Disability v. Personality

We went to an Easter Eggs Hunt today and I left in tears. My husband's boss's wife throws a big Easter event every year and there were inflatables, a trampoline, food, drinks, and a visit by the Easter Bunny.

Charlie doesn't like the sounds of other children screaming so he shut his eyes the moment we got there and pretty much didn't open them for anything. Most of the children were a bit older and were running around and screaming gleefully.

The icing on the cake came when we brought Charlie over to sit on the Easter Bunny's lap and he began trying to squirm free, but also still wouldn't open his eyes. Add that to his generally floppy posture and one of the mothers exclaimed "is he asleep?" At that point we were done and I took Charlie to the car while my hubby bid his boss adieu.

Charlie's anti-social thing is hard on me. I'm not wild about mommy-events. I'm not really able to converse about designer jeans, playgroups, the best private schools. I'm more of a AFOs, therapy, best emergency room kind of gal. I'm not stand-offish, but I find mommies to be one of the cliquiest demographics. Kids parties are dull and don't have enough alcohol or cursing, so there's really only so much enjoyment I'm going to get out of these things. I'm going because I think Charlie is going to get something out of them and he doesn't. He hates them. He hates sun, tons of strangers, and kids screaming.

Later we hit a concert in the park and Charlie rolled and played on the blanket, smiled, and generally had a good time.

Sometimes I forget that every piece of Charlie isn't about his disability. His father has always hated big parties. As a kid he would go inside and watch TV. He's fallen asleep at more keg parties then anyone I know. He doesn't like strangers, and he really doesn't like big crowds of them. His brother is the same way. They never went to a school dance or to the prom. They are social, but they aren't into the massive gathering thing.

So is some of Charlie's hatred of big parties part of his disability? I'm sure some of it is. . . his vision isn't great and the sunshine probably doesn't help. He uses his hearing a lot I'm sure screaming children don't sound like a symphony. But I'm equally sure that a big chunk of it is inherent in who he is. If he'd been born completely neuro-typical I might still be forcing him to interact at these kinds of events. He's just not a party person.

So, I'd say lesson learned, but I suspect I'll have to get beaten over the head with it a few more times before it sinks in. But for today I'll remind myself that Charlie doesn't like big, outdoor parties and I shouldn't be upset or disappointed if he reacts by shutting down. That is who he is.

This

This is probably one of the coolest things I've read in a while: http://imapixiemama.blogspot.com/2009/03/no-accidents-or-put-your-money-where.html

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!

A Slump

Interestingly enough, it me in the slump--not Charlie.

I would say that I strive to present the good side of raising a child with special needs on this blog.

That doesn't mean that I don't have my down days, though. A three day course of steroids has significantly improved Charlie's health, but he's still not 100% and my spirits are flagging a bit. I haven't been able to do near the amount of therapy that I want, and his intellectual program has been sadly neglected. On top of it all is the nagging question in the back of my head. . . "am I doing the right things?". . . "am I wasting valuable time?"

I guess every parent questions what they're doing and why they're doing it--just the way it is.

So I don't leave everyone with a complete downer: Charlie scooped a bite of food with his spoon today and then got it in his mouth. He also attempted another scoop/bite combo, but didn't get deep enough to actually get anything in his bowl. We're a long way from self-feeding with utensils, but he's definitely got the right idea!

Announcement

You may have already noticed it, but I am going to be contributing to the online magazine Blissfully Domestic in their Special Needs Bliss section. I put a little button on the right-hand side and if you click on it it should take you right to the Special Needs section. This isn't a paying gig or anything, but I am pretty excited about it. I'm focusing on Cerebral Palsy and also on Alternative Therapies. My first two posts will be about ABR and Feldenkrais, but I'm going to cover a variety of stuff including working with your child's therapist and finding the right doctor. Check it out!

Poop Post

Yes, this is a post about poop, so if that's not your thing, run along and come back some other day!

First, I wanted to tell everyone about this amazing product. Unless you or your child has cerebral palsy, you probably didn't know that people with CP often have digestive issues. Basically, smooth muscles are just as weak as some of the skeletal muscles and that makes "moving things along" difficult. Well, Alice's mom recommended a product a while back called Fruit-eze and this is a truly wonderful thing (quite a coincidence, Alice's mom blogged about poop recently too!). Anyway, if we give Charlie Fruit-eze than we can rest-assured that he WILL poop. This stuff works! We like it so much that we have told a lot of people about it and now they are coming back to us and telling us how much they love it. Charlie's instructor gave it to her grown daughter who's had trouble with constipation her entire life. Now, she has some fruit-eze every morning and is doing great. They are fruit-eze converts! Another member of my family (who will go unnamed for privacy reasons) feels like her entire quality of life has improved since using Fruit-eze. The best part is that it doesn't taste bad--kind of like a Fig Newton. The website even includes instructions on how to put it through a g-tube. Really, if you or anyone you know has issues with constipation then you owe it to yourself to try it out. We're basically buying it in bulk now if that tells you how we feel about it.

In other poop news, we've started letting Charlie poop in the potty as they say. Basically, most nights he'll be sitting in his high chair, eating applesauce laced with Phenobarb, and he'll decide that this is the optimum time to go number two. Well, gravity is on his side at that point, but sitting on a hard surface does pose a bit of a problem. He'd grunt, nothing would happen, we'd lay him out on his changing table and he'd do his business. One night the light bulb went off and I told my husband to let him sit on the toilet instead. We put him on there and he pooped like a champ. How great is that? No nasty diaper, no packaging up another person's crap, basically, it's like Christmas.

My husband says that this isn't true potty training since we aren't explaining things to Charlie and he's not telling us he has to go to the bathroom. I say, screw it, MY KID IS POOPING IN THE TOILET AND I DON'T HAVE TO DEAL WITH HIS FECES! True potty training my ass.

Finally, we went back to the doc today and while there is still infection in his ears, it's improving, so the doc thinks the new antibiotic is working. She does think he's got croup as well, though, so we're doing a three day course of steroids. Ahhh, the joys of motherhood, sick kids and crap. Will the glamour ever stop?

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.

Yet Another Whiny Post About My Kid's Ears

I think the title pretty much says it all. After Charlie cried during his Feldenkrais appointment (that never happens), and refused to do a thing for his instructor (another favorite) I knew something was up.

When you have a high-need child, a certain amount of post-traumatic stress exists and it's hard to believe that your child might be suffering from something as benign as an ear infection or a sore throat, but I went ahead and scheduled an appointment with the pediatrician as a starting point. Well, it was an ending point too. His ear infections (that's two) aren't any better and they may be worse.

I realize that my child has heart surgery, brain surgery, feeding tube surgery, and a host of other fun procedures. I should not be this upset about an ear infection, but he's miserable, therapy is a bust, and I feel like I should be DOING something. I just have to give him this new anti-biotic and if he doesn't seem to feel better by tomorrow then I have to go back in again. It kills me to think about the hours of therapy that he's missing AND he's lost about two pounds since this whole thing started. ARG!

In other news, Charlie went to his first wedding reception and his first crawfish boil this weekend and as long as I keep the Motrin coming regularly, he seems to be in a good enough mood. He saw all his grandparents and all his aunts and uncles in about one twenty-four period and did just fine. I wore a really cute dress that spun out when I turned, but I forgot to get someone to take my picture. Oh well. I didn't let Charlie eat any crawfish since he's not quite two yet, but he did eat a lot of enchilada dip. In general, things are fine, but I will be even happier when I get my usual, happy-go-lucky kid back.

Having picture issues, so if you want to see Charlie at the crawfish boil, puruse my Flickr stream over there------->

Spring Cleaning

So we're still suffering with allergies over here and I decided that a little spring cleaning is in order. There's really only one problem: I don't know much about cleaning. In my defense, I don't think my mother knows much about cleaning either. She was raised by a bachelor (I shudder to imagine THAT bathroom), and as long as I can remember we've had a cleaning person who comes about once a week. I mean I didn't do my own laundry or even load a dishwasher until I left home. Pathetic, right.

So I actually own a book on cleaning, but what I want are the secret tips that you get from actually cleaning. Like dusting. What are you guys dusting with? Paper towels? Swiffer cloths? What about toilets and bathtubs? What really gets the funk up?

For the most part I find that this isn't a super-commenty blog, but I need some help. . .share your cleaning tips, please!

Have I Mentioned?

I don't think I've mentioned it too much on here, but I put my family on a diet. Basically, I saw all the pictures that my SIL took of me in Dallas and decided that I'd had enough. I don't think I look huge, but I don't look the way I want to either, so I needed to make a change.

Anyone who has a family will tell you that diets are tough because you've got to get everyone on board. I'm lucky because Charlie will eat anything. My husband is a different story, though. He doesn't like anything pre-packaged, so my former dieting technique of eating Campbell's soup and Lean Cuisines wasn't going to work this time. For the record, that was a great way to lose weight when I wasn't feeding anybody else.

So I went to the store and bought a Cooking Light Cookbook, made a grocery list, went shopping, and started cooking. Generally, I'm not the cooking type. I'm more of the eating type. I knew I was going to have to cook to make this work, though.

So far I've had to buy a lot of ingredients in the grocery store isle marked "Oriental/Hispanic." Most of the food has been good, but it's definitely different than what I'm used to eating. Also, the cookbook gives exact parameters for portions and I think it's safe to say that my husband and I were eating almost twice what we should at mealtimes.

I've cheated some and I think I've lost three or four pounds in two weeks. I was dragging my husband along in the beginning and now he's definitely more gung-ho than I am. Did I mention I really like eating?

The funny thing is that I started this because I was tired of feeling fat, but there are all these other advantages that are cropping up as well. Since I'm cooking our meals, we have more time in the evenings to get other things done--nobody has to stop and pick something up and we don't have to go out either. I think we're saving money too because the portions are smaller and we have plenty of leftovers for Hubby to take to work the next day.

I'm no Donna Reed and it's definitely a lot more work this way, but I really think it's a good thing. Sure hope I can keep it up!

Coping

Today. . .

. . . I showed Charlie each of the trees and bushes that are planted in our yard. He tries to touch the green ones, and tries to lick the ones that are flowering.

. . . I stopped typing, looked over at Charlie in his Rifton Chair, and he gave me a quick smile before looking away.

. . . I got three friend requests on Facebook and they were all people I actually know!

. . . I thought about Melanie's questions about coping with her special needs child.

. . . and I read this blog about a little girl who was sick and then gone so quickly.


I've gone round and round about how to describe coping when you find out your child is going to be disabled, and I've come to the conclusion that I'm worthless in that regard. Here's a bit of how I dealt/deal with Charlie and my role as his mother:

When Charlie was born I went through a small moment of "why me?" In the years before Charlie was born I felt like I'd really grown as a person. I'd taught special ed for five years and the last two I'd done it in a low-income school. I'd tutored kids free of charge. I'd gone back to church and started volunteering there as well. I felt good about the person I was becoming and felt like I didn't deserve to have a child who was disabled.

I knew in my heart, however, that a child's disability has nothing to do with their parents. Every person comes into this world with their own journey and while mine and Charlie's are linked, they are not the same.

And then one day I was sitting at the doctor's office and a man walked by me talking loudly on his cell phone and he said, " You need to ask yourself why God is bringing this to you."

It was a novel idea at the moment. . . that God was bringing me a set of circumstances for a reason. And why indeed?

Maybe all that stuff. . . the working with special needs kids, the praying , the volunteering. . . maybe all of that was just getting me ready for this job.

These days I think I can honestly say that Charlie himself causes me no pain. Being a mom to a disabled child is fine by me. Do I hurt for him sometimes? Of course, but my hurt is that other people won't see him as I do. I ache that the doctors are more concerned with sitting up than with the devilish grin he can give. I hate that people are worried more about walking than with his amazing giggle. I am sorry that people will be slowed by the trappings of disability and won't get to know the Charlie that I know.

Is it conceited or crazy to think that I am uniquely suited to be Charlie's mom? Probably, but that's how I cope.

Make That a Double

Ear infection that is!

I finally relented and took Charlie to the doctor today since he was still funky/congested and even Zyrtec didn't really seem to help.

Turns out he has an infection in both ears.

So I've gone from thinking that my son is a diva-in-training to thinking he's a complete rock star because he's got an ear infection and is still pretty much a happy kid.