knitting

This morning was a little difficult for Rachel. I left her in her room to get dressed and when I came back she was just standing there waiting for me to tell her what to do next. Usually when that happens she doesn't really need instruction, just a reminder to keep going. But today she kept trying to zip up her already zipped up pants and when I reminded her she needed to button them, she just touched the button and then kept pulling on the zipper. She finally got it done, and then the rest of the morning went smoothly. I was brushing her teeth and Daddy said "the bus is here!" She smiled (with the toothbrush in her mouth) and said "ah oh!" It was cute. I hope her day continues on the upswing.

This week I'm finishing (finally) a knitted afghan for my oldest son and his wife. It is a cable knit, and it's been really fun to do. It's relaxing for me to work on it when I'm feeling stressed or worried about Rachel. I was thinking that it's just a way for me to sit and still be productive while I'm resting, but today I realized that there is another element to it. It it logical, and it progresses logically. I know how far into the afghan I am and how far I have to go, and I don't suddenly find out that I have to start completely over again. I don't sit down to work on it and find out that the pattern has completely changed. When I make a mistake it's almost immediately obvious and usually really easy to fix. I can pick it up and put it down whenever I want. My mind really likes logic, and my heart really likes the tangible, constant progress of the process. So, I guess, it helps put me back together again when I'm struggling.

I had a friend offer to watch Rachel so we could have a break. Sadly, right now if I want a break all I have to do is walk in the other room. I know that when I go back to check on her she will most likely be in the exact same place and same position I left her in. There is about a 20% possibility that she will have gotten some magazines out and spread them around, but that's about it. I want a break from having a break from her, and I don't know how to make that happen.

Bare basic needs

Last night Rachel, Daddy, and I went to watch her brother play in a basketball game. I wasn't sure how she was going to feel about going, but she can't stay home alone, so she went with us. She grinned the whole time. I'm not sure she watched the game at all, but she smiled a lot. Which was great. And I've been thinking....

We all have desires and wants and needs. I have fortunately never been to the point where I had to lower my definition of what a "need" is to just what it would take to survive.  Today I "need" to go to the store to get some eggs, milk, and Rachel's medicine. Could I live without those things? Certainly, but they are neither extravagant nor unreasonable purchases. If I got to the point where I had to say water, beans, and a tent were my only needs, because that's all I could have and it's possible to live that way at least for awhile, I could do that. Bare basic needs.

There are so many things I hope for for my children, but if I could choose just one thing to give them, just the bare basic need, it would be that they be happy. I feel like that's kind of cheating, because that implies that they will have the things necessary to be happy. However, I know people who have lots of "things" who aren't happy. I know people who have what seems to be the perfect home and family who aren't happy. I also know people who appear to have nothing, but yet they are happy. So I guess it's an attitude that I'm hoping for. Whatever occupations they end up in, whatever they choose to do for hobbies, and wherever they choose to live, I hope that they can smile a lot. And I hope their smiles are genuine and beautiful, no matter what.

seizures

Rachel had a seizure in church yesterday. There is almost nothing that can make me feel more helpless (useless) than seeing her muscles contort unnaturally while I watch, unable to help in any substantial way. I understand why people try to keep a person having a seizure from swallowing their tongue or something, because at least it seems like you're doing something. I have had people who weren't familiar with seizures actually try to take over Rachel's care during a seizure because they felt like I wasn't doing what needed to be done. I make sure she can't choke on her own saliva and keep her from rubbing on anything in such a way that it causes an abrasion, and that's really all that can be done. Her lips have started to turn a little blue twice, and we took her to the emergency room where they did exactly what we had been doing. Fortunately this seizure was very mild. It really only involved her face and her right hand, and it was only for a few minutes, and then she slept on my shoulder for the rest of the time we were there. I brought her home and she slept for a few hours. After her nap she seemed to be fine. I'm glad it wasn't any worse than that.

A few years ago she was standing outside on our deck and I was a few feet away on the lawn. I heard her make a noise and saw her start to stumble. By the time I could run up the stairs she had fallen on the wood and bent her fingernail back about 1/8 of an inch below where it attaches to the skin. She skinned her arm. She is big enough now that I can't just pick her up, and it could hurt her if I were to restrict her movements too much. All I could do is slide under her and try to keep her body from rubbing against the rough wood of the deck, causing abrasions. It seemed to go on forever, but it was probably only about ten extremely long minutes. Then she slept.

The first grand mal seizure she ever had scared me. She had been having a lot of little seizures every day (so small that if you weren't looking at her and didn't know what to look for, you wouldn't even know she had one), but she had never had a long one before. We took her to the emergency room and they took care of her. I don't get scared anymore, and I no longer even call the doctor, but I do feel helpless. I'm grateful that she only has one or two a year, and they are seldom very bad. I'm grateful that she has good medical care to make sure that she is fine. I'm grateful that she never seems to have lasting effects from the seizures. I'm grateful that, for now at least, it's over.

Color

Rachel has always liked color. When she was three or four she could name all the standard colors and definitely had her favorites (pink being the usual one). When she was in third grade she switched to a different school. Once a week I would go into the class to volunteer, usually at the same time, and I usually worked with the other students. One week I had a conflict and went in at a different time. Rachel was sitting at the desk with her work in front of her and the aid sitting next to her and both of them were looking frustrated. The teacher asked if I would work with Rachel on that particular day, so I went and sat by her. She was supposed to be doing color and shape flash cards. She had known these for years, so I was surprised that this was the assignment, but I asked her what the first one was.
 "I don't know."
"Yes you do, what is it?"
"Purple triangle."
"Good! Now what is this one?"
"Red."
"No it's not. You know what it is. What is it?"
"Yellow square."
"Awesome! Now this one."
"Don't know."
About this time I noticed that the teacher and all the aids were watching. We went through the other 10 or so cards fairly quickly, and then Rachel was free to play a game on the computer. After talking to the teacher I found out that they had been trying to do those cards with her for months, and she never had finished them all. Her IEP (Individualized Education Program) had said she knew them all, but when they tried to quiz her she just said "don't know" and so they kept trying to teach them to her. I think she was just bored. Once everyone knew she knew them (and she knew they knew) they quit trying to quiz her and she started answering when color and shape questions came up in her other assignments.

Recently we've had some new issues with color. A few months ago she refused to eat some of her food based on color. One day she wouldn't eat the beans because they were green. One day that's the first thing she ate because she liked green. One day she was eating cold cereal and ate each color separately, nearly refusing to eat the last color (It was really cute. She ate the pink and orange ones because they are "for princesses" and didn't want the others because they're "not for princesses." I can't possibly say how thrilled I am that she sees herself as a princess!!!). One day we had homemade chicken noodle soup with lots of vegetables in it. She ate everything just fine, but left the carrots in the bottom of the bowl. I'm pretty adamant that my children don't get to decide not to eat their vegetables. If it's one they don't like, just a very small portion is okay, but they have to at least try it. She's never had problems with carrots before (at least the cooked ones), so when she wouldn't eat them herself I got a spoon and stuck a bite of carrots in her mouth. She chewed them, but she wouldn't swallow them. I tried giving her a drink of water, but the carrots still stayed in the side of her mouth. None of this is that unusual, it's just extremely rare that it's based on color. If I let her refuse food every time she decided she didn't want to eat, she'd probably be hospitalized a lot of the time, so I kept trying to find ways to convince her to swallow (giving her something different to eat or drink and talking to her). Our efforts abruptly ended when she yelled something about "orange" and "bad" and spit the carrots in my face. She's never done that before and I wasn't sure how to properly show her that her behavior was unacceptable without overreacting, so I just sent her in to wash up and we went on with the evening. Her color eating issues only lasted a couple of weeks, and then they were gone (thank goodness! It's really hard to factor color into a menu when you don't know what the "color of the day" is, or even if the color is good or bad).  Then we moved on to dressing issues. One morning she refused to take off her pink underwear because she didn't have another clean pink pair to put on. It made her nearly late for school because I didn't want to start the day off just physically insisting she do what I wanted, and having a rational conversation where I present logical reasons and she changes her mind NEVER happens. Distraction works better, but it doesn't always work. Fortunately it did that day. I try to let her help pick out clothes, but she's not a morning person so it doesn't always work out very well. When I lay something out for her she sometimes gets part way through putting it on, and then decides it's the wrong color, but doesn't want to start getting dressed all over again. It makes for an interesting dilemma. Life's always an adventure around here. It's just never very rational.

"Rachelisms"

About a year or so ago I went into Rachel's room to wake her up. She opened her eyes (with apparent difficulty), and very sleepily said "Not again! This is crap!" She wasn't impressed with my stifled laughter, but I seriously couldn't hold it in. I have wished many times that I could have known ahead of time so I could have recorded it, because the look on her face was priceless.

When she was younger (probably 6 or 7) when asked if she liked something she had eaten she would usually say "it didn't make me puke." That was high praise from her. She doesn't say it anymore, but sometimes her brothers do.

A few months ago her younger brother was in a Shakespeare Festival, so we went to watch him and cheer him on. He did the balcony scene from Romeo and Juliette, some sword fighting, and was in an ensemble piece where nearly everyone died (it was Shakespeare, obviously there was a lot of death). After we came home she started talking a lot about the evening. She had enjoyed herself immensely and talked a lot more than she usually does. I asked her what she thought about her brother and she said "He wore a dress. He kissed a mermaid. He fought with swords. Lots of people took naps." As an explanation; her brother wore tights with a long tunic over the top (he looked awesome, but yeah, it kinda looked like a dress). The girl who played Juliette had red hair, and all girls with red hair are Ariel, and therefore are mermaids (obviously). I absolutely love that she thought that everyone was taking naps instead of lying there dead. It makes Shakespeare a lot less morbid. I heard other reviews of the evening, but none of them even came close to Rachel's.

Last fall Rachel and I went to the store and there was suddenly a downpour of rain. I don't think it would have been worse if someone was standing outside the car with a huge bucket of water and dumped it on us. We're not used to that kind of weather here, so it took Rachel by surprise (me too, that's why I didn't have an umbrella). When we got back in the car ready to go home she looked at me and stated as emphatically as she possibly could "water is wet!" 'Nough said!

Over the summer she had a lot of headaches and therefore had a lot of bad days. One day we had to go someplace even though she really wasn't feeling well. I was helping her get ready and she glared at me (I really wish I had a picture of her expression to put here...) and said "You're a rude, evil, bad guy!" I was just grateful that those were the worst words she could think of.

One school year a few years back her favorite word was "painful." In the morning when she was getting dressed she would frequently yell "This is painful!" at the top of her lungs. I'm grateful for understanding neighbors. During the warmer months her window was open, so I'm fairly certain they could hear her yelling at 6:30 or 7:00 in the morning. Probably not the best alarm clock. Incidentally, her brother was downstairs agreeing with every syllable she uttered. He just didn't have the energy at that time of the morning to voice it with such gusto. They're not morning people.

This is why I miss her so much when she quits talking. It's just fun to remember. Kind of keeps me going when there's a lack of words for awhile.

It's not rocket science...

When my oldest son was two or so, a well meaning acquaintance told me about her amazing sister-in-law who had potty trained her child in an afternoon. This acquaintance went on and on about how her sister-in-law was going to write a book and if everyone would just follow it, all children would be potty trained in an afternoon before the age of two (that wasn't even an exaggeration). Advice is wonderful, but unfortunately what works great for one person doesn't work at all for someone else. What works superbly one day might fail horribly the next. I don't know of any parent who hasn't figured that out eventually. I have so appreciated opportunities to talk with other parents to compare notes. I've found that the  more information I have to sort through, the better the chance is that I'll come up with something that works at least for awhile. It reminds me of a math equation. I take the advice that sounds like the best fit, take out the parts that don't sound right, add pieces of advice from other people, tweak it to fit our specific needs and abilities, and try it out. The thing I absolutely loved about math was that it was right or wrong, and it was always possible to "get it right." So maybe this is more like a scientific hypothesis where you have to keep working at it until you can "prove" it, although admittedly someone else might come along behind you and prove you wrong. That's definitely a better analogy.

Lately Rachel's hands have been more "claw-like" and her involuntary head movements remind me a little of someone who has cerebral palsy (although my information about that particular disability is very limited). Her moody teenager attitude makes me think she has difficulties with hormones. She bursts into tears frequently and speaks irrationally. I have learned to deal with her mild epilepsy and her moderate autism and her mental disabilities. It is apparently time to start amassing more information so that I can come up with my new equation and put it to the test.

When I took the tests in high school that were supposed to help me figure out what I would be best at as an adult, one of the things that came up was rocket science (really). Another was medicine with an emphasis in research. I ended up getting my degree in elementary education, but it seems that I'm doing some minimal medical research after all. I hope the test was right that I'll be good at it. School was so much easier, but the rewards weren't as good. I'd trade all my A's for a handful of smiles and hugs and the knowledge that my children are happy.

The Hardest Thing

I was speaking with a friend recently who was trying to understand Rachel a little bit better. She wanted to know what "the hardest thing" is. In all honesty, that probably has a different answer every single day. Or at least a good share of them. Today I'd have to say that the one at the top of my list is that with Rachel there is no "normal." There is no "usual." There is no "status quo." We have to take every single day as it comes. When someone asks what she usually likes to do, I don't have much of an answer. When someone wants to know what she is capable of, it depends. If I'm trying to give her a treat (food or activity) there's a good chance I'll make her angry instead of rewarding her.

She used to be able to do 64 piece puzzles by herself. Today she can't figure out what to do with an 8 piece puzzle. But a couple of months ago she did a 32 piece puzzle with just a few verbal prompts. That sounds like she is steadily getting worse, but in between the 64 and 32 piece puzzles was a time when she couldn't even acknowledge the presence of a puzzle. There is no natural progression. I'm not entirely sure if she can't do things or won't do things, but I'm not sure it really matters because the results are the same.

I have accepted the fact that she is autistic. I also know that she is mentally disabled. She is also epileptic and has ADD. The list of things she has been officially diagnosed with is actually quite long. Unfortunately, I don't think any of these things are the cause of this particular problem.

I wish I knew what her future holds. Once she is completely out of school, there will need to be something for her to do. Hopefully something that challenges her a bit, but not too much, with people who love and understand her. It wouldn't be healthy for her to stay home with me all the time. Everyone needs a reason to get up in the morning. She can't find that reason herself, and I'm not sure I have enough information to find it for her. That scares me. I've seen people who don't feel like they have a reason to be here (it's how they perceived themselves, regardless of how other people felt about them) and I don't want that to happen to my girl.

With most children, you can guess what will be happening next year, in five years, in ten. With Rachel, I can't even guess what will happen in five minutes. It makes planning difficult. This year her two older brothers are not living at home and her two younger brothers are finishing up high school (a junior and a senior). We are once again having to plan when we go to the store (and any other activities) based on who can sit with her or what her mood happens to be like. While other people are looking at having an "empty nest," we are faced with once again needing a sitter (that was the one thing I disliked when my children were all little. There was such a feeling of happiness and unbridled joy in our home when we were sure our oldest son was capable of watching his siblings!). I'm not completely unhappy about missing out on the "empty nest." I really like having my children home (as was evidenced by the wave of near depression I faced this last Monday morning at 7:30 when everyone else left for work/school and I stood at the window waving goodbye). There are many wonderful and amazing and beautiful things in our lives because of Rachel, and I couldn't leave this post just stating the difficult things because in all honesty our lives are so enhanced by her it would feel very inappropriate to just state the problems. However, there are some really, really, really, hard things.