Stepping Up

I actually had another post planned for today. It's edited and everything, but some things have come to my attention in the last few days and I feel like I have to say something.

In the last few days I've read the blogs of two different special needs parents whose children are suffering adverse effects after the long-term use of reflux medications. Both of these children ended up in the hospital undergoing a series of medical tests. We no longer give Charlie reflux medication--mostly because it never seemed to help us--but I was always told my doctors that the medication is safe and never told about any side-effects.

If there's one thing I've learned as Charlie's mom it's that no two parents are going to do it alike. You can co-sleep or put your child in another room, you can pursue alternative or go strictly traditional, you can feed them all-organic, gluten-free, casein free or you can take them to McDonalds. When your child has special needs, there are even more decisions to make and for me, the stakes seem higher. This morning Charlie woke up at 4am whining and fussing. No amount of rocking or singing would get him back to sleep and he seemed to be getting more and more agitated. I was panicking. I was sure this was related to his seizure med change and couldn't decided if I should give him some Va1ium or just wait to see what happened. Finally, my husband was struck with a brilliant idea and took him into the kitchen and fed him a peanut butter sandwich. He instantly went back to sleep.

I'm sharing that story because I want to be clear that I'm no doctor and I'm no expert. I'm as confused as anyone else about the right things to do for my child.

But I also think that it's time we "Special Parents" started asking some tougher questions. I myself can think of at least four different questions I've never asked our doctor or even researched when it comes to medications. For example, do medical students take classes in pharmacology or is that covered more in residency? Are drugs ever tested on children? What kind of data is available about the long-term use of medications in children? Is it possible that kids with CP, with their funky digestion and limited mobility, process drugs differently than typical children? Whose job is it to tell us about possible side effects?

This doesn't mean that I think we should stop giving our children medicine. I just think we need to be hyper-vigilant. We are still our child's best advocate. I know that even as a tiny baby, doctors would recommend over the counter products that were contra-indicated for Charlie's heart condition. Who knows how many other times this happens? Doctors are stretched thin these days and we would be best served if used them as a resource and not as almighty beings.

I know this parenting thing is never easy. I know we're all doing our best. I also know that for me, I'm going to try harder to be informed about the medications that are recommended for Charlie. I'm also going to try to limit the use of medications for extended periods of time.

OK, stepping off my soap box now--don't forget to enter my giveaway to win free art or stationery! If you don't want it for yourself, it would make a great gift.

Lameness

I know I've been a lame blogger--my husband has been working 24/7 and that has left very little time me to sort through my thoughts and get them into any sort of coherent format. I've written a LOT of individual paragraphs, but no one post. His big project is due on Monday, however, so hopefully I'll get a little normalcy after that. Right now it feels like every day is week day and I'm starting to get confused. I was sure today was Monday. It wasn't.

I am, however, having a lot of things going on with my online business. I've got a sale going on--25% off everything in the store when you type in the code Holiday at checkout. I'm also doing giveaways all this month on my Facebook page. This week I'm giving away a free print or pack of stationery, so go leave me a comment and see if you win. The giveaways will get bigger as we get closer to Christmas so keep an eye out!

So that's it! Go forth and shop!

Thankful for Good Drugs

We've begun the great Pheno-wean of 09. This is thrilling stuff, I know.

As I've mentioned before, we began weaning Charlie off of Phenobarb a few weeks ago and switching him over to Keppra. We weren't having a problem with seizures, but I was concerned that he was a little mellower/sleepier than I thought your average two-year-old should be. Also, when not actively engaged, his eyes often had a glassy/half-mast appearance. I didn't know what effect the medicine was having (if any), but many parents reported problems with lethargy and Phenobarb, so I thought it was worth investigating an alternative.

I am SO glad that we did.

Don't get me wrong--things aren't perfect, but it is soooo much better than where we were before.

The first three nights after we started the wean, we saw a few jerks--like when you're dreaming and then you think you're falling. I did a lot of googling and couldn't get a real clear answer on whether or not this is considered seizure activity. Those have gone away now.

Charlie is now sleeping less and he's more restless when he does sleep. He goes to bed on time and wakes up at the same time, but his nap has almost disappeared. It's a cat nap. For the record, the neurologist assured me that Phenobarb was no way affecting his sleep habits.

Those are the negatives. Ever the conscientious journalist, I want to give you both sides of the story.

The positives are really good. The first thing I noticed was that he didn't seem to wear out as quickly. After a rigorous PT or OT session, he could still keep his eyes open. Then, he started to become more visually attentive. The vision thing is cool. He looks around more often and with more purpose--you don't need flashing lights and music to get his attention. His eyes look brighter. I'm seeing less cross-eye when he tries to focus. The PT noticed his vision when she saw him earlier this week. He's also more interactive. He giggles more readily, but he's also quick to let you know if he's unhappy. I guess some people would view that as a negative, but not me. . . I want him expressing himself.

We're currently at 25% of his original dose of Phenobarb and pretty close to full-strength on the Keppra. I can only hope that the rest of the wean is as smooth. Do me a favor and knock on some wood, kay?

Nitty Gritty ABR Information

Ok, here are all the wild and crazy ABR details. The longer we are involved with ABR, the more information, techniques, etc we learn, so I came home from this trip with a head completely stuffed with information.

This next three months will definitely be the era of the head. We have a l-ot of work to do on Charlie's head.

There are plenty of people who wouldn't be real thrilled to come home with a passel of head exercises. Actually, I probably would have been one of them six months ago. But I've had more time to think about it, and I'm starting to see the value of them. ABR says that if your head isn't right, then there's no way your neck and shoulders will ever be right. By extension, you'll always be working with poor alignment and posture, which effects every aspect of movement. In a more literal sense, it's easy for me to see that your brain is kept in your head and if your head bones are messed up then it might compromise growth in development in one of your most vital organs.

So we're working on Charlie's flat head. I've got multiple exercises targeting the very flat back of the head he's got. In case you're wondering, a normal head has a very noticeable curve along the back. If you look past Charlie's curls, you can see that his head just shoots up straight from his neck. You'll see this a lot in CP kids. Please don't fall victim if your neurologist tells you that this is because their brains aren't developing properly. I'm calling the chicken or the egg on that one.

Most of our other exercises address Charlie "shoulder girdle." Imagine you have tight, stress-filled shoulders--that's what Charlie's shoulders are like naturally. We're working on bringing them down and back ( what your momma called good posture).

In addition to all this, the good folks at ABR are developing a new type of exercise--one that in test-runs has shown great promise. The thing is, it's weird. It involves a deflated playground ball and I feel totally odd using it. Right now I'm just doing general work with it--getting familiar--so most of those exercises are directed at overall trunk strength. My brother has demanded a demo, so here' s a quick little video of it:

What did I tell you? Weird lookin', huh? Luckily, these ABR people are good in the results department, so I'm not too worried about it.

We recently finished one year with ABR so in the next few weeks we'll be getting our yearly assessment. I'll let you know when we get it and we'll see how much progress Charlie's made in a year.

We Have Nothing in Common

From time to time I get a comment about my blog--either in person or via the 'net that goes something like this, "I don't know anything about cerebral palsy/ABR/what you're going through."

I will confess that I love these comments.

For a very long time this blog was for me. It was a chance to vent and organize my feelings when they threatened to eat me alive; It was a place for me to escape. It was also an opportunity for me to interact with other parents of special needs children--my own little support group.

But when I get comments from the non-special needs community--from people who know me in real life or people who don't--that' s when I get all warm and fuzzy and think that this blog can be more than just a selfish thing. It probably sounds naive and optimistic, but I think that this blog can be a place where people can learn about disability and disabled children without fear or worry about offending someone. I can let it all hang out and they can see that while my child doesn't walk or talk, he does smile and giggle, eat peanut butter sandwiches, dress up for Halloween and finger paint. People have a chance to really look and see beautiful blue eyes and a halo of curls.

I don't know how it was for everyone else, but I was raised that it was rude to stare. It is rude to stare, but in my eagerness to be polite, I think that I never spent more than six seconds looking at a disabled person. I would fix my eyes at some point about three feet above their heads and act as if they weren't there. Doesn't take a rocket scientist to see that wasn't exactly a solution.

I'm happy that this can be a place for everyone--not just the special mommas. This is a place where someone can stare. My deepest and most Pollyanna-ish wish is that we could all learn a little something from each other. I can read about normal kids and see that sometimes Charlie is completely normal or that sometimes the moms of typical kids want to rip out all their hair in frustration too. You can read my blog and find out that I've actually driven forty-five minutes to buy a pair of shoes for a kid who's feet don't touch the ground or that my saddest moment in the last six months was when Charlie ripped my iPod out of the player and it didn't work for two days. I can read almost any blog and see that we all deal with illness, family drama, Target shopping, and difficult decisions. The distance between two people isn't nearly as far as we imagine. We all have joys and sadness and heartbreak and triumph. The lens may be different, but the feelings really aren't.

So if you read this blog and have "nothing to say" then that's fine by me, but don't feel like you don't know anything about my experience or that your input isn't valuable. We're all learning from each other.

Well, We're Here Again

Well, we're in Plano again--same hotel, similar room, same families, same food.

A little over a year ago I started this ABR thing. I packed up my child, my mother, my father, I got on a plane (something I hadn't done in years), and off we all went to Montreal, Canada. I was fairly certain that I had lost my mind.

I was also certain that I had to go, and had to try this therapy. Charlie's doctors had already told me that we were doing everything we could do and still my little boy could barely move, could barely pick up his head, and could only roll off of his stomach. He definitely couldn't sit.

All through the ABR training, I would have these flashes where I realized how crazy it all seemed. I mean, they wanted me to push on my kid with towels. Towels don't feel very scientific.

I was relying on the experience of others. Countless parents had told me that ABR helped their children more than anything else. Jacqui at Terrible Palsy had documented her son's progress and I hadn't seen anyone else get those kinds of results.

So I was stepping out on a limb and trying something untested. I knew full-well that it could be a disaster--a waste of time, money, and energy, but felt that it was a risk worth taking.

ABR has been so good for Charlie. Within weeks of starting it, he was rolling onto his stomach and commando-crawling towards things that interested him. His sitting improved, his vision improved, his reflux got better. It was obvious that we'd made a good decision for our family.

The amazing thing about ABR, though, are all the families that don't have blogs, never post a video on Youtube, or a picture on the support board. These are the kids that blow you away when you see them after three or six months. It's also really inspiring to talk to the parents who have been doing this therapy for a long time. Today I talked to Julia' s mom, Carolyn. Julia went into cardiac arrest during a routine hospital procedure at two months of age. After this happened, she was blind, deaf in one ear, and didn't respond to touch. The doctors told her parents that she would probably spend the rest of her life in a persistent vegetative state. These days she's in a wheelchair, but she can see and hear, and even talks some. These days she's about seven and working on self-feedingand reads age appropriately. She reads. Swish that around in your mind for a few minutes. I'll be honest, if my kid didn't respond to touch, I wouldn't know where to start. It's crazy what is possible if parents are dedicated to their children.

Well, I'm exhausted. This trip has kicked my butt and I still have some more training tomorrow morning. I want to talk all about our Phenobarb wean and what body parts we're working on next, but I'm calling it a night.

Freudian Slip

Well, I missed my appointment with the Physiatrist today. They told me two-fifteen and I heard two-fifty. I showed up smiled, and they told me I'd missed my appointment. We go back next week.

I definitely think it was some sort of Freudian thing. I really don't want to go to this appointment. I've put it off for about two months, but the PT keeps asking about it, so I figured I'd better go ahead and schedule it.

You see, I'm facing what I would call a pressure sandwich.

I've got the physiatrist who wants to put Charlie on Baclofen. I don't want to put him on Baclofen, but I'll still have to listen to the benefits of it. Including some stuff that I think is total crap. Stuff like, "it really only effects the tight muscles." Right. An oral medication. Sorry, but my barely-passed-Biology brain finds that a little hard to believe. Also, Charlie's PT and OT feel strongly that Baclofen is not the way to go.

The PT and the OT are lobbying for Botox injections in Charlie's hamstrings. The doctor, on the other hand, doesn't think that Charlie's condition is severe enough to warrant Botox. All of Charlie's alternative peeps (which includes my MIL and my husband) think that botox is an unwarranted poison that doesn't need to be anywhere near Charlie.

So you can see the situation I'm in. No one agrees. There's no consensus. Also, all these people and all these opinions won't be with me in the doctor's office. There, I'll be alone.

Is it any wonder I don't want to go?

Love at First Sight

Today Charlie's OT brought over this:




I love this thing.



It's a Gator Walker. Before we had a Rifton Pacer, which looks pretty much the same, but in real life it's much bulkier and has all these different parts. Charlie would just stand in it completely befuddled. In this contraption he's getting the picture much quicker. Seriously, I think I have a crush on this thing.

Tomorrow we have an appointment with He Who Loves Baclofen aka our Pysiatrist. I'll keep you posted. Also, I am now completely reminded of a little tidbit I've been meaning to share with you guys. A little while ago, when I was trying to make Charlie's appointment with the Physiatrist, I couldn't get the number of his pediatric group to come up, so I just googled his name. Well, wouldn't you know it, a link to his Facebook page came up and it's private but I was still able to see what has to be the goofiest picture ever. I laughed for a couple of minutes. You should try it--Google your kid's doctors. Maybe I'll enjoy my visit a little more if I just keep picturing him in a funny hat?



So, I'll let you know how the appointment goes, and I also promise to post some incredibly fabulous Charlie photos I took this weekend. Try not to get too excited.

My Interests Meet

I don't spend a lot of time discussing my art on this blog, but I think anyone who reads here regularly has probably picked up on the fact that I like to paint. I have a small business, but Charlie is my number one priority and sometimes the art stuff has to take the back seat. Those are the choices you make.

I'm happy that in the next few days I'll be working on a project that combines my love of art with my new-found experience with the disabled.

A fellow blogger has asked me to do a piece of art for her son's new room--he's an adult living in a long-term care facility. Like any mom, she wants the place to look nice and she's enlisted me to help.

I'm really excited about this. I'm planning on doing something that represents his local area since that is pretty much my thing--I like to paint things that are more than just pretty--I like a little meaning as well.

I know he likes bright colors, so I want to include that, but I don't want it to appear too childish--he is an adult. Like I told my husband, I want a Pixar film and not an episode of Barney. His mother also told me that he likes to run his hand along things, so I'm hoping to include a lot of texture in the piece.

So, bright colors, texture, and something with a little meaning. I'm psyched--or some other dorky eighties term that denotes excitement

In other art/craft related news, our very own Ellen is looking for contributors for a project she's doing with Nickelodeon. The project is for a section of the Nick website known as Parents' Connect and it will be a holiday countdown. She's looking for easy craft projects that young children can do with their parents. These should be craft projects that can be done with a child under six years of age. It could be a new project or something you've already covered on your blog. Basically, you write a quick how-to and then snap some pictures of the project in process. She's looking for stuff like:

• Decorations
• Cards
• Gifts
• Stockings
• Wrapping paper
• Green/eco-friendly holiday fun

And she means all the winter holidays--not just Christmas, so no worries if your family celebrates Kwanzaa instead of Christmas. If you're interested, please let Ellen know--her e-mail address is lovethatmax [at] gmail [dot] com. Your article will include a link back to your home blog and Nick gets about five million visitors a month.

Pictures taken at a Zoo 2 U party.

Good Things

In no particular order, some thing that are making me happy:

1. The Cure Pity website brought to my attention by Felicity. If it doesn't make you smile at least a little then you might want to have your pulse checked.


2. Winning this pair of earrings from Amy's giveaway--her sister made them and they are delicate and beautiful. And purple and gold, which is a big deal in my neck of the woods. My camera isn't doing them justice, but they are beautiful and only seven dollars if you wanted to buy a pair. Go check out her site--also, 30% of her profits go directly to charity work in Africa so you can look good and feel good.


3. This post on Flotsam Blog--mostly because we are ob-sessed with Signing Time over here.



4. This song by Cowboy Mouth--my favorite line being, "if you do it at all, then you oughta do it right." So true.







5. We're headed to Plano next weekend to learn some new ABR exercises for Charlie. These exercises have been so good for him I'm literally dying to go learn some new ones.




6. My brother and his fiancee are getting a puppy--she looks like a doll and I get to meet her this weekend.


7. So far so good on the Phenobarb wean. Really, he's probably still got plenty of it in his system, so this isn't the biggest deal, but I like to look on the positive.


8. Charlie met another goal in physical therapy--sitting (no prop) for twenty seconds. Next up: thirty seconds!
9. Charlie's dancing:

Now go up there, click on one of those videos and rock out a little--it's the weekend!

Neurology Update

Well, today was the big Neurology visit.

Today was the day I was supposed to go in there and get my kid off of Phenobarb.

I was somewhat successful.

If I'd gotten everything I wanted, I would have started to wean Charlie off of Phenobarb. IF we had seen seizures or concerning activity, then I wanted to start of something else--my first choice being Keppra.

Well, the Neurologist wasn't really having that. She said we could lower his current Phenobarb dose, or we could try a new drug all together. She wasn't really comfortable weaning him off and then playing wait and see with the seizures. Charlie's EEG is pretty ugly so I could see her point. One day I would like to pursue controlling things strictly with diet, but most anti-seizure diets involve cutting carbs and Charlie is currently in the throws of a serious crush on peanut butter and jelly sandwiches. I think this is a normal toddler thing--being obsessed with one particular food--and I'm hoping it doesn't last forever.

I didn't want to keep up the Phenobarb at all--the stuff is a barbiturate and I just don't think he needs to be taking it forever. Her next choice would be Lamactil, but I haven't heard anything about that drug so I countered with Keppra. She said Keppra was fine and wrote out a schedule for taking us off of Phenobarb and putting us on Keppra. I also asked her if she thought we should have some Diastat in case Charlie does have a big, bad seizure. She thought yes, but they don't make Diastat in doses small enough for him, so she gave us a prescription for Va1ium instead. Despite my family's jokes, the Va1ium is for Charlie--not me.

She also asked other Neurologist questions although at this point I do think she trusts me to take care of Charlie and doesn't probe for hours. She was pleased to hear that his vision is improving and also that he could get himself up twelve inch step. She warned me that we would have to stay vigilant about his eyes--his at an increased risk of lazy eye since his eyes don't always function as a single unit. She also reminded me that he needed to be standing every day.

I kept Charlie calm through the thirty-minute conversation with medical students and the twenty-minute conversation with the neurologist by letting him listen to the iPod. Everyone loves watching Charlie listen to his music--he smiles, coos, and sometimes even giggles if a particularly fabulous song comes on (this week Pitbull and New Kids on the Block are popular). At the end of the appointment, the neuro said I should tape him listening to his rap music and put it on Youtube. Little does she know this kid's entire life is on the interwebs.

Tomorrow we'll hopefully start the great Phenobarb wean of '09. I'll keep you posted.

Communication Breakdown

About a week and a half ago Charlie's reflux started acting up. I've been extremely proud of all the progress we've made in this area--Charlie takes no medications for reflux any more. We keep things in check by limiting his dairy intake and giving him a natural herb called Slippery Elm that helps to heal the digestive tract. ABR has helped too, but I'll stay off the soap box for today.

When Charlie starts refluxing these days, it usually means that he's gotten some type of cold or other illness and in general his body just doesn't seem to work as well in these situations.

My first hint that something is amiss is that he'll start biting his forearm. I have no idea what the correlation is, but for some reason he bites his forearm when he's refluxing. If it goes on for a couple of days then he'll have a circular bruise on his upper arm from all the bites.

So about a week and half ago he starts with the arm biting and I assume he's picked up cold. His PT comes and as soon as we get him into standing, he refluxes exorcist-style. It was so bad that I cancelled our Feldenkrais appointment and took him in to see the pediatrician. Other than some weight gain (hooray!), nothing of any consequence was discovered.

So the reflux continued and I still had no idea what was causing it. I just kept thinking that it would run its course.

This morning, after nine days of reflux, it finally occurred to me to ask my husband if Charlie had been getting his usual morning dose of Slippery Elm. Hubby is very good about these things--that's part of the reason why he's in charge of them--so I had assumed that everything was OK in this department. Imagine my surprise when he said, "yeah, I've been meaning to bring that up--we've been out for a while."

Good. Lord.

Here I am, making appointments, making assumptions, having lousy therapy appointments, playing House, and all the while the answer to the reflux mystery was right in front of me.

Assumptions--they'll be the death of me yet.

I'm Not an Eternal Optimist

Sometimes I think that people who read this blog think that I'm an eternal optimist. I definitely don't think of myself as an optimist. I consider myself a realist. For me, part of being a realist is trying to avoid looking at the world through disability-colored glasses. I think everybody does it from time to time--assumes that what we're going through is tougher than what anyone else is going through. It's natural.

The other day Hubby was talking about one of his co-workers kids--saying how much easier he thinks it is for him. He tells me, "they just bought him a car that he can steer." And while I'm sure that there are things that are easier when your child is typical, far be it from me to make any assumptions about someone else's situation. And honestly? These people live in an apartment. The idea of a two year old in a motorized vehicle in an apartment is horrifying to me. Think of the wall damage.

I'm sure I do it too.

The other day I went to our local, mostly-accessible playground for a birthday part with Charlie. I brought my MIL along because Charlie pretty much needs one-on-one attention and I was hoping to catch up with some people I hadn't seen in a while. My MIL was on one of the big swings with Charlie in her lap and I was sitting at a picnic table alone, just watching them. A woman sat down next to me with her daughter who was at least five, with very low tone riding in a Maclaren stroller. You can never be completely certain, but I was pretty sure the child was disabled.

I smiled broadly at the woman and her child--excited to be around a fellow special needs parent. The woman ignored me. "Hello" I said in my warmest, friendliest voice. "Hello" she replied, resisting any sort of eye contact, keeping her gaze firmly on her other daughter and husband who were playing on the swings. I continued to look her way, trying my best to look friendly and open-minded.

In the end, I never really talked to her. She pushed her daughter away, and I never got up the courage to say anything else.

So I wonder. . . is the disability thing as isolating as it sometimes seems? Am I open to meeting other people who might be open to Charlie? Or am I too busy playing Mama Bear to give anyone else a chance? Do I sometimes miss an opportunity because I'm scared of being disappointed?

I'm not an eternal optimist. . . but I do play devil's advocate and I wonder. . . are there things I could be doing differently?

Miracle Veteran

Candace is having a contest over at her blog. Candace invented the term "Miracle Veteran" and now she's doing a contest for all the miracle veterans out there. The contest is simple--she wants parents to describe one miracle they've witnessed while raising their special needs child.

Well, I started drawing a blank on this one. I could completely relate to the term, but suddenly all of Charlie's little accomplishments seemed, well, small.

And, man, how easy is it to do that? To work towards a goal with your child, accomplish it, celebrate, and then immediately begin taking it for granted. Just because it's expected, that doesn't mean that it isn't amazing and beautiful. It doesn't mean that there isn't some other parent who wishes that their child could do that. Sometimes we're hurrying so quickly towards the next goal that we forget to really celebrate the ones we've achieved.

So this might not count towards Candace's contest, but today I'm just going to list all the things that Charlie's accomplished. The things that I take for granted, but that many people thought he may never do. My miracle list:

1. His heart beats steady and true with no medications.
2. He swallows thin liquids easily.
3. He takes every meal by mouth.
4. He eats food of all kinds with no problems.
5. He self feeds (with his hands).
6. He holds toys in his hands.
7. He plays with toys.
8. He sees.
9. He tracks moving objects.
10. He rolls in both directions.
11. He grabs his feet.
12. He prop sits.
13. He laughs.
14. He drinks from a cup (very messily)
15. He reaches for items of interest.
16. He commando crawls.
17. He watches TV.
18. He rides in a grocery cart.

Yes, these are basic things, but they're the kind of things that we never knew if Charlie would accomplish. Life is never what you expect, but isn't it wonderful when it's surprising in a good way?

Good Things--OMG Edition

This one's short, but man we've had a great couple of days around here.

1. All the wonderful advice and encouragement I receive on my last post.
2. Charlie can now sign "cup" fairly consistently. He's still doing it mostly when prompted, but at least twice now we think he's done it independently. Progress!
3. Charlie's right hand, which is usually fisted when he's awake, is starting to open up. He's even managed a couple of normal claps which he's never done before (usually it's more like he's slapping a fist).
4. Charlie has started taking steps with his left foot. We still have a LONG way to go in the walking department, but this feel nothing short of miraculous. Walking of any kind feels like a complete bonus--we were assured he'd be in a wheelchair and it just surprises me that he may also be able to get around the house on his own.
5. I found a girl who wants to sell my stationery and custom alphabet canvases. She's a local entrepreneur type whose been super-successful selling in other people's stores and now she's opening her own little boutique where my stuff will be available on a comission basis. I'm sooooo excited to be working with her. So. very. excited.

That's all!

Acceptance

I often feel that parenting Charlie is a lot like those games they used to have at Chuck E. Cheese. You've got a mallet in your hand and you're supposed to hit some little critter--maybe a gopher?--as it pops out of the ground. As soon as you've bopped one into submission, another appears. Bop that one, and there's another waiting. With Charlie it seems like that. In the beginning it was eating and head control. After that it's sitting and solid foods. On and on it goes with specialists, therapists, and parenting books constantly presenting you with another worry or goal.

These last couple of weeks I've really had to face the fact that Charlie isn't talking and it's time to do something about it.

I feel fairly certain that this will not be an easy activity. You see, Charlie has pretty much no interested in communicating anything other than happiness or displeasure. As far as he's concerned, those two emotions are enough to get most of his needs met.

We've taught him a few signs--he could actually sign "more" before his first birthday--but he doesn't like you use them. We're starting to push. Our goal is to add a new sign to each week until we've got most of the basics down. Last week we worked on cup. This week I'd like to work on "movie," but that's more complicated, so I'm not sure how it will do.

It's just hard for me to accept that this isn't something that he wants to work on. I think I'm OK with the idea that he may not speak--the idea that he doesn't want to is hard. It's hard for me to accept the amount of work I'm going to have to put into it. It's hard for me to accept that he may be five or six years old before he has a good way of communicating with me--or longer. Even worse is that he doesn't seem interested in communicating.

So I've been grieving a little bit. Wondering if I'm doing enough or doing the right things to help him. Wondering if I'm holding him back. Wondering if there's something I haven't tried.

But I'm also doing the only thing I know how--making a plan. That's the only way I ever get over this stuff--focus on the stuff I can control.