zach was so close to my grandmother Nanny. She watched him every day for me when he was a baby so I could finish my degree. To say I miss her to the point of madness is an understatement. She just seemed to understand everything about him. She used to call him her little D-D Boy. She taught him to say "ooh wow" All the time he would be looking at things and saying "ooh wow" They were so adorable together. She loved to let him walk around with dried oatmeal all over his face and his onesie undone. Her and my Aunt Ruthie ( who we affectionately called Toot ) used to take Zach shopping for hours over the old West Side Mall. He would sit so patiently like a little angel in his stroller while they shopped and shopped and shopped. At the end of the shopping spree he would get a shiny new match-box car (obviously this was before the great match-box abduction of 1997) and he would predictably take his new car out of the pack and give the familiar "ooh wow" It made Nanny so happy to hear him say those words. Nanny and Aunt Toot used to dress Zach up in all of his outfits and have him march up and down the hallway in what was a little mini fashion show. He was such a good sport. This was all pre-autism diagnosis. Nanny thought Zach was the best kid in the world and nothing and I mean nothing was wrong with that child in her eyes. She couldn't believe how he would sit on the floor, tip a big plastic car over upside-down and spin the wheels, sometimes for hours at a time. She bragged about him all the time how well behaved he was for her. I am realizing now as I write this how Special their relationship was. They were buddies for sure. Once Zach was diagnosed life changed drastically for both of them. I knew time was of the essence so I immediately went to work trying to get him into an intensive in-home program that would possibly bring out more speech and eradicate this thing called autism that was slowly robbing my child of his verbal, cognitive and social skills. The in-home program was called discrete trial and we set it in motion. Now, I had just graduated from college and got my own apartment so it was very important that I went to work everyday. At that time there were no center-based programs for children Zach's age with his diagnosis. The therapy NEEDED to be done in our home. Without even giving it a second thought my mother came in like gangbusters. She quit her job so that she could stay with Zach during the day while a parade of T.S.S workers invaded my home like an army. They were armed with flashcards, books, sensory toys,games,reinforcers,charts,behavioral plans,and enough PAPERWORK to wallpaper the entire apartment. My job was to provide a space for them to work with him, and my mom's job was to supervise him in my home. My Mom who was affectionately known as Mom-Mom to Zach and all the T.S.S workers, watched, observed, practiced,read, charted, watched, observed,practiced,carried out drills,taught new T.S.S , kept me up to speed on progress and poured her heart and soul into becoming his greatest teacher and advocate. We soon had a team, and life as we knew it had spun a complete 360 degrees. There was very little down time for a 3 year old. He was up early every morning,bathed,fed and ready to work. I didn't really mind the intrusion in my home although I don't think I would be able to put up with it now. At the time I just didn't have a choice and I was very grateful that so many people were on board to help us out. It was difficult to go to work everyday and try to concentrate on my job. I also had extreme guilt about my Nanny. She was not "down with" the whole therapy thing and she would never have been able to witness Zach being drilled and taught the same concepts over and over and over until he was eating drinking and sleeping therapy.
Zach accepted the therapy very willingly. It was almost as if he knew how important it was for "me" to set this up so that I could have some peace of mind. The depression regarding the diagnosis lessened considerably just knowing we were doing something about it.
Nanny started to become sick and was diagnosed with cancer around this time. She was understandably uninterested in what they were doing academically with Zach. It was heartbreaking in so many ways. Zach was diagnosed in April of 1997 and Nanny had died by January of 1998.
As she lay dying on a bed in her living room, she was surrounded by her many daughters and grandchildren and her precious Zachary. Hospice was brought in and everything seemed to be happening so quickly. Zach would run around and play by her bed and make all of his funny little noises. So many times I thought he was disturbing her, but I could not have been more wrong. One time in particular he was running around the bed making all his little clucking sounds and stimulations. He was jumping up and down, quite energeticly and I kept trying to calm him down as I did not want him to accidently hurt her because by this time she had become quite fragile and sickly. I was not even aware that she was conscious, but all of a sudden I heard her whisper "Zachy, and then she started to imitate the little sounds he was making. I came in to the room laughing because I could not believe that in all of her pain and medicated state she was able to communicate with her little D-D boy. I began to call him to come in to the kitchen so he didn't disturb her and she whispered to me to "let him be." I will never forget the look on her face and the love in her eyes. She died a few days later and we were all by her side including her precious little D-D boy. A few days after her funeral I had just moved into a new apartment and I was unpacking some of my things. I had a picture of Nanny and Zach that I put into a frame and placed it on my TV entertainment stand. Right from the start Zach would move the picture from the TV stand and put it on it's own little table. I would put it back on the TV stand, leave the room, come back in and sure enough Zach would move it back to the little table. It was amusing. I could just picture her whispering "Zachy put Nanny's picture on that table to tease mommy" and he listened. He only cried for her once and that was on the night of her death. He was playing on the floor and all of a sudden he just started to sob uncontrollably. He flailed around and had himself a good healthy grief induced meltdown which lasted about 15 minutes. Here he was only 3 years old with autism, I didn't think he could possibly understand what had happened. I was wrong, he understood completely. Much more than I did. That was 14 years ago. 14 years of many ups and downs but each and everytime I bring out her picture ( the one of her and him that he moved continually right after she died) this non-verbal child will smile and say "Nana"
She must be so proud.
Zach accepted the therapy very willingly. It was almost as if he knew how important it was for "me" to set this up so that I could have some peace of mind. The depression regarding the diagnosis lessened considerably just knowing we were doing something about it.
Nanny started to become sick and was diagnosed with cancer around this time. She was understandably uninterested in what they were doing academically with Zach. It was heartbreaking in so many ways. Zach was diagnosed in April of 1997 and Nanny had died by January of 1998.
As she lay dying on a bed in her living room, she was surrounded by her many daughters and grandchildren and her precious Zachary. Hospice was brought in and everything seemed to be happening so quickly. Zach would run around and play by her bed and make all of his funny little noises. So many times I thought he was disturbing her, but I could not have been more wrong. One time in particular he was running around the bed making all his little clucking sounds and stimulations. He was jumping up and down, quite energeticly and I kept trying to calm him down as I did not want him to accidently hurt her because by this time she had become quite fragile and sickly. I was not even aware that she was conscious, but all of a sudden I heard her whisper "Zachy, and then she started to imitate the little sounds he was making. I came in to the room laughing because I could not believe that in all of her pain and medicated state she was able to communicate with her little D-D boy. I began to call him to come in to the kitchen so he didn't disturb her and she whispered to me to "let him be." I will never forget the look on her face and the love in her eyes. She died a few days later and we were all by her side including her precious little D-D boy. A few days after her funeral I had just moved into a new apartment and I was unpacking some of my things. I had a picture of Nanny and Zach that I put into a frame and placed it on my TV entertainment stand. Right from the start Zach would move the picture from the TV stand and put it on it's own little table. I would put it back on the TV stand, leave the room, come back in and sure enough Zach would move it back to the little table. It was amusing. I could just picture her whispering "Zachy put Nanny's picture on that table to tease mommy" and he listened. He only cried for her once and that was on the night of her death. He was playing on the floor and all of a sudden he just started to sob uncontrollably. He flailed around and had himself a good healthy grief induced meltdown which lasted about 15 minutes. Here he was only 3 years old with autism, I didn't think he could possibly understand what had happened. I was wrong, he understood completely. Much more than I did. That was 14 years ago. 14 years of many ups and downs but each and everytime I bring out her picture ( the one of her and him that he moved continually right after she died) this non-verbal child will smile and say "Nana"
She must be so proud.
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