Okay. You KNOW I have to talk about the kids I just babysat. They were fantastic.
I made friends with the mother of these children through Isabel's teacher last year. The daughter was in Isabel's developmental pre-school class, and her and Isabel have become best friends. This little girl has since been mainstreamed into a regular pre-school. She had speech delays last year, but doesn't anymore. In fact, she's talking circles around Isabel now. She just turned four years old last weekend, and is about where Isabel is at developmentally (Isabel's five and a half years old). So, she and Isabel play together really well.
They're sooo cute together. She is a full head shorter than Isabel and has the longest, blondest hair I've ever seen. She doesn't mind that Isabel is ALWAYS in her face and trying to hug her. She's so cute, she just wants to hug her. I really can't blame her. We have a lot of talks about personal space. But, this little girl doesn't help much with that. She loves to hug Isabel back right back.
They snuggle and hug and try to walk with their arms around each other, the sides of their faces pressed up against each others. Isabel has to bend way over for this. It's so funny. Isabel says, over and over again "I love you. I looovvveee you..." And this little girl just says it back, "I love you too Isabel." And when Isabel screams suddenly and comes unglued over a toy not fitting into another one, or WHATEVER she decides to come unglued over, this little girl just looks at her funny and ignores the tantrum. After it's over, she goes back to playing with her like nothing ever happened. Bless, bless, bless her little heart.
Every time she talked to me today, it surprised me. She's so little, about the size of Cale, yet she talks in full sentences. "I'm hungry. Can I have some oatmeal?" she asked and I startled a little bit. She continued, "My mom said that the other kids can have some of my oatmeal too. My mom brought one, two, three, four, five oatmeals. It has apples. It's apples oatmeal. Yumm."
Isabel said, "Oooh yeah! Apples oatsmeals! Yumm!" Isabel HATES oatmeal.
When I babysit these two, the little brother is the one who really fascinates me. I think it's because he's a full year and a half younger than Cale and he's not REAL verbal yet, but communicates very well regardless. One time, when he had a dirty diaper, I watched him go over to his bag and pull out a diaper and some wipes. Then he brought them over, set them on my lap, and said, "Uhh. Uhh." "Holy crap!!" I said out loud. He was only 18 months old then.
Cale takes off his own diaper and spreads everything all over the walls, the carpeting, and all of his stuff, rather than let me know he needs changed. All the carpet cleaner in the world isn't going to bring his carpeting back. In "normal" children this means they're ready to be potty trained. In Autistic children, well unfortunately, they need SOME motivation to communicate before potty training can be effective. I know. I've tried to potty train him over and over and over and over again.
Now the little brother is two years old and when they got here today, he looked at Cale and smiled and said, "Hello." Cale didn't acknowledge him at all. Later on, I asked him if he'd like some water and he said, "Yeah. Wit ice an a traw." I almost fell over backwards! I'd pay BIG money just to get Cale to say, "Uhh. Uhh."
I watched this child eat an entire bowl of oatmeal (OATMEAL!!) and a small container of applesauce (APPLESAUCE!!), all without getting one drop on himself. My son does unholy things with oatmeal and applesauce. If fact, he's banned from anything that spreads like shampoo in his hair because that's where his food goes (over his head). Then he rubs it all around.
Cale gets DRY foods because I can sweep them off the floor instead of hanging a screaming three and a half year old over the kitchen sink, one more time, to wash his freakin' hair for the fifth time that day. It's getting to the point where I'm not strong enough, physically, to wrestle with Cale. It just breaks my back. I don't know what we'll do when he gets even bigger. I guess we'll either feed him nothing but dry cereal OR we'll let the oatmeal solidify in his hair.
Cale spent forty five minutes in the high chair today because he wouldn't say, "up." I know he can say it. He's said it several times this week, in context. But, today he wouldn't say it. So, he sat there. He might not realize this, but his mother is more strong willed than he is. Now that I know he can do it, the game is over. If I have to leave him in that damn chair for the rest of his life, I'll do it.
This child's GOING to learn to communicate if it kills me. ABA here we come! SARRC (Southwest Autism Research and Resource Center) says they can help me teach him to communicate and that will help the screaming and all the frustration a lot. I don't know about that. Isabel can communicate and she still screams and breaks things ALL the time. But, I've got to try it. I really have no doubt that if I made Cale say, "eat" before I fed him, he'd starve to death in that chair. We'll start the class on April 13th.
Sometimes, when I'm around "normal" children, it feels like someone is tapping on my heart with a hammer. Like it might be punctured at any moment. But, at the same time, I love it. Or, I should say, I love them. It's the oddest sensation. I can't take my eyes off of them. They are so fascinating to me that it hurts. They're so little, yet they talk.
I heard a story one time about a woman who, after the death of her child, described having, "gobbling mother eyes" when she saw children. This is kind of how I feel when I see "normal" children. I know it just ooozes with self-pity, but sometimes I feel like a spoiled little girl who says to God, "How come all my friends got them and I didn't?! It's NOT fair." And of course God says, "You're children are perfect Jessica."
"Normal" kids can communicate effectively. God I get jealous about that. They have real live little emotions that are sort of these uncontrolled, slightly less sophisticated versions of our own adult emotions. If they aren't hungry, angry, lonely, or tired (HALT - you know where I got that from), then only the tiniest bit of guidance is required to have a very happy child. It's absolutely fascinating. Alden was this way when he was real little, but I took it for granted then.
My secret wish is to have one more "normal" baby. One that would grow into a "normal" child and be able to look me in the eyes, talk to me, caress my hair, and sing old church camp songs to me. Alden did these things when he was real little. He still does them today sometimes. I don't take it for granted any more though. I savor it like cheesecake on a Sunday afternoon.
I'd love one more child. But, alas, I don't trust our genes. After having one Autistic child, it is TWENTY TIMES more likely that the next one will not only be Autistic as well, but will have more severe Autism than the previous child. Yeah. No shit. That's how people end up with six Autistic kids in a row. By the time they realize the first is, it's too late. I'd never survive another one. My tubes have been physically slashed, burned, clamped, and cauterized. They've also been mentally kicked, crushed, stomped on, and completely destroyed. And I'm seriously considering having Shane get a vasectomy too, just in case.
I found an old e-mail that I sent Shane when he was in China (years ago, when Alden was 18 months old and Isabel was 6 months old). In this e-mail I told him all the words Alden started saying while he was away. At 18 months old Alden was saying Grandma, Grandpa, daddy, pretty, help, diaper, swim, bug, breakus, munch, and dinno. He was saying muk (milk), water, drink, blankie, book, coffee, puppy, and medcin (medicine). He could count to ten, and could sign a bunch of words.
I also talked about how Alden was starting to really try to initiate communication. My exact words were, "I think the signing helps him to slow down and isolate concepts. Then he concentrates more on how to say it...He's becoming more interested in using communication rather than crying!!" I recently watched a home video of Alden (from when he was around 18 months old, Isabel had just been born). In the video he says, "Mama, I'n pooopy. Pooopy. Mama, pooopy."
Wow. Cale's words are "Maamamama," and "up." Yup. That's it. And Cale is TWO YEARS older than Alden was then. I don't mean to compare him to other children, but honestly, how can I help it? How will I ever keep track of where my children are at developmentally if I don't have normal children around to compare them to?
And how will THEY ever have a chance at learning what it means to be a child, if they're never around "normal" children? I know it hurts. I know it's painful to witness, especially when it's plain to see that they're SOOO far behind "normal" kids. And some "normal" children aren't as kind as these two little ones I watched today. But IT IS NECESSARY for Autistic kids to be around normal kids.
I'll tell you this. I can (with therapy) teach my kids to communicate (hopefully). I can read to them. I can teach them about pictures, colors, shapes, letters, and numbers. I can help them to learn all their academics. All the school work that can help them succeed in life. But I cannot teach them how to let go be a child. Not really. Because I'm an adult.
I can't teach them about the joy of running fast through sand, laughing hard, to get to the slide. Of digging holes with their bare hands. Of wiggling and giggling at nothing in particular. Or, the exhilaration of hiding under a bed, hoping to not get "seeked" right away. Of being goofy, laughing at poop jokes, impulsively stomping a puddle. I can't teach them to be as silly as only a child can be. I can try, but "normal" children will be much more effective at teaching them HOW to be CHILDREN.
I know it's tempting to hide them away. To keep them safe, at home, and try to keep the world out. To try to teach them "social skills" ourselves. To not let them be harmed by the possible cruelty of other kids (and adults), by the world not seeming friendly, and by their own differences. But, to hide them away because of my own discomfort at watching them struggle, my own jealousy, my own insecurities, and my own mother bear instincts, is just plain old fashioned selfishness.
Get Autistic kids to play with "normal" children AT ANY GIVEN OPPORTUNITY. I had someone say to me, recently, that there are NOT a lot of people who are willing to do the work to be a friend when you have special needs kids. I do find that to be true. There really aren't many, but there's always someone.
When I was growing up, my only sibling was Autistic. Of course, they really didn't know much about high-functioning Autism back then. He had severe delays in speech, cognition, and social skills. He had years of speech therapy and was always in special education classrooms. My parents sort of blamed the speech delays on me because I talked for him for the first five years of his life. I watch Alden do this with Isabel now. My brother still lacks social skills to some extent. He was never formally diagnosed, but after having my kids and learning all I've learned, I can see it clear as a bell.
When I first found out that Isabel was Autistic, I asked God why on Earth he would give ME and Autistic child. "I know NOTHING about what to do with Autism, God. Why me?" And I swear what I heard was, "Honey, you know exactly what to do with Autism. You've had Autism around you your whole life. You just didn't call it that." And my brother popped into my mind.
We were always pretty isolated socially. We had ONE family that we ever spent any real time with (they had five kids in this family) when we were growing up. When we had birthday parties, these kids were always the only ones there. Never was there friends from school. Nope. JUST this family. God BLESS them for this. But, I remember asking my mom once why we didn't have any other friends. And she told me that it was because these kids were the only kids that were nice to my brother.
The only other place my brother made real friends was at the church camp I always go on about. Can you blame me for going on? You see? God will always make sure there's someone.
When I do find children that will play with my kids, it doesn't matter if they're years younger, where they're at developmentally, or how painful it is for me. I let them play. They have A LOT to learn from "normal" children. Yes, they NEED a lot of guidance and help with this. And, yes, they will be hurt. They'll be tortured and laughed at and stared at and made fun of. But, they might make a friend. Yeah. And that's worth taking major risks for.
Addendum: My friend just sent me a copy of this poem. It's actually one I've heard about and have been looking for! It's pertinent to this post, so here it is. Thanks hon!! Love you!
WELCOME TO HOLLAND I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this… When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. Written by Emily Perl Kingsley | |
