Lately I’ve been borderline obsessed with Charlie complete disinterest in speech. One of the people from the school district came a while back and absolutely marveled at how well Charlie doing using his augmentative communication device (a.k.a. Tina the Talker). I revelled in her compliment for about half a second before turning my agst back on full blast. I mean, the device isn’t terribly useful at this point and I find myself yearning for a child who can tell me which video he’d like to watch or even that he’s thirsty–I’m only human! Sometimes I think I’ve tried it all when in reality he hasn’t had a thing to drink in hours.

In truth, I think that I can worry about speech because I feel good about other things. Progress may be paint-dry slow, but I can see Charlie improve physically day after day–his body looks better and moves more freely. I’m addressing his intellect–we cover topics, read books, watch movies, and I see the wheels spinning when he’s introduced to new things. He eats; his vision is improving. I could just revel in this stuff but why do that when I could find something new to worry about?

So I worry about speech because it’s next–because I can taste normalcy in a way that I couldn’t before. In the beginning, I was glad that he could move all arms and legs. He’d make eye contact with the camera and I’d send the picture to everyone in my address book. I was happy for any victory.
I have often been confused by the parents of other children who are angry about their child’s disability. Specifically, parents whose children are disabled, but are still able to walk and talk. I’m not saying that they don’t have a right to be angry–I think anger is a valid part of the grieving process–but I look at them and see all that they have. They’ve got walking or talking, hell, good vision. I guess from their perspective, something is missing and that’s the thing we focus on–the missing thing. All I can see is what they do have.

Jessica is a fellow blogger who discusses her days as a special needs parent. She posted something recently that hit me square between the eyes and is still lingering. She wasn’t looking for pity or even really dwelling on it, but she revealed to us that her son, Connor, has what is considered a “severely life-limiting” condition. He’s already lived three times longer than the doctor’s original estimates and I can’t tell you the number of times I’ve read about her performing rescue breathing on him because of a seizure. She speaks frankly about her desire to preserve and record as much of Connor’s life as possible because they just don’t know when it will be over.
I wonder about that perspective too. In the beginning of Charlie’s life I was so scared about the future. So scared about having to care for him FOREVER. Scared that I wouldn’t’ be strong enough to go the distance. What if the opposite were true? What if each day was a gift that I might not get again? What would I do differently? Would I worry less or more? Would I handle it with Jess’s grace or crumble under the weight of it all?
How much of our struggles comes from our perspective? How much of it is real and how much of it do we create? Can we do things to make it easier? Can we give ourselves a break sometimes?

I wonder.

Photographs from our recent Ocean activity, putting sea horse stickers in the ocean. Not a hit. In this second picture he’s willing my husband to come save him.

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  1. I think that every parent wants the absolute best and most for their children. That is a part of human nature. It is good that you recognize this and acknowledge it. It makes you a passionate mom. Not a thing wrong with that at all!

  2. I am one of those parents whose kid can walk and is starting to talk. And yes, I am so very grateful for those things. I often tell our speech therapist just what he means to us. I do not know if he realizes what the gift of speech means to a parent who is afraid it might never occur. I am so so grateful. But my kid can't eat and has a feeding tube. Eating is one of those most basic of human things and my kid can't do it. And that hurts. There is such a spectrum of disability but I think it is hard for everyone on the spectrum, just in different ways. My kid looks "normal" enough that she is expected to act normal but is too "slow" for the "normal" crowd. She is disabled but not "disabled" enough to fit in with the "disabled" crowd sometimes either. So I think there is some sadness that comes when your kid doesn't fit nicely into either category. Each special needs kid has their own set of special needs and with that comes a loss of dreams, no matter what the disabilty or how severe. BTW, I love the first picture. Charlie looks so into whatever you are telling him. He is so friggin cute!

  3. MeghatronsMom says:

    Well said Jamie. I can't add much more to that.

    My kid looks "normal" enough that she is expected to act normal but is too "slow" for the "normal" crowd. She is disabled but not "disabled" enough to fit in with the "disabled" crowd sometimes either

    We have that same problem too. We are on the walking with DAFOs, talking but not effective communication.

  4. First of all, that boy of yours is stunning as he's "willing your husband to save him"- so funny!

    When my bird was a year old and starting to roll over, as the other babies in music class ran circles around her (literally), I made deals with god: if only she'd walk… After an enormous amount of phys therapy (and $$$), she was able to take steps, then walk and then run. Of course, now I curse the PT as I'm chasing her. But, then it was, "if only she could talk", "if only she'd stop spinning, flapping arms", "if only she'd interact with the other kids", etc. It changes. So, yes, my kid walks and talks (kind of), but I want MORE MORE MORE. I think it's natural to keep wanting more. And it's a good thing, too, because that's what keep pushing my kid and let's her know I believe in her- wherever she is.
    Perspective is a funny thing. After almost 5 years of searching for a diagnosis (besides autism) and loads of medical testing, I've sat in way too many doctor's offices and learned WAY too much about the F'd up S that's out there. Every time the results come back negative, I am grateful. But, there's also a different kind of perspective: that which I get when I go to the park, library, grocery store, or the dreaded birthday parties and see the "normies" and grieve a little more.
    So, perspective goes both ways. Sigh.

  5. I think we all have "monsters" to obsess about in this difficult world of special needs. No two kids have the same issues-an infinate combination of difficulities. That's what we do as good moms is worry about the next turn in the road. I know how badly you want Charlie to make progress in this area and how frustrating it is when it comes so slowly. I am right there with you, girl! The eating is the tough part for Faith but even after six years they can still surprise you- little bites!

  6. I think we all have "monsters" to obsess about in this difficult world of special needs. No two kids have the same issues-an infinate combination of difficulities. That's what we do as good moms is worry about the next turn in the road. I know how badly you want Charlie to make progress in this area and how frustrating it is when it comes so slowly. I am right there with you, girl! The eating is the tough part for Faith but even after six years they can still surprise you- little bites!

  7. I have been thinking a lot about perspective, too, these past few days as I've been emailing with a mom whose kid is medically fragile. Actually, I've thought a ton about this over the years, too. Some days, we all inhabit our own private hell in which you think few moms have it as hard as you do. Some days, you hear about another child who is having a tough time and you think about how lucky you are that your kid is at least stable, even though he has his challenges. It all depends on your mood/the day…. Like you, I was so worried about the speech, especially since i knew it was going to be one of Max's biggest challenges. But I also knew he had to first be pretty secure with his physical strength before the oral-motor stuff could really kick in. Because for years, he was so focused on commando-crawling, then doing a quadriped crawl, then learning to walk that it literally took all of his momentum. Plus, he needed more stable trunk control to articulate sounds. You know Max; today, he does not exactly have fluid speech BUT he has words, he communicates, he uses his Dynavox. We grew into this place. I think if you would have told me when he was 2 that he still wouldn't have "speech" by age 7, I would have been bummed. But now, I am THRILLED by his progress. As he's gotten older, my perspective has changed. You grow into things, same way your child does.

  8. Felicia Garrett (Briley's Madre) says:

    So glad I stumbled upon your blog today! Charlie really reminds me of my little monkey! (I get really excited anytime I find any child that I can even remotely compare to Briley!) I totally empathize with how you feel too! After some genetic testing Briley's first neurologist said, "Good news! He doesn't have Down Syndrome!" To this I could only reply, "How is that good news? At least then I would have some idea what is in store for his future! I would know walking and talking were possible! I would have a large, established support group of families to relate to!" I remember when I was pregnant and thought my baby was perfectly healthy that I found out a girl I went to school with had a child with Down Syndrome and I just couldn't imagine how she dealt with such a horrific thing. Little did I know… Now I actually feel jealous of her at times as though her special needs child is of the elite. I don't think any of our thoughts are ridiculous as they may sound to outsiders! 😉

  9. Parker's PH is also life limiting. Our biggest fear is the day that we will lose him to this damn disease.

    There are times when I can't let go of my self pity and wonder why I'm working so damn hard with the educational and speech, etc.

    Then I realize that I'm short changing Parker if I don't treat him like I'd treat him even if he didn't have this PH.

  10. I know our boys are different, but I find myself reading your posts and completely identifying with what you talk about. I do this all the time, with Kyle not walking, not talking much, etc. I don't focus on all I have. I worry and fret over hypothetical issues.

    Then, just reading one sentence of yours gives me perspective.

    Thank you.

  11. I used to be really focused on Luke talking. I really wanted to find out if he ever talked before I adopted him. Paperwork indicated normal development, but… Over time the goal has changed to being able to communicate in a meaningful manner (i.e. people other than me can understand).

    At age 7 he is making more "baby" sounds, which is positive. He will use some sign, at school he will use his PECS book (I need to start making him at home), and we are going to add another communication device because who the heck wants to have to search through pages of PECS icons to say what you want/need (he has over 80 icons)

    At this point, unless someone tells me different, I think I'm doing about all that can be done. He gets 20 minutes per day of speech/language at school (mainly language), they work on communication when doing his accademics in SPED, and once a week he gets 1 hr of horsemanship where the main goal is speech.

  12. I tell Mike I seem to always wait for the other shoe to drop. I think it's because I feel that in someway this is my fate, and why would it get any better? Hang in there. I guuess it's a learning process of just being able to enjoy the moment.

  13. You know, I feel like I have to say that I didn't mean to imply that having a child less disability means that you should be upset. Of course not!

    Rather, I just meant to point out how hard it is to see past our individual set of circumstances and see things from someone else's point of view.

  14. Katy,
    I didn't take it that way at all. I just wanted to point out that it sucks for each and every one of us in one way or another. I got a huge dose of perspective at work today when we admitted an 18 year old with muscular dystrophy. He has 2 brothers and they all have it too. They are all tube fed, vent dependent, paralyzed… Their father left their mother and she alone (plus some nursing staff) care for all 3 kids at home. To make matters worse the mother just broke her foot and can't get around at the moment. If that didn't make me want to go home and thank God for all I have,nothing will.

  15. Beautiful and SO true. Perspective is something I think about often. It really does affect everything — either for the good or the bad.

  16. Wow, thanks for the compliment, Katy! Really I don't think I have that much of a graceful or sunny attitude. Mostly I have a very morbid sense of humor and a large sarcastic streak, which helps me cope well by allowing me to make terrible jokes out of the less-than-stellar situations we find ourselves in, thus keeping me sane.

    But I worry about Connor too. I don't worry so much about how he'll interact with the world, because we'll get that figured out one way or another. I worry more about how the world will interact with him, especially when he's older and he's not a cute little toddler any more.

    And I have weeks, usually weeks in which Connor has tried to shuffle off this mortal coil, in which I get really fed up with friends who call with problems like "my kids all have colds and I'm so tired" or "the hairdresser messed my hair up and now I look terrible" when I've been spending time bringing my child back from the brink of death. But they're entitled to their feelings just as much as I am entitled to mine– it's just hard to remember that sometimes.

    There are also times I kind of feel sorry for those moms with their healthy children, because I secretly believe I got the best kid. Do we all think that– that we got the best one and everyone else has to settle for whatever kids they ended up with? Maybe that's just me.

    Great post, Katy.


  17. Wow, what a great post and comments! I have often wondered if I was the only parents thinking…

    Am I being ungrateful because Katie can walk and is starting (kind of) to talk BUT I still want so much more for her.

    When is the other shoe going to drop. My "it won't happen to us" bubble burst the day Katie got sick and somewhere in the back of my mind I'm just waiting for it to happen again to someone I love.

    Katie doesn't "fit" into any specific group. There are no groups for kids with brain injuries due to an illness. No special walks, no special play groups. She is too high functioning (this is a big blessing) for our local "special" preschools but not high functioning enough for a "regular" class. I'm finding it really difficult to integrate Katie into any kind of play group…there is a big divide either way.

    You ladies already mentioned all of these and can I say…THANK YOU!! It's is so nice to be able to identify with others moms. I love my girlfriends, but try as they might, they just can't understand or relate to our reality. It's pretty isolating sometimes.

    Your comments also help with perspective. I know it could be much worse. We're very, very lucky to have avoided seizures so far and I'm very thankful for that.

  18. With this blog in mind I wonder how my children are viewed through another perspective. I don't have a special needs child. I would be scared I wouldn't have the energy to support him as well as you do for Charlie. At the end of my "bad" days, when the kids have been into everything, and I'm at my wit's end…it's tough to be grateful. Sometimes it helps to have another point of view.

  19. Great post!