- My art is being shown on the Style Lush Blog and there's a Giveaway going on over there as well. Go enter to win a free print. You should check out the whole site--there are shoe pictures over there!
- We're headed to Plano tomorrow for more ABR training--finally got that mess worked out. Can't wait to find new ways to help Charlie maximize his potential--also, we'll be getting comparison photos, which I LOVE! Like before and afters, but with my kid.
- I wrote an article for a national art magazine and they sent me a contract in the mail--like, I might be in an honest-to-goodness magazine. I'll let you know if it all works out, but a magazine, y'all--not one that they sell in super markets, but one they sell at most major booksellers. How cool is that?
- Charlie got a new chair. I don't know why, but I like it better than the old one. Feels less bulky. It may or may not be doubling as a coffee table in this picture.
- This picture of Charlie. Again with the beach theme only my sand is colored--I figured, what the heck! Good visual contrast! Yeah, looks a lot like marinara--he scooped that stuff up lickety-split and shoved a handful in his mouth. It's possible that we took a bath thirty seconds after this picture was taken. It's also possible that I found orange goo in his nose about an hour later.
Wednesday, February 24, 2010
Tuesday, February 23, 2010
Well, I decided to try a little activity that I found in Family Fun magazine. It's a recipe called "squid dogs." I took one look at it and knew we could do it at our house. I re-named it Octodogs because we're studying Octopuses this week.
I am not the kind of lady who feeds her kids hot dogs--I don't even own a microwave--I had to specifically buy some for this activity, but I thought it was worth it. Even got the really expensive hot dogs because the things freak me out (see also: Katy needs hot dog therapy). So you take a hot dog, cut it up, and then stick spaghetti noodles through the sections. Four noodles per hot dog piece and that will mean eight legs sticking out the sides. Octodogs I tell you.
So, I make the octodogs, show them to Charlie and then put them on his tray to explore. The doorbell rings, it's his OT, I go to let her in.
MEANWHILE Charlie picks up an entire Ocotodog, puts it in his mouth, chews like three times an then attempts to swallow.
Cue coughing/choking kid as professional enters the room.
Not long after that we decided to turn Octodogs into an activity about using your fork. Cut those suckers up pronto--poor things, never saw it coming.
Parenting--it ain't for the faint of heart.
Monday, February 22, 2010
Photographs from our recent Ocean activity, putting sea horse stickers in the ocean. Not a hit. In this second picture he's willing my husband to come save him.
Sunday, February 21, 2010
Saturday, February 20, 2010
OK, I didn't trick you, but I really believe that the only way to get out of a negative frame of mind is to focus on the positive. So I'm going to ask--pretty please--for everybody to do the opposite of what they did yesterday. Jealousies? Gone. Blessings? Alive and well. So here's what I'd like. Today, I'd like to hear about the good stuff. Even better, try to list at least one more good thing. I really do believe that acknowledging the good and being thankful for it actually brings more good into your life. I suspect that this post won't be as popular as yesterdays, but come on--give it a try!
My blessings/good things:
- Have I mention our free wheelchair?
- The weather here in south Louisiana was fantabulously gorgeous today. Should be tomorrow too.
- I have a kid who not only eats, but loves eating. I think he ate more than I did today.
- I got to sleep in this morning.
- In two weeks, I'm going to Disney World!
It could definitely be worse.
Friday, February 19, 2010
So today Internets, I'm letting it all hang out. I'm a jealous Jane today and I don't like that version of myself, so I'm writing it down and letting it go.
I'm jealous of:
- People who have four perfectly normal children when I have only one who's not perfectly normal.
- People who have the time and money to go to the gym.
- CP kids that can talk.
- People who get pregnant and never worry one little bit.
There it is. I'm done. I know I have a wonderful, blessed life, but I wanted to share that I struggle too.
Any jealousies you'd like to get off your chest?
Thursday, February 18, 2010
Wednesday, February 17, 2010
At first glance, this seems to be a clear-cut issue: if a person's size extends beyond the parameters of their seat, then they should purchase a second seat to accommodate them. Southwest states clearly that the definitive question is whether or not the armrests can be fully lowered. Seems fair.
But then it gets a little dicey. . .
You see, despite saying that the armrests are the "definitive gauge," they go on to say that they should always question cramped, unsafe seating arrangements even if the person in question is able to put down the arm rests.
And that's where the problem is.
Where is the line drawn? Clearly Southwest thinks the line can be drawn as they see fit. That is their right, but as the mother of a disabled person, I begin to wonder.
Will my child's wheelchair be a problem for someone one day? Will his drool make someone uncomfortable? The comfort of other passengers was one of the stated reasons for ejecting Kevin Smith from his flight. Will my son's lack of mobility create "unsafe seating arrangements?" Where is the line drawn? Unfortunately, with Southwest Airlines, it's unclear and that is where I take issue. Can these same policies be applied to the elderly? Might they pose a "safety risk" with their slow gait?
My issue is not with the policy. Companies have the right to whatever policies they like. My issue is with the enforcement. I prefer to know in advance if I'm going to have any complications. Flying is hard enough without added hassle and stress. For me, Southwest has just become an unsafe bet. If they can't be trusted to stick to their own guidelines, then I'll have to fly with someone else. They can do what they like, but they'll be doing it without me until I feel confident that their policies aren't subject to the whims of flight attendants.
Monday, February 15, 2010
I know logically that a mother's love for her children is always there, but I hate to imagine that another baby might make Charlie seem defective or less. I struggle with this--especially as I begin to think about adding to our family.
Saturday, February 13, 2010
- Charlie's right hand. Charlie has this toy that has three handles--one red, one blue, and one yellow. Grab one and it will say "yellow" or whatever. Grab two at the same time and it will say the secondary color. For example, if you grab red and yellow at the same time, it says "orange." I had very little hope of Charlie using both hands well enough to ever get there, but these days I'm hearing "orange" "purple" and "green." Hooray!
- Snow. The perfect amount--enough to take some pictures, but not enough to shut down the whole state. What more could a girl ask for? Loved seeing the difference in Charlie between this year and last. This year there was interest and exploration.
- Mardi Gras. Contrary to popular belief it's not one big drunken strip show. Most locals are more into the hangout/eat fried chicken/sit in a lawn chair part of the holiday. Lots of friends we haven't seen in ages will be in town and I can't WAIT to see them.
- Saints. Superbowl. 'Nuff said.
- These shoes. May not look like much, but they are hella comfortable without making me look like an old lady. Turns out flats aren't as bad as I thought.
Yes, I took a picture of the TV--I'm a dork like that.
Friday, February 12, 2010
But there was a lot of talk about them and Blissdom, and I like the idea of getting out of my comfort zone, so here goes nothing:
Thursday, February 11, 2010
So I did this cute little activity where I was pulling red and yellow things out of a box and putting them into the correct pile. I stole that idea from Alli at No Time for Flashcards--my mecca for cheap learning fun.
Charlie wanted no part of this activity and kept turning all the way around in his Rifton chair and staring pointedly at his See and Say.
Finally, I got frustrated and held up a red pentagon and a yellow triangle. I said, "which one is red, Charlie?" I put them on his tray.
He took the pentagon off the tray and threw it on the floor.
I tried again, both shapes on the tray, "Which one is yellow, Charlie?"
He took the triangle and threw it on the floor.
I'm gonna go ahead and call that a success.
Wednesday, February 10, 2010
So, for all the people who may wind up here because they Google "brain damage" and "baby," here's my list of five things I recommend you do. Remember, I'm not a doctor or a therapist--just an in-the-trenches mom. Discuss any plans you have with your doctor.
- Enjoy your child. All babies are very, very similar and I am angry at myself for not truly enjoying Charlie when he was small. Most babies eat and sleep and need short periods of stimulation. If your child is going to be disabled, you have plenty of time to deal with all of that. The itty bitty baby thing lasts for a very short time--enjoy it, snuggle, and breathe in the baby powder scent.
- Put your kid on his/her belly. This is good for typical kids and non-typical kids. When Charlie was very small, he had a feeding tube, so we put a nursing pillow under his arms to make sure he was comfortable. Putting you child on their belly helps them develop arm and neck strength, which will be really useful when they decide they want to move.
- Stimulate the five senses. I could tell that charlie's vision had some issues even when he was still quite young, so I used a flashlight to stimulate pupillary response. Maybe that's a little gung-ho, but black and white images are great for any kid. And kids have five senses! We also played classical music (before he discovered Lady Gaga), encouraged him to feel interesting textures, and let him smell fresh ingredients in the kitchen.
- Start trying to introduce the concept of cause and effect. It's a basic building block of learning and making connections. We started with Charlie by saying, "ready, set, go!" and then pumping his legs like he was running. Anything will work. Just get your child used to the idea that the world is logical.
- Try to encourage independence. Make no mistake, Charlie is pretty disabled. He couldn't lift his head off the ground until he was four months old. He was at least seven months old before he could grasp anything in his hand. He wasn't able to sit on his first birthday. We started encouraging independence at a young age, though. We dangled toys millimeters from his hands, I laid him on top of toys so his movement set them off, I did everything I could to give him chances to entertain himself. These days Charlie has a stubborn streak a mile wide--he WILL figure it out and NO, he doesn't need your help, thankyouverymuch!
So tell me--what advice would you give a new mom for helping her child grow and develop? I'd love to hear from regular moms and special ones.
Tuesday, February 9, 2010
Monday, February 8, 2010
Me and my doppelganger at Blissdom. I was trying to avoid her, but Ellen insisted we take a picture together.
- I met Ellen, another person blogging about raising a kid with special needs. Ellen has a 6'4" line backer personality packed into a five-foot frame. The woman is a complete fire cracker.
- I met Shamarr Allen--a trumpeter that my husband and I completely adore. He was actually there to play with Harry Connick Jr., but I was more excited about him. I told him I had his CD and he looked at me like maybe I'd had too many cocktails.
- I learned SO much. I learned about writing, being professional, having a footprint--all sorts of stuff.
- I also got to meet a lot of really well-known bloggers which is just cool. I met MckMama, Redneck Mommy, Megan at Velveteen Mind, and Cecily.
- I forgot my deodorant, so I kept sneaking back to the room to wash my under-arms with soap and water. SO embarrassing.
- I lost my wallet with my license in it. Some very trustworthy person turned it in to lost and found, though, and I got it back with twenty-three dollars still in it. I didn't even know I had twenty-three dollars! Getting it out of lost and found was a trick and it made me about an hour and a half late leaving the hotel.
- I learned so much that I'm sure I will be busy for months implementing all information. I'd love to sit down RIGHT NOW and get it all done, but I've got this kid and he keeps wanting me to feed him and play with him and stuff.
- I was crazy-tired on the drive home. Luckily, I had books on tape and they kept me afloat.
- I don't think Charlie had one bath the entire time I was gone. Not one. I thought that was bad until I realized. . .
- He was wearing the same shirt I left for him to wear on Thursday. Scary, no?
Tuesday, February 2, 2010
Yesterday, Charlie was taking multiple steps in his gait trainer. One foot after the other, over and over.
My baby walked.
I realize I might not see it again for another six months or something, but it's in there--it's really in there.
Feel free to squeal. . . .
Monday, February 1, 2010
- It took them four months to figure this out.
- If the wheelchair had been ordered and delivered prior to December 31st, I would have had to pay $0 because we met our deductible last year. I realize that these things move slow, but since the claim isn't filed until AFTER the chair is delivered, I feel like it was possible to have had the chair ordered quickly.
- Back when I ordered the chair, the big dilemma was whether or not to get a tilt chair. According to the rep, the tilt chair didn't have self-steering wheels. Since then, I've had another special needs mom tell me that the newer models have both tilt and self-steering.
- I wasn't given any choices with regards to seating. Barbara at Therextras very adamantly recommends a flat seat, and the rep told me they never do that. This bothered me, but it's not like I had a lot of options. Actually, I had exactly none, so what are you gonna do?
- I Googled my wheel chair and the base model runs about $1600. I realize there's a lot more to it than that, but it seems like they want me to pay for the entire chair and then they're going to bill my insurance company another $3700. They'll be making a pretty sizable profit for some sub-par performance.
- I heard through the grapevine that this company is swimming in debt and may go out of business. I'm worried that I get the chair from them and not be able to get any more service for it if they fold.
I feel bad. I mean, a rep came out to my house and measured Charlie and everything, and I'm sure he'll lose money if I don't buy the chair from his company. On the other hand, I don't think I should reward piss-poor performance with our hard-earned money--we don't just keep it in a tub and roll around in it in our underwear.
A source of mine has given me the name of another wheelchair representative who sells the same brand of chair. Should I just call them?
Has anyone out there ever tried to just buy their own wheelchair off the Internet?
Playing in our very own "Pond." Idea shamelessly stolen from No Time for Flashcards.