Good Things

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

1. 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!


2. 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.




3. 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?


4. 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.


5. 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.

He might be a little cross-eyed, but he is cross-eyed with glee I tell ya.

Why Choking Your Kid Can be Educational

I've mentioned our Unit on Oceans, right? Oh. Obsessively? Yeah. I guess that's possible.

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.

Perspective

Lately I've been borderline obsessed with Charlie complete disinterest in speech. One of the people from the school district came a while back and absolutely marveled at how well Charlie doing using his augmentative communication device (a.k.a. Tina the Talker). I revelled in her compliment for about half a second before turning my agst back on full blast. I mean, the device isn't terribly useful at this point and I find myself yearning for a child who can tell me which video he'd like to watch or even that he's thirsty--I'm only human! Sometimes I think I've tried it all when in reality he hasn't had a thing to drink in hours.

In truth, I think that I can worry about speech because I feel good about other things. Progress may be paint-dry slow, but I can see Charlie improve physically day after day--his body looks better and moves more freely. I'm addressing his intellect--we cover topics, read books, watch movies, and I see the wheels spinning when he's introduced to new things. He eats; his vision is improving. I could just revel in this stuff but why do that when I could find something new to worry about?

So I worry about speech because it's next--because I can taste normalcy in a way that I couldn't before. In the beginning, I was glad that he could move all arms and legs. He'd make eye contact with the camera and I'd send the picture to everyone in my address book. I was happy for any victory.

I have often been confused by the parents of other children who are angry about their child's disability. Specifically, parents whose children are disabled, but are still able to walk and talk. I'm not saying that they don't have a right to be angry--I think anger is a valid part of the grieving process--but I look at them and see all that they have. They've got walking or talking, hell, good vision. I guess from their perspective, something is missing and that's the thing we focus on--the missing thing. All I can see is what they do have.

Jessica is a fellow blogger who discusses her days as a special needs parent. She posted something recently that hit me square between the eyes and is still lingering. She wasn't looking for pity or even really dwelling on it, but she revealed to us that her son, Connor, has what is considered a "severely life-limiting" condition. He's already lived three times longer than the doctor's original estimates and I can't tell you the number of times I've read about her performing rescue breathing on him because of a seizure. She speaks frankly about her desire to preserve and record as much of Connor's life as possible because they just don't know when it will be over.

I wonder about that perspective too. In the beginning of Charlie's life I was so scared about the future. So scared about having to care for him FOREVER. Scared that I wouldn't' be strong enough to go the distance. What if the opposite were true? What if each day was a gift that I might not get again? What would I do differently? Would I worry less or more? Would I handle it with Jess's grace or crumble under the weight of it all?

How much of our struggles comes from our perspective? How much of it is real and how much of it do we create? Can we do things to make it easier? Can we give ourselves a break sometimes?

I wonder.

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.

Sensory Activity

This week Charlie and I are "talking" about the ocean. Yes, there are flashcards involved, but also books, movies, activities. I like to include a trip to the aquarium, but we've got some serious travel coming up, so that might not work out. Our key words are seahorse, crab, sting ray, octopus, and eel.

This is a fun activity we did that helps introduce your child to new textures, stimulates multiple senses at once, and that involves virtually no coordination. Charlie is sitting in a Rifton chair for this activity, but you could easily do this in a different chair or even while lying down--just guide your child's hand if they need more help.

It's called Sensory Seahorses.

I took several Seahorse cut outs and applied various textures. I used tin foil, pom poms, foam, sand, and felt. I used both sides of adhesive-backed foam so I got two textures out of it--one spongy and the other sticky. This is a lot of work, but I made my Hubby cut out the seahorse shapes to give myself a break.

I made sheets with the Seahorses and presented them to Charlie. I was reinforcing his knowledge of seahorses (their appearance), and also discussing textures. As he touched the various seahorses I would say, "that one's sticky" or "that one's shiny."

I did notice that some textures were "too much" for his left hand. His right hand is much more forgiving of intense textures. I don't know the reason for this, but you might want to experiment with your own child--one hand might handle new sensation better than the other.

These are not magazine-quality photos. This is real-life, my-child-is-disabled-and-might-need-to-lean-in-and-lick-it-to-get-a-feel-for-it photos. I make no apologies. We encourage curiosity at my house.

Counting My Blessings

Would you be mad if I told you I tricked you?

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.

Jealousy Jane

Sometimes I think it's good to get stuff off your chest--it lets you breathe. I want this blog to be about living joyfully and sometimes you have to bare your soul a little to get to the joy. Like when I was teaching and a kid drove me crazy, I would finally break down and admit to myself that you just weren't going to like every student and that was OK as long as you were still fair with every student. Every single time, I liked the student more the very next day. Just something about putting it out there, offering it up to God, or whatever your particular spiritual beliefs are, made it better.

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?

One Wonderful Thing

Want to hear some good news? Of course you do! So, you remember my wheelchair debacle? Well, our PT recommended the company to us, so I told her about the whole thing--I put heavy emphasis on the fact that I was going to have to shell out my entire deductible because they hadn't ordered it last year when I placed my order. We basically said that we were going to order our chair through a different company because we were that unhappy with the situation.

Know what?

The guy called us and apologized. Apparently our PT called and gave him a stern talking to. He said if we order the chair from him, he'll waive our deductible. WAIVE IT! Chair=free (for us, anyway).

I'm a happy girl.

Why Kevin Smith's Problem is My Problem Too

Next month I'll be taking what I hope is my last flight on Southwest Airlines. By now most people have heard about filmmaker Kevin Smith and how he was kicked off a recent Southwest flight because of his weight.


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.

Siblings

It's funny how much I've hesitated writing this here. I pride myself on being honest, but for some reason I've felt ashamed about these particular emotions.

I feel certain I'm not the only one out there. . . OK, I'm not that certain.

So here's what I'm thinking:

If I have another baby, and that baby is "normal," will I love Charlie less?

I love Charlie, but I will admit that I was a little afraid of mothering a special needs child. Time has passed, and now, it's all I know. Will another child make my feelings less? Will I love my normal baby more? Should I mess with the happy ignorance I have now? Right now, this is my normal and I'm scared to change things.

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.

Have you been there?

And So It Begins

I live in my own world enough that I am actually proud of Charlie's accomplishments--I'm proud that he can commando crawl, that he feeds himself peanut butter and jelly sandwiches, and that he can adjust his headphones with the accuracy of Mariah Carey in the recording studio.

I realize that these aren't as fabulous as talking or walking, but as compared to brain dead, I think they're pretty flippin amazing.

As we begin the process of enrolling Charlie in Early Intervention preschool, however, I realize that I will be forced to accept that the rest of the world might not be as impressed as I am.

Filling out the General Information Sheet has proven to be a bit a problem.

I did OK with stuff like my name, my husband's occupation, and our ages. I started to get a little stumped after that, though.

They gave me half a line to describe "complications during pregnancy." I got a similar amount of space to list Charlie doctors. Even taking up all the available vertical space, I still ended up scribbling in the margin.

The question, "Has your child had any serious illnesses, accidents, or hospitalizations?" I mean, besides birth? Illness? Epilepsy. Hydrocephalus, and Cerebral Palsy aren't really illnesses.

The section on Developmental Milestones was especially humorous. They instructed us to write the age our child first achieved the following milestones: Sat alone, crawled, walked, potty trained.

I just left it blank.

My favorite section was the one on speech.

"When and by whom was your child's speech problem first noticed?"

It would be difficult to know exactly when we first noticed his speech problems as he's never really spoken a word.

And so the next part of the journey begins--school, special education, and all the things that come along with it. I'm not convinced that this is the perfect solution for Charlie, but I am convinced that we need to try it. This is just the first step in getting him enrolled for August. It seems far away, but it will be here before I know it.

Good Things

Been posting every day since I got back from Blissdom--I guess I'm on a Blissdom high or something. I'm generally an every-other-day kind of gal so we'll see how long this lasts!

As always, in no particular order, things that are making me smile:

1. 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!



2. 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.





3. 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.




4. Saints. Superbowl. 'Nuff said.




Yes, I took a picture of the TV--I'm a dork like that.




5. 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.

Who's In Charge? A Vblog

Let me say right off the bat that I promised myself that I would NEVER do a video blog--the thought is just horrifying. I don't mind pictures of myself from a distance, but a video up-close? Ack!

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:

Colors

Candace reminded me that colors are a something to work on with Charlie. We've covered it several time before, but reinforcement is the name of the game right?

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.

So You Have a Brain Injured Baby

When Charlie was first home from the hospital, I was desperate to know what I should do with him. People were telling me that anything was possible, but I'd seen the pictures--Charlie had a L-OT of brain damage, and I wanted to get crackin'. Only one problem: it was hard to find any information about what to do with a brain-injured baby.

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.

1. 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.



2. 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.



3. 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.



4. 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.



5. 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.

One Minute

This is not, perhaps, the most riveting video ever shot, but it did make my husband tear up.




Best part? This wasn't his best performance--he seems to do really well when I shut off the camera.

More Bliss

Without a doubt, the best part of Blissdom for me was that I left with a sense of purpose. For the most part, there's no one in my day-to-day life that has any desire to talk about my blog. They don't know what Twitter is and I'm sure they don't understand the drive I have to regularly discuss my life with strangers. At least one person laughed out loud when I told them I'd spent the weekend at a blogging conference.

Blissdom was the polar opposite of that. I talked and talked and talked and somewhere in the middle of all that, I realized what I'm doing here and better yet, what I want to do here.

Please bear with me as the sappiness factor is about blow sky-high.

I believe that my life is good--not perfect--but good. I believe that the problem with disabilities isn't the disability, but the rest of the world--a world that doesn't see the good and the beauty in difference. A world that isn't ready to embrace the unfamiliar. I'm not interested in a pity-party. I don't want anyone to feel sorry for me. I have crappy days, but I had those before Charlie and I'd have them if his brain had never bled and his heart had never failed.

I want this place, this space to be a resource--a place of inspiration, a place to learn a little something, a place of encouragement.

My first two years of college I lived in a dorm. On any given day, you could take a stroll and find someone else who was worried about their classes, who had relationship problems, or maybe just someone to go to the cafeteria with you. I remember staying up late, talking in the hallways and stairways about whatever was on my mind at the time.

I want this blog to be like that dorm. If only five people read it, then that's fine. I'm not blogging for money or recognition--I'm blogging for community. Blissdom made that clear for me and also made me realize that it's OK to be that kind of blogger. I can't be anyone else no matter how hard I try--I can only be me.

So here it is, my mission: I want live joyfully. I want to encourage others to do the same. I want to help other special needs mothers enjoy their children and maximize their potential.

Who's with me?

Me and my doppelganger at Blissdom. I was trying to avoid her, but Ellen insisted we take a picture together.

Blissdom '10

Back from Blissdom and had a great time! I don't know if you heard, but the Saints won the Superbowl last night. Whew! What a wonderful thing for the city I love so much. I'm still processing my crazy weekend, but here's a quick recap:

The Good:

• Met TONS of people. TONS. People like me, people not like me, and everything in-between. I like people, so this is good. I got to meet Allison from No Time for Flashcards who I've been chatting with on Twitter--she's got a Canadian accent! So cute.
  
• 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.
  

The Bad:

• 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.

The Ugly:

• 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?

Charlie after the Saints big win. He didn't know what was going on, but everyone else was happy, so why not smile?

Pictures of me courtesy of Ellen.

Amazing News

Well, I hoped to get a little video of it, but I couldn't, and I just can't hold it in any longer.

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. . . .

Dilemma

So. . . you guys remember that I ordered a wheelchair last year? Well, looking back, I can see that I posted on September 29th about our wheelchair decision. Since then, I've heard exactly nothing from our wheelchair representative. Not. One. Word.

Today, they called me. A woman asked me, "did you know your insurance doesn't do pre-approval for blah, blah, blah?" Or something like that. I told her I didn't even know what that means. Basically, my insurance company doesn't do pre-approvals for medical equipment. So, you have to order the equipment and hope that they pay for it She also told me that I would have to pay 30% up-front, which is roughly 1700 dollars.

So here's why I'm upset.

1. It took them four months to figure this out.


2. 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.


3. 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.


4. 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?


5. 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.


6. 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.