A Fine Line

Parenting is a delicate process. There are so many conflicting statements and opinions. So much information. There are doctors, other mothers, newspapers, magazines, the Internet--it seems like everywhere you turn there's someone else talking about the best way to do something.

When you're parenting a special needs child, there are even more voices. There's a legion of therapists, more doctors, and a many, many well-meaning people who saw this thing on Oprah, heard about this supplement, or know a child who completely recovered after blah, blah, blah.

There's a second, more insidious message in all this well-meaning advice, however. In a way, these messages tell us that our children aren't good enough just the way they are. The miracle of their being is insufficient. We need to fix them, alter them, make them more acceptable to the world at large.

This is OK. I understand that the world at large might not be able to understand the joys of a disabled child. I've been on the other side of the looking glass and I've pitied my future self. I've felt sorry for women as they pushed children through the mall in a wheelchair. I've wondered how they could appear so optimistic, so upbeat.

It's fine that the world wants to fix my child. It wants to make him as close to "normal" as is possible. In many ways, I want this myself. I want the world to see his value and worth and I know that this will be easier if he can talk and walk and eat with a knife and fork. I shoot for the big goals, the ones that often seem impossible. I dream big for my child because he deserves big--he deserves my optimism and deserves to have his light seen.

But I also have to be careful. I have to remind myself not to take it too far. Because in this moment, just the way he is, he is beautiful. He's not a jalopy that needs tune up. He's my child. He doesn't have to earn my love or affection. He has it. All of these things are for the outside world--not for me. I have to be sure that in the whirlwind of therapy, lessons, and supplements that this message is heard: I love you just the way you are.

Taking Care of Mama

My life pretty much revolves around my family these days. There's appointments, laundry, dishes, sometimes meals, more laundry, boring errands and a bunch of other things that just sort of become your responsibility when you stop having a regular job. So I think it's more than fair to occasionally take a little time for myself. So, I've been "taking care of myself." This is a nice phrase, but execution is a little murky. My Chick-fil-a addiction is pretty fierce, so I'm not going to mess with that just yet. I haven't bought any more alcohol. That's not quite the same as giving up drinking, but it effectively cuts my drinking down to almost none. I also told my husband to stop buying ice cream. This one hurts a little, but I'm getting used to it. The proliferation of Halloween candy has helped.



I also decided to exercise and so far I've had what I would generously call mixed results. I started out with little ten minute workouts and finally decide to upgrade to a DVD I used to do pretty regularly. Well, I must have been in better shape back then because twenty minutes in I was panting and tripping and sweating. I may not have mentioned this before, but I don't sweat. If moisture is gathering on my upper brow then that's a sure sign of impeding doom. My husband was shocked. And did I mention the tripping? There's something so undignified about tripping over your own two feet.



But I've kept at it. I did the video a few more times and now I can actually finish all thirty minutes. I'd like to work in some yoga in too. I did a ten minute routine and it's pretty cool. I'm going to look for a DVD with longer routine. I don't really have a still personality, so it's a stretch for me--but in a good way. I'd also like to do a little running. Not a lot of running--that's not my style. I have absolutely no desire to run a marathon on a triathlon. None. I do think it would be good if I could run a mile or two without dying though. You know, in case there's an alien invasion or something.

I'm not in danger of becoming Miss Fitness America, but it's something.

Good Things

In no particular order, things that make me smile:

1. Pirate Pete--a fifteen dollar piece of plastic that is currently haunting our garden. I just love him.




2. Charlie's first "drawing."




3. Bannana nut bread.



4. This post where Connor's mom talks about making her house handicap accessible AND stylish. My kind of woman.


5. Cool weather (FINALLY).


6. Continued success at Story Time at the library. He's pretty much keeping his eyes open, but now he whines when they turn off the Raffi music--I think it's an improvement although the librarian may disagree.


7. Going tailgating at LSU yesterday and running into another special needs mommy that I know in real life. Watch out for the Holland Mafia--we're everywhere!


8. The Lady in White in the mail from Netflix. This was the scary movie when I was a kid and I'm planning on turning off all the lights and scaring myself to death. Perfect for this time of year.

I'm Mostly Kidding

Well, it's definitely fall here in the South and that means lots of get-together, parties, and tailgating. It's a fun time of year.

Last year we felt Charlie was really too small to enjoy any of it. We mostly got him babysitters for outdoor events or anything involving a lot of people. This year, however, we think that Charlie is old enough to enjoy some of these things. He likes being pushed in the stroller and he loves to listen to his iPod, so I can take him just about anywhere.

Of course, then the anxiety starts to creep in. Charlie, in a stroller, listening to music, looks mostly normal. He has some strange eye movement from time to time, but as far as I can tell, his general appearance doesn't send up red flags.

So I'm imagining there will be some uncomfortable-ness as we run into acquaintances. Our friends know that Charlie has issues, some are more up-to-date than others, but I'm fine talking to them knowing that if they ask how Charlie is doing I can say that we're working on standing or saying the word "cup" and I won't have to backtrack completely and tell his birth story again. Not that it isn't a great story, but Hubby and I equate telling someone your kid is disabled with throwing a bomb at them. Their faces fall, they don't know what to say, and suddenly, you've ruined their day. Granted, you're the one with the disabled kid and you're actually fine with it, but now they're completely bummed out. It feels like a party foul. Dropping the disability bomb on someone is never cool and imagining a group outing where I may have to do it multiple times doesn't sound as good as an offer for a teeth cleaning. Or a mammogram.

There are a couple approaches to this. I could go with the "it's none of their business" approach. I mean, because it isn't. But these aren't strangers--these are people we know. Hubby and I were in a lot of student organizations in college and as a result, we know a lot people. Not best friends, but people we like and enjoy talking to. These people are often at football games or the birthday parties of mutual friend's children. They know us, but we haven't kept up.

We could also go with the "denial" approach wherein Hubby and I create bland excuses to cover any abnormalities in Charlie's behavior. No eye contact? Must be tired. Not running and playing with other children? Shy. Doesn't answer your questions? Distracted by his music. I hate that approach, though, because it's false and it makes it seem like we're somehow ashamed of Charlie's disabilities. I'm not ashamed. Hell, I'm proud. My kid's got a lot less brain matter than most people and he still manages to do pretty well for himself.

So, I'm thinking I've got two options:

I could post in my status update on Facebook: For those of you who haven't kept up with us, Charlie is disabled. He's two, but cannot walk or talk. We are fine with that. In fact, I still think he's cuter than your kid and KNOW he's better behaved in a restaurant.

What's that? Too bold? Too in your face? Well how 'bout option two:

I have a t-shirt printed up for Charlie that reads "I have brain damage. What's your excuse?"

Sadly, Hubby seems to have vetoed both options.

Dealin' With It

Charlie is two years and four months old. For the first six months, I put out fires--failing heart, bleeding brain, wonky kidneys, brain filling with fluid, and then, just for funsies, seizures followed by a strict protocol that involved never leaving the house for two months.


On top of the clear-cut medical stuff, there was the fact that his brain had bled and all the implications that come along with something like that. I had intellectual programs to design, books to read, alternative therapies to research. I could feel Charlie's formative moments slipping away from me and the pressure was on.


At this point in the game, things seem to have calmed. The doctor's appointments are farther apart, the tests are fewer. Therapy is a constant, but it's definitely not unmanageable. Things feel stable.


So what I'm asking Ye Wise People of the Internets is, what do you do with stress? Not the crazy, life-and-death stress, but the day-to-day, normal variety. How do you unwind at the end of a long day of minutia? I'm trying to be a little more laid back; a little more care free. I'm discovering that I may have forgotten how to do that. Is that possible?

Those Damn Decisions

You know the expression "you're dammed if you do; you're damned if you don't"? Well, that's how I'm feeling right now.

Charlie's therapist is worried about his hamstrings. His physiatrist is worried about his hamstrings. I am not worried about his hamstrings.

This puts me in a bad situation. Everyone is recommending interventions for said hamstrings and I don't want to do any of them.

Here's the deal: Charlie cannot keep his leg straight at ninety degrees. For those of you that don't understand, if Charlie lies on his back and I hold his leg straight, I can't get it all the way up to ninety degrees. If you stretch him slowly, you can probably get to 85. If you move his leg quickly, it's a lot less--I'm not sure how much less, he tends to tense up if you try something like that.

When he stands, he starts off very straight and as he tires, he starts to crouch. The PT is convinced that this is because of his tight hamstrings. I think it's because of his weak everything else.

The pressure is starting to build.

The PT would love to see him in a stander for several hours a day, but we've got two second-hand standers, neither of which is easy to use and one of which is probably dangerous, so we don't really like putting him in the stander. We do a lot of free-standing in an attempt to make up for this. Buying a new stander is pretty much out of the question because they cost thousands of dollars and we don't have thousands of dollars to spend on medical equipment we're not sure we even want. I offered to purchase a second-hand stander, but the PT was not at all enthused about that idea.

The Physiatrist wanted to give Charlie the muscle relaxer Baclofen, which I refused. Charlie doesn't need muscles relaxers--he's weak enough all ready. He'd end up with decent hamstrings and the rest of his body would resemble spaghetti noodles.

So now the PT is asking about Botox and I'm just not feelin' it. From what I can understand, no one is worried about Charlie's hips. No one thinks that his tight hamstrings are affecting his ability to stand/walk. His hamstrings are not rapidly getting worse--they are changing very slowly.

I just don't see the purpose of it. I'm thinking that maybe somebody should explain that to me? Of all the choices, Botox appeals the most, but it doesn't really appeal. I feel like I'd be subjecting Charlie to an invasive medical procedure to please his doctor and his therapist. Something's out of whack there.


I know that everyone who works with Charlie only wants the best for him, but in this case, I'm not so sure that we're all in agreement. I have days where I just want to turn off the lights and act like nobody's home because it can be HARD to listen to everyone else's opinion day in, day out. I've been burned by medical professionals before, so I'm not going to just do everything I'm told. But then I feel like I'm guilty of child neglect if I don't take their recommendations at face value.

It's one of those decisions.

Pictures taken today at the New Olreans French Market. As kid we always went there to get our pumpkins and now I get to take Charlie!

Dog Breath

Hubby: I think Charlie might be getting sick.

Me: Why?

Hubby: His breath smells funny--like the dog's.

Me: Oh that--he found the dog food today and decided to eat some.

Hubby: You let him eat dog food?

Me: It was either that or lose a finger.

More Good Things

In no particular order, things that are making me happy:

1. Visited the neurosurgeon today and we don't have to go back or get a CT scan for another year. Hooray!
2. Meeting a young man in the neurosurgery waiting room who has the same wheelchair we just ordered for Charlie. He said it's his fourth one like that and man, it moved sooo smoothly. Very cool.
3. Not being on quarantine any more because that business was BORING.
4. Discovering a new series of mystery novels that I really like (well, they're new to me).
5. A young woman in the French Quarter passionately kissing her significant other who just so happened to be in a wheelchair.
6. This five dollar bath chair that Charlie's physical therapist lent us--he's having so much fun splashing in the water.



7. Getting the house decorated for Halloween.
8. Getting a pumpkin at the French Market this weekend (if the weather will cooperate).
9. Free concert in the park by my house this weekend.
10. The University of Phoenix's ad campaign I am a Phoenix. I love the concept of putting your life back together after tragedy, of rising above the wreckage. I actually painted a lot of phoenixes at one point. They even have stories online for inspiration. Too cool.
11. This amazing video that ABR creator Leonid Blyum put up on his blog. Warning: Leonid talks a LOT, but his results are crazy-impressive. This kid had a rating of 5 on the gross motor classification system for cerebral palsy, which means they don't expect that he'll ever move independently. In two years, this child was prop sitting and commando crawling. If that isn't a complete WOW then I don't know what is. Really makes you hopeful.
12. This post by Ellen, This post by Cristin, and Candace's invention of the term "miracle veteran."

Gosh, I know there's more, but that's it for today.

Potential Unlimited

I've probably mentioned this once before, but my husband's step-mother is an amateur playwright. She writes at least one play a year, has entered many, many contests and has won many accolades for her writing. As part of her process, she has several play readings. Play readings are relatively simple affairs. She has actors that she knows read the script aloud for an audience. The audience provides feedback that helps her to fine tune her piece.

Tonight's play was about an older woman who loses her hearing after being treated for a serious infection. The play follows her journey as a person who is newly deaf and who must learn to function in a hearing world.

The play especially struck home for me in light of the post I wrote yesterday, and the comments I received. I felt that things didn't come out of my mouth the way I intended, so this is a more in-depth follow-up that I hope makes my position a little clearer.

Yesterday I reported the finding that children who receive music instruction prior to the age six have a demonstrably larger corpus callosum then those who do not. I also stated the opinion of one person that a the first five years of a person's life are the most vital in terms of learning.

I did not intend for that to sound like a deadline. It isn't a deadline. For me, five years old is a long ways away and that seems like plenty of time. Five years old, however, isn't the finish line for a person's potential. Do I think that very young children learn very easily? Yes. They are designed to do so. But there is research that suggests that brains continue to form new neural pathways into early adolescence using methods that involve multi-sensory stimulation and repetition. To this day I can repeat the list of conjunctions my sixth grade teacher made me memorize. I myself have taught children who were labeled "retarded" to solve algebraic equations. There are even studies now that show that people who lose their eye sight from a stroke, can regain it through a series of "eye exercises."

Maybe a person can't make their corpus callosum bigger after the age of six. Maybe the first five years are a great time for learning. That doesn't mean that that it's ever too late. The human brain is still a great unknown and even scientists are surprised by what it does sometimes. With work, I think that many, many things can be accomplished. That work part is key, though. Small children make neural pathways almost effortlessly. As we get older, it involves more work. So if your child is six, then that doesn't mean that you should lie down and give up, but rather it means that it might be a little more work for both of you. Really, people are amazing, and capable of so much. I would hate for anyone to ever think I felt differently than that.

Quick Brain Stuff

A while back people asked me a lot of questions about education and I did my best to answer as many as I could. Lisa asked me a question, though, that I didn't really know the answer to. She asked at what age do you start to be able to see what a child will be capable of. Well, this question really got my wheels turning. Through my ABR board I have realized that our children often know much more than their bodies will allow them to show. I know that specialized and rigorous therapy can also create unusual gains. But I don't think that's what she meant. So I've been reading about kids and their brains and while I don't have a perfect answer, I think I have some of an answer.

It actually started with a book I picked up at the library called Raising Musical Kids. Charlie loves music, so I thought I'd look it over and see what sorts of things would be beneficial now. It has the most adorable picture of a tiny child playing the piano on the cover--too cute. The most interesting thing in the entire book was this: According to research, children who receive musical instruction before the age of six, have a demonstrably larger corpus callosum than children who do not. For those of you like me (who skipped anatomy), the corpus callosum in the part of the brain that send messages between the two hemispheres.

Two things grabbed me:

1. Using a certain part of the brain repeatedly can cause it to grow
2. The use must occur before the age of six.

Glenn Doman who write the Teach Your Baby series that I adore so much says that the first five years of life are the most crucial. Seems like he might be right.

I know this doesn't answer Lisa's question explictly, but it helps me. After age five, it will become much more difficult for your child to learn and grow their brain. It also makes me amazingly hopeful. Five years is a long time and you can expose your child to a lot of things in that time--possibilities, possibilities.

I've got Bright From the Start on my nightstand right now, which is all about baby brain development. I'm sure I'll have a lot more to report once I finish it.

Special Education

I taught for a few years in public schools working mostly with kids with learning disabilities. First I taught children with dyslexia at three district high schools and one middle school. After that I spent two years working as an inclusion teacher in Middle School math and science. Before I had the full-time gig with the dyslexic kids I subbed in pretty much any kind of environment you could imagine--anything from a regular ed PE class to working with kids at the city's mental hospital.

In all that time, in all those schools, I can remember only ever seeing one student in a wheelchair.

I've been thinking about this since the day we ordered Charlie's wheelchair. Two of his therapists were over and they were getting into the school stuff: you need to make sure they're changing his positioning, you're going to need to make sure he has a good chair, you're going to need to make sure the speech therapist is coming out to see him like she should, you're gonna need to be a bitch, they're going to underestimate him. Is it any wonder that day sent me into a tail spin?

And they know what they're talking about. I've seen it myself. I've been in schools where I have had to fight to make sure my walking, talking, mostly-normal kids got what what they were required by law to get. I've had teachers blatantly refuse to do what was written on IEPs. I've seen administrators do it too. I've had my class sent to the auditorium, the un-airconditioned student center, or a closet.

I have always been a big advocate of public schools--especially when it comes to special education. I think they're better equipped, have more staff, and are better versed in working with special needs. Now that the time comes for me to send Charlie, I'm less sure. They may be better, but that doesn't mean they're good enough. Who will advocate for him when I'm not there? Will he be included or is he doomed to a life of watching and never experiencing? Will he be judged on his abilities or disabilities? Will he spend his high school days doing crafts and cleaning tables while his peers study history and literature?

I just don't know. Luckily, I don't have to decide today.

Quality of Life

Five months ago we went to see Charlie's physiatrist--for those who don't know, a physiatrist attends to sports injuries and also to issues related to neuro muscular disorders like cerebral palsy. He assess joints and range of motion, and prescribes goodies like braces and wheelchairs when needed. He's also the guy who could do a Botox injection into tight muscles if we needed it.

On our last visit, he discovered that Charlie's hamstrings have become even tighter than they were previously. He recommended Baclofen which is an oral muscle relaxer. I'm not interested in giving Baclofen to Charlie. First, it's a drug and I'm trying to keep the number of drugs we take down to a minimum. Second, it's a whole-body muscle relaxer and most of Charlie's body is floppy.

I have a whole bunch of other reasons, but I didn't really want to talk about that today. I wanted to talk about a little unspoken component that really sealed the deal for me. Something that I think isn't addressed enough.

As the doctor was describing Baclofen, he mentioned that it's administered three times a day. THREE TIMES! That's a lot. Even on my best days, I'm pretty scatterbrained and my husband often has to remind me to take any medicine I've been prescribed. Remembering to give Charlie a lunch-time dose of something is extremely difficult for me. I'm not saying I can't do it--Charlie had a heart medicine that he took for the first year of his life that had to be administered every day at 2:30. I did it, but it was hard. I'd often forget, I'd beat myself up for forgetting, and then I'd have to figure out a good time to give the next dose.

For me, it became a quality of life issue. And that's something that I think a lot of us forget sometimes. We are so eager to do things for our children that sometimes we follow every piece of advice we're given without thinking about the big picture. I'm not saying that I would never give Charlie Baclofen, but right now the pros don't out-weigh the cons. There's no risk to his hips, and the drug would not help him to walk. Many, many children benefit from this drug, but I don't think he would be one of them. In the grand scheme of things, it becomes one more thing on an already too-long to do list; it's yet another consideration when leaving the house; it's a worry in a mind that it full-up with worries.

I'm trying to remember this as I make plans these days. Trying to schedule in fun as well as therapy. Respecting rest as well as business. I believe that in the end, my family will be grateful that sometimes we said no to one more appointment, took a long nap, or sang a silly song.

Pictures taken at a recent trip to the zoo.

On My Mind

I really should write a blog post every day. I don't think people would read every day, but that would prevent me from getting this pile-up of thoughts that's so difficult for me to separate. I want to write something and jumble of thoughts from the last week or so just comes spilling out onto the page. It's like that "word vomit" that Linsday Lohan spoke so eloquently of in Mean Girls.

Ken over at Blogzilly and Dawn from Wherever HE Goes We'll Go both gave me a Lemonade award. The award is for a blog with attitude or gratitude. You're supposed to take the award, and then link to ten blogs that you would like to give the award to. At this point I think that almost every blog I read has already been given the award, so I'm not sure who to nominate. Also, I love getting an award, but I hate giving it because I hate, hate, hate the idea of excluding anyone. It's like a sickness with me. I know it's silly, we're all adults here, but I just know that I'll forget to mention some wonderful blog and I'll be kicking myself long after everyone else has read this post and gotten on with their lives. I'm a dork like that. So, thanks guys for the award, but I'm going to leave it at that. Of course, now my all worried that I've offended the people who gave it to me--really, I need to take a chill pill!

Other than over-analyzing a blog award, I've been thinking about the trip to the neurologist we're not going to get to take, nutrition, the parenting books I've been reading, and all sorts of other stuff. Plus, I'm trying to entertain Charlie who's not feeling that great himself.

I'll try to get it together and post something that makes sense soon. I think all this cough medicine has gone to my head.

Irony

Even though I wasn't talking about myself--I was talking about the collective of mothers--I should have known better than to title my post "Mother Knows Best." It's like asking the Universe to prove you wrong.

Speaking of. . .

A couple of weeks ago I picked up a nagging cough that I just couldn't seem to get rid of. Nothing serious--just a cough--but it wouldn't go away. I wanted to go to the doctor, but Charlie's schedule is pretty full, I hated to take him with me and possibly expose him to the flu, we had a wheelchair to pick out, yada, yada, yada. I didn't feel bad enough for it to be the flu so I was guessing that it was allergies or something else minor.

I went through an entire bottle of cough syrup and bought another. We washed all the sheets and blankets in the house and vacuumed every nook and cranny. That darn cough was still there though.

This past week the cough seemed to get worse and I also noticed that I was feeling run down. Genius that I am, I still don't think the cough is a big deal. I start talking about my lousy eating habits and the fact that I need to exercise. I take walks and start doing a little workout DVD in my living room.

Saturday morning I wake up and have a coughing spell so bad that it scared me--I had trouble catching my breath. So I head over to one of those after-hours clinics to see what he thinks. Side note: my friends calls those places Doc in a Box and I think that's hilarious.

So I go see the Doc in a Box and after listening to my chest, reviewing my symptoms, and ruling out a few things, the doctor tells me I have Whooping Cough. I leave with a fist-full of prescriptions. Apparently not all coughs can be cured with a salad and a workout DVD.

Charlie's been given a prescription for antibiotics as well although he's been vaccinated at least once, so his risk of serious infection is pretty low. Apparently some adults outgrow their vaccinations which is how I got it. My husband seems fine. Charlie and I are both on quarantine until Friday. We have no idea where I might have picked up whooping cough--my best guess is the pediatrician's office.

It really is ironic because I never would have let a cough go on that long with Charlie. With me, however, I have a bad habit of putting my needs at the bottom of the list. There's laundry and family dinners and appointments and intellectual programs and research to be done. I really do need to get a little better about attending to my own needs as well as my family's.

I'll be attempting to rest this week--that can be hard when you have a toddler at home, but I'm gonna try.

Mother Knows Best

If you read my post entitled Beliefs, then you know that I think some of the best information about raising a special needs kid comes from parents who have been there before you. Today I wanted to open up my comments so everyone can share their experience on a particular topic.

I want to know everything you guys know about diets for special needs kids and/or food allergies.

Maybe it's just me, but it seems to me that a very large percentage of special needs kids have food allergies/intolerances. I also feel that medical professionals are either quick to write off concerns or even scarier, quick to recommend a feeding tube/nissen combination surgery. I'm not saying that these are unnecessary surgeries, but personally I'd like to start with the least invasive option.

For us, sometime around six months, Charlie started to reflux terribly. Before that, it had been normal baby stuff and suddenly it got really bad. ABR helped, but it was still happening and--I'm going to get graphic here--when he did spit up, it looked like the milk had curdled in his stomach and it had a horrible sour smell to it. Then, one weekend, I had a conversation with my friend's sister whose married to a doctor and has two typical children. It had taken them almost a year to diagnose her child's food allergies--the doctors kept calling it reflux. After hearing that, I decided to just cut milk out of Charlie's diet for a week. Presto! Reflux was gone. He still gets it from time to time when he's feeling sick, but things are a LOT better.

I've also spoken with parents who've gotten seizure control with diet and many, many parents mention that their children behave better or have increased attention on certain food regimens.

So please, leave me a comment. Tell me about your child and their food. I'd love to here from special mommies who have kids on certain diets, but also from parents of typical kids who've had any notable food experiences. Feel free to write a ton and include links if you know of any. Let's share all the information we've got and I plan to put up a link to this post so it can be a resource for others.

**Quick edit here: G-tubes are often the only solution for children who cannot consume enough calories. Charlie himself went home from the hospital on a g-tube and used it for a few months before being able to take food by mouth. It was a neccessity.***