Thursday, August 27, 2009

Surgery? Toe Walking Continues.....

MJ has been walking on the tips of toes since he was almost 3 years old. We had been in physical therapy when he was 3 but it got expensive and it wasn't doing too much. His new pediatrician said wait and do nothing, then just do surgery when they are about 6 or 7. That seemed odd that there could be no preventatives, so we went to see an Orthopedic Specialist when he was 5.

This doctor recommended putting him in casts for the summer. He bent his feet in 90 degree angles then casted them to stretch them out.

Did this work? No, it maybe kept his tendons from getting any shorter, but it did not make any difference to the way he walked. He was right back up on his toes soon afterward if not almost immediately.

So, we've kind of been back and forth about his whole toe walking thing. Why torment a kid all his life with "PUT YOUR FEET DOWN!"? I got tired of it, and it made MJ have ill feelings toward many of our friends and family.

I asked doctors and specialists every chance I got and no one gave me a real need to take action. I figured maybe some day he would learn to walk down, or if he didn't then oh well, it was his own weird thing. I had seen a lot of other kids with autism do the same thing. He was my kid and I loved him.

Recently a little girl in our neighborhood, 5 years old, was going to have surgery. When I asked her parents what for I was surprised that it was because of toe walking. I had never really noticed this little girl, but her parents said she had been walking on her toes for so long that they wanted to take action.

They took her up to the childrens specialty hospital here and saw an Orthopedic Specialist (well, I believe it was one of their nurse practitioners) that told her if she didn't do surgery on her daughter that she would have back problems and other drastic problems as she got older. Now I have always wondered this possibility, but no doctor has ever confirmed these worries. They told me they were going to do this heel chord surgery where she would have her tendons cut then be casted for 4 weeks, then get them off. It was supposed to fix the problem.

Well, I still think, yeah, what's going to change such an awful habit? So what if you get your heel chords cut, what's going to stop the kid if he's always done it? But anyway, I was interested, and so we made an appointment to go see these specialists at the childrens hospital to see what they thought.

First things first, no one has really believed me on the intensity of MJ's toe walking. Whenever I have asked doctors to look, MJ is aware and he forces himself down on his feet to defeat the whole purpose. I sit there and look like some crazy parent who is trying to make up things wrong with my kid.

Well, this time I was lucky I guess and they actually saw his real toe walking patterns and they examined him and offered surgery right off. I'm not going to throw my kid into any surgery, so I asked many many questions.

They told me there wasn't really any problems with a kid who toe walks, that it's not going to cause them joint or bone issues or hurt their back, etc. (Now how come they told the opposite to the other girl's parents?) And interestingly enough, they said a kid with Asperger's will probably NEVER outgrow toe walking because an Aspie kid just doesn't really care. While other kids will be teased and pointed at, they will learn to walk down because of peer pressure. An Aspie kid is usually oblivious to the teasing, or just doesn't care enough to make the change.

They said MJ wasn't so bad, but they could do the surgery or not. This really wasn't too helpful. I wanted someone to tell me "this needs to be done" or "no, don't do it" and this surgeon was telling me neither. She sat there and sad it wasn't urgent and so we could think about it for years to come, but she saw the need enough that she could do it if we wanted to. SO weird! Isn't that why I go to these specialists so they can help me know what to do? How am I supposed to make that kind of a decision? I was concerned with doing surgery, but then at the same time concerned what would happen not doing it. The doctor said he wouldn't have any problems with toe walking but as his heel chords become tighter it may "hinder" him as he gets older and not allow him to put his feet down at all. Hmmm.....??? She said if he needs to be down playing sports, etc, that he may have problems.

Now, of course MJ hates all sports, but he does love to dance. He takes ballet and tap. The whole reason he takes tap is so I could get him to put those heels down! I haven't seen a big issue with him not being able to put his feet down when he dances, but there are a lot of times when he probably does look a little more awkward while dancing because of it. I want him to be able to dance if he wants, but is this whole toe walking thing going to mess that up?

I waited, and told the doctor I would think about it and she pretty much gave me the impression of whatever it didn't matter either way to her. I decided to go home and see what happened with the neighbor girl. Doesn't that sound bad? Like she's the guinea pig or something? I didn't mean that badly, just we thought we could see her experience.

Well, the little girl did surgery just fine and had 2 pretty pink casts on for a month. They were walking casts so they didn't slow her down any. We waited for the time to take them off. The week after she got them off we saw her at church and she was walking very oddly. One foot was twisted sideways and dragging while the other one pointed up in a strange way. I felt kind of bad for her and realized I didn't think about asking the doctor about what happens after surgery and recovery time.

I watched her for the next couple of weeks and she was getting better but still a little awkward. True, she wasn't walking on her toes anymore, but could she even get up on her toes? I asked her mom this later wanting to know if she could get up if she wanted to. I was concerned because it would be great to have MJ walk flat, but at the same time, if ballet is important to him, he needs to be able to get up on his toes too.

The mom told me she had tried to show her how she could get up on her toes but that she was clinging to the counter and bending her knees out to do it. Hmmm. This didn't sound good.

I'm sure this was all good for the little girl, and actually now 2 months later I see her walking great, but I worry about the whole after surgery thing. I guess the surgery cuts the tendon and so all muscles around it must be built up again and it will probably take a while before they are strong enough to support being on your toes. This is OK, but how do I schedule this in on a dancer?

We could do the surgery then hope he recovers and builds muscle during the summer in time for next fall's dance classes? Or do it in the middle of the year and throw him off? Or......

OK, you're thinking, this is dumb and it's just dance and your son is more important, but who's to say what will happen? I mean, what if he can never get back on his toes after surgery? He doesn't like any other extra curricular activities. He'll have his only thing taken away.

We decided we'll give it one more year. This year he has been waiting since he started ballet do try out for the fancy downtown city's Nutcracker. He will audition in a couple of weeks. Let him do that, have some fun if he makes it, then maybe this next summer we can do surgery. We'd rather not do any surgery, so we are implementing a plan of ankle stretching.

Every day we make him go for a walk around the neighborhood and he must have his heels down the whole way. At school we've told the teachers and principal to cue him when they see him up and to have him agree before walking laps that he must keep his feet down before walking.

We want to see if we can prevent surgery and not have to go through all these worries of when, how, what if???? Plus, poor MJ has enough issues as an Aspie let alone to be in 2 awkward casts for a while to add to it.

Of course we still love our son no matter what, and wonder what's to fix it in the end if he does do surgery. I'm not going to go on a path of doing surgery every 3 years like the doctor told me some kids do who have cerebral palsy or MS that shorten their tendons. Hmmmm.....we've got to break this habit. We hope we can. This year will be the test.

Wednesday, August 19, 2009

Asperger's in the Office

Here we are. See my cute husband? It's been an interesting road with him and Asperger's. Many days I'm grateful to it for allowing me to have a better understanding of him and my son. Many days also I am frustrated and annoyed by it.

I don't use it as an excuse and I don't think he does either, but there does come with it many challenges. One in particular we have come across recently is with him and his job.

He has a good job. He does computer stuff. He is a GIS analyst/web developer for an engineer firm. He's pretty smart. He does a good job. He is lucky and unlucky at the same time. His job requires a lot of deadlines which can be stressful, but for an Aspie who can get distracted or want to do something too perfect, it allows him to manage his time by force almost and get things accomplished on task.

We are grateful for his job and that he has been able to get out there and have a working relationship with others despite his social awkwardness at times.

Recently we have found it has it's setbacks.

These past few months he has had a chance to where he could possibly move into his own office at his job. Nothing big and fancy, but it would be a step up and I think he deserves it. Now, he hasn't been with the company too long, but they did make him a team leader and some of the other team leaders have their own office. I think it would be great for him to have his own office to help fend off all those distractions that he gets all day. He could shut the door and get more work done. It would be great!

So we all kept our hopes up and waited for the big bosses to make the decision. His direct boss thought he should have it, but it had to go through the main boss. In the end this is what happened:

His direct boss called him into his office and told him the bad news. He would not be getting an office yet because he just didn't seem like management yet. He didn't portray himself well enough and look like a leader. He didn't look people in the eye enough. He didn't talk enough in meetings or sound sure enough of himself. He wasn't outgoing enough or hadn't spoken up enough to the other leaders so that he could look like he was in a leadership position. He was doing a good job, and he was great and people liked him, but because of all these reasons explained, an office was yet for him.

When he told me all this it seemed like someone saying, "Nope, you don't get an office because basically you have Asperger's!"

I mean, really, everything that was being described about him was that which directly related to him having Asperger's! Now, of course he has never been officially diagnosed, although a group of doctors gave him an unofficial diagnosis themselves off the record, and he has never brought the subject up at work as to not be treated weirdly. But now, being that it has directly affected him at work, we wonder should he bring it up? And if so, should he really go out there and get an official diagnosis?

I don't know if I'm all for the go out and get a doctor to put in writing that he has Asperger's. What would the point be? He doesn't need to be medicated and he doesn't need counseling or what not. We don't have the time and money to be going out to doctors for something we already know is probably the truth.

And, what good would telling his work? I know he is happy to know he is an Aspie at times because it helps explain things in his own life and helps him realize there isn't something wrong with him but just he thinks and processes things differently.

So, for now, we laugh and he goes to work and "acts like he is important". Now don't get me wrong. He is important, and he is a leader, and he is smart, but he must physically and mentally force himself to act more outgoing. It doesn't come natural to him, and he doesn't feel it is something he even understands sometime, but he goes and tries his hardest. Look at those people a little more in the eye. Speak up more. Process more quickly and talk faster even though mentally I know that is frustrating because he hates to open his mouth until he has everything formulated perfectly in his head how he will speak it. Use more confidence in your voice. Look like a leader!

We will see what happens, but for now, I guess life isn't always fair for an Aspie, or at least maybe he can learn to be more like the norm of the world even though it might not be natural. Around our house we tell each other, "just fake it!"

Tuesday, August 11, 2009

"Do It 'Cause They Told Me To?" or "Do It 'Cause No One Told Me Not To"

So, I know kids with Asperger's are often picked on or made fun of, but I always have to wake myself up a little more when problems arise at school.

A big problem for MJ is that kids will tell him to do things at school, which aren't the smartest, and he'll just do them without thinking twice.

One day I got a note home from his teacher explaining that MJ had gotten into a lot of trouble during lunchtime. Apparently, MJ had been chosen to help with the lunch staff, and he was supposed to be wiping off tables with a rag along with another student. The other student comes up to MJ and says, "Squeeze the rag over my head and get me wet." And so MJ does it, and then the kitchen staff sees him and he gets into a lot of trouble.

I ask MJ about this, and he seems confused that he would get in trouble since the other kid told him to do it. I asked my husband this also, and was enlightened that he wouldn't think either, he would just do as instructed. (Well, not now, but when he was in school.)

I added this to another problem that we've discovered. Although they take everything literal and don't understand the underlying meaning if not spoken to directly, it seems they also don't understand when someone says to do something directly, that it shouldn't always be taken literally and followed. (How confusing, right? I mean, I'm not an Aspie, and it seems confusing to me!)

So how do I explain to them what to do? Obviously they have learned through experience. My husband is not going to drip a rag on someone's head now, although he says he would have acted the same way years ago. My husband learned after much error that you shouldn't always do what your peers tell you to do.

I explain to MJ that just because someone tells you to do something, that you don't always have to do it. Especially if it is not an adult and if it is not a good thing. Now I, myself sit here and think, well, gee, of course we shouldn't be dripping rags on people's heads, but MJ doesn't understand all these social rules and reason. I mean, why not? Why should it matter?

As my husband explains to me that the way they think it is different. Like why not say this or that or act in this certain way? I am always reminded by it when MJ comes out with a striped shirt and camo pants that are way off together and I try to explain to him why he can't wear that. Aspies don't see reason for social norms or rules. It seems dumb to them almost.

When I've gone to people's homes or different places I have an awful time with MJ going through their houses or a business in different rooms uninvited or areas where he shouldn't be, and he doesn't understand why that is bad. When we are at a doctor's office, my own husband is opening every cupboard and going through every drawer like it is just natural and fine to do whatever out of curiosity's sake. Drives me nuts!!!

I've had to sit down with MJ and tell him that he needs to think of the world as a "Don't Touch, Do Not Enter unless told to do so or invited" place. He doesn't understand why it should matter, (back to the whole not understanding ways of the world and nonspoken social rules) but I just tell him he needs to do this. Don't go in people's bedrooms when we go over to see someone and we're sitting in the living room. Don't go behind the storage area of stores. Just don't. Don't touch anything unless you are told you can do so!

This is frustrating, but the other is more worrisome. The whole "Do it 'cause they told me to" thing bothers me. I guess I need to sit here and think of every little scenario and tell MJ that this or that is bad and to never do it if someone tells him to, but I can't think of everything! I suppose my greatest responsibility will come to talk about drugs, sex, violence, stealing, etc, but all these little things we'll just have to learn as we go.

This is the difference in an Aspie that I see almost the greatest. I think it is just common sense that you should do this or that, or not stick your nose into other people's places or business, or not do stupid things if someone suggests it. To an Aspie, they don't see why a lot of things would be stupid, or not, or wrong, or weird, or socially wrong. It's just another day and another experience. Most of us can just learn the social know-how as we grow and mature, but an Aspie never quite picks up on it without a little bit extra of instruction, or learning by mistake, or as my husband tells me, there are hundreds of things he doesn't even realize that he shouldn't be doing according to the "social norm".

Again I always fall back to what is the reasoning for this "social norm" anyway? I mean, so what if we wear mismatching clothes or say what's on our mind or do stupid things sometimes? It does add some variety and spice in life. But yes, I guess it isn't always taken with such appreciation.