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.

Change

When I was writing my last post, I went looking around Barbara's site, trying find where she'd written about Down Syndrome. I failed to find it, but became mesmerized by a picture of a child climbing into the bathtub. The picture surprised me so much that I called my husband over to take a look. The child scales the edge of the tub like a miniature mountain climber. I've never thought of that. I mean, it would be quite a feat for Charlie at his current size, but I never even pictured that scenario. Right now I lift him into the tub and in the future I hope to have a roll-in shower. It was black and white in my mind and now, someone had shown me some gray.

You think I'd be used to this by now--the constant change. Ever since I gave birth to Charlie I've felt like nothing is sacred--as if my beliefs have been thrown up into the air to land where they may.

I had to change my mind about parenting. I had to learn that his accomplishments and failures aren't a reflection of my parenting. These are his battles; this is his journey--I am merely a guide.

I had to change my mind about teaching--about learning. I've had to accept that there are things that Charlie will never do--not because he can't, but because he doesn't want to. I've had to accept that I will have to bring him to the learning because he can't always get there himself. I've had to get down on the floor and do things for him so that he can have that experience.

I have to change my mind about independence. In this country we put such a premium on independence, but why? What's so bad about interdependence? Truth is, it doesn't matter--me, my husband, our parents, our siblings--we're all in love with this kid. What do I care if he needs me? I need him too.

I've had to change my mind about intelligence--that holy grail. As someone who was constantly rewarded for her academic achievements, I grew to really value smarts, but I'm starting to see that smarts don't equal happy. I am still completely dedicated to helping Charlie learn as much as he can, but his cognition doesn't rule my world. The ability to find joy in this life is worth so much more.

This boy. . . he's teaching me so much.

The Boy Who Bites

When I first started my Facebook page, I asked what people wanted their children to learn and I read all the responses very carefully. I noticed several parents talking about their child biting, licking, putting things in their mouth inappropriately.

As it turns out, I'm having a similar problem with my little guy.

Charlie has always used his mouth more than he should. When he was very little, he used it when his vision wasn't helpful. This meant that he would often lick something up and down, but the neurologist assured us it was fine.

Well, we've worked diligently in the mouthing area, but then Charlie developed a new and terrible habit--self biting.

Let me say that I don't even want to talk about this. I HATE that he does this. HATE it. For me, it's like he's wearing a badge that says "mentally unstable." I feel like I do a decent job at accepting the things that I cannot change, but I this doesn't seem like that.

It started when he was refluxing. We went through a period where he was out of his Slippery Elm and I guess biting provided some sort of relief. Now, he bites as a stress reliever. Loud room full of people talking? Bite. Stretching? Bite.

So, I've been reading and researching and asking the professionals.

Some kids put things in their mouths for more sensory input. This is what Charlie was doing before. As they age, it's best to offer them appropriate outlets. You can encourage them to feel with their hands or give them something appropriate to put in their mouths. Some of the website even suggested fashioning a necklace out of a chewy material if a child is a mouther. No one mentioned gum, but I wonder if this would help with older kids.

For Charlie, however, it seems to be a frustration relief. I read a story about a girl who clenched her jaw in frustration and actually broke her teeth. I clench in my sleep and have had more than one trip to the dentist as a result. The goal doesn't appear to be self-injury since he never breaks the skin.

The recommendations from both the therapist and the neurologist has been to redirect. So, we've been keeping a multitude of chewy toys around and at the first sign of frustration, we hand it to him. This has helped a lot. I'd love it if he were never frustrated, but sometimes we all have to do things we don't want to--that's just a sad fact of life.

I guess I should also add that if he does get into the throws of biting, we rub his upper lip to make him let go. My husband explained that its some kind of pressure point or something. I might not have been paying attention. It works--rub the upper lip.

So there ya go. A rather painful admission (I don't know WHY I beat myself up about this stuff), what we're doing about it, and some pictures of Charlie sorting Easter Eggs.

Catching Flies: Working With Your Child's Therapists

One the things that I think is most important for the well-being of your special needs child, or really any child, is to do everything you can to work with the professionals in your child's life.

I say, start by killing them with kindness. It's easy enough to get firm and call lawyers later if necessary, but believe me when I say that you can get a lot by just being nice.

I'll use Charlie's Early Intervention services as an example.


When Charlie entered the program at four months of age, he needed a physical therapist, but there were none available so he was assigned an occupational therapist. His OT is a very nice woman, but she has a very full schedule and sometimes she runs late and sometimes she can't make it. I didn't complain about schedule shifts and always greeted her nicely and sometimes offered her a diet coke when she was over. Not major stuff, but nice stuff. I always stayed in the room during therapy and tried to be an active participant (except speech--I have to keep back a little or I try to talk for Charlie).




Our OT ended up calling a PT who was on maternity leave and got her to agree to take Charlie when she came back.

When our speech therapist wasn't working, our OT called up another one that only takes clients on referral and got her to take on Charlie--she's perfect for him.

Our OT brings us hand-me-down equipment when people donate it to her employer.

I treat the other therapists the same. I try to be accommodating--getting upset doesn't make them magically on-time nor does it prevent the occasional cancellation.

Our PT offered to add a second day with Charlie when I got fed up with the private place. She's also offered to attend doctors appointments with us.

When therapists can't make it, they try to reschedule.

Charlie's six month reviews have record attendance.

Our PT got pregnant again and had to assign some of her patients to a PT assistant--guess who she kept?



Charlie's cute, but he's not that cute. I really think that by trying to be accommodating, participating fully in the rehabilitation process, and treating everyone with respect I've gotten some the best treatment around.

As a teacher I know I bent over backwards for parents who called and chatted with me rather than yelled and berated.


With students, I got far better response by praising good deeds than yelling about bad. I could turn behavior around faster with a sweet voice as well. Don't underestimate your smile--it's a weapon.

Sometimes you have to get tough, but sugar can be an awfully good too.

Charlie playing my mom's piano. I know one of them is blurry, but he's using both hands! Had to share that.

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. . . .

Rambling

Jennie over at She Like Purple has a little soapbox that she pulls out from time to time and it's one that I'm especially fond of. Paraphrasing poorly, she says that everybody parents differently. She goes on to say that you can't let yourself get distracted by other people's opinions or methods, but rather you just need to focus on your child and what works for you.

Jennie's child is typical and she's mostly focused on issues like breast-feeding and daycare, but I think the same is true in Special Needs Land (like Candy Land! With fancier equipment!)

In my, still-figuring-this-thing-out opinion, the only thing you can do is follow your gut. Read, learn, study, ask lots of questions, and then see where it takes you. It might be stem cells in China, nutritional formulas from India, or manual compression in Canada. It might traditional therapy. Some parents take the money that other parents spend on therapy and they take their kids on vacation. Some parents thank the Lord when they finally consent to a G-tube. Ours was a complete nightmare and I don't miss it one bit.

Truthfully, I don't think WHAT you do matters as much as HOW you feel about it. Make no apologies.

Do I think I'm doing the right things with Charlie? Hell yeah, but that's the only way I'm gonna sleep at night. Everybody has to find their Ambien.

There are plenty of parents who started ABR with us in October of 2008, but who decided it wasn't a good fit for them. There are parents who pursue therapies that I have dismissed as not for us. Do I questions myself? Yes, but I always come to the same conclusion--this is the therapy for us. This feels right.

I strenuously question the motives of anyone who tries to bully or coerce you into thinking one way or another. If you e-mail me about ABR, then be prepared to get an earful. I LOVE this therapy. It's gentle, it's easy, I do it in my own home with my child in my lap. It's the thing that makes sense to me, for our family. I hate that more families don't have access to it.

I would never push it on anyone, though. I know full-well the path of doubt and confusion that a parent faces when their child is given a life-altering diagnosis. It's a hard. Really hard. It hurts you places you didn't know existed. And that, I feel, is enough pain for one person. Parents shouldn't have to feel even worse for making an informed, loving decision--whatever that decision may be.

I realize this is a bit of a ramble, but it's on my mind. We can only do what feels best. Really. And the rest. . . is for everyone else to sort out.

Those Damn Decisions

You know the expression "you're dammed if you do; you're damned if you don't"? Well, that's how I'm feeling right now.

Charlie's therapist is worried about his hamstrings. His physiatrist is worried about his hamstrings. I am not worried about his hamstrings.

This puts me in a bad situation. Everyone is recommending interventions for said hamstrings and I don't want to do any of them.

Here's the deal: Charlie cannot keep his leg straight at ninety degrees. For those of you that don't understand, if Charlie lies on his back and I hold his leg straight, I can't get it all the way up to ninety degrees. If you stretch him slowly, you can probably get to 85. If you move his leg quickly, it's a lot less--I'm not sure how much less, he tends to tense up if you try something like that.

When he stands, he starts off very straight and as he tires, he starts to crouch. The PT is convinced that this is because of his tight hamstrings. I think it's because of his weak everything else.

The pressure is starting to build.

The PT would love to see him in a stander for several hours a day, but we've got two second-hand standers, neither of which is easy to use and one of which is probably dangerous, so we don't really like putting him in the stander. We do a lot of free-standing in an attempt to make up for this. Buying a new stander is pretty much out of the question because they cost thousands of dollars and we don't have thousands of dollars to spend on medical equipment we're not sure we even want. I offered to purchase a second-hand stander, but the PT was not at all enthused about that idea.

The Physiatrist wanted to give Charlie the muscle relaxer Baclofen, which I refused. Charlie doesn't need muscles relaxers--he's weak enough all ready. He'd end up with decent hamstrings and the rest of his body would resemble spaghetti noodles.

So now the PT is asking about Botox and I'm just not feelin' it. From what I can understand, no one is worried about Charlie's hips. No one thinks that his tight hamstrings are affecting his ability to stand/walk. His hamstrings are not rapidly getting worse--they are changing very slowly.

I just don't see the purpose of it. I'm thinking that maybe somebody should explain that to me? Of all the choices, Botox appeals the most, but it doesn't really appeal. I feel like I'd be subjecting Charlie to an invasive medical procedure to please his doctor and his therapist. Something's out of whack there.


I know that everyone who works with Charlie only wants the best for him, but in this case, I'm not so sure that we're all in agreement. I have days where I just want to turn off the lights and act like nobody's home because it can be HARD to listen to everyone else's opinion day in, day out. I've been burned by medical professionals before, so I'm not going to just do everything I'm told. But then I feel like I'm guilty of child neglect if I don't take their recommendations at face value.

It's one of those decisions.

Pictures taken today at the New Olreans French Market. As kid we always went there to get our pumpkins and now I get to take Charlie!

Frustration, Revelation, and Everything In Between

So today we had Charlie's second annual Really Big Powwow and man was that a kick in the teeth. Or a punch in the gut. I'll let you decide.

I cleaned for almost two hours before everybody got here. I generally live in a state of filth, but things seemed especially bad, and there were two extra people coming--Charlie's case manager and the evaluator. I wouldn't want them thinking I live in complete squalor, so I scrubbed counter tops and vacuumed and folded laundry in a desperate attempt to make my house look a little more presentable. I think I did OK.

So every single one of Charlie's therapists came to the meeting--that's four therapists, the evaluator, and the case manager. I don't actually have enough room for all those people, but we made it work.

The report was passed out and Charlie is severely behind in everything except social/emotional. Wow, that was a blow. I mean, I know we're behind, but seeing it there in black and white: severely behind over and over again--depressing. Later that day I was telling Charlie's Feldenkrais practitioner about it and she asked, "well, how's he doing compared with a year ago or six months ago?" and I really think that that's the problem with the whole thing. They don't know. They can't tell you if he's improving or not. You can't assess the efficacy of your techniques either. He was behind before and he's behind again--at least part of your brain wonders if the hours of therapy and travel and research are worth it or are you just spinning your wheels. If I could change one thing about Early Intervention, it would be that--I'd like some measure of whether or not he's improved in addition to information on how he compares to other children.

But I'm a big girl. I have this blog where I recount progress. I have videos and pictures. I know that Charlie is improving--these evals are just hard.

And then, after skimming over that fact that my kid is a disaster area, they come to the big discussion: equipment.

Quickly, two major points come up--transportation and sitting. Transportation is taken care of pretty quickly. We're buying a high end regular stroller to get us through the next few years. Charlie is tiny, and can ride in any stroller pretty well, so I see no need to waste insurance company good-will on an adaptive stroller at this point. We're holding out for the big kahuna--some type of power wheelchair.

But then suddenly, and without warning, they throw a dirty bomb in my lap. Charlie's OT and instructor really want him to have a better seating situation. They want complete torso support and a large tray so he can work on things like coloring, puzzles, and eating with a spoon. They want to spend less time holding him up and more time working on new things. I think this is a great idea, but the idea of equipment is fraught with issues. First, no one knows exactly what we want. They know they want something, but overall I'd say that knowledge of equipment is pretty limited in my area. Second, equipment is expensive, so you don't want to buy something that's not a good fit.

This one offers a tray attachment, but it looks huge.

So I google "Special Tomato" because someone somewhere on the Internet has one and I remember the name. Well, that brings up an entire website of adaptive, positional seating--it's like Pandora's box of ugly medical crap. And it is ugly. I swear that if I ever get to the point where I'm making money instead of spending it, I'm going to to do two things: one, start a scholarship fund for parents who want to pursue alternative treatments for their children and two, design some medical fabric that doesn't make me want to barf. I mean, even the stuff that's less ugly is still pretty unattractive. The Special Tomato is actually getting cuter so that's a plus. It comes with a LOT of options, though, and since I don't have a crystal ball, I don't know what a good option would be for us. I know I need a tray--do I want a tall seat or a low one? Do I want a wheeled base? Do I want it to be more portable or more integrated into our home life? THERE ARE TOO MANY OPTIONS! And, of course, there's no way to test it out or even better, to test out multiple options to see what would be best for you. I'm going to makes some calls tomorrow, but my PT didn't know of a place that handled kid's equipment and my Internet search yielded nothing as well. Ahhhh, the south. I'm going to have to make a thousand dollar decision based on some teeny-tiny Internet pictures and manufacturer-provided descriptions.

This one doesn't have a tray but can be put on a regular seat at a table.

So there you go: I've got research to do on seating options. The eval has spurred me on and I'm going to try to integrate reading books into our daily routine a little more. I've got our usual seven appointments a week. I've got ABR hours to get in. I'm still doing research on alternatives to Phenobarb. And, I don't know if you've heard this, but there are only so many hours in the day.

Sigh.

Stating the Obvious

Charlie is enrolled in our state's Early Intervention Program, Early Steps. Like any state agency, the amount of pointless paperwork is high. Luckily, I spent a couple of years in Special Ed so this isn't exactly unfamiliar territory. This week Charlie had his second "annual evaluation," which is designed to see if he still needs to be receiving services.

I used to be pretty excited about evaluations, but these days my enthusiasm has distinctly waned. They seem pointless--I know we're behind and even if we weren't we have a diagnosis (or a handful of them) so we get services either way. This is truly just a formality.


And it's an annoying formality. Not as annoying as guys who wear baseball caps sideways, but maybe the same as guys who wear baseball caps in restaurants. Side note: What is with the sideways cap? I get individuality. I get fashion as a form of self-expression, but this is just a copy of a look that was pretty horrible to begin with. And what kind of woman dates the sideways hat man? ARGH.

Back on point. So they ask you a question. You answer it. And then you have to "prove" that your answer is accurate. Again with the argh. They know that kids and dogs are different, right? Buster will sit and roll over repeatedly for a dog treat. Charlie is a little less compliant. Perfect example: A year ago, Charlie could play a mean game of peek-a-boo. This year, however, he's two and he shows zero interest. I don't think he's forgotten how to play peek-a-boo--I think he thinks it's boring and childish. GO FIGURE. He's two. He also plays with more sophisticated toys, watches TV, throws temper tantrums, and can be reasoned with (some). I mean, he's at a different developmental stage. So I can't prove that he can play peek-a-boo, but I can promise you that he does.

You should see the toys that they bring to entice him. I mean, come into my house and it looks like Toys R Us threw up in there. Each room has it's own set of toys--every single one of which looks like a it could cause some kind of hallucinogenic effect. One has so many pulsing, blinking lights that we actually call it "the seizure toy." That one is, of course, Charlie's favorite.

The testing kit comes with a plain, two-piece plastic puzzle. Or a blue cup and red block of wood. Charlie just sits there looking at these things like, "who in the hell left this crap on my tray? Got any toys? How 'bout an iPod?"

At one point, after he stared blankly at the cup and the block of wood, I asked what we were tying to get him to do. "I want to know if he can sense spaces--that the block of wood can go in the cup." So I got out our giant, light-blinking, carnival-music-playing gumball machine from Fisher Price and he happily tried to put gumballs in that. I mean, does he look like a chump? Put a cube in a cup--as if.

At the end of the evaluation came several standard questions that I've answered in the past. One of which was, "what are you concerned about?"


Here's how you know I'm a crackpot: In my head I thought, "nothing really." I mean, I know we're behind. I know there are issues. I also know that I'm doing everything in my power to help give Charlie the best life possible. So he might be in a wheelchair. Really, so what? I've come to terms with that and a whole host of other what-ifs. I can't afford to waste any more time worrying about that. I'll deal with the future when it gets here.

The evaluator also tried to probe me a little to see if I was worried about Charlie's vision. Again, I told her that I wasn't and again, crackpot alarms should be going off in your head right about now. Here's how I see it: I know he sees some. He sees the television and the computer. He sees a cell phone in your hand or an iPod. He sees toys on the floor that interest him and he crawls towards them. He looks towards unfamiliar noises. The eye doctor is unable to detect any field defect and Charlie can track a slow-moving object. His vision isn't perfect, but neither is mine. If later in life I find he does better with some augmentative devices, then fine, but he's not blind and he uses his vision quite effectively when he feels like it. I can't make him look at things if he doesn't feel like it, and he doesn't use his vision if he doesn't have to. These are deficits, but not a worst-case scenario. I don't think he's going to grow up to be a photographer. But that's fine. Really.

They'll be getting back with me pretty soon with the results. I'll keep you posted.

Wrapping Things Up

Unnnamed piece done for a friend who requested a purple and yellow fleur de lis.

Well, I called and scheduled an appointment with the neurologist. They couldn't get me in until The second week in October, so I've got a little more time to get prepared. I'm waffling. I'm scared to death of the idea that Charlie could get hurt and it would be MY FAULT. It would be different if my husband and I shared in these decision more equally, but for the most part, he's scared too and wants me to pull the trigger.

I have found what I consider another option: I'm considering asking the doctor if we can try Keppra. Doing a little research I found this web site: Crazymeds. It's not written by doctors or anything, but that's kind of why I like it. It's written in language I can understand and you can tell that the author is pulling info from a number of sources--not just the write-up from the drug company. It's still in the process of being created, so not every medication has a full write-up, but it you or your child is taking something that affects their brain then this might be worth a look-see.

Ok, enough about Crazymeds--Keppra! Keppra seems to have less of that sleep-inducing effect that you hear so much about with anti-epileptics. I've also had at least two parents on here leave positive comments about Keppra especially when compared to phenobarb. The only real issue as I see it is that Keppra is only approved as an adjunct for most seizure types (needs to be taken with something else). Of course, we don't even know if Charlie is actually having seizures--he's just high risk--so who knows what the doctor will say about that. There are also regional issues that you just can't account for--different parts of the country tend to favor different types of drugs. I guess I'll just have to wait and see what the doctor says. Patience is not one of my strong suits.

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I'm also waffling on the Mother's Day Out thing. I KNOW! I am so indecisive, right? Thing is, it's not cheap. Also, it would take Charlie away from me for about five hours. I'm not sure if it would be a good thing--yay! I can get all my errands done! Or a bad thing--bah! that's just more time where we're not doing ABR or lessons. I am considering not doing MDO and instead getting Charlie into a monthly respite night. Basically, kids with mental or physical handicaps go to a church for three hours and sing songs, play games, and eat a meal. They are assigned a helper and everything. This would be good for several reasons: social interaction AND it wouldn't interrupt the hours of the day when we normally have lessons/ABR. And I can't deny the greatness of getting a Friday evening to myself once and a while.

I guess it would also be worth noting that Charlie social anxiety seems to be getting better. When we took him to the aquarium it was SLAMMED with kids and mommies and strollers and he did just fine. He just concentrated on the fish.

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I guess I'll also comment a little on his physical progress since I know there are people who want to know about this stuff. Charlie can now climb an eleven inch step on his belly. He is also actively trying to push himself into a sit. He hasn't mastered it yet, but the intention is there and so is the movement--he just needs to get a little more comfortable shifting his weight onto his right arm. A final, smaller, but still important improvement is that he is starting to use a pincher-style grasp when he plays with his puzzles. We're inching along over here, and it's all good as far as I'm concerned.

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I could go on and on with the updates, but I'll give you a break now. I just wanted to add one final thing. Anat Baniel is a Feldenkrais practioner who broke off on her own and developed a whole practice working with children. She's giving an all day web lecture online this Saturday. To go in person would be almost two hundred dollars. The web version will be fifty. Just something you could check out if you were interested.

On My Mind

It would be great if I could get together a coherent paragraph about anything, but that doesn't seem to be in the cards this week--I just feel all over the place.

We've got the tantrum thing in a good place and it's been a few days since we've seen a major explosion. There are people who will frown on this, but basically, Charlie likes to have music on. We either play a video or my iPod and he's fine. He'll play on his own, crawl around, whatever--he just doesn't go for the silence. I don't know what the deal is, but he's generally happier, so I think it's fine.

One interesting thing happened this week, though. I showed Charlie a braille book. The vision therapist brought it over when he was about four months old and I stuck it on the shelf and haven't looked at it since.

Charlie hates books. They disgust him and I have no idea why. I showed him the braille book, however, and it did get his attention. I'm not sure what the deal is. Is the print too small in regular books? Is it too difficult to run his eyes over the text? I don't know. I do know that he seemed to like the braille book. I'm going to try a couple of other things as well, but I'm definitely keeping it in mind that he liked the braille book--food for thought.

In gross motor, Charlie is kicking complete ass--we raised the step for him to pull up on, and he had it mastered in about half an hour.

I'm also TRYING to teach Charlie a little independence. In general, I pick Charlie up and move him from room to room. We have a schedule and it is largely dictated by me. I'd like him to have a little more independence. I'm trying to show him that he can, in fact, move from room to room without me. To do this, I'm plopping him down in the hallway near his room and the den. So far, he just sort of looks around confused, but I'm hoping he'll start to figure it out.

So. . . that's what we're up to over here! Tomorrow I go to the dentist because I've started grinding my teeth--gah!

Highs and Lows

Well, I'd like to put up a big ole post, but I went to type it and found myself blank. I guess days away from the computer can make you blank.

Anyway, the good news these days is that Charlie has started to pull himself up onto low steps. He does it from a prop sit and he also does it from the belly-crawl position. His PT is over-the-moon excited about this new development and so am I.

We are managing the tantrums. Time out in his bed seems to be effective. We're also pretty much glued to our schedule, but it's working and that's the important thing.

On the downside, my PT is ready to have a medical equipment vendor come out to the house and help us figure out a good wheelchair option for Charlie. You see, before we know it, Charlie will be going to school and we're going to need a good, supportive option to get him through the lessons. Right now I just cart him everywhere in an umbrella stroller, which probably won't be an option for very much longer. I'm not upset about the wheelchair part. There's this handy chart that helps put kids with CP into distinct categories. Charlie is easily a III. If I follow III all the way into adulthood I can see that he may need to use a wheelchair--especially for long distances.

I want to be clear about something--I do believe that ABR and Feldenkrais will help him make gains that this chart doesn't account for. We're already starting to see him make reciprocal movements with his legs, which is more common in II's than in III's. He's also pretty good at playing in the sitting position although balance is definitely an issue. But, he's still got a long way to go, and I don't think it does him any justice to keep him from interacting with others on their level.

So pretty soon I've got to pick a chair. And that's the yucky part. I wish there was a manual! I imagine it's very hard to decide these things and insurance companies only pay for one wheelchair every couple of years, so I better get it right. The pressure! Gah!

In No Particular Order

I'm starting to wonder exactly when I'm going to get back ownership of my brain--it doesn't appear to me any time soon. It started with deciding to enter the art expo and while that event has passed, the craziness has not.

We were in Plano last weekend and this weekend we had house guests. We had two appointments at the hospital today, we visit the eye doctor tomorrow, and next week we're off to see the physiatrist.

We had a sleep-deprived EEG this morning. I swear, no matter how little sleep he gets, putting Charlie in that environment always makes him hyper. They give me dirty looks every time and meanwhile I want to lie down and take a nap because I'm sleep-deprived too. These things always feel full of anticipation, but the reality is that Charlie has abnormal brain waves, and unless he starts seizing again, we'll probably maintain the status quo. Doesn't mean I won't worry until I get the report from the epileptologist, though.

After that we headed downstairs to have Charlie's hearing checked and his ear tubes examined. He actually responded to some of the sounds this time. He does appear to have SLIGHT hearing loss (he can hear down to 25 decibels and normal is down to 20), but no one is worried about his hearing at all--least of all me.

Tomorrow we go see the eye doctor, which might be interesting, but could also just be a big waste of time. Our neurologist is pushing for an assessment for eye surgery, but I am completely unconvinced that this would be an appropriate tack to take. I mean, his eyes have changed dramatically in the last six months and I would hate to start messing with them while they're still changing.

I'm also a little worried that next week people are going to start talking Botox for Charlie. Charlie's hamstrings have been tight from day one and while they don't appear to have changed much, his PT is worried that they are impeding his ability to stand and shift weight properly, so she's going to go with us to our physiatry appointment next week. I think a bigger culprit is the fact that we are currently without a stander OR a gait trainer, but nobody asks me what I think. I'm not sure how I feel about Botox--I mean, it's not permanent, but it is painful. It would give him a chance to use new muscles, but I just don't know. I'm undecided. Now, if they wanted to Botox the thumb on his right hand I might be interested in that. Hamstrings, I just don't know.

Well, that's what we've been up to--I let you know if I ever find out what I did with my brain.

The Part Where I Freak Out

So, it's after one in the morning and I'm working on my web site that needs to be finished by Saturday. Saturday I'll be handing out little cards with my web address on them, so I'm understandably nervous about the whole thing.

I've had a couple of serious freak-outs where I decide that I've lost my mind. Lost it.

But then I pick up my to-do list and get back to work.

Despite my best efforts, life in general continues to happen and we've had therapy and doctor's appointments this week.

We visited with the ENT and have ear tube scheduled for next Thursday. I had a nightmare about the whole thing, but then he's been tugging on his ears again, so I do think that this is the best course of action.

Charlie had to get a hearing screening before he saw the ENT and he flunked with flying colors. Fortunately, everyone involved took my word for it that he has excellent hearing. They just didn't have good enough noises! There's no way Charlie is going to turn his head for a loud static-y sound. Hello! It's hard for him to move around--he's not moving for static. For Lady Gaga? Maybe.

The ENT did comment that he seemed to be doing extremely well despite his diagnoses and I couldn't agree more--he's doing fabulous these days.

He still has no interest in standing, but he kick butt in his floor work. His kneeling is continue to look great. He's really pushing up his upper body, and making attempts to get up on a little stool while crawling and today he--gasp--got his booty clear off the floor. Basically, the back half of him looked like he was true crawling, but his front half was in the commando crawl position. Still--that's major progress for us.

The no standing thing is starting to freak out his PT and she's hinting heavily that she'd like me to take him in to see the physiatrist to get a hip x-ray. We're due to return in June, so I guess I could move it up a little just to please her. Yay! Another doctor's appointment!

And the other big news is that Charlie has seriously increased the use of his right hand. I feel like I'm always saying that, but twice in the last week he's tried to feed himself using it and he's even passed things from his left hand to his right, which is just incredible. His right thumb is still pretty disagreeable, but he's definitely starting to realize that his right hand might be good for something.

So. . . I'm freaking out, but Charlie is good.

Can't wait til I have real time, so I can write a real post.

Poking My Head Out

I'm in the throes of becoming a business woman this week, so please don't expect this to written or edited very well. Also, if I didn't comment on your blog, I still read it. . . I just don't have a lot of time, so I'm reading on the go!

This weekend I began stocking the shelves of my online store. . . boring! I had no idea I'd be so bored, but it's basically data-base management and that isn't really my cup of tea. I also continued to finished up art pieces so I'll be ready to go on May 2nd with a full body of work. I set up a practice booth to iron out any kinks and I think I'm pretty much ready to go on that front. My college buddy is going to help me out with manning. The event is mostly about publicity--not sales, so I also designed a little postcard to hand out to people who pass by. I'm still waiting on my tax ID number and as soon as I get that I'll be able to open my very own business checking account.

Things with Charlie are pretty much simultaneously great and not-great. There is SO much that he's doing. When we hung out with Erin in Dallas she introduced the concept of getting Charlie to make various sounds. Before that, we had pretty much no idea how to get him to vocalize. Erin was doing an example and Charlie caught on right away. Now, he can do some "a" and "i" sounds and we're working on "o." For the record, I know the exact symbols that represent the sounds he's making, but I don't actually know how to get Blogger to make those symbols.

He's begun crawling up to things and putting his hands up on them, showing up that he wants to pull up.

When we put him in the kneeling position, he actively pulls up and gets his hiney off of his legs.

He's using his vision so much more that it astounds me. Today at Picadilly I almost cried because he was just sitting there, eyeing his food, and opening his mouth each time I tried to feed him a green bean. There was a time when I NEVER thought he would do that.

Today he even began trying to get his bottom off the ground and into the crawling position.

So much good, right?

But he's also really struggling with standing--well, he's not struggling, he's just not doing it. And he's been refluxing again, which we haven't had a problem with in ages.

So, I'm focusing on the negative, I guess. Probably the stress from one area just spilling over to another area.

Anyway, I told you this might not be coherent, and now I have to get back to that beckoning to-do list!

This and That

I swear that I'm going to try to get a little more consistent with my blogging one of these days. I really do have plenty of stuff to talk about--I just struggle with coherent thought by the end of most days. So. . . in no particular order. . . here's what's been going on.

Charlie will be two in June and it's starting to show. He pretty much only wants to eat spaghetti o's or whatever my husband and I are having. We're having to switch gears pretty quickly and start getting him his own food when we go out. I suspect we're going to be completely done with toddler meals pretty soon.

He's also decided that he does NOT want to poop in the potty. I'm a little blue, but also a little happy since this is a pretty regular kid thing--I love it when my kid acts like everybody else's kid!

Our combo of ABR and Feldenkrais really seems to be working for Charlie. He's really starting to use his right hand more, although it is still less cooperative than his left. He doing a great job in kneeling position and he's getting really good at pulling up to a stand. Also, he's starting to use his legs when he commando crawls.

Our local early intervention bureau is reviewing our equipment requests. I am DESPERATE for this stuff, so let's all cross our fingers that it all gets approved.

Charlie's been working on communicating with a borrowed Cheap Talk 4. He understands how to use it, and understands what each button is for, but I don't think he "gets" that this is how he's going to communicate with us. Basically, he thinks it's a funny game. The understanding is there, though, so his speech therapist can't wait to get him on a more advanced system.

I guess the final bit of news is that I've come down with a case of the crazies and am seriously considering participating in an art expo in three weeks. I'll have to go full-speed for the next three weeks to pull it off, but it's a great chance for exposure and it's free so I'm thinking about going for it. I've always been a last minute kind of gal, so this may be just the way to jump-start the s-l-o-w process of starting a business. I'll know for sure my Monday afternoon, so I'll keep you posted.

Runnin' Me Ragged

Charlie is feeling about 100% better, but now Hubby and I are in the throws of allergy attacks. There's sneezing, and running noses, but worst of all are the allergy medicines--at this exact moment I feel like I'm high or something (I'm not exactly sure what being high feels like, but I would think it's something like this).

Meanwhile, Charlie is feeling better and showing off. Therapy is going well, his teacher today raved about how smart he is (yay!), and he's getting into everything. Just to prove that. . . he crawled over to the dog bowl yesterday and started drinking out of it. Most parents probably would have taken them away from the bowl, but I ran to get my camera.

Weight Shifting

Our PT has taken back our loaner gait trainer for a bit, so we're practicing weight-shifting the old-fashioned way. I swear I don't sound like that in real life!

Six Month Review

We had Charlie's six-month review today and it was quite a doozy. All four of his Early Steps providers came, and his case manager. That's a lot of people. Looked like I was having a keg party at ten-thirty in the morning.

So. . . people came, we made new three month and six month goals and then talked about what kinds of equipment we're going to try to order. I peeked back to see where we were six months ago and I was happy to see all the progress he's made. Not at the rate of a typical child, but plenty of progress none the less. He's commando crawling everywhere now--to the point where I really should child-proof. He's especially drawn to power cords, so that's not a good thing. He also made a beeline for a bottle of Windex once--the bright blue color was just irresistible. He can prop up in front of toys and play with them and he can stand up while holding on to something like the couch. His new goals include holding the quadraped position and walking with assistance five to ten steps. I can't believe we have a walking goal--that is simply amazing to me. We're ordering him his own Rifton gait trainer (his current one is a loaner), and some arm prompts, which will supposedly make using it easier for him.

In fine motor we're going to work on stabbing food with a fork and then scooping food with a spoon. Also, we're going to work on using a regular cup since Charlie prefers that to the sippy cup. I think we might try a straw as well, but so far he finds them very offensive.

In instruction we're going to work on colors and shapes, which I think he'll do OK with. We're also going to work on using two toys together and I can't for the life of be figure out how we're going to get him to do that. His instructor is going to print out a list of suggested activities, which is good because right now he's not doing anything like that.

The thing I am most excited about is that we are ordering a Go Talk 4. Basically, it's a board with several pre-recorded messages in it. Charlie will be able to use this board to tell us what he wants. I would LOVE for him to be able to tell me he's hungry. Really, that's so important to me, so I am REALLY excited about this decision. This doesn't mean that we won't continue to encourage Charlie to talk, but we're not waiting around for his motor skills to catch up with his cognition. Now, he can communicate with us in a more age-appropriate manner.

Other than that I guess I'll mention that I think Charlie STILL has an ear infection. We're going back to the doctor tomorrow. People are starting to warn me about tubes in the ears, but honestly, I want this ear infection gone. He's crabby, therapy is still sucking, and I am tired of watching him mutilate his own ear (Ok, it's a little scratch, but you get my point). I'm going to have to buy an industrial-sized Motrin at this rate.

Plano, Baby!

Well, we're sitting at home today while Charlie recovers from what must be his gazillionth illness. At this time last year, we were on house arrest and he was barely sick at all. This year, we're free to move about the country and he seems to be picking up EVERYTHING. This week it's a head cold of some type, which means sleeping propped up in the Boppy with Eucalyptus oil in his shirt. He's a toddler, so he hasn't grasped the concept of taking it easy. He'll crawl around for a bit and then cry because he's tired. We're not having therapy, so the day is stretching out in front of us with not a thing in store. It's pretty frightening.



We're resting up big time because on Thursday I'm driving to Plano, TX, for more ABR training. In case you've missed it, ABR is the alternative therapy that we do with Charlie to help with his cerebral palsy. I am SO FREAKIN' excited to be going to Plano, and believe me I couldn't care less that it's Valentine's weekend. My SIL is coming along for the trip and we're going to eat at Taco Cabana, do a little outlet shopping, and spend an evening watching television that our husbands don't approve of. Good times. Also, I'm going to have the chance to see some of the wonderful families that we met in Canada during our first training session. And, of course, there's the fact that I will be learning some new exercises to help improve Charlie's quality of life. He's gotten SO much stronger over the last four months and I can't wait to continue with that improvement.



As I'm writing this, I look over at Charlie who used to SIT on his right hand it was so useless to him and I am amazed to see that he is grabbing part of his Nursery Farm with his right hand. It takes a lot of concentration to use it, but today I'm thinking that CP can suck it!!!!! Hi-ya!