Friday, October 28, 2011

Well, you KNEW it was coming...


This will not come as a shock to anyone who is friends with me on Facebook. It probably won't come as a shock to the dozens of people I e-mailed either. So for the rest of the world, as of a week ago, I was put on bed rest for the remainder of my pregnancy. I hit week 30 two days ago, and full term is 37 weeks...so I've got a ways to go.

I will write a little bit about what bed rest is like, in case you were wondering. First of all, my movement (standing or walking) is restricted to four hours a day. When my doctor first told me that, I was pleasantly surprised. Four hours seemed like a ridiculous amount of time. However, it has run out quickly every day, and if I even THINK about going over my four hours, contractions start up and I end up back at the hospital for a shot of Red Bull (at least that is what it feels like they're injecting me with) before I'm sent back home with stricter instructions to keep hydrated and for pity's sake to rest!

So I am still allowed to do things like shower, run MINOR errands (for me, this a trip to the library to exchange the large number of books I now have time to leave) and do very, very, very light housework. I'm actually having a hard time with the last part because now that my home LITERALLY is my world, I am finding a bunch of stuff to clean, fix, etc....which gets me in trouble physically. And I'm finding that if I DON'T take care of it while Chris is gone, my attitude towards him when he gets home is pretty negative, especially when I start listing off all the things that I have come up with.

What has struck me over the past few days is how OUT of control this whole situation is. I mean, I can rest, hydrate, take my meds...but this baby still tries to be born. And ultimately it is out of my control. When I first found out that I was pregnant, I rejoiced in the fact that I could make sure that I did EVERYTHING right. I made sure that I was taking all the vitamins that I was supposed to take, that I was eating the things I was supposed to eat (or rather, not eating the things I wasn't supposed to eat), that I was doing nothing that would make me look back on this pregnancy and wonder if there was something else I could have done to ensure that this child would....well, frankly....be NORMAL.

Because I am still, on rare occasions, plagued by a sense of guilt that my boys' autism was something that I inflicted upon them by just not being careful enough, watching enough, talking enough, not following the rules enough in pregnancy... And while I don't believe that about ANY OTHER PARENT, Satan still places it on my heart and mind with my own.

So in a way, this bed rest has been a big reminder from my one true God, the Creator of all, that I never was in control of the design of my children, that they are WONDERFULLY made, and that He is the ultimate mapmaker for their lives. I can plan whatever I want to, but ultimately His plan for my life and the life of my children is the one I am going to live out. And knowing that He is faithful, loving, a help in time of need, and my Ultimate provider, I will shout praise for this time of rest, and for the protection He has laid over me and my precious baby boy thus far. And what my little guy ultimately turns out like is no less than God's perfect plan...and that is beyond good enough for me.

Friday, October 7, 2011

No, I wouldn't.

As so often happens in life, I have been asked an unusual question more than one time in the same week. When this happens, I thank God for the opportunity to reflect and answer. And today, I thank God for the journey He has brought me through to my answer.

It started with a fourth grade class I had. Right after their class has me, I have my autism program class. Usually I make sure that my fourth graders leave right on time so that my autism class doesn't have to wait in the hallway for very long. This particular day, I had lost track of time and asked that my fourth graders line up as quickly and quietly as possible so that my next class did not have to wait much longer.

The sounds coming from the hallway at this point are typical of my autism class. You could hear shrieks, "EEE--eeeeee!", scrapes against the wall, all normal for this class for whom the idea of "waiting quietly in hallway" was a laughable thought. At this, one of my fourth graders said, "Oh, is that the....I don't want to be rude....is that the..."

I helped them out by saying, "That's my kids with autism class. Although not all of the kids with autism in our school are in that class."

For some reason I felt compelled to add "If my sons were at this school, they would probably be in that class. They both have autism."

One of my other students, who I'm sure was trying to be sympathetic, immediately chimed in, "Oh, that's sad....."

I took in what she said, and the sad expressions of her fellow classmates, and said "You know, it's actually not too sad. I love my boys. They don't know how to be hurtful towards other kids. They don't know how to lie. They are very loving towards each other...I wouldn't change them even if I could. The kids out in the hallway have very beautiful sides to their personalities."

With that, I dismissed them, and they very quietly got in line and I opened the door. As we passed by my next class, I could see my fourth grade students trying very hard to smile at them, even though catching my autism classes' eyes is sometimes an impossible task. For that moment, I was very proud of my fourth graders, and very glad to be having my autism class next. No, I wouldn't change them.

I've been asked this week (again) what the chances of this next son (due at Christmas) having autism are. With his brothers both having it, the most recent study has given him a 1 in 3 chance of developing autism. The natural followup for this stat is "Does that scare you? What are you going to do if he has autism?"

When I take the time to reflect, I see my boys as they are and see (gratefully) that they are beautiful, extraordinary little boys who have blessed my life beyond measure. I think I take each milestone they reach with more gratitude and pride than I would if there was complete certainty that they would indeed reach them.

I think about Andrew's huge capacity for compassion and empathy, and see how saddened he is by the hurts of others, and know that in watching him live I have become more compassionate and empathetic.

I see Jeffrey's big brown eyes light up as they watch a new discovery, or twinkle as he laughs hysterically at a goofy scene, and I know that in watching him I am rediscovering what it means to enjoy the new adventures in life.

I see my daughter taking on her role as a big sister to these two special boys in a selfless and understanding way and know that it would probably not be to this extreme if her brothers were both "normal."

And I see my husband, who is so wonderful with my boys and helping them in the midst of meltdowns and struggles, and praise God that he is here to help me on this journey.

So the self-reflective question that comes as I daily face the diagnosis that has been laid at my door in my children twice so far..."Would I change them from having autism if I could?"

And to my surprise and delight, I am happily able to now say "No, I wouldn't."

Monday, September 5, 2011

Hope for Love

Over a month ago Chris and I were given tickets to go and see a Boise Hawks baseball game. It was so much fun, and we thoroughly enjoyed both the game and the precious time in each other's company.

While we were sitting, I noticed a young man who looked to be in his early twenties. He was a good looking kid with bright red hair, and I noticed him because of the animation of his gestures as he spoke to those who was standing next to.

It took only a few seconds of watching to realize that there was something very different about this young man. Strong as he looked, his body and face would break into uncontrolled spasms while he continued to try and get his point across. He was close enough to be able to hear his voice, and his speech was noticeably affected by some sort of disorder or delay. But he kept talking, and his companions seemed to know him well enough to follow him easily. He left after a while, and at first I was simply filled with pity for this seemingly healthy young man whose body and mind was ravaged by what I assumed to be a seizure disorder.

And then, about 45 minutes later, he came back. But this time he was not alone. He was accompanied by a woman wearing a big hat and carrying a cane. At first, probably because of the cane, I assumed she was older, probably his mother. But as she drew nearer, it was evident that she too was young. A wide smile covered her young face, and she was holding onto the arm of the young man, who seemed to walk in a slightly unbalanced manner, another indication of a seizure disorder.

Was she his sister, his friend...? I'll admit that my initial curiosity probably turned into outright rudeness, but I pointed out the couple to my husband, who began to watch them as well. They were greeted warmly by the same people the young man had been talking with before, and started up another conversation. Despite the continued spontaneous jerks his body took him through, the young man kept talking, and would sometimes defer to his companion who would smile lovingly at him and press his arm. It soon became apparent...they were TOGETHER. And she absolutely adored him.

One of my greatest fears for my boys, besides a worry for their ability to be independent, is that they will never know the love of a wife. That they will never know commitment from someone who adores them simply for who they are.

And that young woman, with her big hat, cane, and wide smile, gave me great hope that love is out there for my boys as well as for the lucky guy she found who may not have the traditional charms of the modern-day knight in shining armor, but who was able to see her for more than just her disability as well as she was able to see and love him.

Tuesday, May 31, 2011

Elopement

When Andrew was first diagnosed, I was directed (by the developmental pediatrician who diagnosed him) to many different resources on autism. One of the sites was the IAN Project. During my entrance into the world of mothers of children with autism, I initially took on a frenzied search into the world of autism and studied anything about the disorder I could find. My search has not stopped...it has just slowed down a little bit.

I check up on it every once in a while, particularly when I receive notice of an article that features a struggle my family and I are having with autism. Recently, an article came to me regarding "Elopement and Wandering." "Wandering" I understood...the term "elopement" was a little strange. So I went to the actual site and checked it out.

Essentially, elopement is when a child (any child I guess, but seems particularly prevalent in children with autism) suddenly runs from an area of safety into an area of danger, and excludes those who did it at an age appropriate time (I remember Kadee Joy during the terrible twos).

Andrew struggled with elopement pretty much up until the age of four. If we were in a mall, a grocery store, our church, our house, he would suddenly run from us, usually when there was a long hallway, and would not come back on his own, regardless of how many times (or how loud) we screamed his name. The difficulty came when Chris and I were in a position where we could not simply run after him, which usually happened when I had Jeffrey in a stroller and Kadee Joy was still quite young herself. If I was lucky, I would be with someone who could stay with my other two while I ran after Andrew. If I wasn't that lucky, I would simply drag my other two with me and run after him at a slower pace. There were many times when Andrew was caught by some other well meaning adult who would scold him soundly for not listening to his mother. Other times, there was no one else to help, and all the other people there would simply watch and shake their heads at the mother who couldn't keep her brat under control.

The first dozen times it happened, I would be humiliated and had to leave wherever I was. I just couldn't handle the disapproval of those around me.

After the first dozen times, I realized that this was simply how Andrew was, and I would just have to keep working on helping him to understand that he just COULDN'T run whenever he wanted to. I don't know whether my talks did it, or if it was simple maturation, but around four, we went to the grocery store and he started to run again...I called his name and he stopped, turned around, smiled, and ran right back to me.

It has been that way in stores, malls, parks, etc...the only place it is a problem every once in a while is in parking lots, which of course is probably the most dangerous place it could happen. Today we went to Fred Meyer to do some banking and pick up a few things, including two gallons of milk. He was fine in the store, and Kadee Joy was there to keep him entertained.

I didn't have much at the end of the trip, just a bag of groceries which Kadee Joy carried, and two gallons of milk which I carried, one in each hand. Andrew had not "eloped" in quite a while, and the parking lot was not too busy, and since I didn't have the hands available we walked out together, hands to ourselves. Crossing the front of the parking lot was fine. But as soon as we got to where our van was, Andrew bolted. Kadee Joy and I both immediately called out his name, but he didn't even appear to hear us. We called again, and still no response.

By this time, families in the parking lot had stopped to stare. As I looked farther ahead, a car, about 20 feet in front of Andrew, had started to pull out. This time both Kadee Joy and I screamed his name and I dropped the milk on the asphalt and started to run. Andrew was still running, and the car was still backing out. I reached him right before it would have been too late and pulled him back. He had a smile on his face. The thought of getting hit had not (and still has not) crossed his mind. He was just going on a race towards...something. I turned him towards me and said "You DON'T run from Mommy...you could get HIT by a CAR!" He thought I was just yelling at him for no reason and pulled one of his standby movie quotes out to tell me essentially to leave him alone. I kept his hand in mine and walked him firmly to the van where I buckled him in. Then I went and got the abandoned milk cartons (which had not exploded, luckily), and loaded Kadee Joy and the groceries into the van.

Kadee Joy started crying in the car. She kept saying "Andrew, I know you didn't like that Mommy got you, but you could have DIED! You scared me to death!" Andrew, still feeling picked on, continued his movie quote rant and then requested fries (McDonald's has far too many locations).

After my heart had gone back to a regular rate, I reflected on what I could have done differently. I could have kept Andrew in the car grocery cart he loves until we got to the van, put him in, and then loaded the groceries. I could have tried to carry both gallons of milk in just one arm, and used the other one to hold onto Andrew. I could have...I could have...I could have...

The difficulty is that most of the time, he can handle staying with the family. There is no rhyme or reason to why he stays with the family sometimes and why he bolts others. I want to teach him to respond to someone calling his name, which he does so well now almost every other scenario. But it's like whatever it is he is running TO has far more pull than those he is running FROM.

And he's not alone. The study currently being done on IAN shows that it is a HUGE problem for families of children and even adults with autism. It's not an act of defiance or disobedience...it's simply part of the disorder. I don't have the time to explain that to every family who stops and stares, or to every adult who chews my boy out if they happen to catch him.

So I guess I would just like to say to everyone: If you see a child suddenly run from a safe environment to a dangerous environment, no matter how old, no matter if their parents are there or not...PLEASE take the time to stop the child, and PLEASE resist the temptation to scold, offer advice, or judge. It is very possible that you might encounter someone who dislikes your "interfering" by stopping their child, but I guarantee that most people would be grateful that you helped to keep their child from harm. I know I would.

Friday, April 1, 2011

Spring Break

I was a little apprehensive going into this Spring Break because I knew that my Mom had gone to the small town in California we lived in for eight years during her Spring Break and that my sister and her family were visiting my brother and his wife down in California for theirs...and I felt very left out. Not because I wasn't invited to get down there, but because I just couldn't...not with the new (to us) van we just got with our tax money, and the fuel pump we just replaced in our other car.

So instead, when people would ask me what I was doing for Spring Break, I would just witheringly tell them that I was staying at home. They would then inquire whether or not my kids and my husband had the same Spring Break as me...which they did, and I would reply as such. Then they would say some comforting thing like, "Oh, well that'll be nice!" I would reply something polite back, but would continue pining for a vacation I knew wasn't coming.

Silly me.

The first day of Spring Break started with coffee with my pastor's wife. This may sound odd, but in the 6 1/2 years we've been members at that church, we've never gone out to coffee, even though we are both coffee people and both of our husbands are in pastoral positions at the church. And I'd have to say that it was a WONDERFUL way to start out the week. We did talk about stuff for our upcoming Women's Retreat that she organizes and I am leading worship for this year, but mostly it was just talking. I'd been feeling very disconnected from our church, especially from the women in our church because Chris and I are primarily with the Senior High Youth. I'm not available for any of the bible studies because I work full time, and the list goes on. So it was just nice.

That same night we had a senior high overnighter. I really like spending time with our group, but "the old grey mare, she ain't what she used to be." I was exhausted after it. It took me a full three days to recover.

On Monday, I started out with a little shopping, mostly cooking ware that I've wanted since cooking out of Julia Child's cookbook. After that I came home and completed three out of the four tasks Chris had asked me to accomplish on our week off, the two main ones being the cleaning out and reorganizing of our kids rooms. They were quite the tasks but their rooms are now easy to play in, easy to keep clean, and are blessedly hygienic.

Chris and I have been able to get many great conversations in as well, which always seems to be difficult during the regular work weeks. Our marriage has been really growing lately, and I've been very, very content.

My kids LOVE being at home. Kadee Joy especially loves it. Sometimes I wonder if the amount of concentrated time she is at school is more exhausting than it should be....but either way, we only have eight more weeks and then she'll have a bigger break.

Andrew has his transition into kindergarten meeting coming up in the next couple of weeks. I was given the opportunity to go in and observe the two classrooms he was being recommended for: Moderate Extended Resource, and Severe and Profound. I really liked the Moderate Extended Resource room, even though it was not at the school he's been at for the past three years. I was SHOCKED however when I entered the Severe and Profound classroom. Most of the kids in the room were non-verbal and physically almost completely incapacitated. Both of those things are just not Andrew. Andrew would far and away being the highest child in the classroom. I believe that the teacher in the severe and profound classroom is doing amazing things...I just don't think Andrew in any possible way belongs there. So I went right over to our wonderful preschool teacher and let her know that I definitely wanted him in the other classroom. So we're excited to see what next year holds for our dear boy.

The rest of the week has been filled with laundry, laundry, laundry...and also a few more meetings with people from my church. I especially enjoyed meeting with one of our youth yesterday at Starbucks. It was so nice to be able to hear from her heart uninterrupted. I actually got to go to Starbucks TWICE yesterday, so obviously it was a good day.

Well, Jeffrey has patiently(?) been waiting for a turn on the computer so that he can do his multiplication numbers and learn about decomposition, so I should probably wrap up. It has been a very refreshing Spring Break, too short of course, and although I do love my job, this break has made me much more excited for the summer that will come sooner that I expect. May you find rest and peace as well.

Saturday, January 8, 2011

A Saturday morning in the life of autism

Jeffrey comes in. He's usually the first to wake up on Saturday mornings. He brings with him his little magna-doodle board. He doesn't really mind that I'm trying to sleep...in fact, even if I tell him that I'm trying to sleep, he doesn't seem to understand. In typical, three year old fashion, the world revolves around him.

In atypical three year old fashion, he begins writing the letters of the alphabet, both uppercase and lower case. If any of the letters are not perfectly connected, he screams, erases the board, and tries again. Usually he is in a very good mood when he first wakes up, though, and these days he rarely makes mistakes in his handwriting. He announces each letter to me as he writes them. If I ask him for he kiss, he obediently pushes his forehead towards me. Jeffy has never, ever given me a kiss with his lips. He will only allow people to kiss him.

Andrew usually comes in next. "Hi, Mommy!" He shouts. He didn't call me "mama" until after he was diagnosed. I still smile whenever he calls me Mommy, remembering the days when I didn't think he ever would. He also calls out, "Hi Jeffy!" Jeffy is his best friend. Jeffy is also his boss. I'm not sure when this changed, but Jeffy the three year old definitely rules the roost over Andrew the five year old. Andrew quickly jumps onto the bed, and starts planting kisses all over my face. He can't give or get enough of them. "Hi Daddy!" he calls, which Chris kindly returns with a "Hi, bud!" and then rolls over to go back to sleep.

Jeffy replies a brief "Hi" to Andrew, but then turns quickly to me and says, "Letters?" "Letters" is code for a computer program on line, starfall.com, and Jeffy is obsessed with it. Jeffy would spend all day on it if allowed to. He became proficient in actually using the mouse on our computer a few weeks ago, and can now navigate back and forth throughout the program. He's way past the part that goes through letter sounds and matching games. He now goes to the math games and the more complicated reading games. Andrew will request specific games every once in a while, which Jeffy will usually oblige him with unless he has fixated on something else. Andrew is very easy going, though, and doesn't mind if Jeffy chooses to do something else. I tell both boys that they can't play yet, because they have to eat breakfast. This is met by a scream from Jeffy, and a mimicked scream from Andrew. Chris was up late with Kadee Joy, so I get up with my boys.

Both boys are not yet potty trained. They are both capable of going potty on the toilet, but still incapable of communicating when they have to go, or even if they have already gone. A more perseverant mother might have Andrew potty trained...I don't yet. So the first thing I do each morning is change their diapers. If one of them happens to be dry, I have them go on the toilet. Most mornings they are wet though. This is not a part of parenting I thought I would still be dealing with at the ages they are...but then again, a lot of things are different.

After changing diapers, I make breakfast. Most of the time, it's scrambled eggs. Andrew has never been able to eat cereal, even as a baby. His oral sensitivity is such that the crunchiness of the cereal is painful to him. He just recently started to eat tortilla chips if we have them with tacos. Andrew will run to the refrigerator, get out the eggs, and set them on the counter. Then he pulls out the pan and sets it on the stove. He also gets out the glass measuring pitcher that I use for the eggs, and then runs to the drawer to get a whisk. He helps crack an egg or two, and then rubs the whisk in the eggs back and forth between his hands. "Good job, Mommy!" he says, as I finish whipping the eggs. "Thanks Andrew" I reply, and then finish preparing the eggs.

Jeffy likes cereal pretty well, but we're still trying to bulk him up. He only weighs 26 pounds. He doesn't help make the eggs, although he loves to watch the process.

Both boys sit down at the table after I ask them to in a sing-song voice. They scoop their eggs into the mouths carefully with their forks. Sometimes, when Andrew gets full, he tries to sneak some to his other best friend, our dog Abby. I try to catch him, but think that Abby probably gets more human food than she should from her benefactor.

After breakfast comes "Letters." Jeffy, as I said, is the navigator of the computer. He's recently found a section of starfall that talks about the pairing of vowels, and how "when two vowels go a'walking, the first one does the talking." When the images of a maid cleaning and a team running show up, the boys roll in hysterics. Every time. Many times over. It is hilarious to watch and listen to.

Andrew loses interest long before Jeffy does. He'll usually play with Abby for a little bit, or else pull out his dinosaurs. His dinosaurs make sense to him. He'll move their heads as he moves his head, and then make roaring sounds as he imagines a dinosaur would. This, I have been told, is an unusual move for a child with autism. Imagination can be very difficult to understand or display, but Andrew does so easily.

Jeffy will eventually be forced off of the computer, and will cry. He'll get over it quickly enough once he finds something else, always something else with letters. Lately he has taken to writing his name, which is the cutest thing. I imagine reading and writing other words are not too far off. He sometimes requests, "Numbers?" which is code for a connect the dots game. He enjoys this game, although not as much as "Letters."

Conversations with my Andrew still are simply movie quotes or repeated phrases. If he wants something, he painstakingly says what he wants in the form of the question, "You want...?" and then answers himself "I want...!" Jeffy is more difficult to read. He just whines or cries until I properly guess what he wants. Then he repeats it. If you press the issue, he will repeat the correct phrase one word at a time.

The two boys as playmates are a joy to watch. Sometimes they will act out scenes from their favorite movies, or sometimes (like today), they will race each other. Jeffy developed very late in the area of mobility, so it is wonderful to see him running back and forth, even if his gait is still a little odd. Andrew runs back and forth laughing, and every once in a while shouts, "Come on, Jeppy!" Giggling, they continue on. Then, inevitably, they will both ask for juice.

After about an hour of playtime, I have them get dressed. Jeffy still has to be helped in every article of clothing. I still wonder sometimes if the inflammation that registered so high in his blood work is still bothering him, as he is so sensitive to any pressure placed on his feet or head.

Andrew can dress himself, but has to be prompted. He recently mastered putting his own shoes and socks on, a task that still earns a proud smile whenever he finishes it. As a toddler, he hated putting clothes on and preferred to run around in just a diaper. Now he can't stand to be without a shirt for more than a few seconds.

After getting dressed, in good weather they would play outside. As it is, with our below freezing temperatures, it's just more indoor stuff. This morning Andrew requests, "We Wish You a Merry Christmas?" It's a Disney movie that I doubt ever made it in the theatres, but the boys love it. The beginning scene shows Donald Duck's nephews racing down the stairs, and the boys are hysterical for the first 10 minutes of the movie. The companionably share the same chair while they watch, and Andrew is always looking at Jeffy and Chris and I to see if we find it as funny as he does. The boys last about half an hour into the movie, and then leave to find other ventures around the house.

Normally Kadee Joy would be a major part of this story, but she was very sick today with an ear infection. A more patient big sister you will not find. Every once in a while, she will unwittingly give them therapy by interjecting an interruption into their routine, which forces them to figure out how to communicate what they want. Today she laid low and slept often, despite the disruptions her brothers sometime provided by crawling over the top of her while she slept.

Such is a typical morning with my boys. I recently spent a long weekend with my nephews, neither of whom have autism, as well as a night with the sons of a friend of mine at work. I was struck by the differences in both sets of boys from my own, and realized that mine are much, much easier than "normal" boys their age, and yet much, much more needy than "normal" boys their age. What I appreciated about both these experiences were the wonderful qualities I saw brought out of all of the boys when faced with the varying differences of their newly reacquainted playmates. And I had hope for those that my boys would meet in the future as well, knowing that they have brought out in me better qualities than I had before knowing them, and that they can and will do the same for others.

On Being Sexually Assaulted While Having a Seizure, Reporting It, and the Aftermath

I never thought it would happen to me. I certainly never thought it would happen at work. When it happened, I reported it.  Immediately. The...