Filed Under (CMV & Special Needs) by Kel on 22-06-2012

Back in high school, I had an English teacher who once spoke about the dangers of equality. Dangers is perhaps too strong a word – but the point was that pure equality, much like pure socialism, is only wonderful in theory. In reality, if we treated everyone completely equal, it would ignore everyone’s individual abilities, preferences, and needs.

It struck me, then, and it strikes me even more now that I have a child with special needs.

A few blogs I’ve read demand their children with needs to treated “just like any other child.” Now, there is something to that – I never want people to treat Danny as less of a kid because of his stuff. But at the same time, we have had to change a lot of the things we do, places we go, and ways we do things for him. At first, that bothered me, until I remembered that statement about equality from so long ago.

See, as summer goes by, I try to make a fun experience for both my older kids. It works, but it is tempered, altered. Friends and playgroups talk about going to movies, having picnics, and spending all day at places like the zoo. These are all things Danny can do, sure, and if I were going for equality and treating him no different, we’d do them.

We would also pay a steep price for it. Going to the movies with Danny involves sitting way in the back, giving him an iPod when he loses interest in the show and the snacks, and probably chasing him down a few times as he tries to run up and down the stairs. There is no way he would ever sit still enough to have a picnic, and anything more than a couple hours at the zoo ends up in a battle because he loses his ability to follow, stay close, and listen – it just becomes too exciting, too stimulating. We tried a library program, and even though it was a “special needs” program for kids that have trouble sitting down, he was too active, too busy exploring the room and getting hands on with the book and librarian to fit in with the rest.

Now, I don’t say this as a negative. Once, I would be upset, be sad I couldn’t do all these fun “normal” things. But that’s just how Danny is, and I don’t need him to be like everyone else. We find other things. We take shorter trips places. We judge our timing and our destinations. We bring movies home and pop popcorn. We search out playgrounds with fences so we don’t need to worry about him running away. And yes, sometimes we just don’t go. Some may worry that it’s not fair to exclude him, but is equality worth it if all we do is battle and upset Danny (and ourselves) getting him to conform? I think not. Sometimes that means splitting up, one of us taking Eric to places Danny wouldn’t be interested in while the other stays home with the littles…but that’s ok.

Everyone accepts that every child needs to be parented differently…until they have special needs. Then, parenting to your kid’s needs is suddenly seen as unfair, as excluding them. We do our own thing, and yes, occasionally it chafes me to have to skip something or leave early for Danny – but it’s what he needs. And I will gladly embrace inequality at times if it means he is happy.

     

 
Filed Under (CMV & Special Needs) by Kel on 04-06-2012

One of the things I have long lamented about Danny is how he just didn’t connect. Opening any kind of two way conversation – words, gestures, smiles, anything – was so hard. He just wanted to remain in his own world, and even when be wanted to come out, he didn’t know how.

Slowly, over the past months, that has been changing, and I feel like I’m finally getting to know my son past the tiny glimpses.

He sings, mimics gestures, acts coy, laughs, talks, writes… It’s amazing the child he has become. He babbles a lot, and sometimes I wish I listened more closely, because I know a lot of what he says has meaning even if I can’t decipher it. He called John “gaga” the other day, and for a kid who can’t form a /d/ sound, that’s just awesome.

He has learned the power of the phrase “I want,” and “my turn,” and pairs both with words all the time. He comes to me for needs, for wants, and most importantly for love. “Hug!” he says, throwing himself at me. He knows I’m here and cares – and not just because I provide food and milk.

At night, we sit at the chalk board in his room, sometimes with CIs on and sometimes not, and he amazes me. Having to be creative about communication – especially when he can’t hear, since his signing vocabulary is growing so slowly – I’ve started to write to him. He loves the written word, and it makes so much sense to him that I use it to reinforce along with encouraging him to express himself with it.

He loves to play a “game” where I give him words and he writes them, telling me a firm “no” when he doesn’t know how to write it.

At bed time, I scrub it off and put his schedule on the board: 1 story, 2 hug, 3 bed. At first it was just hug and bed, and with a little grin he added his own “hug” after bed on the list. Last night, after reading his current favorite – Mr Brown Can Moo, Can You? – he hopped up and grabbed the chalk. 4, he wrote, then studied the first line and, letter by letter, copied “story.” He didn’t know how to spell it on his own, but he knew what he wanted!

A year or two back, I had this image in my head of one day IMing and texting back and forth with Danny… I think that could easily come true, the way he is already learning to read and write. Now that we are connecting, he has found motivation to communicate, and he just might have finally found the method that will work for him.

     

 
Filed Under (CMV & Special Needs) by Kel on 13-01-2012

This little boy, I think, is always going to keep us guessing.


The first question may be – what on earth?

John and I have spent a few years, now, trying to figure out just how to parent this child…and many days, I feel like I’m still at a loss. It’s hard to know when to challenge what we know are his abilities and when to cater to what we know are his inabilities. It would be easier, by far, just to write off some things and let the status quo stand, but that’s not what we want for him. Stagnating and not pushing themselves isn’t what we want for any of our children. That being said, we know that Danny, in some areas, is more of a 2 year old than a 3 year old…but the trick is, many of those areas are disappearing. Rapidly. And then you have the areas where he’s more of a 4 year old, or older. (The other day, he read the first 2 sentences of the snowman poem that was sent home for Eric to read as homework. Um, what? “This is snowman happy,” the paper said, so Danny cheerily looked at it and announced, “Ih ish oh-am AH-ee!” And I assure you, it translated much better aloud than in writing.)

I try to meet him at his level, but sometimes that’s so hard to find!

Our latest project, or challenge, is getting Danny away from being locked in his room at night. Now, that sounds pretty terrible, and it’s not something I talk about much – especially online – because I can see the accusations flying. We have had a hook and eye on Danny’s door for quite some time now. Our nightly routine finished with me taking him into his room and giving him a big hug. He would take his CIs off, put them in his box for them, and go lay down happily. I’d wave, close the door, and lock it. Some nights, he might get up and try the door, other nights he would just drift to sleep. If he tried the door and it didn’t open, he’d go lay down and that would be that. It gave him a definable rule that it is Time To Lay Down, and without it, he would decide it is Time To Play and wander the house until midnight.

Now, in about 2 months, we will have a baby. The room Danny was in is also the room the baby will sleep in, and our routine just…wouldn’t work. So we prepared ourselves for a lot of long, long nights.

…and Danny decided he would just lay down on the couch or the futon and go to sleep, and stay there all night long. Well, OK then. Apparently, from the last time we tried (about 6 months ago?), he became ready. Yes, ideally he would be sleeping in a bedroom on a bed, but honestly – who cares? He is in a safe, comfortable spot, sleeping all night long. Eric went through a fairly long phase of sleeping on the couch rather than his bed, and he is just fine.

This is just like most things for Danny. It may be at a different time than other kids, but he figures things out and decides what works best for him. Sometimes, we need to help direct that, because his choices aren’t very appropriate or safe… But often, it works. He’s growing more and more independent about the daily things of life – getting undressed, getting dressed, putting his clothes away in his hamper once he’s worn them, putting his shoes on. He’s full capable, and sometimes I find myself having to step back and remind myself of that. Because he passed the “typical” time to dress himself, I just got in the habit of always doing it for him. Why? Because it was easy. But parenting and easy don’t go hand in hand, so little by little I keep forcing him to work on it himself. If he’s struggling and getting too frustrated, I help, and I try again a little later. He gets there in time.

The biggest difficulty is remembering that just because he doesn’t talk doesn’t mean he doesn’t understand. That’s an easy one to fall into as well. Whether it’s autism, speech apraxia, or who knows what else he’ll eventually be diagnosed with, as much as he wants to talk and tries to talk, it just doesn’t work so well. He is really trying, though, very hard! We are developing our own language in this house, because he says a lot lately, it’s just nothing anyone outside Danny’s circle would understand. “Oh Ah-were. Ehhhhhhh OUK!” (“No water. I want milk!”) “Ah uh ow-aye. Ih-aye! Ehhhh ah-oo-air!” (All done outside. Inside! I want computer!”)

Unfortunately, I can see this being his biggest life-long challenge. And after reading this article, it reminds me all the more of how and who he is, who he could become, and that I will always have to work to remember that even when the rest of the world doesn’t.

There is a lot of personality in there, and one fabulous little dude who wants very much to get it out. He has so much to offer. I hope that, the more awareness is raised of people like him who are “trapped in their shells” so to speak, he will be accepted and embraced. He is so happy, and I want him to stay that way.

     

 
Filed Under (CMV & Special Needs) by Kel on 02-07-2011

There is a part of me that just wanted to pretend this didn’t happen at all, but there is a larger part of me that wants to put it out there just so others know, maybe, that they aren’t alone.

I’m not a very angry person in general. I get upset, but I rarely get angry about it – sad, frustrated, annoyed, certainly, but it takes a lot to make me mad. I also, most days, have become totally accepting of Danny’s CMV and special needs. Yes, they suck, but it is what it is and he is who he is. Who he is is pretty amazing, he’s making good progress, he’s doing a lot better than I’d dared hoped when he was diagnosed with CMV 3 years ago, and there’s nothing I can do to change it anyway.

So it hit me out of nowhere the other day at the grocery store.

I was in the parking lot looking for an open spot when someone cut in front of me. Oh well, no big deal. She was driving a mini-van, she had a huge cigarette in her mouth, and she was pulling into the expectant/new mother parking spot. I rolled my eyes and drove past, finding a spot a little up the aisle. Go figure, someone else who decides just to park in the closest spot available – but at least she didn’t use the handicapped spots. I got out of the car and started into the store. The woman was a little ways ahead of me, cigarette still in her mouth…and obviously quite pregnant.

My gut reaction was to hate her.

I can’t say I hate HER, more what she represents, but it was there and immediate either way. As accepting as I am of our circumstances these days, it still really bothers me that other women can do things that blatantly fly in the face of their pregnancy and still have babies that are perfectly fine, you know? Every day, pregnant women smoke, drink, eat, and behave in ways that risk their baby, and it all works out for them. I’m glad for the babies, but it just doesn’t seem fair.

It wasn’t until late that evening that I was able to let it go. All the best to that lady; I truly feel bad for my anger. That doesn’t mean it wasn’t there, though, and probably won’t be there the next time.

     

 
Filed Under (CMV & Special Needs) by Kel on 27-05-2011

I’ve been making some references to PECS (Picture Exchange Communication System) lately, and I figured I’d give a good look at that! This website gives a fairly good look at the system, as well as a success story of the child using it. 1000 words? WOW. I can only hope!

What a PECS is is a collection of pictures, readily available to the child that they can use to exchange for what they want. It’s used as an alternative communication method for non-verbal kids who don’t show a lot of aptitude for sign (like, say, Danny refusing to sign at all). The child can choose a picture out of the book and hand it to someone (a parent, a caregiver, a teacher), and after modeling the correct words for the item and giving a moment of wait time for the child to (hopefully) mimic, they get the goods. If Danny comes to me wielding his ‘milk’ card, he places it in my hand, I show it to him and say “milk!” and wait. Sometimes he echos “ilk!” and sometimes he doesn’t. Either way, I nod. “All right, milk!” And I get him some milk.

About…oh, not quite a week ago, we received our little binder from school. It’s a duplicate of what he uses in class, with a few different cards in it to mirror things he likes at home versus things he uses at school. It skips stuff like “fish toy” (since we don’t have one of those) but includes local favorites such as “iPod,” “Pop Tart,” and “Hex Bugs.” The beginning stages of using a PECS is to offer only one or two choices, so the child isn’t overwhelmed. Slowly, you build the field, and then you inch the pictures toward the edge of the book, so eventually you can transition to having the pictures inside the binder.

When I brought it home, I picked out about 7 or 8 favorites of Danny’s, stuck them on the front, then hung it up on the pantry door. My plan was to sit down with it later (probably with John) and decide which 3 we wanted to start with. About a half hour later, the plan changed, because Danny had gone to the field of 7 and brought me the milk card, handing it to me and announcing boldly, “Ilk!”

Since then, I’ve left anywhere from 7 to 10 on the front cover for him. He obviously is able to find what he wants, identify it, and use it! I’ve had to “introduce” a couple cards to him, but most of them he seems to figure out on his own. If he knows there is a card he wants and he doesn’t find it (like the next morning, when I’d slipped the iPod card inside as I don’t let the boys play on it before school), he’ll open up the book and go through the pages to find it. This kid has this system down! I’m going crazy trying to brainstorm additional cards he might want, and have collected some supplies so that I don’t always have to go to the school to get what I want made. I also am working on putting together a small keyring of basic ones he might want when we’re out and about – milk/drink, food/eat, iPod, toy cars, diaper, and I don’t know what else yet. I’m trying to introduce a diaper card, so hopefully he’ll be able to tell me when he needs a diaper change.

This is just so…awesome. A part of me still resents it for what it is – I want my kid to talk, dangit! – but the fact that he’s able to communicate what he wants and needs so easily is amazing. Before, he was limited to things he could get his hands on and bring us, or things he could take us to and eventually get us to guess what he wants. No more! Through the day, he’ll bring me milk and pop tart (which I am using generically as food, since otherwise he’d live on a non-stop diet of Pop Tarts despite having 5 other options for food to choose from), he’ll bring me different toys he wants me to get out for him, he’ll bring me the trampoline one if he wants to bounce on the couch cushions with me or the spin one if he wants to spin around with me. He’s calming down with it, but at first, every time he gave me a card and had a successful exchange, he would giggle and bounce in place – he was just so happy he was able to get his point across!

Honestly? I’m quite nearly as happy that I can finally understand.

Still in process are a picture schedule (I’m debating if I want to do this one or not, since he doesn’t really have any problem following our lead with the schedule, and he understands when I tell him verbally what we’re doing next) and the keyring, as well as a now/not now and a first/then card that the school is making for me. Now/Not Now will let me put cards in the “not now” section that he isn’t allowed/able to exchange for (like food we don’t have or toys he’s not allowed at a given time), and First/Then will let me help him understand when he needs to wait for something (think First Diaper, Then Cars).

I’m definitely taking advantage of his school helping with making the system, but I’ve already found it’s easy to make your own. I picked up some self-sealing lamination pouches and 3′ of thin self-sticking Velcro strips at Walmart, and that’s really all your need! I can print out new pictures as needed from clip-art or photos…I know there are websites that you can get templates from, I just haven’t found them yet…and then cut them out, laminate them, and either stick a small square of Velcro on the back for home or punch a hole in the corner to place on a keyring.

Yay for communication!

     

 

Since the day Danny got his hands on my iPod (aka, the day I finally gave in), Danny has adored the thing. Now, this is not overly strange in any way… Both of my kids are very technologically inclined, and honestly, they both love to play on it. The thing that makes it worth noting with Danny, though, is that it’s almost like a security blanket to him.

At first, it was like my dirty little secret. I mean, when it comes to parenting most kids, as far as I’m concerning things like the computer, ipod, etc, should be limited. It certainly should be embraced – it’s a part of the technology that defines our society these days – but it shouldn’t be an hours and hours on end kind of thing. Eric self-limits himself even further than we limit him a lot of the time; he is allowed a certain amount of time each evening on the computer, and often he shuts it off halfway through. Danny… Well, Danny would go all day long, probably, if we let him.

The thing about it is, though, is that he’s actually getting something out of it. He carries the iPod around sometimes with the clock running, and instead of doing other sensory seeking stuff like tearing his ears off and rolling around on the floor, he just looks at it now and then. The numbers scrolling by give him whatever it is he needs, and he goes back to playing or whatever else it was he was doing. He won’t be actively engaged with the iPod, but if you try to take it away from him, he’ll be quite upset…because it’s grounding him, I think.

And he’s learning. Any kind of learning experience in person has him disengaging after 5 or 10 minutes at home, completely ignoring me if he can’t actually walk away. But not the iPod, on no! He will sit on it playing learning games, engaging, laughing, and having fun. It gives him enough back that it’s worth it to him to work – and finding motivation for this kid is one of the hardest things to do. He’s learned matching on there (something he refuses to do for me most of the time), puzzles, counting and numbers, shapes… There are some things (like shapes, and numbers 11-20) that I swear he’s had no exposure to outside of the iPod, because he’s just not interested with me, but one day I will catch him counting (sixteen/ish-ee, seventeen/eh-eh-ee, eighteen/ay-K-ee) and pointing to objects as he does it, or the opthamologist will ask him to point to a square and he’ll do it without hesitation. All thanks to this tiny little device that connects to him in a way that… Well, it’s not that he can’t do it with me – he can and does – but he can’t sustain it for very long unless we’re being physical.

So yes, my 3 year old often gets his hands on my $200 piece of electronics, and he spends a lot of time with it. I’ve learned to let go of the way it’s “supposed to be” and go with what works. My 3 year old being able to identify a lower case “h” and the number 13 on sight works for me. And as we’re starting to look into introducing a PECS, I start looking at all the articles and such out there lately talking about iPods and iPads and non-verbal kids and go, maybe that will one day be a bridge for us, and instead of connecting to the iPod, he’ll connect to us through the iPod.

I’ve found a lot of ideas for apps at Special Education Apps and Moms With Apps. A few of Danny’s current favorites…

FirstWords – I tried a trial of this, and Danny was so INTO it that I actually bought the deluxe version. I never spend that much on apps, but for a child that loves letters, is non-verbal but learning that written words have meaning, I don’t regret it.

Whizzit 1 2 3 – I’m convinced this is where Danny learned to count to 20, learned to associate counting with individual objects instead of just reciting numbers, and learned to recognize the numerals 0 – 9, which he can identify individually and place in order.

Monkey Preschool Lunchbox – I actually originally got this for Eric quite a while back, and it was Danny’s introduction to the iPod. He loved to watch the monkey jump and flip, and that monkey inspired him to learn how to use the iPod…including isolating a single finger to point and tap. Also features matching, memory, puzzles, and letters/colors.

First Words & Baby Flash Cards – These are a pretty basic vocabulary builders. Colors, shapes, numbers, letters, animals, vehicles… Danny likes First Words more than Baby Flash Cards, I think because he can choose from a field what he’s interested in.

Tiny Wings – Because you have to have fun! Honestly, this is one I got for myself, and thoroughly love…but Danny likes to watch, and sometimes to pull it up and try for himself.

As a special mention, I’ll throw in a link to Proloquo2Go, which is not something we have, nor is it something I’m planning on buying at the moment. However, from what I’ve read and seen, it looks like a phenomenal augmentive communication program/app. Like a PECS in your pocket.