Lookin' Up

Well, I think I'm recovering from yesterday's battle and I know I have another one on the horizon--we visit the neurologist next Wednesday. Hey, maybe that'll be easy (a girl can dream, right?)

It's not all tough stuff over here, though. After looking through our benefits book, I believe that our insurance company will be covering the full cost of the wheelchair. I'm, of course, not counting that chicken until it shows up, fully-paid in my living room, but it's a nice thought.

I also completely forgot to mention that I took Charlie to Story Time at the library last week and I'm definitely putting that adventure in the success column. I went early, introduced myself and Charlie to the librarian and gave her a one-sentence explanation of his issues. She was so completely nice and wonderful to him and in true Charlie style he turned his head and closed his eyes. Five other children came in a gaggle and two stories were read and two Raffi songs were played that the kids all danced to. Charlie is very shy and kept his eyes firmly closed the entire time. I did notice, however, that during the second story his eye lids started to flicker like he was trying to peek out at everyone. When it was finished the librarian came over to say goodbye and he actually opened his eyes and looked at her. In my book that's a smashing success and we'll be going back next Friday.

I'll admit that I never wanted to buy my child a wheelchair, but that's past me now. Just spending the day with him today, made me notice how much he's growing up and changing. My confidence in him isn't unfounded--he is amazing.

Decisions, Decisions

Well, the wheelchair man has come and gone and I'm flattened from the whole thing, but it's done.

After reading the comments people left this morning, I was certain that I would not be happy with a stroller-type wheelchair. If we had to have special seating then I wanted the real deal--a wheelchair. I told the rep as much when he arrived and he agreed. His belief is that kids who will be good candidates for power chairs should start off in regular wheelchairs. That way, when they eventually move up to the power chair they'll have a back-up chair for days when the power chair needs servicing.

Made sense to me.

Unlike some some other places, there are no showrooms of wheelchairs in the New Orleans area and I pretty much have to go with the dealer's recommendation. He recommended the Quickie Zippie which come in two models: the GS and the TS. The TS has the option of tilting back to allow the person to rest. The GS can be moved by the child independently. I felt strongly that the room (the rep, the OT, and the PT) wanted me to choose the TS with tilt.

I wouldn't agree to the TS, though. The TS cannot be self-propelled. This means that the chair would only be pushed by me and Charlie would have no chance for independent mobility. I have no idea whether or not he'll be able to propel a wheelchair at some point. Right now I'm not sure if he has good enough use of both arms, but I hate the idea of making it impossible. And since this will most likely be his back-up wheelchair for as long as ten years, I just can't feel good about that. When it comes time to purchase his power chair, we'll address the issue of tilt again, but for now I'm more interested in independence. He probably won't be spending long hours in the wheelchair at this age, so I'm less concerned about fatigue. This is a stepping stone to what we really want--some form of independent mobility.

So we went with the GS in yellow with charcoal cushions. Charlie will be embroidered in yellow on the seat. Those decisions took about five minutes, which surprised the dealer. He said that picking colors is usually the longest part of the process. I won't get into how much it scares me that parents are more interested in colors than in the actual chair.

With the PT and OT there, there was also a lot of talk about standers, positioning chairs, and the fact that Charlie will be aging out of Early Steps in June, which is less than a year away. There will be many more decisions to make then. At that point I was pretty spent. I have some ideas regarding the stander and chair, and I'll keep you posted. All the wonderful advice I received on my last equipment post was extremely helpful.

It's hard to pick out a wheelchair for your child--I'm more emotional than I expected to be. Rationally, I know that this is a good thing, but my tear ducts don't seem to get that. I also worry that this meeting is just a sign of things to come. A foreshadowing of many more meetings where my expectations for my child are so much greater than anyone else's. I'm a little exhausted thinking about it.

Full

I'm due for a new post, but my brain is so full of ideas this evening that I really can't find a way to get anything coherent out. I actually worked for quite some time on a post, but I'm just not quite ready to send it out into the world, so today I have nothing.

I have a medical equipment representative coming out to my house tomorrow. Charlie's PT and OT will be present and hopefully he'll have some ideas about what types of equipment will work best for Charlie. There are a lot of emotions and thoughts running through my head and hopefully things will be a little more settled tomorrow. Charlie's PT is lobbying hard for a wheelchair. This is a radical departure from where we were just a few days ago, so I'm still sorting out my feelings. Am I the only one who thinks it's silly to order a wheelchair for a two-year old? I mean, if he could use it to move himself around then that would be great, but I suspect I'll be highly encouraged to buy some souped-up stroller and that seems ridiculous for a kid with who can sit in a regular stroller easily.

Charlie's just a tough case because he's so complete Moderate in his disability and his PT agrees with me so it's not just me being irrational. He not so disabled that he obviously needs things, but he's disabled enough that his physicality holds him back. Too add to the confusion, my husband hates the idea especially since we'd just picked out a really nice stroller that we thought would last us a few more years.

Like I said, hopefully tomorrow will bring some clarity because right now I have no idea what I'm doing.

What's The Point?

So Barbara is doing a blog carnival as she does every year and this year I missed it because I was too busy stressing myself out over the purchase of equipment. I'd had a story in mind that I really liked, though, so I wanted to share it even though I missed the official carnival.



I've already shared with you guys that the days after Charlie's birth were hard. I think it was even harder when I brought him home five weeks later. The hustle and bustle and distraction of the hospital was gone and it was just me and my tiny baby whose future was entirely unknown.



I wanted to go see a counselor and to do that I needed to go see my family doctor and get a referral, so I went to the base to get my referral. Visits to see a base doctor are never quick, so I sat and waited for quite a bit. People would come by and coo at my tiny, sleeping babe and all I could think was "get me out of here." I was hard-core into the bargaining phase of grief at that point. I would think things like "just let him suck his thumb, God, and I know he'll be OK." I also asked God to send me a sign constantly. I was asking and asking and asking--it's like I wanted God to call me on the telephone and say, "Look, he's gonna be just fine, OK?" So there I was, waiting, asking God again to send me a sign and then this guy walks by.



You know how some people talk really loud on their cell phones? Well this guy was doing that and this is what he said:



You need to stop asking yourself why this happened to you and you need to start asking yourself why did God bring this to me?



That was the message I needed to hear.



You know, God didn't do anything to me. He didn't stand on a cloud, point a thunderbolt at me and declare that I'd be getting a disabled child because I missed church on a Sunday or cheated on a test in the eleventh grade. If that were the case, then surely there would be a lot more disabled children in the world. I think the universe is big and awesome and completely unfathomable. I think that trying to rationalize everything is a small view and it undermines the power of God. I remember being a kid and pressing my face up against the television (wow, I sound like a weirdo),and all I could see were bits of red, and green and blue--no distinct image. I think life is like that. All we can see is the little bit that we're closest to and the big pictures is obscured. We're just little specks of color in a larger masterpiece.



But I'm not trying to make you believe what I believe. Regardless of world view, I think that we all know that sometimes bad things happen to good people and it's troubling. What I'm trying to say is that I had lost track of my faith. I'd started trying to make sense out of a world that is entirely too complex for me to fathom. If I was going to personalize it, then I needed to change my view. Stop wondering why things happen and start wondering what can be done with them. What could I do with my current situation? How could I use it to grow and become better? I needed to stop putting a judgment on something that I hadn't really experienced. I was frightened to death of disability and really, I knew nothing about it.



I'm not saying that I immediately had an answer. I don't know if I have the answer now. What I do know is that I needed a change in my point of view. I needed to stop looking at Charlie's medical problems as a punishment and start looking at them as a new opportunity. I could rise to the occasion or not. I could become better or I could stagnate. The guy on the cell phone wanted somebody to change their perspective--to stop judging something as negative--I needed to do the same thing.



I still try to bargain with God sometimes--I'm only human--but it's less fervent now, less panicked. This thing I have going with Charlie, it's our thing. It's an opportunity for me as well. Being his mother has made me stronger, more assertive, and less worried about the small things. I believe our journey has made me more tenacious, more faithful, and less complacent. I am proud of the person I have become and sometimes, I feel like I'm growing as much as he is.

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.

Good Things

In no particular order, some things that make me happy:

Bones on DVD

Chocolate chip cheese ball (mine doesn't have any butter).

My brand-new purse in a mustard yellow for fall (don't worry, I got it on deep discount).

Books from Overstock.com--cheaper than Amazon and cheap shipping too.

The Tigers having a winning season.

The Saints doing well too.

and. . . .

Charlie getting himself into this position all on his own:

Of course once he was up there he had no idea what to do, but I'll take it. His butt was even higher when he started, but we had to run to find the camera.

Opinions Gone Wild

Well, I've still got some great education questions that I'd like to answer, so I'm back on that today. The Colonel and Luckeyfrog asked two questions that I think dovetail nicely, so I'm going to answer those today.

The Colonel wanted to know when school became so "student-focused." He seems to feel that many excuses are made for kids these days and that teachers are bending over backwards to accommodate them. He clarified by saying that he didn't mean children with documented disabilities, but just regular kids.

In my opinion, there's one big reason for this and then a couple of smaller ones. First and foremost, in this country, education is a right and not a privilege. Regardless of how well a person does or whether or not they show any interest, a person is still required to attend school for most of their young lives. In many states the age a person is allowed to drop out of school is seventeen or eighteen, which means that they will be in the system until adulthood. Furthermore, most states have every single student on a college-prep curriculum.

Piled on top of that are the requirements that teachers have. Teachers are judged on many, many criteria including the number of students who pass their class, the number of students who pass the state test, and possibly even the attendance of their students. When I worked in Texas I received a note from my principal stating that I had more students failing my class than the maximum recommended guideline of 10%. One of my students was a drug addict who had not come to school in over a month. My class only had five students. When one out of five is failing, that means 20%. I'm not sure what they wanted me to do about it--pass a student who didn't attend? When I worked in Arkansas, we were given a number of students expected to pass the state test each year. Every year we fell short and the next year the number would be even higher. Logic just doesn't enter into the equation. Some states link the state test to graduation, but Arkansas wasn't one of them. Basically, the students had no incentive to pass the test. None.

So there's a lot of pressure on teachers to pass students--to accommodate them. Personally, I think it's great when teachers bend over backward to enhance student learning, but many times these measures lead teachers to grade inflate or to create enough easy grades so that no one fails.

But Luckeyfrog wanted to know about another group of students that might appear in her class--those with disabilities that are in the mainstream curriculum. When I was in school, this wasn't discussed AT ALL. I had no idea what it even meant. I had trial by fire, though, as my first teaching assignment had mainstream kids and every job after that actually involved developing modification plans for my students. Here's a quick list of what worked for me:

1. Give students a word bank of choices.


2. Make sure a word bank has about five choices in it--giving them fifteen choices isn't helpful.


3. When giving a multiple choice test, eliminate one or two of the choices depending on the student.


4. Assign only evens or odds on a worksheet.


5. Put students in pairs and let them read to each other--let students divvy up the material.


6. Try to plan lessons that appeal to different learning modalities--consider visual and tactile experiences as well as auditory.


7. Consider contract grading for students who seem dejected.


8. During seat work, sit next to students and work with them or pull a small group of kids who struggle.


9. If giving notes, consider creating a "note helper" for students--a sheet with blanks to be filled in rather than just writing down everything you say.


10. When giving notes, walk around the room and tap desks of students easily distracted.


11. Try a variety of seating strategies.


12. When teaching a subject like math or science, focus on the subject and try to remove all barriers to the material. If the child has trouble reading, see if there's an audio version of the book or text book. If the child has trouble writing, allow them to give you answers orally. Getting hung up on what they can't do can lead to a loss of learning. Being unable to read or write doesn't' mean that their brains can't process other types of information. I had one student who could barely read, but who could solve complex algebra problems in his head.


13. Above all, focus on student strengths and work from there.

Standing practice. I can't get him to look at me because he's too busy smiling at my computer's iTunes.

Dark Places

Blogzilly left me a comment recently that got me thinking about how I cope with Charlie's disability. . .

This blog is rarely a dark place.

I have a couple of reasons for that. First and foremost is because I feel a great responsibility to the parents who may come here after being told that their child has suffered a brain injury. I want parents to come here and see that a child with disabilities can be beautiful and magical and that your life doesn't have to end because you've been given something you didn't expect.

But there was a time before I felt as much hope as I do now. A time where fear just crushed me into a puddle of mush. In those early days, I would sometimes find an entry on some one's blog that would scare me so much that I would just weep on the keyboard. Blindness, deafness, medical bills, uncontrollable seizures--it was all so scary. Charlie was so young there was just no way to know how bad his disabilities would be.

So I decided to see somebody. I went to a counselor and cried and snotted in her office for an hour. I used an entire box of tissue and half of a second one as I told the story of my son's birth and subsequent brain damage. I told her that I missed my old life, that I was scared of my new one, and that I was SO angry with my doctor.

And she told me that she thought my feelings were normal and justified. She said that, in her opinion, I was dealing with the whole thing pretty well.

And she was right.

Every parent whose child has been injured has a right to grieve. They have a right to be scared. Whether it was malpractice or mother nature or just freakish bad luck, our children have been injured. Grief is normal. Fear of the unknown is normal. I believe that grief is cyclical and it will come and go from your life. Months may pass and one day it hits you again and you must deal with it all over again.

But and some point you have to make a choice. You have to decide to move on. I'm not saying forget--you can't forget--but get on with the business of life.

We all carry scars: death, disease, addiction, war, abuse, poverty--any number of things can touch our lives when we least expect it. I also know that I have never, ever felt better dwelling on it. I may let myself roll around in it for a little while, but in the end I have to kick that crap to the curb or it will rule me; swallow me whole. I've never been good at moderation.

And so I celebrate what I do have: a happy child, a delicious dinner, a new pair of shoes; a really big diet coke, a country with fabulous health care, a shady front porch. When my thoughts get dark, I re-route them--focus on something else. Am I always happy? No, but I wasn't before Charlie was born either. I'm just a regular person who copes with life the only way she knows how.

I thought there was no better picture for this post than this one. I'm trying to give Charlie a lesson about cooking and he's giving me the stink eye--he did NOT care for it. Things are far from perfect, but probably pretty close to normal around here.

Next post I promise to get back to some of those awesome questions about education

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.

Learning Basics

So, I'm glad you guys like the giggles. Charlie continues to be a joyful little boy--Walmart was hysterical, daddy is funny, life is good.

I'm back to answering questions, though. I just love talking about education and you guys asked some really good questions. My first post in this series is here if you missed it.

Today I'm going to finish answering Blogzilly's question, disappoint Elizabeth, and also answer Beth's question.

Blogzilly wanted resources--what's my go-to for working with my brain injured kid? Well, I swear by the Glenn Doman books--How to Teach Your Baby to Read, How to Teach Your Baby Math, and How to Give Your Baby Encylopedic Knowledge. Glenn Doman has worked extensively with brain injured children and I have met many, many parents who have used his programs to great success. For the record, neither Glenn Doman or Amazon give me any kind of kick back for those links--I'm just a big fan of the books.

I'm more laid back than Glenn, but his overall concepts are excellent because they rely on a couple of good basic educational concepts. These are repetition, enthusiasm, and multisensory presentation. Very simple stuff.

Repetition helps burn a concept into your brain--creates a firm, concrete neural pathway for that information. Ever notice how kids can watch the same boring video a million times? Or how they want you to read the same book over and over? Don't tell them, but they're learning.

Enthusiasm is kind of no-brainer. If you act excited about learning than your child will be excited about learning. If you make it seem like a trip to the dentist, than don't expect them to to show a lot of interest in math or science.

Multi-sensory sounds scary, but all it means is "more than one sense." Activating two senses at the same time helps burn that neural pathway all the better. Vision and hearing are the most common, but touch or smell could easily be incorporated as well. This probably best explains why you remember more when you take notes at a lecture--vision, hearing, and tactile senses are going.

Because I use the Doman method, we use big, giant flashcards--the size of a standard sheet of paper. I think this really helps with kids who have visual issues as well--it's easier to focus on a HUGE word than on a tiny one. Kids without vision issues would probably do great with regular flashcards or simple books. I know one little boy who learned a ton of new words from the Baby Bumblebee video series (again, no kick-back).

Now, there are some people who are going to argue this method. They think that it's inappropriate to show a child flashcards or they think that flashcards don't teach you how to think. They are mostly right. No one should lock their kids in the house to look at flashcards all day. Play is a fabulous form of learning as is helping around the house and other normal kid activities. The amount of time I spend showing Charlie flashcards probably amounts to about a half an hour a day and it's interspersed through-out the day. Also, we don't do them every day and I never, ever drill him. I'm just giving him a chance to see the information.

What about people who say that flashcards don't teach thinking? This is completely correct. Flashcards don't teach thinking, but they do aid in thinking. Functional MRI's have revealed that a person reads using two separate parts of the brain--one is a bank of known words, the other a processing area that reads the words phonetically. Better readers rely on the bank of words more often. In my opinion, flashcards help give your child a bank--a storehouse of readily available information. As a teacher I found it very difficult to teach something if my kids had no prior knowledge of the subject. It's hard to draw a conclusion or think about something when it's completely foreign to you. Flashcards or big books just give you a base of knowledge--the thinking will have to come from within.

So there you go. Long story short--show kids information often and be enthusiastic about it. If you're not feelin' the idea of flashcards then think of something that does work for you--watch a video with your child and repeat the interesting content in an excited voice, read a book together about farm animals, sing a particular song over and over. Learning really should be fun.

Beth wanted to know what we're working on at my house. We recently finished up colors, shapes, and insects. We're currently working on action words, musical instruments, sea creatures, and famous paintings. I accompany all my lessons with documentaries (which Charlie ignores), books, objects around the house, and anything else I can find.

Decided

I've still got a ton to say about education and I promise to continue with all the questions next post, but I just wanted to add a little something.

People who read here regularly know that I've been struggling with what to do about Charlie's epilepsy medication. I suspect that it's making him dopey and I hate that.

Well, I've had a little confirmation recently.

You see, Charlie has FINALLY gained a little weight. He was flat-lined for a long time, but now that he's discovered the greatness of sandwiches, he's put on close to a pound. Please don't misunderstand--the kid eats. And eats. This morning for breakfast he had a bowl of oatmeal, an egg, and a slice of toast. He eats plenty, but he burns a lot too so it's a struggle to get weight on him and keep it on.

Anyway, with this little bumb in weight, I've noticed some personality changes--he's giggly. He'll just be hanging out in his room giggling while he plays. I love that. He's also much more interactive. He catches your eye more often, he smiles in response to things you say, he rolls over to me and tries to pull my hair. He's still scared to death of the lady at chick-fil-a, but he seems really social to me. I can't help but wonder if this isn't his personality breaking through the seizure meds.

We have an appointment for October 7th. I've got to be strong (whimper). I've got to find an alternative to our current situation. I owe it to the giggly Charlie.



And in case you want to see just what he does that burns so many calories, here he is climbing, which is does many, many times a day.

Great Expectations

You guys have asked me so many amazing and thought-provoking questions that it seems a shame to lump them all into one blog post, so I'm going to do a couple answering a few questions in each. How 'bout we start right now?

Ronnette and Blogzilly asked me questions that I think can easily be pulled together into one answer. Ronnette has a son with a rare chromosomal deletion and the doctors have not been very positive about her son's potential. Blogzilly wondered where you start and also how you measure your effectiveness. I'll answer half his question today and the other half in another post.



Let me start by saying that as little as three years ago I would have assumed that a genetic issue meant serious and unconquerable odds. I was also pretty naive three years ago. But then I read something about Sarah Palin ( I know, I know) that got me thinking. She said, "what do we really know about Down Syndrome?" and man, how right it that? We know what causes it and we know what it looks like, but other than that? The information is scarce. That's a well-known genetic anomaly. What about the lesser-known ones? I think that we probably know very, very little. In my humble, non-doctor opinion, I would never assume that my child wasn't completely capable. Short of metabolic issues that affect the brain's ability to transmit information, I would assume that my child was capable. I went ahead and googled the specific genetic anomaly that Ronnette is dealing with--we're members of a support board together so I had access to that information. The first thing it says, right at the top is "typically these children have impaired mental capabilities." Notice what I did? Typically. What's typically? Can I get a percentage please? If it were me (and it's not) I'd try to get my hands on exact numbers and then I'd convince myself that my child could be in the small percentage that are less affected.


Why so crazy? Because expectation becomes reality. As a teacher they drilled it into our heads time and time again--expectations WILL affect student performance. If a middle or high school teacher can have that much effect, imagine what a parent can do. The studies are there, the facts are in. . . kids respond to expectations. So make sure when you're dealing with your child, you don't hold the bar any lower because they're disabled. As I've said before, giving your child the benefit of the doubt is free. I've only been exploring the world of special needs for a little over two years and I have been straight-up astounded at the result that are possible.



Blogzilly asked "how do you know?" and there's the other side of this coin--you just have to believe. Children are horrible testers for one reason--they don't care. My Charlie is a perfect example--he'll be playing with a little board that has five shapes on it--when pressed, each says its name and makes a funny noise. Charlie could easily press triangle thirty times in a row--he finds the noise that delightful. So I'll come over and ask him to press the circle. At best, he'll do it once and then he's back to the triangle again. Movement is effort and frankly, he's only going to put out so much effort to make me happy. But he's pressed circle for me enough times that I don't think it's a coincidence. So you gotta believe that you're getting through and that your child is processing and understanding. I'm not saying that you should yell in ears of a deaf child in the hopes that they'll understand, but if they're looking at you, assume they're listening. Treat them like every other child. I mean, a typical child doesn't talk until they're almost two, but we assume they're assimilating something before that. Give your non-typical child the same credit. Sometimes you'll see parents who don't give their children the same credit that they give their dog. I mean, my dog knows a couple of words and he sure as heck knows when I'm upset or when I'm cooking. Surely, our children are at least that capable. There are tons of stories out there of kids who are quite disabled, but eventually they figure out how to communicate and BAM! they've been paying attention all along. There's a mother in my ABR support group whose daughter was communicating in complete sentences the first day she had access to augmentative communication. Jenn over at Jude's blog has a similar story that she just posted.



Our kids can do this. They've got tons of issues but not one doctor can promise you that your child won't be smart or at least average. If they say otherwise then I'd ask for the research to back up their claims. Press on. The way I see it, I'd rather go to bed wondering whether or not they understood than wondering whether or not I gave them all I could.

Not Kidding

I have typed and typed and typed. I have probably five drafts of a blog post about teaching kids and I CANNOT get it right. Maybe it's the long weekend. Maybe it's from inhaling fumes as refinished my dining room table.

And I said I was going to write about it, so now I feel like a flop.

How 'bout this?

What do you want to know? Ask me any questions you can come up with about education, learning, the brain, Charlie's intellectual program, whatever. I'll put that together into a post. If you don't have any questions, well, then I'll blog about something else. But seriously, you should ask me some stuff because you don't want me to feel like a flop do you?

Progress, Baby!

I know I said no updates til after the weekend, but here's a picture of my boy after he just pushed himself up into a side sit. It's the first time he's accomplished this feat all on his own. It's not actually the best position for him, but I'm sure he'll be getting better and better at this all the time. Woohoo! He looks a little like a drunken crazy in these pictures, but I think he was a little confused once he got himself like that.

And, just for funsies, here's a picture of him riding on his turtle. He looks like such a big boy these days!

Labels are for Soup Cans

One of the biggest fears you hear when someone says "brain damage" is a lack of intellect. I mean, it didn't even really occur to me all the physical issues that are involved with brain damage--that came later.

I mean, the idea that my child might be "retarded" was pretty shocking to me. I'll be frank and say that I was expecting to deal with issues such as AP versus IB and whether or not schools had good gifted programs.

But I had an advantage that many people don't--I'd worked as a special ed teacher for five years.

I'd taught kids that were "mentally retarded" and I'd learned a lot about that diagnosis and what it really meant. The definition of "mentally retarded" or "mildly retarded" is a person with an IQ lower than 70. Average is 100. Most of the kids I worked with were high functioning so their IQ's fell between 60 and 70.

Never has a number meant less. I saw kids with an IQ of 70 master complex geometry. I saw kids with higher than that fail miserably. I had one girl come into my class "retarded" and leave "learning disabled." I saw a girl get the label "retarded" because they couldn't figure out what the heck was wrong with her--I think boy crazy and disinterested might have been a better classification.

So after I found out Charlie had brain damage, I hit the pavement, er, Internet and did as much research as I could. My idea of research is to gather as many cases as I can and draw my own conclusions--I don't like being told what to think. What I saw was this--a kid could be very physically compromised by their brain damage and still mentally capable. I found that kids who were missing two senses--primarily vision and hearing--were at a great risk for mental handicaps. Ditto for kids with an uncontrolled seizure disorder. Other than that, though, there was simply no telling whether a kid would be fine or not. Looked like a crap shoot. I also found a LOT of fault with the IQ system which I was already not crazy about. I mean, how do you test IQ on someone who can't hold a pencil? Has trouble focusing their eyes? Can't speak? Can't hold up their head?

So I made a conclusion. I decided that many disabled kids probably got low IQ scores for a plethora of obvious reasons--they didn't get out as much, they were often sick, they couldn't actually get to all the things typical kids could, they couldn't see as well, they couldn't manipulate their world as well. I mean really, with all these challenges is it any wonder that they might not know as much as their peers?

So how do you get the info in with all these challenges?

With Charlie, I'm always quizzing people with typical children and observing them. What are they doing right now? If they're digging in the kitchen cabinets then so are we--I just have to do the digging while Charlie watches. Same for the fridge, the drawers in his dresser, and the mail box. My friend's kid is constantly asking "what's that?" Well, Charlie can't talk yet but I just walk around identifying everything we run into. This is the car. This is your seat. I'm getting gas. Gas makes the car go. Blah, blah, blah. He freakin' loved the deli counter.

I could continue this post for another five paragraphs but I'll leave it at this for tonight--go enjoy the long weekend and I promise to come back next week and talk about brain theory, reading, and why it's always a good time to start helping your child read.

Beliefs

Well, I'm tired of looking at that last post, but I really don't have anything so today I'm putting up a list.

When it comes to raising a kid with special needs, I believe the following:

1. Somebody else always has it worse than you.
2. Somebody always has it better.
3. Better or worse has no effect on happiness. None.
4. The scariest thing about raising a kid with special needs isn't the limitations--it's the potential and how to unlock it.
5. Nutrition is incredibly important.
6. Vaccines should be treated with the utmost care.
7. Your kid is more typical than you may think.
8. There is no magical piece of equipment that will make your child walk/talk/pick up their head/crawl. That stuff takes hours of hard work on the part of many people.
9. The best wisdom comes from people who have been there/done that/bought the t-shirt.
10. The best wisdom does not come from your doctors.
11. Doctors work from generalities and your child is specific--don't forget that.
12. Always look at the kid--even if the tests look bad--look at the kid.
13. Go with your gut.
14. IQ is a measure of what you should know versus what you actually know--potential is immeasurable.
15. I no longer believe that brain damage=intellectual deficit. There are exceptions to this, but go ahead and assume that your child understands, explain consequences, and talk to them through out the day. Their bodies may belie their true understanding. Giving them the benefit of the doubt is free.
16. If a doctor tells you that you child will never be normal, ask them for the definition of normal.
17. Your kid is worth it--if a doctor cannot see you child's worth, get a different doctor. Yesterday.
18. Your child is normal. Disability is a normal part of the human condition.
19. Don't worry about whether or not you're making a friend uncomfortable talking about therapy or equipment or whatever. If they're any kind of friend, they'll figure out how to listen. Some people will be uncomfortable until they know the right language to use so use words like "disabled" and "special needs" around them so they know it's OK.
20. Looking at someone else's kid and being jealous is kind of like staring at somebody else's apple pie when you've got a slice of rhubarb right in front of you--time to figure out how to like rhubarb because that, my friend, is the slice you've been given.