Thursday, October 29, 2009
Tuesday, October 27, 2009
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.
Thursday, October 22, 2009
- Pirate Pete--a fifteen dollar piece of plastic that is currently haunting our garden. I just love him.
- Charlie's first "drawing."
- Bannana nut bread.
- This post where Connor's mom talks about making her house handicap accessible AND stylish. My kind of woman.
- Cool weather (FINALLY).
- 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.
- 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!
- 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.
Wednesday, October 21, 2009
Monday, October 19, 2009
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?
Saturday, October 17, 2009
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!
Thursday, October 15, 2009
Wednesday, October 14, 2009
- Visited the neurosurgeon today and we don't have to go back or get a CT scan for another year. Hooray!
- 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.
- Not being on quarantine any more because that business was BORING.
- Discovering a new series of mystery novels that I really like (well, they're new to me).
- A young woman in the French Quarter passionately kissing her significant other who just so happened to be in a wheelchair.
- This five dollar bath chair that Charlie's physical therapist lent us--he's having so much fun splashing in the water.
- Getting the house decorated for Halloween.
- Getting a pumpkin at the French Market this weekend (if the weather will cooperate).
- Free concert in the park by my house this weekend.
- 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.
- 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.
- 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.
Sunday, October 11, 2009
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.
Saturday, October 10, 2009
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:
- Using a certain part of the brain repeatedly can cause it to grow
- 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.
Wednesday, October 7, 2009
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.
Tuesday, October 6, 2009
Monday, October 5, 2009
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.
Sunday, October 4, 2009
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.
Thursday, October 1, 2009
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.***