Wednesday, July 28, 2010
Just wanted to let you know that sometime this evening Bird on the Street will be moving over to her own domain. You will be re-directed if you come here, but if you read me in a reader you will need to update the address. Starting tomorrow, my blog will be located at: www.birdonthestreet.com and I'll have RSS enabled over there as well.
My Facebook page will continue to receive updates.
See y'all over there!
Monday, July 26, 2010
- My talk at the library about social media was SO FUN! It really ended up being a rather long discussion about Facebook, but I knew the answers to everyone's questions and got good reviews from the audience.
- As a result, the library has asked me come back and do some more talks. I love this. I loved teaching and while this is a lot easier than my last gig, it's still a complete blast.
- I *think* that I've found myself a small job that will run through the months of Sept-Nov. I can work from home and it's very part-time, but it's nice to have something to do while Charlie is in preschool.
- A lady from the parish called to tell me that they will be considering Charlie's case to determine whether or not we may need more assistance in the home. This has caught me completely by surprise because I was told he would be seven or eight before they offered something like that. It's just a "consideration," but I'm still impressed.
- My blog design--things are going fabulously--I'm hoping I'll be able to share things this week, but you never know. Still, I'm excited!
- The Bird on the Street Facebook Page--today we hit 110 "likes." I am over the moon. When I started the page I was hoping for a couple of people. This has just exceeded my wildest expectations.
Saturday, July 24, 2010
The extremely talented Alexa from Flotsam posted a little piece the other day about how she’s been blogging for five years. I’ve been blogging since late 2005, so not as long as Alexa, but I definitely related to her description of how blogging used to be a rather secretive and perhaps weird thing, and how now it’s become more socially acceptable. I’m assuming this must be true since even my mom reads blogs these days.
Alexa did a little recap and I feel inclined to do one of my own. Please humor me in my nostalgia.
Homes Owned: 2
Places Lived: 3
Days hospitalized: 3
Days Charlie was hospitalized: 43
Personal surgeries: 1
Charlie surgeries: 6
Days Husband was Deployed: 126
Hurricane evacuations: 1
Trips to Little Rock: 3
Blog Posts: 904
Books Read: 97 (to the best of my recollection)
Weddings Attended: 5
Weddings I Stood In: 2
Internet Friends met in Real Life: 7
Pounds Heavier: 10
My life has changed volumes since I started blogging, but the record is nice to have—even if there are some parts I can’t bear to read. What have you been up to?
Tuesday, July 20, 2010
Some of you may remember that Charlie got evaluated for preschool back in April. Or something. I can’t remember. What am I, his mother? Anyway, since Charlie is such a “complex” child, they thought it would be best for me to bring him to the special education center where he could meet with all the evaluators at the same time.
When I arrived, one person asked me questions while the others did things with Charlie such as show him switches, evaluate limb stiffness, and generally put him through the paces. I noticed that they seemed to be shielding me from the evaluation and were most-definitely not interested in hearing my ideas on the best way to test him. I’m a mom. We’re a pain. It’s our job. Best keep me at bay.
We got the results of the evaluation a few weeks later. OT and PT were spot-on. He actually came in as “moderately impaired” in OT, which was a pleasant break from all the “this child is so behind even a rocket pack can’t help him.”
We were told that Charlie had the cognitive abilities of an eight month old. I know this isn’t true—I’ve got experts and my own two eyes to tell me so. I realize that kids have off days, testers have a specific set of questions, blah, blah, blah. I don’t want to read it, but I understand that it’s not a message sent from God. So, I sucked it up and headed over the pages of “suggestions.” Now, if your kid is completely normal, you’ll be unfamiliar with this—lucky you. Basically, they provide you with a list of activities you can do to stimulate them in the areas where they’re lacking. It’s usually pretty easy stuff that you can work into your daily routine.
Alternately, it could be a list of completely inappropriate activities that clearly have nothing to do with your child. Perhaps something cut and pasted from another child’s IEP.
Guess which one we got? I’ve actually never seen a suggestion list that was so clearly not for my child. Multiple items suggested that Charlie “tell” me things even though he’s non-verbal. Other items were for much older children. Believe it or not, my nerd self actually looks at educational benchmarks for preschoolers. This stuff was for a Kindergarten kid or older. One of Charlie’s therapists actually said, “they should be embarrassed.”
I get it. It’s the end of the school year, you’re tired, and you’ve got a stack of papers to fill out. I’ve been there. But come on, you’re gonna tell me my kid is horribly behind and then give me a list of suggestions I couldn’t possibly use? Have you really gotten that jaded?
So today, when I saw that same evaluator at Walmart—what do you think I did? Did I smile? or wave? Or maybe stop to chat? Did I put on my big girl panties and let bygones be bygones?
I pushed my cart in the other direction as fast as I could.
Saturday, July 17, 2010
This was definitely one of my favorite units—there are just so many great things you can do with kids that involve jungle animals.
Unit on the Jungle
Goals: The child will be able to recognize each of the key terms.
Wall elephants. We had so much success with our recent faces on the wall that I created some elephants to go on the wall next to Charlie’s changing table. This provides TONS of learning activities throughout the week. Every time he’s on the table he begins reaching up and grabbing whatever we’ve placed there—and we in turn tell him its name. Fantastic reinforcement. This may become a regular part of our units.
Jungle room. This was another on-going learning activity. I decorated the entrance to Charlie’s room with some green crepe paper (also known as vines) and a monkey made out of crepe paper and sticky-backed foam. Every time we go in and out of Charlie’s room we mention the vines, the monkey, and how it’s just like a jungle. Funny hats. I found these hats on the aisles of Michaels and who am I to make things harder than they already are? Dad and I donned the hats and acted like fools. Then we put the hats on Charlie, which he did not find nearly as amusing.
Handprint Monkeys. I’m planning on doing a much more detailed post on these guys for No Time for Flashcards, but basically, we used Charlie’s hands and paint to make monkeys. This was a pretty cute activity if I do say so myself and Charlie’s monkeys are now hanging on my fridge.
Paper Plate Tiger. I got this one from Allie at NTFF. Again, why re-invent the wheel? We let Charlie paint the “tiger” and then I gave it a little face. Super cute and fun!
Book We Enjoyed
I’m tempted to lie here and say that we enjoyed a more advanced book, but the truth is, we liked Touch and Feel Jungle Animals edited by Nicola Deschamps. What can I say? Charlie needs a little incentive to actually look at a book. We’re working on it, but Rome wasn’t built in a day.
Video We Enjoyed
I know, I know! Videos aren’t the best. Studies show that if you sit with your child and interact with the video, they are more likely to get something out of it. For me, I just get tired of forcing Charlie to look at books and this way I have yet another way of reinforcing the information.
Signing Time Volume 9: Zoo Train. The kid is already wild about Signing Time. Zoo Train was a natural fit for this unit and it was available at my local library. I’m calling that a win-win situation.
Wednesday, July 14, 2010
Not long before I found out I was pregnant with Charlie, a good friend of mine announced her own pregnancy. Our due dates ended up being just one month apart.
My friend delivered a healthy baby boy at thirty-seven weeks. In her hospital pictures she was still in full makeup as she held her new bundle of joy in her arms.
Charlie was born a month later via emergency c-section. Half-dead on arrival, I never held him in my arms and spent the rest of the morning alone and crying.
The differences in our experiences didn’t end there. My friend nursed her son until his first birthday. At three months he went into daycare and she went back to work. I wouldn’t dare say things were easy, but they did seem uneventful. Meanwhile, I scuttled back and forth to the hospital for endless appointments and was nursed by a yellow machine named Madela.
In most areas, I have accepted this unusual life that I have been handed. I know how lucky we are. My child is alive, he crawls, he eats, he laughs, he sits. We have so much.
When it comes to my friend’s child, Stephen, I’m not quite so Zen. For whatever reason, he gets to me. I mean, I love my friend and her darling son, but sometimes it’s hard for me—harder than it is around other kids.
Stephen goes to daycare, so he’s not the product of some hyperactive mother hell-bent on perfection. My friend is an extremely laid-back type who lets her child be who he is. Her son is what you get with the regular amount of effort: He walks, he talks, he drinks from a straw. It’s not like he’s solving quadratic equations or anything. And yet, I cannot look at a picture of him without wondering what my Charlie would be doing without the pile of medical garbage he deals with, without wondering what he would look like if he could stand on his own. Or wonder what his voice would sound like.
I can deal with a lot—I deal with insurance companies and appointments. I deal with questioning eyes and worry. I deal with state agencies and impossible decisions.
Sunday, July 11, 2010
A while back I got the crazy idea that Charlie needed to learn a little bit about sports. It was probably World Cup Fever or something, but I started getting a little worried that Charlie would be completely ignorant of sports because of his physical limitations. So I decided to do a Unit on Sports. This Unit was shortened because we were getting ready to go on vacation and I ended up spending a lot of time packing, shopping, etc.
Unit on Sports
Key Terms: Baseball, football, basketball, soccer ball
Rolling. I got these big sports mats at Target for a 1.50. If you’d like, you could make something similar with felt. I put Charlie in the middle of the two mats and then I would say “let’s roll to the baseball!” Charlie’s into rough and tumble so this was great fun for him. When Dad got home, he took it even further and Charlie was flying to the baseball and basketball.
Mini Basketball. Charlie has trouble with throwing. He throws things to the side, but doesn’t know how to throw in front of him. I used this unit as an opportunity to work on this particular movement. He was not comfortable, but I really think that this will help him with other activities like eating with a spoon or fork. As an added learning opportunity, we “threw” the balls near and far.
Sorting. You know what this is—we sort a lot around here. I took one of those party packs with balls of all different types and we sorted two. I think next time we may sort three because it feels like we’ve done this a LOT.
Like I said, a brief lesson! I had several other things planned, but we didn’t get to them. Some other fun possibilities would include:
“Kicking” a soccer ball—if your child doesn’t stand, help them kick a soccer ball while lying on their backs.
Counting—take a selection of sport items and count them.
And as always, songs, and books make great learning tools.
Edit: In a moment of serendipity, I see that Tara has posted this great piece about doing traditional kid stuff with her non-traditional kid! Perfect compliment to this post.
Thursday, July 8, 2010
In no particular order:
1. These red plastic cups I found at Walmart. People like to hate on Walmart, but where else ya gonna get plastic cups? These look about a zillion times classier than the hot pink tumblers we’ve been using for the last few years. Squint hard and you can see the bubble pattern at the bottom that makes them look like antique glass or something. LOVE it!
2. Pelicans. The Gulf thing is still bad, bad, bad, but I’ve seen a few Pelicans recently and that has improved my mood tremendously. I’ve also seen pictures of them releasing cleaned birds on the Atlantic coast, and while I miss them, I’m glad the birds are finding new, clean homes.
4. Charlie’s voice. He doesn’t seem even a little interested in walking these days, but I DO think talking is starting to look good to the C-Man. When he’s really upset, I can ask him to talk to me and he babbles something. I don’t know what, but it’s a start.
5. This video of Caleigh testing out a power chair. I’m dying of jealousy. I can’t imagine what Charlie would do in a chair like that. Honestly, he’d probably head right on over and lick the TV—gotta have priorities, right?
6. My blog redesign. You heard it here first—Bird on the Street is getting a facelift, ladies and gentlemen. I figure I spend enough time on this space, I might as well spend some money and make it look just how I like. I’m really excited.
6. The Blogging With Substance Blog Award that Mo has given me. That means a lot. Substance. All this time I thought I was just word vomiting on the page.
Tuesday, July 6, 2010
Have you met the Gulf Coast?
Have you seen her inviting white beaches?
The Gulf Coast is my beach of reference. I’ve come as a child, delighting in post-thunderstorm waves crashing around me. I’ve come as a teenager, too cool to actually enter the water, worrying about tans, boys, and beverages. I’ve come as a young adult—eager to relax and leave my so-called stresses behind. Now I come as a parent, introducing my own child to the waves and the excitement of finding the perfect sea shell.
This trip is colored with worry, though. I worry that the oil in the Gulf will ruin things, cut short the cycle of sharing this place with future generations. I worry that Charlie won’t remember this trip to see the beautiful beaches. I worry that this place will never be the same.
I hope I’m wrong.
But I ’m not sure.
Friday, July 2, 2010
Charlie was fully vaccinated through two months of age. I’d heard about all the controversy surrounding vaccines, but frankly, we’d been through so much the last thing I wanted was to land in the hospital with some random, totally preventable illness.
When Charlie was four months old, we were in the hospital having a shunt installed to drain cerebrospinal fluid off of his brain (good times). When he was six months old, he started having some very serious seizures, and vaccines were contra-indicated for the treatment of those seizures. So was going out in public. Again, fun times. Really, the first six months of Charlie’s life was one big party. If by party, you mean major medical event.
So Charlie was around one year of age before I got around to even thinking about vaccines again. At that point, after having spent some time in Seizure Town, I was pretty wary of vaccines and the associated risks.
So we waited.
And then suddenly, without me even noticing, Charlie was three with preschool looming before us. Louisiana is pretty lenient with regards to vaccinations and public school, so it was really up to me to decide how much, how many. etc.
I ended up finding this really fantastic book for any of you guys who aren’t sure about vaccinating or who maybe want to delay or even space out your child’s vaccinations. It’s called The Vaccine Book and it is authored by Dr. Robert Sears. What I like about it is that I didn’t feel pressured to do one thing or another—rather, he gives you a lot of options. He gives you a schedule for getting all your vaccines on a slow schedule, he suggests a reduced schedule for people who are nervous about it, he even provides you with the traditional schedule. The book tells you what additives are in vaccines and what the potential risks are.
We’re starting with the reduced schedule and Charlie got his first two vaccines in almost two years last week. He hated them. It wasn’t so much that they hurt—he seemed more mad that somebody DARED to do that to him. Twice. I guess I can see his point.
We started with some of the ones that prevent meningitis and will be moving on to DTaP (diphtheria, tetanus, pertussis) in about a month.
So if you have questions about vaccines, please check out this book! It saved me a ton of research time by putting everything in one place and it did so in a way that didn’t sound crazy and reactive.
Tuesday, June 29, 2010
One of Charlie’s favorite activities is playing with the portable DVD player and fiddling with all of the available buttons. He’s gotten adept and finding his favorite place on the video using fast forward and now days is really obsessed with rewinding the player and hitting the back button.
On some discs, hitting the back back button will take you to all the special features on the DVD. On other discs, you land on the FBI warning page and once you’re there, you’re stuck. No going backward, no going forward, just stuck there looking at the boring blue screen.
Charlie’s doesn’t seem to be able to get it through his head that these DVDs are this way. He joyfully hits that back button and then wails in despair when the blue screen appears. Twenty seconds later, we’re in the same place again. He just can’t understand why he can’t get to the bonus material.
Recently we were in the car with my brother-in-law while the FBI screen meltdown was occurring a few more times than one would like. Out of nowhere, he chuckled.
“What?” I inquired feeling more than a little defensive about my kid’s atrocious behavior.
“Well, I was just wondering if there’s a metaphor in there somewhere. Is there any place in my life where I keep doing the same thing expecting a different result and then getting upset when it doesn’t work out?”
Good question, huh? So I’m asking myself the same thing: am I spinning my wheels somewhere? Wasting my time and energy on something that just doesn’t seem to be paying off?
What about you? Time for a change somewhere?
Saturday, June 26, 2010
Wednesday, June 23, 2010
Someone on my Facebook page asked me if I had any tips to share for people who were approaching their child's IEP. Of course I do. I’m nothing if not full of advice that you may or may not actually want. I’m fun like that.
So, the IEP, it’s like a gang fight, right? You versus them. I’m kidding. Mostly. Really, you want to work with these people so you can all get the best plan for you child. Here are three things I would do to have the best IEP possible:
1. This tip came right out of my comments from Stephanie. She tells us to come to the IEP with a copy of your district’s policies on Special Education or the Wright’s Law book on IEPs. Reading these materials is great, but if you don’t have time, try to make it look like you’ve read them—bend the spine, dog-ear some pages, put a few sticky notes inside. You get the picture. I got similar advice from Charlie’s speech therapist who told me to go with a folder. Actually, she said, “I don’t care if you’ve got your phone bill in there—just look like you’re ready for business.” She’s got her own special needs kid so I heeded her advice on this one.
2. Come to the meeting with your own goals. GASP! I know, right? Isn’t that what the teachers and evaluators are for? Well, yes, but this is one area where I think it pays to do your homework. These people only have a snapshot of your child and you’ve got the whole picture. What do you want them to work on? If you’re not exactly sure, bust out one of those dreadful milestone charts (you may have to drink a glass of wine beforehand), and see what your child has mastered. Your goals should focus on what comes next. For example, Charlie had mastered cause and effect, so as a goal we are worked on sorting. If you survive looking at a milestone chart, you may then want to reward yourself with copious amount of chocolate (or wine—your choice).
3. Bring something that showcases your child’s talents. I brought Charlie’s DVD player, so he was able to show off his skills with fine motor, cause and effect, and his ability to entertain himself. Caleigh’s mom brought their iPad and let Caleigh show off her mad communication skills. So bring a favorite toy, their favorite music—anything that puts your kid in their best light.
So that’s it. That, and some ninja stars should things get ugly. I kid. Many schools have metal detectors—best bring your nunchucks.
Monday, June 21, 2010
A while back, Charlie was evaluated by the office of Persons with Disabilities to see whether or not he would remain on the state’s list of disabled persons. There are several categories—things like “gross motor skills,” “fine motor skills,” “speech,” "self-care,” etc. If you score below the 60th percentile in two areas you stay on the list for three more years. If you score below 60th percentile in three or more areas AND have the appropriate diagnosis, you get on the list for life.
The evaluation included a whole range of things and truthfully there was little I could answer “yes” to. Despite this, I was devastated when I got the call telling me that Charlie was “disabled for life.” It just seems so finite—like there’s nothing I can do. She also told me the parish had agreed to pay to have a wheelchair ramp installed on the outside of our house.
I should be thrilled about the ramp. I knew we would need one—we live in South LA and our house is raised three feet--but expected we would pay out of pocket for something like that. Now, it will be taken care of. Hubby, the engineer, was more interested in that news than in anything else we’ve done over the last few weeks.
I’m trying very hard not to think about the other side of the conversation—the part where my child is disabled for life. The part where he scored below the 60th percentile in three areas.
I can remember being in Elementary School and getting very upset because I’d scored in the 87th percentile on a standardized test. I was horrified and disappointed in myself. I’ve always been a 90th percentile and above—preferably 99th—kind of gal. I do tip of the top.
Charlie doesn’t do average either and it breaks my heart. My beautiful, tiny boy has already failed so many tests. I know, logically, that it’s just a test. I know that they do nothing to describe my child’s potential or even the amazing odds he’s overcome in just three years.
I also know that I have a long way to go before I’ll be good at living on this side of the bell curve. I have miles to go before I learn to fully detach from this unit of worth.
I’m trying, but some days are harder than others.
Saturday, June 19, 2010
Since Charlie is going to be studying body parts when he gets to Preschool in August, I thought it would be a good idea to cover them at home before then. This week we’re doing faces and some other time this summer we’ll do big body parts like arm, hand, leg, etc.
Key Terms: Eyes, Ears, Nose, Mouth, Hair
Goals: To be able to identify key terms on himself, on others, and in pictures.
I will note that since Charlie is now three, I am spending a little more time giving him a chance to “prove” what he knows. Basically, I ask him a quick question and if he gets it right, I make a big deal. If he doesn’t get it right I just move on quickly. No sad faces or disappointment. He’s three for cryin out loud.
Making Faces. Cut all the parts out of sticky-backed foam and then let Charlie put them together (with copious help). Somebody told me they wouldn’t know where to buy sticky-backed foam. I get mine at Walmart or Michael’s Craft Store, but any craft store should carry it.
Googly Eyes. Cut circles out of foam and then I had Charlie put googly eyes from the craft store on each face. You could do this with construction paper too. Once we were finished, I stuck them up over Charlie’s changing pad, which was great because he likes to pull them off the wall and every time he does, we talk about the crazy eyes. Reinforcement, baby.
Magazine faces. I cut out a bunch of eyes, noses, and mouths from magazines. I’d put three in front of Charlie and then ask him to “find” something. We did this activity all week and he got a LOT better at it towards the end, so I feel like we made some progress.
Funny Noses. I bought these funny eyeglasses/noses from the dollar section at Michaels. Charlie wanted NOTHING to do with wearing them, but he had a good time taking them off my face whenever I said, “can you get mommy’s blue nose?”
Book We Enjoyed
A little babyish, but perfect for my book hater. This is one of those books with the little flaps and it covers a bunch of body parts. We’ll probably use it again when we get to hands, feet, etc.
Thursday, June 17, 2010
It’s been almost three years since this happened, so I guess it’s OK if I tell you guys the story now. . . if the cops show up at my front door I’m blaming y’all, though, kay?
When Charlie became very sick, he was transferred to a large, well-reputed Children’s Hospital—one with a very fancy NICU services. One of the missions of this esteemed hospital was to encourage women to breast feed—even women like me whose kids were in no shape to actually nurse. “Nursing” mothers were given a food allowance and free pumping supplies. Right outside the NICU they had a little room with sinks, storage supplies, and a TV where you could go and take advantage of the super-charged pumps that hospitals have. Next door to the Pump Room was an industrial freezer and each woman was given a lock box to store their milk. In the haze of drugs and anxiety, it could be difficult to remember your lock combination, so eventually everyone would ask why exactly we were locking up breast milk. You carefully labeled every container, so what’s with the high security?
That’s when someone would whisper the story of The Crazy Mother--a distraught mother had stolen another woman’s milk because she wasn’t producing enough. Since breast milk is a bodily fluid,it’s considered a bio-hazard for anyone other than the intended recipient. Basically, it was like this woman had poisoned her baby. As far as I know, the baby was fine, but they instituted the lock box policy after that.
Charlie wasn’t in the NICU. Charlie was on a specialized floor called CVICU which stands for “Cardio Vascular Intensive Care Unit.” A whole floor just for babies with heart problems. One half of the floor was traditional ICU and the other side was designed specifically for families who would be taking their babies home. You slept in the room with your child and administered all of their needed food and medications. I’m pretty sure that if you were to wind up in hell, it would be a lot like that part of the floor: the stress and pressure of a medically-fragile infant combined with incessant beeping from monitors and a schedule that would make grown men weep. Fun times.
Since we required to be with our children at all times, they set it up so we didn’t have to go down to the Pump Room any more—they arranged for pumps in the rooms and there was a fridge on the floor where we could store our containers of breast milk. Once a day we would trudge down to the NICU floor and drop off our liquid gold in our lock boxes.
Finally, after two and half weeks on the step-down unit, we were permitted to go home. It took about two wagons to get all of our stuff out to the parking lot. I went back at the last minute with a mini ice chest and collected my milk from the processing room by the NICU and the fridge on the CVICU floor.
You can see where I’m going with this, right? I mean, it’s me—how else could things possibly go? When I got home, I realized that I had accidentally taken the breast milk of another CVICU resident. There it was, clearly labeled with the name of some mystery child. I WAS A BREAST MILK STEALER. I was THAT woman. People like me are the reason breast milk has to be locked up.
I couldn’t think of a good way to return the breast milk—I figured there was some type of protocol that would prevent them from using milk that had left the “chain of evidence” or whatever. Besides, it’s not like I was going to show up and admit to stealing someone else’s breast milk—even if it was a completely accident--so I threw it out.
So there it is. . . maybe people are whispering about me now? You never know.
After reading this over I feel duty-bound to add that I didn't steal a day's worth of the stuff--just one pump's worth. The rest of the stuff I grabbed was mine--I think hers was just too close to the area where mine was.
Monday, June 14, 2010
- The Bird on the Street Facebook Page. I swear, it is just one of my favorite things to check out. People put up pictures of their kids, we share tips—it’s just great. One of my favorite places on the Internet (I’m not at all biased, right?)
- Charlie’s third birthday party. I really debated even having one this year. Typically, he gets completely overwhelmed and has a meltdown. I decided what the hay and went for it. SO glad I did. He rolled on the floor, played a game, and had a great time.
- His new toys. We didn’t go in for a bunch of toys this year, since he spoiled rotten anyway, but he received a few from family and friends. They’re great. He got a guitar that he’s loving a water table with a motor that is just too much fun.
- iPad. Yes, my baby has an iPad—I told you he’s spoiled, right? We’ve barely done anything with it, but oh, the possibilities. I’ve seen what Caleigh is doing with Proloquo2Go and I’m really excited to see what Charlie might do.
- This guy with cerebral palsy who’s trying to get his own travel show. Here’s the thing—I heard he was getting a lot of votes and I was a little worried that there was a pity thing going on. You know, like when William Hung was on American Idol and he was terrible, but people loved him because he was terrible. Well, this guy with cerebral palsy, who is a wheelchair, is funny. Really. I’d watch him on TV with or without Teh Palsy.
- Blogger dinner. I got invited to a local cocktail hour/dinner for bloggers and other Internet-type folks and it was SO FUN. When you go to a national event like Blissdom there are a lot of big-name bloggers, and it’s easy to feel small. It was cool to hang out with a group of people who are completely Internet obsessed AND they’ve read your blog.
Charlie was tasting the water, and then his friends decided to join him! Too cute.
Saturday, June 12, 2010
Tuesday found us back at in the Ophthalmologist's office. We go every six months, so this isn’t earth-shattering, but this time I got a bit of news.
After years of having no idea what sort of vision Charlie has, we seem to have reached a definitive diagnosis.
Officially, Charlie has optic nerve atrophy.
It’s a vague diagnosis that could mean many things. What it means definitely, is that there are areas of Charlie’s brain that have been damaged and as a result don’t process visual images.
What that means for Charlie is less certain. His eyes have become more and more functional and he uses them together more and more. He is able to find the sweet spot when he wants to forward a song on my iPhone and he’s getting a lot better at eye contact. We don’t know if he’s got overall blurry vision or if he’s got normal vision in some places and lesser vision in other places. I’m thinking it’s the latter, but either way, his doctor feels confident that it’s functional.
I should be relieved, but I’m left wondering again.
You see, I had really decided that all this vision stuff was just mumbo jumbo. Every third kid with cerebral palsy has some type of vision diagnosis and they’re all made with what appears to be little or no proof. I mean, how do they separate the physical disability from inability? Different kids will have similar symptoms and have wildly different diagnoses.
But here I am now, with a clear answer that makes sense to me. He’s not blind, he doesn’t have a voodoo diagnosis—I have something to work with. Now, I need to start making some accommodations that might make vision easier for Charlie.
I need to test large print books.
I need make sure I’m giving him high contrast learning materials.
I need to accept that my child’s vision is damaged and start helping him use what he has.
Time to get moving.Pictures from our unit on faces. Also, looking at the camera, eyes perfectly aligned—wasn’t sure I’d ever see the day.
Tuesday, June 8, 2010
I don’t normally go for a gushy, over-the-top birthday post. I don’t particularly care to read them on other people’s sites so you won’t see a whole lot of that here—perhaps it’s basic jealousy at all the achievements I see in other people’s children, perhaps it’s because the love we all feel for our kids just reduces us to lumpy piles of clichés that have been used too many times.
Or maybe I’m lazy. Entirely possible.
On this, Charlie’s third birthday, however, I feel overcome with the urge to commemorate, to mark the occasion, and, of course, to reminisce a little. Quick quiz: how many commas can I fit into one sentence? That last one was a doozy.
Charlie’s birthday was the most frightening day of my entire life. It wasn’t the fear of a final exam you haven’t prepared for, or the acute fear of watching a a horror movie. Instead, it was as if an icy cloud had settled in around me and not one thing mattered: not the needle they jabbed in my arm, not the bigger one aimed at my spine, not the strangers ordering me to get undressed and asking the last time I ate. Nothing.
The sicker Charlie became, the more the fear spread. By the time he came home, it covered every inch of my life and I was consumed with self-pity and dread. I didn’t know what my future held, but it was hard to see how it would be good. Optimism and joy seemed inaccessible.
These days I am so amazed at the tiny person that is Charlie. Is he perfect? Not by the world’s standards. Luckily, I’ve realized that these standards are false and imaginary. I don’t know who created these ideas, but believe me, perfection isn’t a requirement for fulfillment or happiness.
You see, there’s Charlie. Sparkling, beautiful, straight-from-heaven Charlie. Always so happy to see you. How could you ever be scared or worried about an angel like that? This tiny, but whole human being who loves cheesy top 40 music, Mexican rice and beans, and his brand-new wheelchair. A person who lives fully, feels deeply, and asks so little. Away from him, I am incomplete. How could he have ever frightened me? How did I not welcome him with joyous arms?
Simply because I did not see him.
I know better now.
Happy Birthday, Little Man.
Monday, June 7, 2010
Been dreadfully sick, but I’m back on my feet and promise a “real” post soon. In the meantime, I’m participating in Sweet Shot Tuesday, a photography link up. I took this picture over our garage—we were having a gorgeous sunset and I didn’t want to forget it. Hoping your days are equally lovely. . .
Friday, June 4, 2010
Goals: Child will recognize common insects.
Expandable capsules. I found these great pellets in the dollar bins at Target—each one expands into a bug-shaped sponge. Charlie was interested for about ten seconds and then just started splashing water everywhere. Oh well, I thought they were cute. Internet Scavenger Hunt. I saw Allie mention this on Twitter—she and her son look up a topic on Youtube and then watch videos on it. Charlie became interested in a troupe of break dancing bees, so I’m calling it a success.
Counting Ladybugs. What would I do without Allie and her blog? Found this at No Time for Flashcards. I made the bugs out of sticky-backed foam and then we helped Charlie place a certain number of spots on each one. The first bug had one, the second one had two, etc. He liked the bugs so much, we extended the activity by singing a counting song and holding up the corresponding bug for each number.
Bee Hunt. Inspired by the success of the counting ladybugs, I created some bees out of sticky-backed foam, stuck them around the house, and then we wheeled Charlie around and let him “catch” the bees. Another fun activity. Bug in a Bag. Sometimes you find the perfect item, but you worry that it’s too small for your toddler to play with. Using an everyday zipper pouch can solve the problem. Fill one with small items and then a bunch of clear soap. Seal with a piece of duct tape. Let your child explore the items. Charlie found the texture kind of gross, but I did like to see him interacting with smaller items.
For this Unit we went with the childhood classic, The Very Hungry Caterpillar by Eric Carle. All about a caterpillar that eventually turns into a butterfly, the board book is really great as it contains some three dimensional elements. Carle has also written The Grouchy Ladybug that would also work with this unit.