I don't write a whole lot here about medication. This is maybe because it's not something I ever wanted to be part of Janey's life. If I had never had Janey, never been witness to her life, I'd be someone who, although I'd be too polite to say so, would judge people a little for giving their kids medication for what I'd call in my mind "non-medical problems" So if you have had that thought, don't feel bad about it.
Tonight, though, I realized anew how very, very thankful I am to medication. Let me tell you about the evening. Tony took Freddy to a college fair at his school. Before he left, he asked me if I wanted him to give Janey her evening medication. I said no, because I figured he'd be back fairly early and could do it then, and I thought she'd be okay. Well, the minute Tony left, Janey started crying. It wasn't severe crying at first, and I mistakenly tried talking to my parents on the phone a little. That set her off more, and the crying turned into screaming. I got off the phone, but the damage was done. Janey spent an hour screaming. By this, I mean hysterical screaming, screaming like you'd hear if someone was being tortured or in agony of the worst type. I tried every trick I had to calm her down---food, a bath, a backrub, calm talking, snuggling, TV---but none worked, not a single little bit. She continued to scream so loudly that my eyes were ringing. I tried looking right in her eyes and saying "You need to calm down. You need to stop screaming" She tried, poor girl, she tried. She tried to take a deep breath, but her hysteria was such that she just couldn't.
Finally, I gave in. I don't usually prepare her medication, but I know how to. We crush pills in a mortar and pestle and dissolve them in water, as Janey can't swallow pills. I got them ready. Janey never, ever resists her medication. In fact, she often asks for it. Tonight, even though I'm not usually the one to give it to her and even though she was so upset, she took it eagerly. I'm sure it doesn't taste great, but she just has a drink afterward.
Janey calmed down within minutes of taking the medication. I am pretty sure there's a little bit of a placebo effect there, as I don't think it works that fast, but in a way, it's not really a placebo effect. She knows the medication is going to work. It does. She knows she will be able to get control, to calm down, and anticipating that lets her use her own rudimentary self-soothing skills along with the help I can offer to calm down some even before the medication kicks in. Once it fully kicked in, she very happily snuggled with me, played with her iPad some, sang to herself and then within 45 minutes, fell asleep.
I said at the start of this how I would have judged people for giving their kids medication for "non-medical problems". Well, I think anyone who had seen Janey tonight would see that how she was acting was in a lot of ways a medical problem. She can't function when she is hysterical. She can't talk, she can't eat, she can barely breath well. She can't certainly learn anything, or go anyplace, or enjoy life a single bit. The medication that allows her to get through the days---still not easily, but to be able to learn a little, talk a little, enjoy food and playing and going places at times---is necessary. It's completely necessary for her. I think something clicked in me tonight. The little part of me that still hated to give her medication, that still thought that I should be able to make her happier on my own, was converted. I am thankful for the medication, as I am thankful for anything that truly helps my girl.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label medical treatments. Show all posts
Showing posts with label medical treatments. Show all posts
Wednesday, October 9, 2013
Wednesday, April 18, 2012
Dealing with autism---Four styles
I've been doing a lot of reading of autism blogs and books and articles lately, and I've been struck with the differing ways that parents deal with a child's autism. It seems to me there are four basic ways, and of course, lucky you, I'm going to break down what they are!
Before doing so, I do want to say that I don't think any one way is the right way. I can't stand the polarization in the autism community. Let's face it, autism is tough, and any way you choose to deal with it that doesn't hurt your child is your business. I can't possibly judge others, lest I be judged!
Here's my breakdown....
1. Fixing autism the medical way
This is the group that feels autism is a medical, biological disorder, caused by outside forces, and that is can be treated medically. There are a huge amount of subgroups here, but the common thing is a feeling that the child was not born to be autistic, that something caused the autism. This is the vaccine/mercury/ultrasounds/pollution/diet group. I think this group, overall, tends to be people that have led a fairly smooth life up until autism showed its face. They did not ever expect to have a disabled child, and they are going to do everything in their power to fix the child. In many cases, they have a fairly good income, as many of the treatments cost a huge amount. I would guess there are families that would like to go this route, but know the rest of the family would be left dumpster-diving for food once the bills were paid for the various treatments.
2. Fixing autism the educational way
This group is the big ABA group. They believe strongly in education, and provable progress. They get their children diagnosed early, as they are readers and are alert to the signs of autism, and they get them early into ABA programs, the best autism programs at schools and the most educational out of school programs. They devote unbelievable amounts of times to their children. I think these tend to be the highly educated parents, and ones that would also have devoted themselves wholeheartedly to the education of a non-autistic child. They write the books that end with a epilogue about their child going to a new school, where no-one knows they were diagnosed as autistic, and fitting in like any other child, except probably smarter.
3. Accepting the child's autism and expecting the rest of the world to also
This group wholeheartedly embraces their child's differences. They are the autism acceptance people. They think their child is perfect just the way they are, and the rest of the world needs to accept them as they are. I think this group is often parents that are a little on the spectrum themselves, and had a tough childhood because of it, and are determined that their children have a good childhood. They are the fighters for inclusion.
4. Accepting the child's autism but knowing the rest of the world might not
This group probably looks like slackers to the other groups. They accept their children the way they are, but do what they can to make the child better able to interact with a "normal" world. They might try a little of each of the other groups approaches here and there, but they are not do or die type people. They probably have other children, and might take a fairly relaxed view about a lot of things. Autism is not the focus of their life, although they adore their autistic child.
I would probably fall most into group 4, although I have a bit of 2 and 3 in me also, and I have utmost respect for the group 1 types. Every group has something to offer to the autism world. I don't think you can really choose which group you want to be in. Your personality, your background, your beliefs and world view----all combine to make you what you are. That's why it's crazy to fight. We all love our kids, we all want the best for them. We will all benefit from a world that understands autism better.
Before doing so, I do want to say that I don't think any one way is the right way. I can't stand the polarization in the autism community. Let's face it, autism is tough, and any way you choose to deal with it that doesn't hurt your child is your business. I can't possibly judge others, lest I be judged!
Here's my breakdown....
1. Fixing autism the medical way
This is the group that feels autism is a medical, biological disorder, caused by outside forces, and that is can be treated medically. There are a huge amount of subgroups here, but the common thing is a feeling that the child was not born to be autistic, that something caused the autism. This is the vaccine/mercury/ultrasounds/pollution/diet group. I think this group, overall, tends to be people that have led a fairly smooth life up until autism showed its face. They did not ever expect to have a disabled child, and they are going to do everything in their power to fix the child. In many cases, they have a fairly good income, as many of the treatments cost a huge amount. I would guess there are families that would like to go this route, but know the rest of the family would be left dumpster-diving for food once the bills were paid for the various treatments.
2. Fixing autism the educational way
This group is the big ABA group. They believe strongly in education, and provable progress. They get their children diagnosed early, as they are readers and are alert to the signs of autism, and they get them early into ABA programs, the best autism programs at schools and the most educational out of school programs. They devote unbelievable amounts of times to their children. I think these tend to be the highly educated parents, and ones that would also have devoted themselves wholeheartedly to the education of a non-autistic child. They write the books that end with a epilogue about their child going to a new school, where no-one knows they were diagnosed as autistic, and fitting in like any other child, except probably smarter.
3. Accepting the child's autism and expecting the rest of the world to also
This group wholeheartedly embraces their child's differences. They are the autism acceptance people. They think their child is perfect just the way they are, and the rest of the world needs to accept them as they are. I think this group is often parents that are a little on the spectrum themselves, and had a tough childhood because of it, and are determined that their children have a good childhood. They are the fighters for inclusion.
4. Accepting the child's autism but knowing the rest of the world might not
This group probably looks like slackers to the other groups. They accept their children the way they are, but do what they can to make the child better able to interact with a "normal" world. They might try a little of each of the other groups approaches here and there, but they are not do or die type people. They probably have other children, and might take a fairly relaxed view about a lot of things. Autism is not the focus of their life, although they adore their autistic child.
I would probably fall most into group 4, although I have a bit of 2 and 3 in me also, and I have utmost respect for the group 1 types. Every group has something to offer to the autism world. I don't think you can really choose which group you want to be in. Your personality, your background, your beliefs and world view----all combine to make you what you are. That's why it's crazy to fight. We all love our kids, we all want the best for them. We will all benefit from a world that understands autism better.
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