Monday, December 31, 2007
Holiday Addendum & Clarification
I wanted to be sure and clarify that my griping about the holidays actually pertains mainly to my extended maternal family - not my paternal family or Husband's family. I was closest to my maternal family growing up, and I guess I feel that they should be the ones who should be most interested/supportive/comfortable with me and my offspring - and they're not. Well, my aunts and uncles are, my grandparents and great-aunt are, it's my generation, my cousins, who aren't. I guess that's what hurts the most. Being an only child, they were the closest things I had to siblings growing up - and I don't mean squat to them now that we're adults. It just hurts.
Honestly, Husband's family does worlds better than my own when it comes to dealing with Ellie (and me). Tyler is the sweetest, most wonderful kid in the whole world, and he loves Ellie for herself- and she knows it! She loves Tyler, too. Kelly, Judy, Samantha, and Danielle are awesome and don't worry about asking questions, which makes me feel better because then I'm not afraid to talk about it.
There are two of my paternal cousins that I'm closest to, Suzanne and Shane. Suzanne, of course, knows exactly what I'm going through because her son is also an Autie, and he's a successful young man. She has been nothing but supportive since Ellie was diagnosed.
And there's Betty, whom I now realize I have wronged in turn, just like my maternal cousins have avoided me. We used to do things together with our girls whenever we could make time, but we haven't managed that in almost four years now. On February 11, 2004, Ellie was diagnosed with CP, and the bottom fell out of my world. On May 17, 2004, my cousin Shane and his wife Betty had, and lost, a beautiful baby boy. All of us were locked in our own depressions. By the time I started to come up out of my own pit, I was pregnant with Marty. I couldn't even bring myself to tell Shane and Betty about my pregnancy, because I didn't want to feel like I was rubbing their noses in it, especially when I had hurt so badly for them and had made a habit of stopping by their boy's marker once a month on my way to work. I didn't tell them until I "had" to. Then, I was afraid to tell them after he was born, because I didn't want to hurt them, so I put it off until I "had" to. Marty will be two years old in February, and they have only seen him twice. Their daughter, whom we love and is only eight months older than my daughter, has been through some horrible medical issues, but I have not been there for them because I was afraid of hurting them with the son I can hold in my arms, instead of just in my memories.
Just like my cousins have tried to shelter me from the imagined pain of seeing their NT children...
Betty wrote a very heartfelt response to my last post, and it really woke me up. Thank you for being there, and I'm sorry I haven't been there for you. If you can stand it, so can I! We still love you, I'm just an overcautious fool.
Sunday, December 30, 2007
The Holidays - Thank Goodness They’re Over
Ah, the Holidays - thank goodness they're over! I dread the holidays every year. The closer they get, the more tense and stressful my homelife becomes, and the more tense and stressed-out I become. The holidays shorten my fuse and rub my emotions raw, and that makes me easily hurt or easily angered (usually without a real reason, I'm just waiting for it to happen). At work we call it "expectation of rejection" or "self-fulfilling prophecy." I expect something to go wrong, I prepare for something to go wrong, and somehow I manage to either make it go wrong or imagine it went wrong. Then again, something usually goes wrong.
Ellie loved the holidays her first three Christmases. Her fourth Christmas, when she was three years old, roughly one month after she was diagnosed with Autism in addition to the Cerebral Palsy, resulted in a complete and utter meltdown. It was with my extended maternal family, as always, in a home she knew well, with people who loved her and whom she loved and (always before) looked forward to seeing, This time, though, it was too much. She cried and screamed the entire two hours I tried to be there. She spent the whole time in my arms, with her face buried in my neck, bawling - loudly. The whole "family time" was an utter waste. She was distraught, her distress made me distraught, and her caterwauling made it impossible for me to talk to anyone or participate in any of the festivities. I wasn't angry with her, but my Mommy-Heart was broken because I didn't know what was wrong or how to fix it. I took her home, she was fine. She went to bed, I cried myself to sleep in helpless misery (and a pool of self-pity).
That was the beginning of my dislike of the holidays. Ever since then, my well-meaning cousins, with their 12 collective beautiful Neurotypical children, have been a little "odd" around me and my Ellie. They don't know how to talk to me, or to her. They don't know how to make it better, and they don't want to make it worse, so they try to avoid talking to me - at least, it seems like they avoid me. They don't want to make me feel bad by talking about the achievements of their perfect little NT broods, and they don't want to chit-chat and swap notes about how this child is progressing compared to my child. Any achievement of Ellie's that I mention is always met with something along the lines of a heartfelt, "Oh, that's wonderful! She's doing so much better! That's such a blessing!" and a change of topic.
They have nothing to compare it to. They don't live in a world filled with daily stretches, adaptive equipment, Physical Therapy sessions twice a week, Occupational and Speech Therapy sessions once each per week, struggling to get your child to communicate, broken hearted crying for no apparent reason and no way for her to tell you why or what can make it better, meltdowns and tantrums because the Dora episode she just watched on Nick Jr is not one you have on DVD so you can't play it again - and she doesn't understand why, because she can watch other Dora episodes over and over, why not this one? My girl, my world.
But this IS my life. This is what I have to talk about. So, when we're together, when I should be enjoying my cousins and their children, when I should be renewing the relationships that meant the most to me growing up, when I'm surrounded by my family, I'm still alone.
Last year was as bad as the first time. This year was a little better. We had a "quiet room" set aside for Ellie and any of the other kids who wanted to go in, quietly, and watch videos. Eventually, she did stop crying, and then she came out to see what the other kids were doing. She didn't actually play with them, but at least she was curious. It's an improvement.
Marty's birth last year added a new dimension to my frustrations, because he is NT. I couldn't leave this year when Ellie was so distraught, because Marty was playing with his cousins and having a wonderful time. He deserves to have those wonderful times, to run and play with the other kids, to socialize - even if that means added stress on his big sister (who could use some socialization, if only she was more willing). So I stand here, weighing the benefits to one child versus the detriments to the other, and really just wanting to bang my head into the walls. My cousins actually talked to me a little this year - about Marty. Nothing but praise for my beautiful, brilliant, outgoing, happy, all-boy boy!
But no one wanted to mention my daughter, my beautiful, intelligent, loving, challenged girl. It was bittersweet for me - now they want to talk to me, now they can compare their children to my child, my younger child, but no one dare mentions the elder, even though she's only in the next room watching Oobi.
But we got through it. And we got through the in-laws extended family Christmas the same way. We made a sanctuary for Ellie, and she came out to observe on her own terms. She was actually better about my in-laws Christmas than my family's Christmas!
Marty just had a blast wherever he was. He ran, he played, he chased with cousins, he shared toys, and just generally was a joy. He is everything we could have asked for in a boy or a second born - and then some! My boy, my joy.
At home, we had some wonderful breakthroughs with Ellie. For the first time, I caught her snooping for presents! I heard our bedroom light click on and went to investigate. I hadn't really hidden the presents well, just left them on bags on top of a high dresser, because Ellie had never cared before and Marty was too little to know what was going on. There was Ellie, trying to climb up to the presents! She saw me and burst into giggles, then ran (as best she can) for her room. I also caught her playing with a doll for the first time in two years (we sometimes use a doll in Speech, so she won't play with them anymore because they're "work"). She was hugging what was once her favorite doll when I came in her room. She dropped the doll like a hot brick, then kind of watched me out of the corner of her eye while she played with the doll's fingers and toes. I didn't say anything about it at all, just left her to it, so I wouldn't intrude on her play or make her feel like she "had" to do anything. A few days later, she crawled through the house pushing her pink mini-van (which has been dormant for about two years as well) and pushing the buttons to make it talk! She watched Christmas movies, asked for "Santa Claus" more than once (I wish I could find it on DVD), and checked out her empty stocking a few times in the days before Santa came. She spent long periods off and on sitting in front of the tree, just looking at it and bouncing on the ottoman, giggling.
On Christmas morning, she ran in and out of the living room at least four times, working herself up to it. Each time she got a little closer to the presents Santa had brought. It was just so very exciting! She would come in, look, squeal, and run out. She came to the steps (sunken living room) and said softly, "Santa, Santa, Santa!" Finally, she came all the way in and started to explore the gifts. She actually went through her stocking, herself, for the first time (the thing that most excited her was a new toothbrush - she loves to brush her teeth), and she played a little with the presents that were left unwrapped by Santa Claus. When it came time to open wrapped gifts, she did! She unwrapped her own presents. She even stayed in the livingroom while Marty, who found the whole thing a jolly good time, tore into his stocking, the unwrapped presents, and his own presents, declaring, "Oh, wow!" with each new item.
Okay, so looking back at everything I've written, I guess this was the best holiday season in the past three years. I came to it dreading it, because the last two years were absolutely miserable, but it wasn't so bad. Christmas at home with the kids is always good, it's when we throw everything else into the pot that it gets to be too much.
I know that the people who love us will never be able to understand what life is like with Ellie and Marty because they'll never live it. I know I was the same way about "people in my situation" up until I was thrown into the situation myself. Yes, I'm petty enough to be jealous that my cousins all have NT kids, and I look at them and say, "Why? Why me? Why Ellie?" - but that's the way I look at the whole world's NT kids, too. I'm not mature enough yet to give that up. I watch their girls who are the same age as Ellie, and I try to imagine what she would be like if she were free of the disabilities... and I can't. I can't imagine her any other way. She's Ellie.
That's Just The Way It Is.
Ellie loved the holidays her first three Christmases. Her fourth Christmas, when she was three years old, roughly one month after she was diagnosed with Autism in addition to the Cerebral Palsy, resulted in a complete and utter meltdown. It was with my extended maternal family, as always, in a home she knew well, with people who loved her and whom she loved and (always before) looked forward to seeing, This time, though, it was too much. She cried and screamed the entire two hours I tried to be there. She spent the whole time in my arms, with her face buried in my neck, bawling - loudly. The whole "family time" was an utter waste. She was distraught, her distress made me distraught, and her caterwauling made it impossible for me to talk to anyone or participate in any of the festivities. I wasn't angry with her, but my Mommy-Heart was broken because I didn't know what was wrong or how to fix it. I took her home, she was fine. She went to bed, I cried myself to sleep in helpless misery (and a pool of self-pity).
That was the beginning of my dislike of the holidays. Ever since then, my well-meaning cousins, with their 12 collective beautiful Neurotypical children, have been a little "odd" around me and my Ellie. They don't know how to talk to me, or to her. They don't know how to make it better, and they don't want to make it worse, so they try to avoid talking to me - at least, it seems like they avoid me. They don't want to make me feel bad by talking about the achievements of their perfect little NT broods, and they don't want to chit-chat and swap notes about how this child is progressing compared to my child. Any achievement of Ellie's that I mention is always met with something along the lines of a heartfelt, "Oh, that's wonderful! She's doing so much better! That's such a blessing!" and a change of topic.
They have nothing to compare it to. They don't live in a world filled with daily stretches, adaptive equipment, Physical Therapy sessions twice a week, Occupational and Speech Therapy sessions once each per week, struggling to get your child to communicate, broken hearted crying for no apparent reason and no way for her to tell you why or what can make it better, meltdowns and tantrums because the Dora episode she just watched on Nick Jr is not one you have on DVD so you can't play it again - and she doesn't understand why, because she can watch other Dora episodes over and over, why not this one? My girl, my world.
But this IS my life. This is what I have to talk about. So, when we're together, when I should be enjoying my cousins and their children, when I should be renewing the relationships that meant the most to me growing up, when I'm surrounded by my family, I'm still alone.
Last year was as bad as the first time. This year was a little better. We had a "quiet room" set aside for Ellie and any of the other kids who wanted to go in, quietly, and watch videos. Eventually, she did stop crying, and then she came out to see what the other kids were doing. She didn't actually play with them, but at least she was curious. It's an improvement.
Marty's birth last year added a new dimension to my frustrations, because he is NT. I couldn't leave this year when Ellie was so distraught, because Marty was playing with his cousins and having a wonderful time. He deserves to have those wonderful times, to run and play with the other kids, to socialize - even if that means added stress on his big sister (who could use some socialization, if only she was more willing). So I stand here, weighing the benefits to one child versus the detriments to the other, and really just wanting to bang my head into the walls. My cousins actually talked to me a little this year - about Marty. Nothing but praise for my beautiful, brilliant, outgoing, happy, all-boy boy!
But no one wanted to mention my daughter, my beautiful, intelligent, loving, challenged girl. It was bittersweet for me - now they want to talk to me, now they can compare their children to my child, my younger child, but no one dare mentions the elder, even though she's only in the next room watching Oobi.
But we got through it. And we got through the in-laws extended family Christmas the same way. We made a sanctuary for Ellie, and she came out to observe on her own terms. She was actually better about my in-laws Christmas than my family's Christmas!
Marty just had a blast wherever he was. He ran, he played, he chased with cousins, he shared toys, and just generally was a joy. He is everything we could have asked for in a boy or a second born - and then some! My boy, my joy.
At home, we had some wonderful breakthroughs with Ellie. For the first time, I caught her snooping for presents! I heard our bedroom light click on and went to investigate. I hadn't really hidden the presents well, just left them on bags on top of a high dresser, because Ellie had never cared before and Marty was too little to know what was going on. There was Ellie, trying to climb up to the presents! She saw me and burst into giggles, then ran (as best she can) for her room. I also caught her playing with a doll for the first time in two years (we sometimes use a doll in Speech, so she won't play with them anymore because they're "work"). She was hugging what was once her favorite doll when I came in her room. She dropped the doll like a hot brick, then kind of watched me out of the corner of her eye while she played with the doll's fingers and toes. I didn't say anything about it at all, just left her to it, so I wouldn't intrude on her play or make her feel like she "had" to do anything. A few days later, she crawled through the house pushing her pink mini-van (which has been dormant for about two years as well) and pushing the buttons to make it talk! She watched Christmas movies, asked for "Santa Claus" more than once (I wish I could find it on DVD), and checked out her empty stocking a few times in the days before Santa came. She spent long periods off and on sitting in front of the tree, just looking at it and bouncing on the ottoman, giggling.
On Christmas morning, she ran in and out of the living room at least four times, working herself up to it. Each time she got a little closer to the presents Santa had brought. It was just so very exciting! She would come in, look, squeal, and run out. She came to the steps (sunken living room) and said softly, "Santa, Santa, Santa!" Finally, she came all the way in and started to explore the gifts. She actually went through her stocking, herself, for the first time (the thing that most excited her was a new toothbrush - she loves to brush her teeth), and she played a little with the presents that were left unwrapped by Santa Claus. When it came time to open wrapped gifts, she did! She unwrapped her own presents. She even stayed in the livingroom while Marty, who found the whole thing a jolly good time, tore into his stocking, the unwrapped presents, and his own presents, declaring, "Oh, wow!" with each new item.
Okay, so looking back at everything I've written, I guess this was the best holiday season in the past three years. I came to it dreading it, because the last two years were absolutely miserable, but it wasn't so bad. Christmas at home with the kids is always good, it's when we throw everything else into the pot that it gets to be too much.
I know that the people who love us will never be able to understand what life is like with Ellie and Marty because they'll never live it. I know I was the same way about "people in my situation" up until I was thrown into the situation myself. Yes, I'm petty enough to be jealous that my cousins all have NT kids, and I look at them and say, "Why? Why me? Why Ellie?" - but that's the way I look at the whole world's NT kids, too. I'm not mature enough yet to give that up. I watch their girls who are the same age as Ellie, and I try to imagine what she would be like if she were free of the disabilities... and I can't. I can't imagine her any other way. She's Ellie.
That's Just The Way It Is.
Sunday, December 2, 2007
New Family Member!
We have a new family member - Obi! She's a 4-month-old kitten we adopted for Ellie for Christmas. She fit right into the family as if she was born to be here. She loves all of us - even the unpredictable Ellie and over-excitable Marty. She takes turns sleeping in our various beds (she loves to snuggle Marty when he's asleep) and cuddling with us awake, purring all the while. I added a picture of her to the site.
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