Second Child Blues

Yesterday I was chatting with another special needs mommy on Facebook. She and her husband have decided to adopt their other children after much discussion about her son's genetic condition. I'm not doing a good job at explaining--her post on the subject is here.

Hubby and I both want another child and in the course of this chat I told her, "I want another child--I just don't want to be pregnant again." And boom! there it was. Sometimes you don't know what's holding you back until you say it out loud (or, type it).

I really feel guilty even talking about this. The special needs community is filled with mothers who have BAD pregnancies. I'm talking hospital stays, way too early deliveries, preeclampsia, other things that seem a lot worse than what I went through.

You see, my pregnancy was fine physically. I was tired, had a touch of sciatica now and then, but other than that, I was fine.

Mentally, I was a wreck. I was anxious, cried at the drop of hat, worried incessantly about everything, and obsessed over things long since passed. It was bad. You see, pregnancy pretty much destroys any and all coping mechanisms I've developed. For crying out loud, you can't even take a hot bath when you're pregnant. I spent much of my last pregnancy worrying, worrying, and you know, checking some website to see what was happening with my baby this week.

Tension levels were high at my house and according to my doctor, the baby was fine. I can only imagine what I'll be like now that I know how bad things can go at the end.

So. . . .

I guess that once you've said something out loud, acknowledged it and all that, you can try to figure out what to do about it. I'm not exactly sure what my plan is, but I'm thinking maybe going to a perinatoligist provided I get pregnant? Really, I don't know what to do. I'm just figuring the whole thing out as I go along. . .

Pictures are of our version of an Easter Egg Hunt--Charlie HATED that grass!

Good Things

Haven't done this in too long! In no particular order, things that are making me smile.

1. I received two lovely blog awards lately and that feel good. Things have been kind of quiet around here lately and it's nice to be thought of! The sunshine award is from Aviatrix and the Happiness 101 award is from The Henrys.




2. I got to meet a fellow blogger this past weekend. I've been reading her blog since May of 2006--yes, I'm a nerd and went back and figured it out. Back in the day, my co-worker used to tell me that everyone I met online was secretly a man trying to meet women. I am happy to report that Toni is just as cool in person and not a man.



3. Took Charlie to the Neuro. Still nice and fat. Charlie's had two incidents where he woke up crying in the middle of the night and she said it probably wasn't seizures. She said nightmares were much more likely.


4. Charlie's Gator walker has arrived--he doesn't know what to make of it yet, but we'll get there!






5. We went to the Easter party again this year. The one that was so disastrous last year? He did SO much better. Kept his eyes open and everything. Still didn't like the Easter bunny, but other than that, the whole thing wasn't half bad.

He's looking at that Easter Bunny like, "Hey, get your hand off me."

Unit on Oceans

Unit on Ocean Animals

Goals: identify ocean animals, understand that oceans are bodies of water

Key terms: sea horse, sting ray, octopus, fish, turtle, (each link is to a good picture for a flashcard)

Activities:

Sensory Seahorses (click on link for full description)

Octo-dogs--only do this with kids that are really good eaters, keep the noodles lengths short, and never leave child unattended! Hot dogs can pose a choking hazard. Mention repeatedly that octodogs have eight legs just like an octopus.



Ocean in a pan--water in a pan with a few plastic sea creatures or water and sand together. Allow time for explanation. Guide their hands if needed.



Fish Banjo--Easiest project ever. Also, Charlie is still playing with his. It's amazing how a toy made out of an old shoe box and some rubber bands is as big a hit as the forty dollar ones AND it doesn't use batteries.





Ocean Scene Stickers--place stickers of sea horses, fish, or turtles on an ocean scene. I like the foam stickers from craft stores because they provide great, 3D texture.

Books we Enjoyed

Swimmy by Leo Lionni. A classic children's book about working together.


The Rainbow Fish by Marcus Pfister. A new classic about sharing.






Hooray for Fish by Lucy Cousins. Reminded me of Dr. Suess with it fun rhymes and bright colors.



The Day the Ocean Came to Visit by Dianne Wolkstein. A more advanced story--kind of like a legend. Hubby and I really enjoyed this one.

Just as I Am

Megan does this fun meme and I've been wanting to participate for forever. Today's the day:

Today we went to a concert in the park. Charlie had a nice time even though he's closing his eyes in this picture. The breeze was blowing and it was just a lovely, lovely day.

I'm working really hard on getting my first unit post up for you guys--I think it's more work to type it than it is to implement it!

Teacher in Heels Part Two

Part One is here.

My parents did a lot of things to protect me when I was a kid. They sacrificed a lot of things so that my brother and I could go to the best schools, so we wouldn't worry, so we would be safe.

I didn't live in a bubble, though. The specifics were vague, but I knew I had it good and I worried a lot about "the real world." When I went off to college I actually thought that laundry took days to complete. Really, I had no idea what even went on in laundry room. I'd also done a bang-up job at ignoring sweeping, dish washing, and mopping.

When I began thinking about my future, I kept this in mind. I was, at best, moderately good at retail jobs and knew that if I had a shot in life I was going to have to get a job doing something that made decent money. Preferably something that involved cute shoes.

I figured I'd become a lawyer. There were lots of lawyers in my family. I liked a good discussion. Lawyers make good money. Suits can be very flattering. It felt like a perfect fit. To be really safe, I intended to major in Accounting in college. Accounting also seemed like a good bet--never mind that math class made my eyes roll back in my head. I figured I'd powered through high school and I could power through some accounting--school wasn't supposed to be fun, right?

Turns out, I never got a degree in accounting, never went to law school, never even took the LSAT. Life had different plans for me--I just didn't know it yet.

Creating a Unit Part Five: Wrapping Things Up

So far we've covered picking a topic, planning your time, finding materials, and instruction. Now it's time to wrap up some loose ends. What? You thought we were done? Sorry. . . a teacher's work in never done. It's just a few things, though.

Review. I keep cards from the last few weeks around and go over them with Charlie in the following weeks. So every week he's got new cards, but also some old ones. There are natural ways to review without cards--re-read books from previous topics, sing songs, just point out things that occur naturally. Small children should not be tested. Have faith in yourself, your methods, and your kids. Besides, you'll be back around to this stuff again.

Speaking of which, don't throw anything away! I mean, you can throw away finished craft projects, but don't throw away materials you make. The book, How to Give Your Baby Encyclopedic Knowledge suggests a method where you teach your child one thousand facts and then go back around, and teach those same concepts again while adding a level of complexity. In the beginning you're teaching your child things like, "this is a grasshopper." By the end, you're going over the genus and species of said grasshopper. I'm not saying you have to teach your child a thousand facts, but there's ample evidence to suggest that people learn best when they have prior knowledge of a subject from both the education and neuroscience fields.

My final thought is to think about the activities you did and what worked and what didn't. It doesn't have to be a formal thing, but just consider these questions and that will help you plan better activities in the future.

Rolling cars down the hallway and talking about which ones went far and which ones stayed near. I had to do most of the rolling, though. Charlie's technique sends the cars sideways. You can see some examples of that if you look closely at the picture.

Voice4U Winner

The winner is The Henrys! I used Random Number Generator, but I'm not smart enough to get the screen shot like I see bloggers doing.

Please send me your e-mail address and Yumi will get the free activiation code to you. You can contact me at barnyardmama [at] gmail [dot] com.

I bet you'll have a lot of fun with it!

How Disabled is Enough?

When Charlie was two months old, we began the process of enrolling him in Early Intervention. At that time we checked a box saying that we would be interested in what they call a OCDD waiver. Many states have a program like this and it exists in order to keep children who might otherwise be institutionalized at home.

We have an evaluation with the state at the beginning of May.

I wonder what help they would be able to provide us, if any. I really have no idea if this is even a good idea. Hubs is already resisting--he hates taking "charity" which I think is ridiculous. We pay taxes, so it's not charity--we use the library, we'll use public schools, why not this?

It's just weird. I mean, I just can't tell if Charlie even needs something like this. I feel like Charlie is such an in-between kid--he's not mild, he's not severe. He's distinctly moderate. Sometimes I don't know where exactly we fit in. I mean, even if I look at the GMFCS for cerebral palsy and he's straddling the line between II and III. We're misfits.

I feel this way in other situations too.

This weekend we were at an event for the families of specials needs children and adults. While we were there, I saw two other families with children that had cerebral palsy that were about Charlie's age. One family I already knew and we chatted for awhile and then we went off to test the adaptive trikes.

The girl I know and the other mother ended up talking up a storm--discussing their strollers, head control pillows, HBOT. I sidled over there, but the other mom didn't seem interested in talking to me. I think we didn't look disabled enough or something.

So it can be tough here in the middle.

I know it's tough on both sides too.

I guess I just feel whiny tonight.

Pictures of Charlie in the diaper box car--suprisingly fun.

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.

Creating a Unit Part Four: Teaching Your Child

For those of you who wanted to know more about my last post, I've decided to keep posting the story on Sundays since that's kind of a light traffic day for me.







You've picked your subject, you've planned your time, you have your materials and now it's time to start teaching. Yay! Knowledge!


Before you do anything with your child, consider their "needs." In education, there's constant talk about Maslow's Hierarchy of Needs. There's a lot of depth to it, but one of the basic premises is that a person isn't going to learn well if they're hungry or tired, or have some other pressing need. So you need to think about these things with regards to your child. Don't try to teach them for the first time right before lunch or right after a vigorous PT session. I also think it's good to think about positioning. When we first started doing flashcards with Charlie, I had him look at them while lying flat on his back--that way he didn't have to worry about neck control, trunk control, etc.--he could focus all his energy on looking and listening.


It's also important to make this enjoyable. DON'T look at it as "if this doesn't work, my child is doomed." That's a recipe for disaster. Just tell yourself that this will be a fun experiment--if it doesn't work, you've lost very little. I have a silly congratulatory song that I sing when we finish a set of cards and Charlie loves it. Studies are finding that happiness can actually trigger the chemicals in the brain that aid in learning. My husband always tells Charlie how smart he is after a session. How great is that? We have activities that flop ALL THE TIME. I just keep pushing on and if it fails, then no harm done. I'll try something else next time.


You also need to keep it short. Flashcards should be shown at lightening speed. Every time someone sees me showing Charlie cards they say, "that is WAY too fast." You know what? they're wrong. I'm actually getting good at identifying this stuff and I have some of the worst memorization abilities of any person on the planet. Quick! quick! Little kids bore easily. Keep activities short too. You should have lots of repetition built into your week so no worries if things don't go perfectly.


As a final thought: remember what you're trying to teach. If you want your child to know that air planes fly in the sky, say that. It's not necessary that they use their arms to make a plane fly in the sky--that's a gross motor issue. They don't have to cut out the air plane shape--that's a fine motor issue. If they can do these things, then great! get them moving, but if they can't, that doesn't mean they can't learn.

Pictures taken a local event for families of special needs children and adults. I'll admit I had to sing to get this smile, but Charlie did great at an event that was full of people, loud noises, and plenty of commotion. Slowly, but surely he's getting less shy. He even rode an adaptive tricycle!

Time Machine: Teacher in Heels

Lately, I feel like this blog is circling back around to the beginning of my blogging days. You see, there was a girl that existed before Charlie--a girl that chronicled her adventures teaching special needs kids at an inner-city school.

So, I've decided to write some of my previous life down here, as a record. You can keep reading, but you've been forewarned. . . this isn't my usual fare.

I guess I'll start by explaining how I grew up--the girl I was when I decided to become a teacher. You see, I was the kind of girl who had most things handed to her in life. Not all things--but most. I wasn't a blonde cheerleader, but I did get my first car when I was fifteen and I did like to get my formal dresses in Houston rather than in town so that other people wouldn't have the same one.

I wasn't one of those ridiculous people you see on My Super Sweet Sixteen, but I was the kind of girl who never loaded a dishwasher, never attended public school, and who had her own platinum card at sixteen. When I was eight, I thought there were three professions: doctor, lawyer, and teacher. When I was thirteen, I had a friend whose family name appears on a common kitchen product and another who had a suite in her house instead of a just a bedroom. I might not have had it all, but I had friends that did.

I spent my weekends jetting here and there in my car. I hung out at my friend's lake houses. My picture was in the social section of the newspaper, but I thought I looked terrible. I planned my spring break in Destin and worried about which color sofee short I should buy to match my bathing suit.

These were my concerns.

I wasn't concerned about school--I was bored by it. I got A's and B's, rarely did my homework, and never, ever studied. I had boys to think about! and Friday night! and prom! Oh how I thought about the prom. I even bought prom magazines, which are actually just big huge advertisements that you pay for--kind of like bridal magazines.

I doodled in my planner and worried about the weekend.

I can promise you I never thought I'd be a teacher--thought I was way too smart for boring job like that.

Shows how much I knew. . .

Creating a Unit Part Three: Choosing Materials

So you've picked your topic and figured out your time line--now for my favorite part--choosing materials. I really do love this--it's a lot like shopping. In fact, some shopping may be involved.

First you need to figure out the main way you're going to reinforce your material. As I've said before, I like flash cards. Pick somewhere between five and ten key concepts for the week. For example, this week we're learning to identify boat, car, truck, air plane, and train. Start really basic if that's what your child needs. Remember, a medically fragile child won't have as much real-life exposure as typical one. I know that my non-verbal child doesn't ask me "whass that?" like my friends' kids do, so he's missing out on some vocabulary. It easy to build once you have a good base.

So, pick your main activity--flashcards, books, songs, videos, and then make sure you have enough stuff to get you through the week. I make my flashcards on Sunday nights. I also spend Sunday nights on the computer looking through my local library's data base. I get a nice list of possible books and DVDs and head over there first thing Monday morning.

There are tons of great places for materials--here are a few suggestions:

• Local library


• Craft stores


• Dollar store


• Second-hand store


• Your child's room--you'd be shocked all the junk they have in there

I also try to think of cheap day trips we could make. Obviously you could go to the zoo if you're studying animals, but some other topics might be tricky. Another great idea is to put in a key word like "train" plus the name of your town into your favorite search engine. That's how I found out there's a toy train museum in my area--who knew???

So go get your materials--up next, actually teaching your child.

Pictures of Charlie and the air plane mobile. His hair is still a little wet from his bath so please excuse the craziness.

Voice4U

I was recently given the opportunity to test the Voice4U iphone application for augmentative communication. To say I was excited would be an understatement. I tried to win one when Tammy did a give-away, but it wasn't my lucky day. I'd been stalking the software for a while, so this seemed like a great opportunity for me.



So, I downloaded it, and we've been playing with it.

I actually think it's a great program for exactly where we are right now--transitioning Charlie over from a simplistic communication device to a more complicated one. It has over 130 icons pre-loaded and they're sorted into categories. The icons they use are distinctive and Charlie is already starting to know how to tap the ones we're working on. In my opinion, the best part is that you can actually create your own icons if they don't have the ones you want.

There are two other really great things about this application. First is portability--you just can't beat a program that's sitting on your phone--I mean, you carry your phone around anyway. Now, Charlie and I can practice using augmentative communication while we're sitting in the waiting room of the pediatrician's office.

The second great thing is the appeal factor. I don't know about you guys, but getting Charlie to actually touch his last augmentative device was a trial. He didn't like the thing. My iPhone is the complete opposite--he thinks it's fascinating and will perform heroic feats to get his hands on it.

And then there's the price--at thirty dollars, it's hard to miss. Both of Charlie's previous devices cost more and when we move up to a full-blown system that will probably cost thousands of dollars.

The only drawback I can see is that you will need a certain amount of fine motor control to work the device. It's set up to need a nice, heavy hand to make selections, but you still need to be able to tap with one finger. I suspect Charlie could do it by himself--like I said, casual movements don't activate it, but right now I'm still helping him hold out one finger--I consider that good OT practice as well.

As far as I know, the application can be put on the new iPad that just came out, and having it on that large a screen would definitely make fine motor less of an issue.

My absolute favorite part about getting to try out this application is that I also get to give away a copy to one of you.

I'm not a big giveaway girl--I've got so much talking to do that it's hard for me to give up a day of posting to talk about something that's not on my heart, but this--I thought you guys would be interested.

So leave me a comment--tell me what you'd buy with the thirty bucks you'll save--a couple of lattes, a pedicure? I'll draw a name next Wednesday.

As my parting gift (snicker) I'll leave you with this video of Charlie and I practicing with the application. I'm switching screens and stuff but the voice activating is all Charlie. Please excuse me for finding this kind of funny. . .

Creating a Unit Part Two: Planning Your Time

I know you're all on the edge of your seats--you've picked your topic and you're ready.

So you need to plan your time. First, you need to figure out how long you want to cover your topic. Anywhere from a week to two weeks is plenty for most things. I usually plan a week and then life gets in the way and things stretch out a little longer than that. Happens like that in the regular classroom too. If you're covering something huge, you know, like the bildungsroman in American literature, maybe plan for three weeks, but small children? A week is often good.

Now, you have to plan that week. At the very minimum, you want to introduce your child to the new information fifteen times throughout the week. For me, this means that we review his flashcards three times a day for five days. I won't go on and on about flashcards here--they work for us, but books, discussion, songs, vidoes, and playtime activities all convey information. Just be sure to get it in a LOT! We also do one activity a day and read one story related to our theme each day.

I also try to review things we've covered other weeks--either by bringing them into our activities or by reviewing previous note cards. A perfect example is fish--we started them during our unit on pond animals, but they also came up during ocean.

So that's it! Plan in place time-wise. Up next, choosing materials and activities (my favorite part--it's a lot like shopping).

Here is Charlie doing a sorting activity using toy cars. This week we're on transportation, but this activity also helps review colors. I got the idea from a sensory activity from No Time for Flashcards, but adapted it for my purposes. I have no idea why he looks so spacey--must be the illness. Just a head cold, by the way.

One of Those Days

I'll be back talking units tomorrow. . .

Ever have one of those days? You know, the kind that start off kind of crappy and then rapidly spiral downward?

Well, please allow me to share my day with you:

Last night I had insomnia. We've all had head colds this week and I just don't sleep well when I'm unable to use my nose. Sorry, I'm a freak like that.

So you know how it goes, I want to sleep, but somebody's up and that's that. Only Charlie felt feverish this morning and LAWD the kid is never feverish. He's had wild gallumping sores of the mouth, been hospitalized for it, and still never gotten a fever.

And thus begins my panic. The rabid dialing. The listening to automated voices stringently warning me about colon cancer that are interrupted by other automated voices telling me to stay on the line.

The waiting.

The screaming, angry toddler who wants to be held, but can't be because mommy is selfishly trying to schedule him a doctor's appointment.

The irony of the situation is that we're actually going to the doctor tomorrow--only it's an orthopedist and not a pediatrician so I'm trying to fit the ped in today so we can still make it to the ortho tomorrow. Wanna know why health care costs are sky-rocketing? Might be because I've got to schedule two professionals to look at one tiny person. Just a thought.

Well, I get an appointment with the nurse practitioner at four o'clock. Ever notice how doctor's offices can save money by hiring nurse practitioners, but I still have to pay the same co-pay?

I digress.

It was one of those days. The ones where you open your credit card statement and find out that somebody had some fun in France, also bought some kicks and expensive hats with your credit card. And when you call to get that straightened out, the fussy, sick toddler decided that is the perfect moment to take the mother of all dumps and then begin screaming.

Yeah.

And going to the pediatricians office had me all worried anyway. You see, the other day my husband accidentally gave Charlie what could only be described as a chemical burn. Yeah, I know, our Parent of the Year Awards are in mail. Hubs, you see, is sometimes a man of excess. If one is good then five is probably better--he's that kind of guy. So when Charlie got stuffy, Hubby took a bottle of Eucalyptus oil that's supposed to go in a humidifier and instead sprinkled it directly on Charlie's collar. And we got this:

Apparently, it's not so good directly on the skin. I swear this is the result of over-zealous caring and not, you know, putting out cigarettes on his neck. Although it is hard to tell.

Since a previous visit has already got the pediatrician questioning my overall skill as a parent, it didn't really seem fair that I was going to be the one to go in and explain about his neck! I mean, they're going to start thinking I'm some mommy-blogger who ignores her kid all day.

On the way to the appointment I get stuck behind someone who is driving approximately fifteen miles below the speed limit. You know, for funsies. When I finally pass her, I see that she's chatting on her cell phone.

I get the last spot in the parking lot. I managed to score it because the person in the adjacent spot is actually occupying about a foot of it. Sweet. That'll make it really easy to get Charlie out of the car. And the whole non-ambulatory thing? Can't get him to crawl across the car either.

Sheesh.

We get there. We get seen immediately. Hmmm. . . day is looking up.

We put Charlie on the scale. Administrative chick is with-it enough to know that Charlie still needs the baby scale. . . getting better.

We weigh Charlie--first time ever, he's able to sit instead of lie on the scale. . . huzzah!

And then. . .

drum roll please. . .

he's gained over two freakin' pounds.

If you've got a kid with cerebral palsy then you know how huge this is. If you don't, well, just imagine that there are little g-tube fairies constantly circling your kid even when they eat a ton, so this. . . is fabulous.

I take it back--the day wasn't that bad.

Creating a Unit of Study Step One: Figure Out What You Want to Teach

First let me start out by saying that I am a big proponent of studying in big blocks that are called Units. That just means that you pick a topic and you study it for a certain amount of time. I preferred this when I was a professional educator and even now working with Charlie--I just don't see the point in sitting down and planning just one day--not to mention shopping for supplies, getting out my laminator, etc. Yes, I have a laminator, and yes, I realize how ridiculous that makes me sound. Please forgive me--old habits die hard.

So, you decide on a topic. How do you decide? This is pretty easy. If you have a young child, look and see what topics are being covered by Elmo, Rachel Coleman, or even your local library. If your child is older, your state should have a list of standards for each grade level. The Common Core initiative actually has a list for every grade level in a variety of subject areas. I purused the Kindergarten list and got some ideas for things to do with Charlie.

Maybe you're still not sure. Here are a few questions to help you figure out what you want to teach your child:

1. What are they already interested in?
2. What types of things would you like them to know?
3. What are typical kids doing?

So are you excited yet? Do you know exactly what you want to teach your child? If not, here are some suggestions for Units for young children. Please keep in mind, if your child isn't young physically, but is young mentally, then you might want to start with these things as well:

• Breakfast foods
• Fruits
• Vegetables
• Plants
• Barnyard animals
• Jungle animals
• Pond animals
• Animals around the house
• Ocean animals
• Transportation (we're starting this one tomorrow!)
• Opposites
• Action words
• Shapes
• Colors
• Seasons
• Body parts
• Bed time
• Bath time
• Clothes
• Family
• Instruments
• School

Clarification

My brother called me on the phone after checking on my blog and said, "so does this mean you're homeschooling Charlie now?'

No.

Not right now.

I have every intention of sending him to school in August.

What I'm talking about is figuring out the best thing for my child--and I think every parent should be doing the same thing. If your child were ridiculously gifted in music or art, would you send them off to a lesson and then never ask them about it? Would you never encourage them to practice? Of course not, that's silly. You'd be involved.

Well, parenting a special needs child is no different. In some cases, you might end up taking them out of the traditional classroom--just as you would if your child were a skilled actress who worked six nights a week on Broadway. In some cases, some school might work--I have a genius friend who spent her afternoons at a local college while still enrolled in high school. There are similar programs for kids who are dance, theater, or music. Maybe your child will attend regular school all day like I did. It's not the how that matters--it's whether or not it works.

I've never seen a successful student that didn't have an involved parent. Parents are a child's first teacher. They are the reinforcer. They are the ones who put the spark and love of learning in their kids eyes. Thinking that job belongs to someone else is a cop-out.

You gotta figure out how to make it work--for you and your child. That's not about one answer--that's about a lot of different answers for a lot of different circumstances. That's what I'm trying to do here--empower parents when the answers aren't obvious and easy. Show them that they are still the guiding force in their child's education.

I'm not so deluded that I think everyone wants to hear this--hell, I don't want to hear it. After I started a Facebook page about teaching my special needs kid I felt the weight of that action--Lord was that heavy. Me. In charge of my child's education.

Guess what? Doesn't matter if it feels huge or not because it's my responsibility. And I don't have to do it alone--thirty-seven other people have agreed to do this with me or at least cheer me on as I try it. Yes, it's scary, but there's strength in numbers, and one way or another it's gotta get done.

Charlie "dancing"

An Interesting Development

Something new happened on our trip to Disney World.

Charlie found his voice.

I mean, he's not talking, but his voice? It's officially been located. Before, he never even seemed to be trying to talk. Now, he says, "Um" approximately one thousand times a day. That's a rough estimate of course. He says it in response to questions, when he's hungry or thirsty, or to let his therapists know that he's being ignored. His favorite time to use it is when he wants you to change the song that's playing. With this new-found skill he's letting us know that he'd like to listen to the first ten seconds of many, many songs rather than listening to any song all the way through.

I don't know where this will take us, but I sure am happy about the development.

Dreamin' Big

I have a secret.

I believe my child can learn anything. Anything.

Know what else?

I believe yours can too.

I don't think it will be easy--please don't misunderstand--but possible? Absolutely.

Last week I was talking with Erin about her son Fletcher and his adventures thus far in public education. Erin spoke frankly with me in saying that while school will have benefits for Fletcher, an education might not be one of them. His school just isn't ready for the Fletchers of the world. She wondered aloud, "where were the kids in wheelchairs before now? At home?"

I posed this same question to one of Charlie's therapist last week before our adventure O' Disney and you know what she said?

"That or an institution."

Seriously?

And because I can't let a question go, I had the same conversation with Charlie's teacher two days later. She basically confirmed what the therapist said--that the phenomenon of sending kids with multiple disabilities to school is still pretty new. I can't say I'm surprised, but at the same time I sort-of am. As I've mentioned before, I worked in four different schools over the course of five years and I can remember exactly ONE kid in a wheelchair. I chatted with some other parents on our visit to Plano and got more of that same picture. One mother said that her child is the first the school's ever had that's in a wheelchair. Another mother said that she'd prefer to send her child to regular school, but that the teachers there just weren't equipped to handle her child's disabilities, so she sends her child to a school specifically for the disabled.

So where does this leave me and Charlie? Or the other parents of disabled children out there?

I think it's important that to realize that many of us will be ground-breakers. Not all of us--some of us will be blessed to have resourceful, knowledgeable schools and staff that will rise to the occasion and accept our children with open arms.

Many of us, though, will be the first ones we know to attempt this. Charlie's teacher also told me, "I think the burden of Charlie's education will fall on you."

I know she's right.

I could kick and scream and demand all sorts of things for Charlie, but what I can't demand is that they see his potential. I can't make them see the bright little boy inside the body that doesn't always behave. There's only so much that I can make them do. The rest is up to me. I've been entrusted with a unique soul and that's a mighty big responsibility.

Even from a practical standpoint, I know that many of the people in public schools just aren't educated enough. The field of neurology and what we know about the brain has changed tremendously in just the past ten years. It can take a long time for science to become practice in the classroom. How many of Charlie's teachers will be up-to-date on neuroplasticity? How many will know that the brain can re-assign functions or that certain activities can actually create brain growth? How many of them will be stuck in the old way of thinking that says that you're born with your intelligence?

Honestly, I feel like I was made for this challenge.

I spent five years teaching learning disabled kids with little or no training. I learned on the fly, figuring things out as I went along. I had to argue with other teachers and I got called a pain in the ass more than once. I learned to FIGHT for what was right and I learned how to sweet talk my way into much more than that. I learned how to focus on my goal and spent a lot of time eliminating the distractions.

I've never had a student like Charlie, but I'm ready to try.

But I don't want to do this alone. I want to do it with other ground-breakers--other parents who are trying to give their brain-injured kids the best.

So, expect to see more stuff on here about lessons, what I'm doing with Charlie and how I'm doing it. Please, please, please send me any questions you have about anything you see here. Also, please share any successes you're having.

Maybe you're reading this and you're not sure. Maybe you think that nothing can be done for your child. Maybe you're right, but let me say this: Trying never hurt anyone.

I'll wrap this incredibly long post up with a story.

Charlie's teacher began her career working in an institution in the late seventies. There was a man there known only as Flipper because extreme spasticity had bent his arms permanently inward. Flipper had been in the institution since before his third birthday and was now over the age of eighteen. Everybody said, "oh that Flipper is so sweet, but so retarded." One day a nurse took a liking to Flipper and started spending a little extra time with him. Before long, she'd taught him to read. She fashioned a rudimentary communication system and it turns out that Flipper had been paying attention all along--he just didn't have a way of letting anyone know. Teacher left the institution, but later she heard that Flipper had moved out and was living in a group home.

That's a pretty big payoff for a little extra time on the part of a nurse.

If you think you'd like to share ideas and tips with other parents on educating your special child then please become a fan of Bird on the Street--I hope to make the Facebook page a place where we can share and learn from each other.

Disney World

Gosh! What is there to say about Disney World that hasn't been said? It's crowded and crazy and completely overwhelming. It's kicked my butt and now I've gotta figure out how to recover because there's so much going on this spring.

The first day was lukewarm at best for Charlie. He seemed to be confused mostly--not really understanding the rides and often closing his eyes because it was dark and there was soothing music. Great, right? I drag my kid all the way to Florida so he can experience lines and nap through the actual rides.

Well, at the end of the first day we took him on the Finding Nemo ride at Epcot and I sang to him a little so he would open his eyes. It was filled with fish--fish, and sting rays, and turtles, and all sorts of other sea creatures. If you've been by my site at all these last two weeks, you'll know we've been all about the sea. He GOT it.

After that, it got easier. By far, he preferred kiddie-style rides with very bright and extreme visual images. Except for It's a Small World. Something about that particular ride put him to sleep every. single. time.

The disability thing was quite easy. Some lovely commenter recommended getting a "stroller as a wheelchair" pass when we arrived and we did. This enables you to take your stroller into all the areas where strollers are normally not allowed. You can bring your stroller in lines and leave it right at the entrance to the ride. You do have to be able to lift your child to put them on the ride, but for the most part, it was extremely easy.

Put ourselves firmly in the "disabled" category was interesting. I find that I don't completely love the person I am when I'm in "disabled" mode--I get aggravated with people blocking ramps for no good reason, I was mad when one family went through the disabled entrance because it was their child's birthday, and other silly things like that. I mean, it's not a big deal, but for some reason it bugged me. I have to work on that. Disability access should be about making things the SAME--not making them different.

We ate too much. We did the meal plan thing, and it's really more food than you need. Seriously, no one needs two desserts in one day unless they're marathon runners or something.

I guess I should also say that I was surprised by how normal I felt at Disney World. You see, there are all kind of people, all kinds of children, and all kinds of circumstances. Blind, palsied, autistic, fat, thin, foreign--you name it and Disney World has it. We were just one of the crowd.

For those that like to know these kinds of things, Hollywood Studio had nothing of interest for Charlie. At the Magic Kingdom he liked The Many Adventures of Winnie the Pooh and Buzzlightyear's Space Ranger Spin. Teacups and Flying Dumbo were OK. Epcot was probably his favorite park--we went on Imagination and The Seas with Nemo and Friends several times. There's an activity area after the Imagination ride that he also really enjoyed. He was also strangely enthralled by Mexico's Grand Adventure which is pretty much a boat sailing by a lot of videos about Mexico. Still, we got a lot of smiles on that one so we did it more than once! In Animal Kingdom we enjoyed the flying Dinosaurs and the petting zoo area.

So, it was fun, but I'm tired.