FBI Screen

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.

Hubby and I are big fans of learning from experience and so we let him go ahead and get frustrated—sometimes many times over—before we intervene and change the disc to one that does his bidding.

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?

Never?

It took Charlie almost three years before he started doing this with any regularity. Even though he does it a lot now, I’m not sure I will EVER get tired of seeing it.

Please excuse the goofy outfit—I blame Dad completely.

IEP Tips

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.

Disabled for Life

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.

Unit on Faces

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.

Activities

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?”

Eyeball Pizza. Pizzas with green pepper and olives strategically placed to look like eye balls. Charlie wasn’t terribly impressed with the veggies, but pizza? Always good.

Book We Enjoyed

Toes, Ears, and Nose by Marion Dane Bauer and Karen Katz.

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.

I am THAT Girl

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.

Good Things

1. 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?)
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.

The Eyes Have It

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.

Three

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.

Thankfully.

Happy Birthday, Little Man.

Sunset

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. . .

Unit on Bugs/Insects

Key Terms: ladybug, grasshopper, butterfly, bee, caterpillar

Goals: Child will recognize common insects.

Activities

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.

A Book We Enjoyed

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.

This was a really fun unit to do with Charlie. I had to improvise since most real-life bugs are too small for him to interact with, but overall, I’d call this a big success.

IEP

If you follow me on Twitter, then you know that yesterday I woke up looking like this:

Yes, somehow I developed an incredibly bad case of pink eye. I’m fairly certain that this is because Charlie’s IEP was today and the universe loves nothing so much as a good joke. I went to the doctor immediately, maybe hoping that he’d declare me terribly contagious and then I wouldn’t be forced to go around town looking like the living dead. Instead he told me, “you’re an adult—keep your hands to yourself,” which left me on the hook for the IEP—weepy eye and all.

So today was the big day. Charlie decided that there was no way he could take a nap. This was to be expected—like I said, the Universe loves a good joke and what’s funnier than a screaming toddler? Oh, I know, a screaming toddler who's about to meet a room full of strangers. He screamed bloody murder as I packed the Quickie Zippie into our rented minivan. We were running late, so I put the thing in the van all in one piece. I agree with Barbara that one should try to protect their backs when lifting medical equipment, so I chose to give myself a hernia instead. I’m kidding. Mostly.

We got to the elementary school relatively on time and I got into the building with little incidence except for one of the wheels falling off the chair in the middle of the parking lot. I swear, you just can’t make this stuff up. Some nice people came to my rescue, we got the wheel back on, and then proceeded to the IEP.

I was pleasantly surprised. Despite Charlie’s severely cranky attitude, they all commented on how cute he was and giggled as he diligently pressed the buttons on his DVD player. It’s a good thing he’s cute because Lord Almighty is he a whiner.

He’s going to be in class three days a week, all day. I’m still letting that sink in—my baby is going to be gone all day. Of course, if that doesn’t work for us, we’ll make changes, but with the multitude of specialists who need to see Charlie, I knew he would be in school a lot.

He will have PT, OT, adaptive PE, and assistive technology once a week. He’ll have speech twice a week. He’ll take one meal and two snacks at school every day and have a seventy minute nap. Charlie doesn’t take a seventy minute nap, but I figure that’s their problem. Knowing him, he’ll convince some nice lady to cuddle up with him so he can rest properly.

He’ll be working on all kinds of things, but I’ll share what I remember best: sorting and categorizing, naming body parts, feeding with a spoon, using a PERCS system, and potty training. We weren’t sure about the potty training, but after a lot of discussion we decided to go ahead and give it a try. We’re setting the goal at 50% of the time, though, to give us some wiggle room.

I feel a lot better about things now that I’ve met some staff and have a feel for what we’re getting ourselves into. Up next: figuring out the best way to enjoy the summer.

Pictures from this week’s bug unit—we’re a little behind schedule because of all of our appointments, so unit post probably won’t go up until Saturday.