Thursday, April 30, 2009

Awetism Awareness Month

April is Awwtism Awareness Month. Interesting how "Autism" can be spelled so many ways yet sound the same. It's fitting, since Autism presents in so many different ways. Autism Spectrum Disorders affect many people, including my son. C has High Functioning Autism. He also has ADHD (emphasis on the H). He is one of the quirkiest kids around and I love him dearly.

It wasn't always apparent to us that C was different. He was, after all, our first boy. We didn't expect him to be like his older sister. We just figured he'd be his own little self. Eventually, it became obvious that something was going on. We took him to the pediatrician, who sent us to the neurologist. The neurologist examined him thoroughly and ran some basic tests. He mentioned the possibility of autism and recommended we see a neuropsychologist for a more thorough workup. The neuropsychologist diagnosed C with a "biologically based disinhibition disorder" - in other words, ADHD. It wasn't until C was being evaluated for transition from the special needs preschool to the kindergarten that he was diagnosed with Autism. The school psychologist said he had High Functioning Autism (HFA)/Aspergers Syndrome(AS).

That's where the difficulty in understanding Autism began for us. Depending on the literature, AS and HFA are either the same or different diagnoses. The term that we've gone with is HFA because it includes speech difficulties and AS does not. C occasionally has speech problems, so HFA it is. At the time, AS had only been used as a diagnosis for 10 years. What would C have been called before then? In my childhood, he would've been the 'wild-child' or the freaky kid. More labels are available now, so we tell people he has HFA. What a relief, really - it's far easier to be the parent of a child who has Autism than one of a child who is "out of control".

There are a lot of questions we're frequently asked about Autism. Among them (and please try to remember that these are my opinions - you're entitled to your own):

Do you think it's an epidemic? No, I don't. I think there is simply more information available now that allows the diagnosis to be made.

But, there are so many more cases! See above. Also, there are higher concentrations in the high tech corridors. So many people in those fields are on the spectrum. Not all of them are diagnosed as such, but if you know the symptoms, you recognize it. If those people are having kids together, it stands to reason that some of these kids will be on the spectrum.

Do you think this is a result of vaccines? No, in most cases I don't. I think it is possible that some people are sensitive to the ingredients in vaccines and that it could cause a problem, but I don't think that it is the case for most.

Shouldn't we not get vaccinated to prevent our kids from getting Autism? No, I think that the vaccines are there to ensure the health of everyone. Sometimes, people are injured by something they come into contact with. You can't always predict it. I would no sooner ban my kids from having vaccines because they might get Autism than I would keep them from having a glass of milk because it might turn out they are allergic to it and it might kill them. Besides, I have three kids and only one with Autism. The averages are in my favor.

How has this affected your life? I think I'm more patient with people. I am more aware of different personalities and how we all interact. BUMD has mentioned that he's able to manage some employees better simply because he recognises that they are on the spectrum and he's aware of how to accommodate their quirks/needs.

Would you change things if you could? No, I don't think I would. C is an amazing little guy with a fascinating world view. He makes observations that most adults I know aren't capable of. There are little behaviors I would love to do away with, but I think I could say the same for just about anyone I've ever met (including myself).

Did you cry when he was diagnosed? No, I was too busy being fascinated by all the literature we had in front of us. I have had one good cry about it, a few years ago when I finally realized that he wasn't going to be able to do any of the things that I had dreamed for him. That moment remains one of the most liberating moments I have ever had as a parent, and possibly as a person. I had to let go of my plans and give up my expectations. C will grow up to be whoever he will be. We can teach him, love him, and influence him, but we can't make him. He just is. He will be.

So, you don't wish he was normal? Hah, no! I always tell people that I'm happy my kids aren't normal, because that's so boring. I want them to be individuals, to have quirks, to be proud of not being "one of the crowd". Sure, it's fun sometimes, but there's so much more to life than "fitting in".

What? You don't want him to fit in? Well, yes I do. We make sure the kids have basic social skills, that they are aware of popular culture and social norms, and that they have a sense of how to be a part of society. But we also spend a lot of time reminding them that every person is an individual, and that what works for one person may not work for others. In other words, Your Mileage May Vary (YMMV). Be comfortable with differences and respectful of others' beliefs. The opposite of Autism is "neurotypical". Being neurologically atypical is ok by me. Innovations are made by those who don't "fit in". If we can teach our kids to respect those who aren't like them, society will be that much better for it.

Are you neurotypical? You've made it this far and still have to ask? ;-) No, I have ADHD. I recently took an Aspie test online and scored pretty high on that. The good thing is that I'm an adult and can find my way. The hard thing is to be a kid and be quirky. I hope my kids will someday find their niche too.

There are so many benefits I reap from having an Autistic child. His emotional immaturity and lack of social awareness means that he's still ok with snuggling in public. While other 8-year-old boys are studiously avoiding their moms in public, I'm still getting smothered with hugs and kisses. Who wouldn't love that?

There are challenges too, but they're really not that much different than those faced by other parents. We have it relatively easy with C's HFA. Parents of low-functioning kids have more challenges than we do. Years ago, a friend gave me his list of rules. I still have it on my fridge and refer to it every day. Parenting a child with Autism can be challenging, but as with anything worth doing, it comes with so many rewards.

Monday, April 27, 2009

Music Monday

When I woke up Friday morning, John Mayer's No Such Thing was stuck in my head. No big surprise, really. The first time I heard the song (which was followed closely by the second, and third, and many more) was when I saw the video on VH1 in the hospital just after A was born. I had ample time to watch TV - she was in the hospital for two weeks after she was born, while they tried to figure out what was going on with her health. Friday, we were back on that track yet again.

I've begun to refer to A as our "Mystery Diagnosis" child. Really, it's kind of unfair - there are other children who fit that bill better, but she is ours. Her illnesses have never been severe, just interesting enough to pique the doctors' curiosity and warrant further diagnostic tests. It's to the point now that we've at least started laughing about it - nervous laughter, to be sure, but laughter just the same.

At some point, I should probably write it all down. Today is not that day. The good news is that Friday's appointments with the pediatric nephrologist and pediatric orthopedist only resulted in appointments for follow-ups in about six months or so. Nothing major, just another "huh?" diagnosis to add to her list of "interesting" (not "weird" - she doesn't like being referred to as "weird") conditions that she has. If "huh?" is all she ever gets, that's just fine with us. There are parents out there who are facing far greater challenges with their kids. They have our prayers.

Saturday, April 18, 2009

Silver Linings

Some days (ok, more often than not) it's the little things that bother me. Take, for instance, shopping carts. It irks me that so many people are incapable of just cleaning up after themselves and putting away their cart. Why no, I really don't enjoy trying to put away my cart after you've left yours sideways in the shopping cart return. Would it have been so hard to just push it into line with another cart? Apparently so. Don't even get me started on the fun of throwing out someone else's trash that they've left behind in the cart. Sometimes I can skip that cart, but on high volume days (think holidays) it's just not an option. All together now - eeeeewwww.

Despite my dislike for those habits, I was grateful for them today. BUMD is tackling the lawn, so I decided to take the kids grocery shopping. C was not at all enthused with the idea. I told him if this was the only thing he didn't want to do, I'd let him stay home. Given that "I don't want to" is so often his initial reaction to many activities, I told him to suck it up and behave. Usually he gets over his initial reluctance and actually has fun. Not so today. We were standing in front of Scary Teeter, trying to decide which cart to take. A wanted to ride in one of the car carts, but they'd been left haphazardly in the sun instead of in the shady spot right next to it. Full disclaimer - the kids are 20 and 26 months apart. I took them shopping together when they were little and still managed to return the cart - hence my irritation at the lazy people.

So there we were, debating the cart options, when C said that he didn't feel good. I asked him if he was going to throw up and he said yes. I reached into the suddenly perfectly parked cart, grabbed the flier that was conveniently still in it, and held it under C's face just in time to catch the vomit. I managed to get most of it, leaving the sidewalk splattered with just a tiny bit instead of a large bio hazard zone. I really didn't want to ask their staff to clean that up. Once he was done, we headed straight back home. My shopping list had also taken a hit, so there was no sense in trying to stay. C got his way after all. It was a nice day for a drive anyway, and K offered up the airline sickness bag that she keeps in her seat area for the drive home. The fact that she has one ready should tell you how often the kids get car sick. That she still has it several months after the last plane trip shows how much things have improved in that category.

I suppose I could complain that the last customer didn't leave a bag in the cart to help me catch things, but I'll just shut up about it all now. Sometimes, the things that bother you turn out to be the things that save you. It's like a sign I have: "Life is 10% how you make it, and 90% how you take it." So, so true, especially today.

Monday, April 13, 2009

Music Monday

Yesterday was Easter. It's spring, the time for renewal. Why, then, am I having so much trouble renewing my faith? I don't know how to articulate what I believe in anymore. I guess I need to concentrate on who I am instead of what I call myself.

I was baptized Catholic by parents who didn't really follow organized religion. My mother was Catholic. She went to a school run by the same nuns who had taught her mother. The nuns were young and cheerful when it was my grandmother's turn, but far less so by the time my mother was a student. I think it ruined things for her. My father was raised Episcopalian but didn't really practice. We seldom attended church. When I was 14, my sister and I started going to church with friends. After a few months of regularly attending and singing in the folk group (it was the 80s, ok?), we were ready to take the plunge. We went through RCIA classes and soon received our sacraments - First Communion for me, and both First Communion and Confirmation for her (she was about to graduate from high school). I was Confirmed a few years later.

Over the next few years, I was very involved in our parish activities. During college, my attendance was spottier. I was married in the Church by the same priest who baptized me. People who've seen our wedding album always comment about how happy Father George looked. I'm not surprised - it was a lovely, welcoming church community. I had many friends there and always felt a sense of love when I entered the church.

After getting married, I stopped going to church regularly. By the time our children were born, I'd drifted so far I didn't get them baptized. Eventually, I felt the need to bring them to church. We had them all baptized together. It was quite a sight. They began attending CCD. K received her First Communion a couple of years ago. C was due to receive his this year. I stopped taking them late last year after I was no longer able to explain to them why we believed certain things even though the Church was telling us to do something else. The term "Cafeteria Catholic" may work for some but it's darn near impossible to explain to small children, particularly those who are autistic and rule-bound.

My sister still attends church regularly. She was visiting this weekend and we had many conversations about our faith. I was relieved when I heard that she'd struggled with similar issues. Our childhood parish is very liberal. Our current parishes are very traditional. For me, the complete lack of feeling at home in my new church was the breaking point. She struggled through and is still working on things. During times like this weekend, I wish I could say the same. I miss having a spiritual home. I'd like my kids to have one. BUMD has no real interest in it, despite being raised Catholic too. I think it might be easier if I found a spiritual home within myself and then found a spiritual group that can enhance it. If I'm not feeling the love within myself, how am I to share it with others?

Many years ago, I was driving up to my home parish for Good Friday Mass. I was excited not only for the services, but because my sister was driving home from college and was planning to meet me there. I felt profound joy in church that day, for so many reasons. On the drive up (it's called Our Lady of the Mountain for a reason), I was listening to Boston. That day, the song Foreplay/Long Time reminded me of Jesus' struggle during his last days. There was just something in the music that evoked the same feelings within me that I felt when listening to the scriptures during that mass. I told my sister about it and she agreed. Of course, I had to play it first thing yesterday to commemorate that time together.

"Time doesn't wait for me, It keeps on rolling." Will I ever figure out how to roll with it?

Monday, April 6, 2009

Music Monday

Some kids watch TV before school; mine usually watch whatever I put on the kitchen PC (aka 'Command Central'). Hulu is great for watching vintage TV. Pink Panther is a particular favorite. Another favorite channel is YouTube. I adore it - it's another great way of reliving my youth, until the record company executives insist that the video be taken down. One of the first videos I remember seeing was Barnes & Barnes' Fish Heads. It was weird then and it's still weird now. Needless to say, the kids love it.