August 23, 2008

Living With Autism

It's already been an interesting morning. The kids started out this morning watching cartoons. The last show they watched ended with the bad guys getting away with some crystal while the good guys let them go. This was apparently more than Bubba could handle. He's my Autistic one. He was so upset by this. He actually started to cry because now the bad guys were going to rule the world. Yes, he understands that it's just a show and not real. But this really went against what he thought was right and he was so traumatized. It took probably 20 minutes for me to find something that finally got him distracted enough to calm down. IT'S JUST A TV SHOW!!! But this is the sort of thing that goes on daily in our house.

Today was probably a little worse because we've had a lot of down time lately, lots of unscheduled free time and not enough scheduled activities. That makes meltdowns come on a lot easier and with more frequency.


Bubba wasn't born with Autism. He developed just fine, right at age level until around 15 months. I can't pinpoint a certain day or moment when things changed. It was a very subtle, gradual thing. It just slowly crept up on us. One day I started noticing that he didn't talk as much as he used to. He didn't have a lot of words at this point, but he could say "mama", "dada" and ask for more food at least.


We moved to TX in January of 2002. I had to leave him with a friend of mine one day and while I was gone he cried the whole time. When I went to pick him up, he reached out for me and said, "Mama, mama". I will never forget this. I remember being so excited because I couldn't remember the last time he had said that. Now, it wasn't like I had been worrying about why my son wasn't talking. It's just at that very moment I realized he hadn't been saying it.


The hard thing about seeing delays in your child is that your first thought is never that there might be a problem. You can always find a reason for everything. It's not denial and justification to avoid the truth. When you look at your child, your sweet, beautiful, perfect child, it just never occurs to you that there could be anything wrong. When he wasn't talking or pointing, we figured it was because we all jumped anytime he so much as grunted. He also had a big brother to do everything for him. When he couldn't figure out how to use a spoon, I chalked it up to him never being allowed to use one. When he would sit and line up cars for hours and just watch the wheels turn, I thought he had a great attention span. When he was behind all the other kids in bible class and didn't even try to imitate the teacher, we just assumed it was because he hadn't spent much time in bible class in WA before we moved. What finally tipped the scales for us was when we thought he had a hearing problem.


You have to understand, my son is now almost 8. At the time, public knowledge about Autism hadn't exploded yet. The extent of most people's knowledge about Autism was limited to "Rain Man" and some movie with Bruce Willis. The Autistic people in these movies were either non-verbal or used "echolalia"-they just regurgitated alot of what they heard, especially from TV or movies. They were very anti-social, and not affectionate. This definitely did not fit Bubba. He loved to be held and snuggled and to give kisses. His motor skills were great; he loved to run and play and wrestle. At this point, Autism was not a word that was in my vocabulary.


Back to his supposed "hearing" problem. We never thought he was deaf. We knew he could understand some things. But you could yell right into in his ear and he wouldn't even flinch. Or you could whisper his name from across the room and he'd look at you. There was no rhyme or reason. We knew things were definitely going in but we weren't sure if anything was coming out. Luckily, just about every female in TX is a teacher and when I was speaking to a friend about Bubba, she mentioned that I could have him tested for free through the school district. So we set up a hearing test. Everything turned out to be fine. So the next step was to have a team of therapists come to our house to evaluate him. Before they left our house that afternoon they told me that even though no doctor would give an official diagnosis until Bubba was 3 (a practice that has thankfully changed), they believed him to be on the Autism spectrum.


I'm not sure I can put into words what all goes through your mind when you hear that. There was some disbelief. After all, my son didn't fit that profile that I had in my head. Relief because if you can identify what you're dealing with then maybe you can do something about it. What I didn't fully accept was sadness, or "mourning" as I call it (that came later). It was just acceptance and "now what?"


I haven't fully explained what all we were dealing with at this point. It wasn't just that he was speech delayed and we thought he was hearing impaired. I couldn't really take him anywhere or leave him with anyone. He would throw these screaming temper tantrums and he would spend an hour hitting his head on the ceramic tile in our entry way. You couldn't console him. He had no ability to communicate. He couldn't talk, he didn't point and he knew hardly any sign language. If he was wanting something, it was an absolute guess as to what it could be. At least with a new baby, you eventually learn their different cries and what they each mean. With Bubba, it was a constant scream.


A lot of Autistic children tend to be hypersensitive to things-noise, touch, textures, light. But Bubba was actually the opposite; he was hyposensitive. He needed lots of deep pressure hugs, didn't care if sand was in his eyes, mouth or diaper. He never seemed to feel pain. I remember walking to our car one day and when I put him in his carseat, his knee was all bloody. Apparently he had fallen on the sidewalk and never even fussed. There was no concept of danger. He didn't comprehend that he couldn't just walk off the end of the bed or a stool or the sidewalk.


He was also a runner. He would take off running and the only way to get him back was to chase him down. He would not come back to you if you called him. This would have been hard enough but I also had his brother who is only 20 months older. Baby locks and those doorknob covers never even slowed him down.
Somewhere along the line, he also stopped sleeping. His body didn't have a natural cycle that we take for granted. You know, it's getting late and your body starts to get tired and it tells you it's time to go to bed. He didn't have that. It would take hours of wrestling with him before he would finally fall asleep from exhaustion. And if something were to wake him up at say 3:00 in the morning, he was up for the rest of the day. And if he was up, Mommy had to be up.


There were so many days that I went to bed crying. Sometimes it seemed the only thing that kept me going would be one hug from Bubba or one of his gross, slobbery kisses.


Over the years, I've had many discussions with God about this. "Why Bubba? Why me? What were you thinking?!" I'm always amused by the comments from other people. I'm sure they mean it or are at least trying to comfort me. But someone always says, "God only gives a child like this to someone special." No offense to all you sincere people who have said this but it makes me want to laugh. There is nothing about me that makes me anymore capable of handling this than you. The only reason I'm able to deal with everything that Bubba can throw at me is that he is MY son. If he was yours, you'd find a way to deal with it, too. You wouldn't have a choice. You love your children. If Bubba was yours, you'd find a way to deal with the biting, kicking, screaming fits, sleepless nights, comments and stares from others, the frustration and feelings of helplessness, depression, guilt, sadness. You, too, would read everything you can find about Autism until you find yourself educating your pediatrician. You would give up social events for a few years until you knew that you could be gone for more than an hour without a babysitter calling you to come back home. Whatever it took, you would do it.


I don't believe that God chose me to be Bubba's mother because I was some great person who could handle all this gracefully or even better than others. However, I do believe that in dealing with his Autism, I am becoming a better person and a better mother. I have more patience than I would have ever thought possible. Every accomplishment is cause for celebration. I am alot more aware of the little things that go on because, for a long time, the little things were all I had. If I hadn't gone through all this with Bubba, I wouldn't have recognized similar sensory issues in his brother, Howdy.


When you speak to someone who is dealing with a disability or even some kind of tragedy what you hear so many times is, "It's not the way I planned it, but now I wouldn't have it any other way." It's true that it's not the way I would've planned it. But I have to tell you, in all honesty, I would have it another way. I know that God is accomplishing great things through us and our journey and our dealings with other people because of Bubba's Autism. But if I had a choice, even now when he's almost 8 and doing unbelievably well and better than our highest hopes, I would still choose not to deal with Autism. I've never heard anyone say that and I've only ever told my husband. I often wonder if there are other moms who feel the same way. I feel no guilt in saying it, it's the truth. Instead of being praised for "rising to this challenge" that God has given me or being thought of as someone "especially chosen" for this task, I would prefer to be the mother of a "typical" kid. But God has other plans for me and I believe He chooses better than I ever could. I often send up a prayer of bewilderment at His decisions but it is His decision nonetheless. I love my son and will spend my life making sure he grows up to be everything that God wants him to be.

August 2, 2008

My Latest Revelation

My favorite show is Jon & Kate plus 8. This is a show about a couple who had a set of twin girls (in-vitro) and then decided to have one more. Instead of one they ended up with 6 more. I'm always in awe of how well they run their house. I realize that they have help with things but with that many kids, it's very well managed. I just think, "If they can do it with 8 kids, surely I can do it with 3." So I became inspired to take back control of my house (with varying degrees of success).
We are a family of picky eaters. Most people would say my husband is pretty picky. I'm way pickier than he is but our kids have us beat. I hate dinner to begin with and I got tired of fighting with them over food so I've been cooking 2 meals for dinner for years. Then I got smart (ha, ha). I told them that if they didn't like what we were having then they could make their own food. That sounds great but what happens when they're eating someplace else and they don't have that option? So I realized that I had to draw the line. I made up a blank 5 week calendar and filled it in with a dinner menu for each night. Mondays are breakfast--either pancakes or french toast (something all 5 of us will actually eat). Wednesdays are either spaghetti or tomato soup, Thursdays are chicken of some sort. The rest of the days I just filled in with things I know I can cook. I left Fridays open--that's "make whatever you want" night. And we do. The younger 2 sometimes need some help but at 5 and 7 years old they are learning to cook for themselves. I put the menu up on the fridge where everyone can see it. Now the kids come in and look each day to find out what we're having for dinner. Sometimes they cheer, other times they moan and groan. I just tell them, "Sorry. That's what's on the menu so that's what we have to have." They still may not like it, but they aren't getting mad at me. When it comes time to sit at the table, we have a couple of rules.

1. You have to eat at least one bite of everything on your plate to have seconds of the "good stuff" or to have dessert.
2. You may choose to not eat your dinner, but you will get no other food until breakfast.
3. If you choose not to eat, you still have to sit at the table with us while we eat.

I try to always have some kind of bread or fruit or something that I know they like on their plates so they have something they can eat. It's amazing how much this has cut down on the yelling and nagging and arguing. They have also been learning "You get what you get and you don't throw a fit." This is what you've got, deal with it.
I've also added to their chores. We have a weekly chore chart that rotates. Each week my children are in charge of collecting up all the dirty laundry from their baskets and bedrooms and sorting it into the laundry baskets downstairs, feeding and watering the dogs and putting away the massive pile of books that collect in their rooms. I also have one of them as my laundry assistant to help me keep the loads going, fold laundry and put away linens and things. Someone else is my meal assistant and is there to help me get meals together. Someone else is my assistant with dishes and unloads the dishwasher or helps me wash the pots and pans. I'm not the only one who lives here, why should I have to clean up after everyone else? They are rewarded for all the work they do around the house and for the most part they do it without complaint. Except, of course, for Bubba who has to complain about everything.
In taking back control of my house, I also decided to try homeschooling again. That doesn't sound right. I've committed to homeschooling my 3 kids. I'm convinced that this is the best way to teach my children and be able to instill values in them that they won't learn at a "real" school. The problem I've always had is I just don't think I'm cut out for it. I may not be, but I know it's the best thing to do so I will find a way to do it successfully. I've been putting us on a schedule and planning activities for the kids. I've started now because I need that schedule to be a part of our every day living. I definitely leave room for flexibility in there but as long as it's posted, who can argue with the schedule?
I realized the only thing stopping me from running a "tighter ship" as I like to call it, was me. All I had to do to get these things going was to get my lazy butt up and do it. I know it sounds pretty obvious but it was seriously like a light bulb came on in my brain. If I can find the time to sit and read a couple of books a week, or spend 5 days doing a scrapbook, I can find a way to take care of my house and my family. I feel like God has been whispering in my ear. It's just a matter of getting my focus and my priorities straight. Other things can wait. My job right now is to nurture my children, to give them a stable home with good meals and a supportive family. My job is to create a haven for them where they are able to learn and grow and be themselves. I need to be here to mold them and guide them. That is not a job that I want to hand off to anyone else.

Confession...I'm Getting Old

I am a 30-something mother of 3 and yet I found myself standing in line at 11:30pm last night waiting for....a book. But this is not just any book. This is the final book in one of the most popular book series ever. Seriously. I was waiting for "Breaking Dawn", the last of the books in the Twilight series by Stephenie Meyer. If you've read the series, you understand. I discovered the books over Christmas break and couldn't put them down. When I got to the end of the 3rd book, I was so sad to leave the characters that I had to read them all over again. So when book #4 went on sale last night, I had to have it. My mom went early and reserved one for me and then at 11pm last night, I left to go stand in line with my sister. I was so excited I couldn't stand it. I HAD to know if Edward and Bella stay together. As soon as I got my copy I went right to the back page to find out. (Yes, I do that with every book.)
But as I was standing in line, I started to feel really old. Normally I don't feel that way. Most days I look around and wonder, "How can I possibly be old enough to have 3 kids and a mortgage? How can I be old enough to be married to someone who just turned 40?" But last night was different. There were plenty of other sane adults like me. But there was also a high number of very shrilly, young ladies who, honestly, just got on my nerves. They were the ones who were wearing hand-drawn t-shirts expressing their love for Edward and screaming every chance they got. A couple of them even stole the posters right out of the bookstore. You know what went through my head? "Was I really this obnoxious when I was a teenager?" Regrettably, I'm sure the answer to that would be "yes". At least it would be if you asked my mother. 

So I believe that makes me officially old. 
How sad for me. I think I've now become a grown-up.