The share page of today is Autism In Our House The post she wrote yesterday (LINK IN COMMENTS) has me a bit weepy and teary eyed already at 6:30 am. Her post reminded me of one I shared two years ago during my first attempts at writing. For those of you who have read this thank you for reading again :) “I’m sorry.” I say that phrase far too often. Yes, I am one of those.. I am an apologizer, a worrier and an always feeling guilty about something type of person. I think that comes along with motherhood a lot of times but I will admit, I am a gifted worrier. I make my family crazy with my worry sometimes. When we are planning a trip I always find SOMETHING to obsessively worry about. When we went to the Bahamas it was sharks, when we went white water rafting it was that someone would fall out and drown, at the amusement parks it is that one of the rides will break down. You get the picture J I try to keep my worrying at bay but sometimes it gets the best of me, especially when it has to do with my family. Emily and Zach have been the biggest beneficiaries of my worry (I’m Sorry Emily) Mike was raised in a stable loving home. His parents were exceptional and always put their children first. My up bringing was unconventional to put it mildly. By the time I moved in with my grandparents in 4th grade, I had been in several different towns and had been to at least 7 different schools. At 8 and 9 years old my brother and I were sent to live with my paternal grandparents…it was either that or we were going to foster care. Our belongings were placed in black garbage bags and we were left at the house alone until our grandparents came. *This story is a whole story/book on it’s own accord (that will be for another time) Bottom line is that when Mike and I had children they were going to have everything I never did. We were going to be the “Leave it to Beaver” family with the white picket fence and the perfectly happy children! We were going to be all about family and fun and “NORMAL”! We were married for five years before we had Emily. We were over the moon with excitement and love for our new little girl. Two years later when we had Zach, we again were just glowing with joy. A boy and a girl, I could just picture them growing up together…they would be each others best buddies at times and worst enemies, at times. They would grow and play together and we would have lots of family fun! When we started realizing that autism and ring 22 syndrome was going to throw us a little curve ball, not only did it rock our world, but it rocked Emily’s world as well. In the early years there was so much guilt on my part (OK the later years too ,I’m Sorry). Zach required SO much attention just to remain safe. If we were playing at a park or over at a friend’s I could never give Emily the time and attention I wanted because I was keeping Zach in the yard and out of the street. As Zach became older there was guilt because we could not attend certain events . We would have to leave events early or only one of us could participate because we had to divide and conquer. I am sure Emily sensed our sadness as were finding out about Zach’s diagnosis. I am sure she heard us crying or talking about what was going on. I am sure she was the brunt of my lack of patience when I had had too little sleep or was having a rough day. Emily never really talked about it or how she was feeling. When she was little she just accepted him. He was her brother, plain and simple. She knew early on he was different but it was her “normal”. When she was in the angsty middle school years she became annoyed with his behavior and never ending activity level. We couldn’t blame her. She could barely carry on a conversation with us without being interrupted by his yelling or getting into something. I worried she was angry…angry at us for having a child with such severe needs and angry that this was her life. In Jr. High and especially High school I realized that even though it was very challenging to have a brother with such significant needs, these challenges were shaping Emily to be a strong and confident young lady. Emily recognized individuals with special needs immediately and they were drawn to her because of her ability to treat them as she would anyone else. She was a LINK (typically developing peers that work in the special education rooms and go with students to classes or activities) and then became interested in working at SCAMP (the summer camp for special needs children). Neighbors and families with special needs children asked her to babysit or mentor their children because they sensed her ability to remain calm and confident in any situation. Emily never complained outwardly to us, but we knew all of this had to have a profound affect on her. I was happy that she had Beth and good friends to share her feelings with. The first glimpse I got of how she was truly feeling was through a poem she wrote in 6th or 7th grade grade. The theme was Heroes… ZACH Living in a world of silence, but he’s not quiet He’s a hero, an idol, someone to look at and learn from Energy, never stopping, running on an everlasting charge Alarms, his noises are so random, but they’re his words Expressing everything by actions, moods He speaks in a foreign language, no one knows Living in a gigantic puzzle not even the smartest genius has yet been able to solve. It’s hard, he’s there but he isn’t Its like a tease, I can’t live with him right, jealousy Of everyone who has it normal. I’d trade all my things To talk with him, to argue, to hear him say I love you I do love him, but I’ll never know if he loves me back I just assume and hope I always hear the I’m angry noise or the I’m hyper more than usual noise Or the I’m happy one. I always imagine I hear words, but it’s just another false alarm Wishes on every cake candle, each year I wait The hopes I held getting extinguished with the flames The blow of reality, like the air to the candle The dreams quickly gone Admiration for his life of no communication He must struggle but who would know? Living in a world of silence, but he’s not quiet. He’s my hero. There will always be parental guilt. I would love nothing more than for Emily to have the sibling relationship she always wanted, I worry about who she will complain about her senile parents to. But guilt and worry won’t change the situation. I know that we have done the best we can with some difficult situations. Emily has learned that friends can be great “surrogate siblings” and she surrounds herself with people that care about her. Emily is flourishing and doing well. She is happily pursuing her nursing degree and has aspirations to become a nurse practitioner or physician. I know that her life with Zach has helped shape and mold her into the individual she is today. She is involved in the Autism Speaks group on campus and she is working at a special needs camp in Grand Rapids this summer. For that I don’t feel guilt, I don’t have worry, I’m sorry, I just feel happy and proud of our beautiful girl.
Posted on: Fri, 12 Sep 2014 10:59:02 +0000
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