Wednesday, July 21, 2010

carpe diem, baby...





And in the vein of being present and enjoying the moment....


Yes, we do occasionally try to do a little carpe diem-ing around here and live life up! It is summer, after all, and they say it only comes once a year. We are trying to grab what we can of it and squeeze out the most enjoyment possible. Here's proof!


Saturday, July 10, 2010

no awareness...no life!

Had a near accident yesterday with my kids along...we were behind about 4 cars in a 'conga line' (formerly known as 'wolf pack' from my high school drivers' ed. teacher!) and there was a van behind us that was nervously darting in and out. I had been watching the van, because I knew they were impatient, and I kept thinking; "no way will she pull out and pass me...where will she go?" Sure enough, no sooner had I repeated that to myself for about the fourth time when she pulls out to pass me...then proceeds to pull in front of me, (with me being about 1/2 car length from the car in front of me) causing me to slam on the brakes to keep from running into the ditch. If we hadn't been watching her, we probably would have hit the ditch or maybe rolled...I am still sick about it.

Of course, my anger at this idiot kicked in and I proceeded to follow her to our town. I pulled up into the hotel parking lot that she went to and then another van pulled up behind me. A woman got out and came to my window and said, "She almost ran you off the road!" I said, I know!! Then, the woman who almost destroyed us came walking out of the hotel and the lady next to me said, "Did you know you almost ran these people off the road?" Then, I said, "Nice driving...I will be reporting your drivers' license to the police." She proceeded to LAUGH and got in her car!

The icing on this vehicular cake? Her license plates' case read as follows: "No Jesus, No Peace; Know Jesus, Know Peace." Yeah.

What ever happened to people actually living a good life, as opposed to telling us how great a life they are living? I think if you are going to proclaim how great a Christian/Buddhist/Catholic/Mother/etc. that you are, maybe you should also be doing the work. What about driving carefully instead of driving like the devil? (Or, driving like you want to see the Big Guy sooner, rather than later?)

I had to laugh, later, at the beautiful irony of this woman. Driving around proclaiming to know it *all* when it comes to Jesus and Peace, and then driving in such a reckless way that she almost obliterated me and my children.

By the way, Jesus called. He said you are a horrible driver.

Thursday, July 8, 2010

joy hunting



Well, it has been awhile, eh? We have been trudging along...fighting UTIs and severe constipation issues, speech devices that don't work, behaviors, weather issues, etc. It has been an uphill battle around here as of late. I am hopeful things will start to perk up soon.

Mason's speech device has been circling the drain for some time now; we are waiting for it to totally die, so I can send the parts to our insurance company, who denied replacing it before the five year window is up. I agree that we shouldn't need one before five years, but we do, so that's what should happen. Our therapist told us they usually deny on the first try, so now we can either appeal it or just have Mas live without a voice. Guess we'll be appealing....amazing how us "special" parents get put in situations where there's a rock in front of us and a hard place behind us....over and over again!

Mas has decided to scream bloody murder whenever we run the faucet sprayer, which is just about as annoying and time-consuming as it may sound. Makes washing dishes or cleaning up in the kitchen about as much fun as a root canal. Not sure how/where/when this started, but it is getting old and taking a toll on all of us. He has also been doing his morning screaming session that he used to do when he was younger; he walks around the house and screams from about 8 am until 11 am. We suspect it is related to constipation issues, but have never been sure.

As a family that supports Mas, we love him sooooo much. We are also growing weary and there are starting to be more and more questions about how much we should all bend for him. Some days it feels like we will all snap. I know he is a gift from the Heavens and we could have it much worse, but I also know the work required to keep him healthy and happy is really riding the line as far as what we are able to do at home. I keep trying to remind myself he's better off at home, but it begs the question, are we better off as a family? I hope the answer stays yes for a long time, but I can vouch for the fact that we are all tired and weary and running out of ideas to keep him happy and healthy. I really don't know how families with more severe kiddos do it. How do they do it?

We are trying to find joy every day and trying to remind ourselves that he would rather be able to speak and control himself better, too, and that he would probably rather urinate in the toilet than in a diaper...I guess I'm just starting to see the impact he's had on the rest of the family now that I see it reflected in other people's eyes. I guess there is a well of strength families have to draw from, and we are just needing to dig a little deeper.


Friday, May 14, 2010

trudging a bit...

Well, things have been kind of 'sloggy' around here as of late; lots of pressures and things to do and illness but never a break, it seems. We managed to make it through the winter with nary an illness, but this spring we have been dogged by illness; one after the other. Currently we have Mas recovering from his 'fluid-in-the-lung-and-in-the-ear' infection, and then I managed to catch it, and I can report to you, (since Mas could not) that it feels like someone poured super glue into my lungs. Really heavy super glue....maybe concrete is a better descriptor. At any rate, I have been coughing until I see stars and my hands and feet get tingly....this is after tylenol with codeine. It scares me because I don't know how Mas is ever going to clear this. He is still on an antibiotic for his; about 1 1/2 weeks into it and still he coughs. His cough is probably not weak in the medical description of 'weak cough', but, it is a weak little cough nonetheless, and not much moves when he does it. It's one thing to be sick yourself, but quite another to watch your kids be sick. We are always on *high alert* when he has any infection in his lungs, since things can go south so quickly when that happens. That being said, we are watching him closely and doing all the preventative things we can.

On the school front, somehow, (still not sure how) we managed to snare a Complete Team for Mas; by complete, I mean we have a team of people working with him right now who all Do Their Jobs. I know. It's a very cool thing to have happen. His main teacher is currently out due to her baby being born early, but even with losing her momentarily, (she's a gem) things are going very smoothly at school. We have a new behavior therapist who thought it might be a cool idea to actually **observe** Mason, and then she wrote up a new treatment and care plan, and then she trained the staff on how to follow it, and now she is going to make sure they are implementing it correctly. I cried when I read her email; how amazing that she is going to all of this work for Mas. (And yet, shouldn't it always be this way??) The thing is, in society today, we are all lucky to run across people from time to time who know how to do their own jobs. It doesn't happen very often. If he is able to progress and move forward, the time is now and the people are in place. The rest is up to Mas and God.

Our big push for Mas right now is controlling his behaviors. Due to being stuck in an environment for almost 5 years now where hitting, scratching, hair pulling, shoving, spitting, etc. happens all day long, Mas has developed quite a unique repertoire of behaviors. Of course, some of them he had when he started there, but I can testify to the fact that he has learned quite a few of them by watching his peers closely while at school. Combine that with a behavior therapist who did not observe Mas, (she was the one who was replaced) and the behaviors have kind of run rampant on us. We are not only presented with a behavior, but also a range of options as far as what do we do about them? Early on our behavior therapist liked to use "extinction", which was basically ignoring the behavior. That is only as successful as the staff carrying it out, though. Even if they look or smirk or just acknowledge the behavior in any way, Mas notices that and keeps it up. Other methods have been redirection, trying to keep him from getting bored, time-outs, losing items, etc. Here's an example: Mason spits on the ottoman. He puts his finger in it and starts to kind of 'zone out' and do finger-painting-like movements with it. Do we wipe it up? Do we ignore it? Do we have Mas wipe it up? Do we wait until he turns around and then wipe it up? Do we say anything about the spitting? And so on, and so on. This is how it goes with every single behavior he has.

Luckily for us, we now have a behavior therapist who is One Smart Cookie. She is two steps ahead of Mas and is not fooled by his impish grins and belly-busting laughs. She is highly observant and has been trained to 'know what to do' in those situations. We feel incredibly relieved, but also a bit frustrated that we couldn't have had her five years ago. I guess a person has to experience the lows to appreciate the highs. At any rate, we are pinning a lot of hopes on the fact that she will be able to help us out a lot. If you are the praying sort, say a little prayer that she is able to help guide us to get his behaviors under control.

These behaviors don't just make his school days long and difficult, but they are starting to interfere with our life at home. I have been struggling for some time over what exactly to do about them. The short answer is to make him a resident at his school and let someone else deal with it. It gets more and more probable-looking each year that passes by. The problem we have with that is, how do we explain any of that to him? How do we let him know he has to sleep there and stay there? How do we tell him his home is now just a place he can visit on occasion? It is an awful, awful spot to be put in as parents. We know we just wouldn't be able to live with ourselves or with that decision if we were forced to make it. The other option is to make things work while keeping him at home. I feel we have sacrificed a great deal to keep him home these 12 1/2 years; I have basically become a hermit and truly have very few friends that I am able to keep in touch with. (The good part of that is you sort through the fluff pretty quickly and really find the friends that are true.) We have adjusted our entire family schedule around Mas and his sleeping/bathing/eating habits. His sister has had to deal with us having to consider Mason's mood, health status, behaviors, and schedule before we can decide to do anything as a family. We have dealt with drool on the windows, windowsills, carpet, tables, dogs, etc. We have dealt with changing diapers for almost 16 years now. We have tried to incorporate him and his demands into our lifestyle, but it is no easy feat. I just told someone the other day, "I love Mas, but I hate the work he takes." That is the truest description I can give.

I guess we all have our jobs, and some days it feels like you are just cruisin' through the day and everything is going A-Ok....other days, it feels like you are carrying the weight of the world on your shoulders and if something doesn't give, you will break. I feel like we have all been bending an awful lot lately; it would be nice if our burdens would ease up just slightly so we could at least stand up straight...if only for a moment.

When I was volunteering up at the local school about three years ago, an elementary music teacher was visiting with me about Mason and my life since he was born. She asked some questions about him and then said, "I can't IMAGINE not having to work." I cleared my throat and said, "I work." She said, "Well, when he's home, but during the day, I mean." I just about lost it. It's amazing to me that people just do not get it. When he is home, it's like having a 12 year old infant who is mobile. When he's gone, that's when I do all things that other people do during the evening hours; dishes, laundry, cleaning, gardening, dog baths, dog walks, meal planning, etc. I have since been tempted, on many occasions, to invite this woman over for a day to see how our days play out. I wonder if she would still say that I don't work.

A typical day the past few years has consisted of the following: waking up to urine-soaked sheets, changing the sheets and the waterproof mattress pad, washing all of these items in bleach, changing Mas into his clothes for the day, cleaning the smell of urine off of his body, feeding him breakfast, giving him meds, brushing his hair and teeth, taking him to the bathroom and hoping he will pee before the van arrives, (most times he urinates after we've sat on the toilet, which means taking him back to the bathroom to re-dress from the waist down...if we're lucky...sometimes it also involves his shirt) having him lick the screen or the window of the door and throw toys around while we wait for the van, having the van pick him up, continuing to wash his sheets/clothes/pillows, etc., doing the laundry, doing the dishes, cleaning the house, gardening, taking the dogs for a walk, running errands, buying his many supplies (diapers, wipes, certain foods, etc.), gassing up the car, buying groceries, mowing the lawn, weed-eating, dealing with any school items that he is in the middle of (IEP preps, therapy notes, teacher notes, etc.), stocking up items to send in to school for his backup supplies (including diapers, wipes, bibs, shoes, socks, jeans, shirts, etc.), dealing with his speech device issues (charging them, dealing with maintenance, washing the food-encrusted covers, programming them, etc.), bleach cleaning his bathroom, keeping the supplies stocked in his bathroom and bedroom, cutting pills in half for his daily meds, washing assorted urine-soaked clothes when he gets home from school, plugging in his speech device, looking for any notes in his backpack, reading emails from his teacher and therapists during the day, making a meal for him, and then usually at least one other meal for the rest of us for supper, keeping him on a tight schedule for supper and bathtime and bedtime, keeping his shows organized on our dvr, getting him drinks in a straw cup with a lid so he doesn't spill, feeding him his meals, picking up a mountain of toys at the bottom of the stairs a couple of nights a week, spot-painting divots in the sheetrock from him throwing toys, cleaning the windowsills/tables/furniture with drool and dried food on them, never leaving things around that he could throw or ingest or hide, cleaning him up in the bathroom from bowel movements, triple bagging the diapers so the house doesn't reek for hours, bathing him, changing countless soaked bibs, putting him to bed and hoping he will go to sleep right away, listen to him pound on his window for hours if it is raining or snowing, going in to try to settle him down only to close his door and hear him get right back out of bed, tiptoeing around the house so as not to wake him, dealing with his night-waking spells that occur about one week out of every three months (4-5 hours of being totally awake in the middle of the night), saying "I'm sorry" and "excuse me" to strangers whenever we need to take him shopping or out to eat, having him spit food when we are eating, enduring endless stares and rude comments.....this list just goes on and on and on and on and on.....

As I said, it would be nice to invite this woman over for a reality check sometime. I don't think any of us realize what this type of job is truly like until we're in it. If I were a friend of mine, I would tell them the same things my friends tell me; get respite care, make him a resident at school, get away more often, do things for yourself, etc. Our society is just completely unaware of what a caregiver goes through on a daily basis. I think it is only normal to feel overwhelmed at times, and to maybe even engage in a few pity parties now and then. It's never a good place to stay, though. That's when things get too heavy and it's too hard to shake it off. I am hopeful we are just visiting the heavy side right now and that things will start to lighten as the weather improves and everyone's moods improve, as well.



Saturday, May 1, 2010

...

I am hoping to catch a picture of Mas enjoying his bubbles today. We have tried to go outside every day after school and blow bubbles. I thought I'd take the lazy way out and buy a little bubble machine from Wal-Mart, but of course, he likes that to be going and also hands me the bubble wand. :o) I guess there is no rest!

We are so lucky that Mas loves to be outside so much. I think he would spend all day out there if he could. We are looking into getting an electronic fence for the dogs, so it would be easier to be out there for all of us. Right now, we will go outside and Mas will sneak back up to the patio and open the door to let the dogs out....which would be fine, except they scatter all over the place and then we have to round them all up again. (Mas always laughs hysterically at this, though!)

The speech device is still not working correctly. He will be pushing things and looking at us and getting upset and then we realize the sound is not working again. It is very frustrating. I wish companies would stand by their products, like they used to in the past.

Other than that, just waiting for a cloudy, windless day to plant my tomatoes and peppers. The rest of my stuff is in the ground, getting their toes wet and hopefully laying down a nice root system. The growing season this year is already off to a much better start than last season. There is really nothing to complain about in the weather this year!

Thursday, April 22, 2010

enough...

Well, things have been going pretty 'status-quo' around here, so there has not been much to report.  Mason's speech device, his Dynavox Palmtop, is still acting up/not working correctly, so we are in the process of attempting to get a new speech device.  Interestingly, considering the fact that speech devices are such a niche market, Dynavox will not offer to keep repairing it, will not offer us money towards a different device, and will not admit there is anything wrong with their Palmtop.  (Although, from our research it seems the Palmtop has been somewhat of a lemon for them...)  You would think that a company such as this that does business with families like ours would be more willing to work with us. 

In the darkest hours, I would like to call their office whenever it breaks down and ask all of them to place tape over their mouths until the device is fixed and shipped back to us.  That *might* get across to them how serious it is that he have his voice.  In the lightest hours, I imagine myself getting our new device, and then smashing the Palmtop with a hammer, while proceeding to ship every tiny part back to Dynavox!  (Can you tell we're frustrated?)  Just a little company accountability would change things for us immensely, but it appears that isn't going to happen.  At least we know now never to do business with Dynavox again...that will save us a lot of money, time, energy, and frustration.

Mas's room was divided into two rooms...an idea which a couple of us 'room moms' had proposed a longggg time ago.  The good news is, Mas is no longer in a tiny closet of a room with no windows, with 7 kids and 7 adults intruding on each other's personal space.  Now, he is in a room with the other more cognitively-abled kiddos and they have a room with windows, which is awesome.  (Amazing to think he's spent most of his days in a room without windows...what is up with that?  Think about spending your entire day like this...)  

In addition to his 'new room', (that's in quotes because it's still the same class, just divided...he's not in a higher-functioning room....yet....) he is still attending specials with a higher-functioning room across the hall, and we are hoping this will transition into him moving into this room.  It sounds like things have been going alright over there, although he transitions independently to this room, so there are usually not staff available to see how he's doing.  We are hopeful that he will get to move there, since there are kids in there with speech devices and there is the potential for him to learn to communicate with peers, which would be stellar at this point.  (In his current room, if he were to push something on his device to one of his classmates, there would be no response whatsoever.)  

All of this 'new room' activity has made me wonder if we shouldn't have been pushing harder a long time ago.  Here he's been in a room with kids that basically ignore him, or if they do interact, it's limited and not to the level that he needs....he's been in a situation with way too many bodies in way too small of a space....he's had no windows....it just breaks your heart.  I guess the 'eternal question' as a special needs parent is this:  "When have I done enough?"  While I do not know the answer to this, I suspect it might be:  "Never."  

It's tough to feel like you have to "be a bitch" to get things done for your child; especially when people are supposed to go into education for the right reasons--to work with children.  That being said, there are plenty of people who lose sight of that noble thought, and end up trudging through their days without remembering where they were when they started the journey.  I visited with a couple of friends the other day who are both dealing with special-needs kiddos, (and who both happen to be from the same town of 80 people--doesn't that make you want to call the CDC?  I know!) and it was so refreshing to talk to people who "get it" and whom you don't have to pre-explain everything to.  It reminded me what a strange language it can be when you are parenting a child like this.  It's great to say things like "IEP" or "EEG" or "MRI" and not have to stop to explain it to someone.  

It can be a very lonely journey, this special parenting gig, and it's fraught with wondering whether you've crossed that line from 'advocate' to 'pain in the neck.'  I guess all parenting is like that, but I think this type of parenting just reminds you of it more often.  Should we have made a bigger deal of this sooner?  Maybe.  You can follow your gut or do lots of research or just squawk a lot, but in the end, your kid is kind of at the mercy of those in charge.  Here's hoping he will do his part and show them all that he is able to move forward, and that we keep doing the uncomfortable part by nudging him (and everyone else) forward!

Wednesday, April 14, 2010

wading...

Things have been pretty heavy around here lately...just seems I am wading through mud to make things function.  Having Mas home for 10 days while he and I were sick did nothing to help that feeling!  I am weary and getting wearier, and am able to see how people finally throw in the towel and stop trying to be caregivers.  It's exhausting, both mentally and physically.

Mason's Palmtop is acting up again, also, which hasn't helped.  It decided to not have any sound the last few days...while we have found a way to fix it, so far, it seems it is on its' last leg, again.  Not great news considering that Mas is still struggling with our only backup device; the iPod with Proloquo2go.  The scrolling is still throwing him for a loop, so it's not a reliable device for him at the moment.

I have been searching for strength to get through the days ahead.  Trying to quilt, garden, walk, as much as possible...but knowing that I have to wake up early every day from here on out, change diapers, deal with his odd health troubles, feed someone, deal with behaviors,...it's just getting tougher and tougher to imagine myself doing this for another 10 years.  Hopefully things will ease up a bit or I will find some energy I didn't know I had.

Wednesday, April 7, 2010

looking, staring, observing, noticing, mocking...

So, here we were in our local 'super' store the other day, Mas pushing the shopping cart and me behind him, trying to keep his arms on the cart and off of people's coats, hands, etc., when I hear my daughter say, "Just 'cause we don't know what's wrong with him doesn't mean you have to stare at him."  ??  What?  Apparently some kids were staring at him as we were walking, and since she was behind me, (and I was otherwise occupied) I didn't realize what she was seeing.  It took me a moment to even register what she had said, and since the kids were her age, I was even more surprised that she took that stance.  

She said they had been staring at him all the way down the aisle.  How did I not notice this?  I assume it was for a couple of reasons...first of all, I was busy.  Keeping "Mr. Social" from spreading his 'socialness' on everyone is a full time job in the stores anymore.  Secondly, I think I have just gotten to the point where I mostly tune it out....'mostly', I say.  (More on that later.)

It broke my heart that she would have to see that, but also warmed my heart that she was willing to stand up for him.  I often wonder how this experience is shaping her.  While the approach she used wasn't the greatest, I am glad she understands that we need to be his armor for events like that.  I guess I'm so used to being with him that I sometimes forget how he must look to others.  Drooling, flapping his hands and arms, touching people, sucking on his fingers, walking around with a bib and a speech device hanging around his waist, odd gait, etc.  It just gets to be our 'new normal', I guess, and I don't even think of it.

It used to really irritate me when people would stare.  Now, I find myself staring at kids all the time...I look for low-set ears, small head circumference, small lower jaw, hand defects, gaze abnormalities; you name it, I am looking for it.  I especially find that kids seem to really stare at him...I'm sure they wonder about the speech device, first, and then they are busy trying to categorize him, I think.  Adults staring doesn't really phase me anymore, because I assume they either work with him at his school or he reminds them of someone else they know...or, they are also trying to categorize him.

That being said, we had a unique experience the other day while we were driving home from a local town about an hour away.  A carload of teenagers was in the left lane beside us and they started making fun of Mas, and mocking him by clapping like he was and beating on the window.  Once my daughter pointed it out to me, I looked over, and sure enough, there was a carload of kids, mocking my son.  Well, let's just say I sprung into action....following them for the next 3 miles at a fairly close range while glaring at them as they looked nervously out the back window.  It was all I could do not to just explode.  

I was flooded with emotions, the obvious ones, of course, like "How dare they?" and "The nerve....", but also, with thoughts like, "What does Riley think of this life we have?"  It is frustrating to deal with this type of thing, and I suppose it is just going to happen more and more often, as he grows up and acts less and less "his age."  It would be great to have a diagnosis for moments like this, so we could say, "He has ______."  But, we do not.  That leaves us with a short moment of time to say or do something.  I guess this is what we have to deal with, so we 'just deal,' and since it's all Riley has basically ever known as his big sister, it's probably a very normal position for her to be in.  

In sharing these experiences, I must admit that the vast majority of people are kind, thoughtful, sincere, and sweet when approaching us or when passing by.  People really are mostly good, when it comes down to it.  It's how you react to those that aren't so good that defines who you are as a person.  I'm sure we are all growing as a family in that regard.  I hope that Mas is mostly unaware of the staring and the occasional comments...it would break my heart to know otherwise.

In Idol news, this week seemed much better to me; probably because like most of America, I love the Beatles.  We had pegged Tim or Andrew to go home tonight, so we were surprised to see Michael Lynche up there.  They had to save him, though; he is five times the singer that Tim, Andrew, or Aaron is, and they knew it.  

In other news, we have spent the past two weeks battling sicknesses; everything from bronchitis to bladder infections to sinus infections to colds.  ARGH.  We are ready for a break from it all!  The last two in the family started on antibiotics today, so now we are all either on antibiotics or just finished.  I guess it is the season for such things.

In closing tonight, remember that we are all one accident or illness away from those we see around us who are less than perfect.  We could all be there one day, some of us sooner rather than later.  Let's try to remember that we really are all people, first, and everything else must come second.  Look if you must, (I must, at times!) but try to flash a smile or give a nod or a wink...that mom or dad or sister might be in need of a little love as they help out their special needs person.


Tuesday, March 30, 2010

r and b

Okay, not a really big surprise night on Idol...the ones who usually do well, did, and the ones who don't, didn't.  How's that for a recap?  ;o)

Here's my take:

Siobhan...they were too hard on her, but, she was off pitch in her upper register, which is truly the first time I can say she's been off pitch, to me.  She seemed uncomfortable and I think this was her worst week.  She still, however, kicks ass compared to everyone else, so I think she was just due for a crummy week.

Casey...here are my notes:  'nanny goat vibrato, confident tonight, probably his best night so far.'  "That being said,"... (haha) I still don't really buy his performances and am not a huge fan of his singing.  Still love him on the guitar, though.  (Pssst, Casey...go play guitar in a band and sing backup....)

Michael...Nice soft stuff, cool song, great voice, great control.  He is really an awesome singer.  I didn't know that song, either, but now I think I'll have to get to know it.

Didi...Off pitch...a lot, and I didn't believe anything she sang tonight.  She had bad endings in her phrases, turned her little vocal "thing" on and off all throughout the song...I wrote down, "Blech", which pretty much summed this performance up for me.

Katie...Aretha?!?!  Really?!?!  Don't buy it!  The fake swagger didn't work for me, and I actually wrote this question down:  "Was she a pageant girl?"  She walked like she was one.  She is always trying to "cutesy things up" and use her smile/half smile/looks to try to charm her way through...which is too bad, because under all that fluff there is a voice there.  It's just too hard to sift through all the sugar to get to it.  Again, if she had only waited five-8 years to audition, and lived a little in that time.  Aretha?!

Lee...Seemed more confident tonight, and it worked, 'cause I believe him.  This was my fave night for him so far.  He is better than he's been showing us, for sure.  Hopefully he'll hang on to the confidence and keep getting stronger.

Crystal...I was glad when she stood up and stopped playing the piano...she was thinking about it too much and it detracted from her singing.  I liked her up in the high range, and though I totally understood what Simon was saying about her identity as an artist, I also thought this was a nice performance.  

Aaron...Too big of a song for him, the vibrato was bad, the pitch was off, there was no excitement...for me.  The judges seemed keyed up by it, but through the tv I did not get it.

Tim...The low register was off pitch, the voice sucks, this was worse than watching a high schooler...it was boring, he has a smart-aleck attitude and is cocky without the goods to back it up.  Unless he is a 'vote for the worst' contender, I suspect he will be going home.

Andrew...I like his voice less and less, and I didn't believe this performance or get it.  I thought his voice was very thin, and 'off' tonight.  

So, maybe I was just too tired to focus, but this night didn't really wow me, except for a few performances.

In 'my world', I would be sending Tim or Didi home tomorrow night, with Andrew or Katie as backup possibilities.


Wednesday, March 24, 2010

Miley Cyrus????

Okay, I skipped a week...just not a Stones fan to begin with, and after hearing "Angie" butchered even more than the original last week, (which is sayin' sumthin') I decided to wait until this week, and hopefully be inspired.

Well...imagine my surprise when I see Miley Cyrus. On the TV screen. Giving advice to people. About singing. What is going on with Idol this year? I think Simon is jumping ship right before the bow gets sucked under the waves. (I hear the string quartet in the background...."It was a pleasure playing with you all tonight....") Okay, here's my two cents.

Aaron Kelly....didn't want to miss a thing...tried to do a song that only Steven Tyler could pull off. I didn't get it, although I get the country pull he's leaning toward. He reminds me of Randy Travis, but not necessarily in the good ways. I also find him immensely annoying to watch...not sure what it is but I just can't get past it. The "aw shucks" attitude and the "up with people" smiling are getting old. For me, at least.

Andrew Garcia...sang without his guitar...and still stunk up the stage. Sad, because I also liked the Straight Up rendition he did in Hollywood week. He is so deer-in-the-headlights that it's hard to watch him. He's uncomfortable, out of tune, reaching, trying, and not succeeding in any area. I suspect his days are numbered.

Casey James...should go play guitar in a band and sing backup. He would look good in videos, could work with an image consultant on that horrible joker-y smile of his, and just plug in and play to his hearts' content. Gotta hand it to him, though, it is amazing he is singing as well as he is while he is playing...and I mean "Playing," as opposed to most contestants who bring a guitar up there and just play rhythm.

Crystal Bowersox...well of course she should be singing Janis Joplin! Why did it take so long? She seemed, to us at least, to finally be trying up there, instead of phoning it in. We haved loved her from the beginning, but she almost has been acting like she's too cool to be there. I think lastnight she finally tried to rope more people in and didn't seem embarrassed to be on their stage.

Didi Benami...yes, she has improved over the weeks, but she is just not a star presence, to me....lastnight's song was odd and confusing and she was totally doing what they said; acting like she was playing a part in a musical. I love the little "cool quality" in her voice, but it is so sporadic and not reliable that you just can't count on hearing it all the time. I guess I can see where people are attracted to certain aspects of her voice, but I just don't believe it when she sings.

Katie Stevens...I still believe she should have waited a few years. Yes, she tried to act younger, but I didn't buy the Fergie vibe...Kara did, (and I used to agree with her more last year) but I didn't buy it. I agree with Simon, at least as far as Katie is not cut out for pop/rock. I wouldn't pay to buy that or sit and listen to it...I still don't buy that she could sell country, either. She needs to live a little and grow up and pay some dues and try out later, when she knows who she is. That little sideways smile thing is way past annoying now and it just makes me sad to see them sell their gimmicks like that. Just stand up and sing, man!

Lee Dewyze...needs a girl/boyfriend who tells him he is the bomb. Then he needs to believe that. Then he needs to go out and get bombed, and then go on stage and sing like he doesn't care. I believe that is where he would shine. For now, though, he is lacking confidence and is trying to please everyone, which will not work for this venue. He should ignore all of the advice and just pick his own music and sing the way he wants to. He's better than "The Letter" showed lastnight.

Tim Urban...I just do not get it. I guess he could be considered cute, maybe by the 13 and under crowd, but the boy "just can't saaang", folks! Come on! It was sad. Then, to tackle a Freddie Mercury song???? What? That song only worked the first time because Freddie did it. I just think Tim is not meant for this competition. He really sounded like a high schooler at a talent show whose mom begged him to sing that song. Ugh. Hard to sit through.

Paige Miles...LOVE HER, but think her days are numbered. Her voice is obviously raspy and hoarse, and if she has any smart friends or vocal coaches or judges, they would tell her to bow out now before she develops nodes on her vocal chords and ruins her chances of singing for life. It's even uncomfortable to hear her speak, she is so hoarse. She is absolutely stunning, though, and should be able to find a great gig modeling or acting. I think she can sing circles around most of this years' contestants, but we aren't going to get evidence of that as long as she remains hoarse. Too bad.

Michael Lynche...well, he proved again how great he sings...probably one of only two contestants who I can listen to throughout their song and not hear any pitch issues...or, at least, very few. He is smooth and on-pitch and cool...he is also usually safe in his song choice and delivery, which has sometimes worked well in the past for some contestants. We'll see how many risks he takes in the weeks ahead.

Siobhan Magnus...Well, an Idol contestant finally tackled Stevie Wonder...and did not fall flat on their face. She is a pure, raw talent, and talk about spot-on pitch...I think she is overusing the high register, BUT, if you can sing that well up in that range, it's hard for anyone to fault you. I suppose she may annoy some naysayers, but there's no way anyone with any musical background can hear that and try to dismiss her. Hello! It was also awesome because I just love Stevie songs, and that's one of the best for me. I agree that Siobhan is only comfortable on stage, which is how it usually is for big stars.

Prediction: In my world, here is the order, from the best to the worst:

Siobhan Magnus
Crystal Bowersox
Michael Lynche

skip a few hundred feet, and then:

Lee Dewyze
Paige Miles

skip about 50 feet, and then:

the rest of them. Seriously, that's how huge I think the gaps are this year. It's like, high school talent contest-ers all the way up to real singers. Hmmm. A confusing year, to be sure.

In a perfect world, they would be sending Tim or Andrew home tonight. Another possibility would be Didi. There...that's my two cents! Now, bring on the "judges pick the music" night! Can't wait for that! Also, American Idol producers, PLEASE use better judgement in making your "very-talented-successful-musically minded-mentor" phone calls...come on! Miley Cyrus? We are still not past that in our house. Miley Cyrus?!?!?!

Wednesday, March 10, 2010

im proooooove ment

Okay, the men definitely made a major improvement, for me, tonight on Idol. Not that I'm saying they were fantastic across the board, but I think all of them sang their personal best tonight.

Here's my thoughts:

Lee DeWyze...was off pitch tonight...maybe 'cause it's just such an exposed melody? I don't know, but it was off-putting for me. This wasn't my favorite of his, and I didn't think it seemed like he was digging it, either.

Alex Lambert...sang a song I love tonight. I think it got better as it went along, and it did seem more in line with his style, but there's still something about his voice that I just can't embrace yet. Hearing the playback at the end while I was in another room made me hear the pitch issues at first, too, and that soured it for me.

Tim Urban...should leave that song well enough alone. It's kind of like trying to do Sinatra's 'My Way'...you just don't do it. I think Jeff Buckley did the supreme version of that song and it will always stand as the gold standard of a beautiful song, beginning to end. I do think, though, that it was the best he's done so far, and he seemed less like a train wreck to me tonight than he has in the past.

Andrew Garcia...sang a peculiar song, but as far as the arrangement of it went, I kind of liked it. The singing was still strange to me, and I agree he was trying maybe a bit too hard to sell it. He was playing in his ballpark tonight, though, and I could see that songwriting and arranging are definitely in his future, if he would choose that.

Casey James...fought off the stylists a bit tonight, for which I am grateful. I think he was much better than last week, and this was the most I've liked him so far, but he just kinda seems like a wet noodle. I don't get the spark factor, or the looks factor, or anything from him. He seems sweet, and nice, but I don't see him on the big stage singing his heart out to a captive audience. I think he either doesn't feel the songs when he's singing, or is afraid to feel them. Not sure which.

Aaron Kelly...sang another song that should have been left well enough alone. I agreed that he was not old/wise enough for this song, and I didn't buy the 'storytelling/narrative' theme that he was trying to sell the judges. There's something about him....I kept saying while he was singing, "he's reaching, he's reaching...." I don't know how to put it into words, but again, I wish he had waited a few years to try out for this. He is the Katie Stevens of the guys...just young and doe-eyed and swimming in a tank of sharks.

Todrick Hall...best he's done so far. Love his look, and I think his stage presence is definitely in place. Not sure he had all the notes placed correctly, and it didn't help that most people love Freddie's version of that song. I didn't think it was as good as Todrick thought it was. I agree that Broadway is his area.

Michael Lynche...Yeah, baby! He owned it, he shared it, he loved it. I love his voice, and I do agree that he is the man to beat, followed closely by Lee Dewyze.

I think Ellen should host next year...she would be so much more enjoyable than Ryan, and I just don't really get all of her comments as a judge. I like her talk show, and I think she's very talented and funny, but she acts like she's sitting on a tack most of the time. Maybe she's afraid to cross swords with Simon? I don't know the answer, but it seems she would be great up front.


Stevie and Carole and Patsy...Oh, My!

Big night on Idol, with the women trying to emulate/channel/imitate/aspire to a lot of big names in the biz.

Katie Stevens...tacked Kelly Clarkson's Breakaway. Argh. Katie's low register was not good at all, and needs work with a vocal coach if she is going to attempt Kelly. Another thing that screamed out at me tonight was the way Katie completely ignores beginnings, endings, and "in-between" notes...she needs to listen to herself sing. She was off pitch often and I thought she pretty much butchered the song. Kelly Clarkson may be young, but the girl has pipes and her singing is solid. If you're going to try to sing her, you have to be ready for it. Katie was not.

Siobhan Magnus...I loved the a capella start to this and thought she rocked that...no drop in pitch whatsoever when the band joined in, which is rare. She needed to be a bit more careful on the big notes, I thought, but overall she blew me away with this. Yea!

Lacey Brown...I think this was the best she's done so far, and it was kind of intriguing tonight. I do think the notes at the end were too big for her, and that her charm lies in singing the quiet and simple lines.

Katelyn Epperly...Did nothing new with this Carole King song, and Kara was right in saying that Carole is a very present artist when she's performing. I also thought if Katelyn was going to play the keys, then she should actually play something. This was blah and boring to me, and maybe something I wouldn't even eat peanuts to.

Didi Benami...Stevie?!?! I thought this was a snore, but I agree this was a vast improvement for her. Still, Stevie?!

Paige Miles... :o( I was sad for her, since it was obvious she was hoarse, either from sickness or emotion, and she really butchered this song. That song is a classic, and is really probably far too large of a song for anyone on Idol. She had a shaky start and never seemed to really lock anything in. I was bummed for her, but she did not have a good night.

Crystal Bowersox... :o) Hello! Yeah.

Lilly Scott...Unfortunate placement for her at the end of the show with this type of song. yes, it was quirky and odd, but it was also forgettable and weird. I think she should sign up to get on a Grey's Anatomy soundtrack, asap.

I definitely think Crystal won this tonight in a walk, with Siobhan a close second. The rest were pretty dismal in their showing. Hopefully the men will bring it tonight!

so there

Tale from Mason's experience yesterday at school, while attending opening with the higher-functioning class....(told by Mason's speech therapist, who was across the room at the time)

The teach has everyone do a job. When they got to Mason, they asked him what the weather was like today. He navigated to the weather page and pushed, "Rainy." It was rainy.

Thank you, Lord.

The Little Man is making a Big Impression.

Tuesday, March 9, 2010

stops, pauses, and idles....

Well, we had to kind of admit defeat and scale back our large aspirations for the iPod touch w/ the Proloquo2go program at this time. Even though we love the program and the delivery system of it, we had to admit that Mas cannot handle the scrolling consistently enough to make it a choice communication device for him. His speech therapist reported the iPod was only responding 30% of the time for him, due to the scrolling issue. That just won't cut it! Especially after finally giving him a real voice; it seems doubly harsh to then take that device away and replace it with one that only responds for him some of the time. Again, it's no malfunction as far as the device is concerned, just a little above where Mas is right now with the scrolling. The most unfortunate part is, when he pushes a button and it scrolls instead of responding, he just gives up and won't try again. We decided the best move for now would be to use the iPod/Proloquo2go as our "after hours/nights/weekends/holidays device" and try to help him along with the scrolling the best we can. We'll see how it ends up.

A few people have asked why I'm not commenting on Idol this year...well, this year, it just seems rather...idle. I have not been very impressed with Idol for the most part. For what it's worth, though, I'll throw my two cents into the ring and try to summarize this year's field of contestants.

First, the guys....

Aaron Kelly...I wish he had waited a few years to audition. I don't think he has a brilliant voice, and for some reason, the 'smilyness' factor while he sings seems off-putting to me. I don't know how to pin it down, but I just don't buy it.

Alex Lambert...Call me horrible, but I cannot get past the mullet. I know, I know, it's an aesthetics issue, but it DID color the way I thought he was singing. When I closed my eyes, I found him more palatable than when I watched him sing. I don't know; he is an odd duck. He will certainly never become a video star, but if you could listen to him on the radio without watching him, I think it could work alright. Not a stellar performer, but a decent voice.

Andrew Garcia...Loved the Straight Up remake he did in Hollywood week, but I agree that he's never revisited that vibe since that happened. His voice is almost a caricature of itself...I like it sometimes, but sometimes I find it too thought-out and grating. I don't know where to file him yet.

Casey James...Should have fought off the image consultants with his bare fists. He is getting more and more effeminate and less impressive in his singing. I think his singing ability has steadily decreased since the first time they heard him, and there is absolutely zero spark there for me. I guess I don't get him.

Lee DeWyze...Probably one of the two guys to beat this year, as far as I'm concerned. I like his voice, I like his unpretentiousness, I like his vibe. I hope he stays true to his own image and doesn't listen too much to the image consultants or to the judges, for that matter. I do think he needs to have a great week soon to really solidify his spot. I think his vibe is stronger than his voice, though.

Michael Lynche...Probably the other part of the two guys to beat this year. His voice is probably unequalled in the men. Great attitude, likable, nice beginnings and endings, great tone quality, pretty great pitch most of the time, someone I would listen to on the radio, but would also like to watch perform. I think he's one of the few this year who has "it." Not "IT", like last year's Adam Lambert, but "it."

Tim Urban...is skating by on looks alone. Too bad, because he's cute and marketable, but doesn't know who he is yet and his lack of voice doesn't help that. Not sure how he made it this far, actually.

Todrick Hall...has the look, for sure. Is mesmerizing to watch. Not convinced on the voice yet, though.

And now for the girls...

Crystal Bowersox...Love the fact that she does not appear to care too much what people say about her hair/clothes/etc., but have noticed things have been getting tamed on her by the image consultants, and am watching closely to see how far she'll let that go. As far as musicality goes, she's one of the ones I believe when I'm watching. She seems mostly on pitch, I like her delivery, and she does seem to slip into the songs instead of singing them note for note. I would hope she is one of the girls to beat this year.

Didi Benami...is she still here?

Katelyn Epperly...the dot between her eyes is all-consuming for me...cannot concentrate when she sings because I keep looking at that dot. I don't know; it's just tough to get used to. I think she has an instrument, but she is renting rather than owning, you know? I just don't buy it. She doesn't get into her songs and she seems to be trying to sell her look rather than her voice. You can see her thinking while she sings, too, which was a curse of last year's contestants.

Katie Stevens...was one of my early faves, but is now becoming increasingly grating in an up-with-people-sort-of-way. I wish she had tried out about 5 years from now, after having lived on the streets or at least traveled or dated or something. I just think she's too young. Does she have a voice? Yes, but I don't hear a polished voice, and there hasn't been enough living and dues paying there for me to believe that she's singing to me. I am on the fence with her. Less smiling, more musicality would serve her well.

Lacey Brown...I want her to do well. I love her look, her story, all of it. I just don't see her making it much further. I think she could definitely be a great backup singer or something, but she does not strike me as a lead singer...of anything. She has a cool voice, but has not honed that cool quality and because of that, it is as sporadic as lightning.

Lilly Scott...quirky, odd, interesting. A cd I might actually buy. I don't know that she has the greatest strength in her singing voice, but as a package it's buyable. She does, however, know her strengths and therefore gets points from me.

Paige Miles...doesn't know how good she is. I agree with Kara's comments that singing Kelly Clarkson's tune with a smile did not work, but you had to agree that Paige can sing. She can really sing. She needs to work with someone who is clearly focused on just her, and start making better choices. She kind of had a deer-in-the-headlights look last week, and it was noticeable, but she needn't have. She has a great voice and once she channels it and stands by it, she will be a force.

Siobhan Magnus...my fave this year for the girls, and probably out of all of them. We refer to her as the 'autistic-y' one, not in a negative way, (believe me, with a kid with autistic tendencies, we would never do that) but in a 'she reminds me of Mel Tillis in that she only seems comfortable singing' way. I love her complete disregard for image, (YEA!) and her completely SPOT-ON pitch last week. That Aretha song is no small feat; for her to not just sing it, but to nail it, was amazing. I love how she is only really "on" when she has the mic up to her mouth to sing...forget the interviews and the fashion sense, this is a real artist here. I am rooting for her because I know I would buy that cd at the store. One of a very, very few I would shell money out for this year.

As far as Ellen for the judge, I don't really know that she has made much of an impact either way. No, she's not a singer, but neither was Paula Abdul. She is way less faky than Paula, which I appreciate, and my finger is not as tired this year because I'm not constantly forwarding through Paula's "you look great" rants. Ellen does appear a bit apologetic at times, and she shouldn't be, because as far as a stage presence, Ellen has it.

I doubt Idol will even survive without Simon, and I doubt I would watch it even if it did, but here's hoping they at least attempt to find someone of equal musical mettle. You may not agree with his delivery, but it's usually directly accurate and helpful.

I think Idol decided this year to get more "Indie Singers"...in fact, I can almost hear the board meeting in which this was discussed...but I think they kind of overdid that. Even though I tire of the "Star-Search" singers who (wait for it!) go for the big, 'signature' notes and kind of fluff through the rest of their performances, I do think an entire slate of mostly Indie singers is kind of exhausting. I feel like their hearts aren't in it, and I think it would have been nice to send Simon out in a stronger way. Here's hoping things perk up, and soon! (I do find it rather odd that most of the girls this year should really be trying their hand at modeling, rather than singing...have we ever had such model-y looking girls on Idol before?)



Wednesday, February 24, 2010

wows and woes...


We are still forging ahead with the communication dilemma...the great news is, Mas knows exactly how to navigate around on his iPod, and when he pushes something, it's always an appropriate item. The not so great news is, he is getting increasingly frustrated with the scrolling, (instead of less frustrated) and we are wondering when to throw in the towel and go back to the expensive dinosaur device.

We are still going to give it some time, and hopefully we can train him to get the proper 'touch' so that it won't scroll on him when he's trying to tell someone something. Lastnight I managed to completely redo his setup so there are no second pages on the device whatsoever, so that if he scrolls, it will automatically bop back up to that page, and not go down to another page. We are praying that will be a boon to his training. Luckily, the Proloquo2go forum has proven, once again, to be full of very intelligent, helpful people, and there have been suggestions on how to make this work. It's so cool how the internet can be such a helpful tool!

15 is headed on a vacation for a week for her Robotics competition. (Oh, the technology this family embraces!) There are 8 kids from her school and she is the youngest. She is more in the "watching and soaking things up" stage than the building stage at this point, but she is definitely learning a lot and we think she will learn even more at the competition. It's great for her to see there are a lot of options out there for her someday career...

I managed to watch about 15 minutes of the Temple Grandin movie...am savoring it and saving it for when it's quiet around here...which is fairly rare! I love the way they depict the snapshots of the different sensory things she is encountering...and also how the squeak of the marker bothers her, how intriguing the ceiling fan is, etc. I have read two of Temple's books and have a couple more in my "ready to read" pile. She is truly a stellar person and also an example of how the right type of upbringing brought out the best of her abilities. She could have just as easily not accomplished much at all, or spent her days withering away in a home somewhere....very interesting stuff.

Well, as choppy as this post is, that is how choppy our week has been. Just a non-stop fun show of carnival-like activities...seems we are always running in opposite directions. I am trying to stay true to my self-promise to post more often, even when there are no Grand Events taking place to report on. I guess there is always something going on with everyone, if we look hard enough.


Monday, February 22, 2010

he walks the line...

The above photo is of Mason catching the opening song for Curious George...his favorite thing ever! We don't always get the tv turned on right at 7 am, but I have been trying to remember to do that in the midst of making oatmeal, doling out meds, packing his backpack, etc....this smile should remind me to get it done on time!

In the spirit of "independent transitioning", I have a great story for you.

The van driver brought Mas into the building today and the secretary called Mason's room. There was no reply. Mason took off for his room. The driver decided to "tail" him and make sure he got there. He stayed back quite a ways and watched. Mas turned two corners, made his way down a long hall, made the next corner, and when the driver turned the last corner to see if Mas went to the room, there was Mason's backpack sitting outside the room, and Mas was inside...completely by himself!

How cool is that?

In every other respect, today was a Monday...just a non-stop barrage of Mondayish things...walked on ice covered with a light layer of snow this morning, which made it incredibly slippery. I went 4 miles, and I counted 8 steps that were on dry sidewalk. (Long walk.) Even the dog was slipping! We are trying to stop Mason's iPod touch from scrolling, so that when he pushes a button, it will respond and not scroll. When it scrolls, it does not speak what he pushed, so it is extra frustrating for him. Even the school sent a note home today that they are seeing him get frustrated with that part of it.

I talked to his speech therapist, and apparently the iPods at school are all able to have their scrolling disabled...but ours is not. She even went so far as to place our iPod by one of the school iPods, did the exact same sequence of buttons, and the school one stopped scrolling and ours did not! (Sigh!) I called Apple and talked to someone there for awhile...quite friendly and concerned, but unable to help. They say it's a Proloquo2go issue, so they suggested we go to them. I have a post on the forum that will (hopefully) yield at least a few suggestions as far as what to do...

I did actually restore the iPod to factory defaults, (gulp) which essentially wiped out everything on the iPod, and then I reinstalled the Proloquo2go program....still, no change. I tried turning the scrolling on, then powering the iPod down, then powering it up, turning the scrolling off, and powering the iPod down, and turning it on again...still, no change. I installed the latest updates for iTunes and for Proloquo2g0...still, no change. I even prayed! Here's hoping we are able to figure it out. I love technology, but not when I can't figure it out! I hate to wave the white flag with the iPod/Proloquo2go option already, but it may happen if we can't get the scrolling to stop...which is too bad, since Mas has had some great moments with it this past week.

He is going to opening (30 minutes, first thing in the morn) with a higher-functioning class, which we have been trying to get them to do for some time. (After working with a PACER representative, we found out enough to know that they had to try him in there before they could tell us he wasn't able to do it.) Luckily for us, he is rocking in there! He is sitting in his chair...not getting up until he's called on...performing his task in front of the others and then going back to his seat...pushing, "Hi, my name is Mason!" when they introduce themselves each day...giving high fives when other students ask him for them...having the other students chant, "Mason, Mason he's our man; if he can't do it, no one can!" (The tears are flowing even as I type that.) It's pretty heady stuff to think of your 12 year old non-verbal son perhaps making friends for the first time in 12 years...friends his age, that is. It warms the heart. Once we stop the iPod from scrolling and he has 100% success when he pushes a button, I anticipate many more Grand Moments for Mason in the area of communication.

Yesterday, while he was in the higher-functioning classroom, he navigated to the "friends" page and pushed, "fun." Today, while back in his old room, there was someone screaming and he went to his "feelings" page and pushed, "I don't like that"....repeatedly. Pretty damn cool. It's hard to ask for anything more for him at the moment. Here's hoping he keeps up the good work and shows them all that he has a lot of untapped potential, and that he will eventually be able to spend more and more time with the higher-functioning kids. Here's to advocating for your children....HUZZAH! It pays off, even when it seems like it never will.

Tuesday, February 9, 2010

Color My World











It has been a rough winter so far, as we haven't really had a full week of school in quite awhile. Yesterday and today marked two-hour late starts, (again) and most days are fraught with worry over the roads and Mas traveling an hour one way to school...then, back again that afternoon. I think I echo many people's sentiments in town when I say, "I can't wait for this winter to be over!" The color of this winter? White.

Mas and I made Valentine's this weekend. It was exhausting work. First, I found some cardstock paper, so it would be tougher and less likely to rip. Then, I pulled out the twistable crayons. (Best invention in the children's craft world....ever.) Next, I let him choose which colors to draw with. Then, he would inevitably turn the crayon over and draw with the wrong side, (the plastic-capped end) and then look at me to see why it wasn't working....then, I would turn the crayon over for him, and he would move his hand from the "correct" position to the upside-down hold and it would be wrong again! He would color on one page, and then try to get up from the table...he would throw crayons...he would stick the crayon in his nose and laugh...he would stim on the crayons...he would stop and "snort"...he drew on the table...he eventually only wanted to draw with my magenta Sharpie and had no interest in the crayons. It drove me crazy! ;o) But, he had fun, and we eventually colored enough pages so that I was able to craft them into heart shapes for his staff.

It in no way echoed the drawing times that I used to spend with Riley. They used to be creative, fun, and relaxing. This was messy, exhausting, and at times, frustrating. But, it was also his own little event, he beamed while he was actually coloring, and we were able to craft valentines out of his OWN drawings, which is worth so much. It was a good reminder for me that experiences have to stand on their own, and not be compared to similar experiences. I guess that's what all mothers are striving for. People often ask me what is the toughest part about raising Mas. That's easy...always having to be alert. You can never relax; if you do, you might have a blue table or crayons all over the floor that the dogs will eat or things will get broken and he will get hurt or he will let himself outside and walk into the street...the list is endless. All of the anxiety involved in being on "infant-like alert status" at all times for 12 years and counting will definitely take its' toll...and will most likely shorten our life spans some amount. But, I guess it will be a very colorful life...never boring, to be sure.

Here are some photos to enjoy that probably say more than my words ever could! (Note the messy shirt: weekends are sometimes designated "anti-bib" times...I can't imagine always having to wear a bib around my neck...it would drive me batty!)

Wednesday, February 3, 2010

IEP, DTT, ABA, WHEW!

Well, we survived yet another IEP. After researching ABA, DTT, reading another Temple Grandin book, reading polymicrogyria journal articles, printing out IEP suggestions, crossing our fingers and praying, it is over. As such, it went fine. Although those meetings are not as much fun as going to our daughter's Parent-Teacher conferences, this one was pretty decent by most standards. We are fortunate that most of the people involved this time "get him," so we don't have to waste a bunch of time telling them all the things he can do, because he has already shown them what he can do.

We are still working hard on making the Proloquo2go work for Mas. We really want it to be his primary device, but I'm not sure if that will happen or not. It may be too early to tell. He is a little shy about using it, but we brainstormed some options yesterday that may make him more apt to try it out. Somehow, he keeps bringing it back to the opening screen, so someone has to come over to him and push the owl button to get back to his grid with his words on it. That is kind of a problem that we have to work out. He is also setting his finger down too long on the buttons, and then it will try to scroll, but will not speak the word. Lastly, there is no "click" sound on this device when he pushes the button, so that will be something he has to overcome. I consider these all to be minor problems, though...just a matter of teaching him how to get past that.

It is amazing technology, when you think about it, that is available for Mas. I am reading a Helen Keller book and also another Temple Grandin book right now, and it makes me wonder what it must have been like to be mute 50 years ago. I can't imagine Mas never having his speech device. What if he had never gotten one? The parents back in the day must have really been up against it, to deal with their child while having absolutely no idea what the child was thinking or feeling. I say, hats off to them for surviving it. I suppose that's why so many children like Mas ended up being placed in institutions back then, as I would think the tantrums and frustration levels were really high if there was absolutely no way to communicate. Makes us appreciate the fact that we have the technology that we do.


Wednesday, January 20, 2010

worrying about nothing

Well, after Mason's teacher told me they wanted to have him learn to "independently transition between the van and the classroom..." I had a few reservations. First of all, safety. Would he be safe walking down the hall, going up the elevator, then down another hall and going to the classroom? Secondly, would he be able to pull his backpack on wheels and would he pull it without dropping it? Thirdly, what if he got to the elevator and just rode it for an hour? (hee hee!) Well, after Day One of the wheeled backpack trial, I can report that the van aide told us he pulled up the handle for Mas...and Mas proceeded to pull it into the school without even so much as looking back once. Proving once again that moms can worry themselves into a corner for absolutely no reason! Here's hoping it continues to go so smoothly!

Our iPod touch/Proloquo2go trial is continuing...he is doing pretty well with it; now we just need to all learn where everything is. I tried to set it up as logically as possible...but, you never know how it will make the most sense to him or to the classroom staff. Our finagled strap system for the speaker case is working swimmingly. I have been praying the device works for him so well that it will be his primary device. As we are in the grips of yet another winter storm, (freezing rain, sleet, ice, and snow are on the docket) we will be able to work with him on the device at home and try to smooth out any bugs. Time will tell how this device ends up working as his voice....but, to reiterate where we are as a family...we L O V E this application and the device. It is so easy to add items....just amazingly simple compared to the last one. Keep your fingers crossed and say a prayer that this will work for him!

Sunday, January 17, 2010

Little Man



Well, Mas is being the little Rock Star with the trialing of the new speech devices. We have been looking for a new device after having his Palmtop 3 into the company three times in three months. He has been trialing different devices and has been getting around them quite well. So far, we are looking at the Saltillo Chat PC and the iPod touch with the Proloquo2go program. As a family, we are *in love* with the Proloquo2go program, not only because it is highly logical in its' programming and usage features, but also because if it breaks down or gets damaged in some way, we can drive one hour away, spend $400 and buy another iPod touch and be on our way...as opposed to sending in our device and being without it for 8-14 days, and then the very real possibility of shelling out another $5,000 to replace it with a comparable item. We did buy a case for the iPod touch with external speakers, as the built-in iPod speaker is just a touch too quiet for Mas to use as a communication device. Now, I just have to attach a strap to the case so he can wear it around his waist. We have searched long and hard for a case with speakers and a strap, but it just doesn't exist. So, that's where we are in the speech world.

I had a dream the other night that Mas learned to speak, and was speaking in full sentences...tough dreams to wake up from. I remember waiting for 15 to learn to speak; she was considered "speech-delayed" in that she had only a couple of words at 2 years 3 months. We visited a speech therapist who had a lot of suggestions...about a month after that visit, 15 started to talk....and sentences came very quickly....and now she won't shut up! I wish it would have gone that way with Mas.

Yesterday we went out for an early supper with Mas while 15 was working. The battery light started flashing on his device, so I had to turn it off. He kept grabbing my hand and then wrapping his hand around my index finger and pushing it on the power button, to try to get me to turn it back on. It's times like this when you remember how much it must suck to have your voice run out of batteries. (We are all so lucky; it's a good reminder to be thankful for the abilities we all have; walking, talking, breathing, eating, etc.) He kept looking at me like, "what are you doing to me?" It was heart-breaking!

We have been preparing for Mason's IEP the first week of February...those of you who have been in on IEPs in the parent seat already know what it's like....sitting in a room with 15 other people having them tell you all that is wrong with your child...while you fight for them to get more services so that more things can be right with them. The IEP process only gets harder for us, since Mas is now 12 1/2 and we have to talk about awful words like "transition." Transition means the transition from school to some type of group home setting. As the school has to educate him until he's 21, we have some time to worry about it, but it really is closer than we think.

To that end, Mas's teacher thinks he is ready for "independent transitioning throughout the building." We were shocked to hear that at first, but know that he probably will handle it with ease and will surprise us all. We had to buy him a backpack on wheels, as they want him to get off the van and walk up to the classroom (from the basement to the first floor) by HIMSELF! So bizarre to even imagine that... Sure, this will be a gradual process and won't involve them leaving him alone right out of the gate, but it is still quite odd to picture Mas walking down a hallway, pushing the elevator button, and then walking down two more halls to get to his classroom. Talk about rock star! The good thing is, Mas is the *king* of spatial abilities...not only can he remember every single pasture where cows reside, but he can also tap you repeatedly on the shoulder and bang on his window to show it to you...in the DARK. The boy knows where he is, geographically, in the world. He also points to pastures where the cows used to be, as verified by the van riders and driver.

If all goes well, Mas will be walking himself up to the classroom every morning from the van, and will walk himself from the classroom to the van at the end of the day. He will also be walking by himself from the room to the lunchroom, library, etc. It is a very weird concept for us to get used to, especially since we are always holding his hand to go anywhere. It will be interesting to see how it goes, and to see what he thinks of the whole thing. I imagine he may think the adults have lost it! I will keep you posted....


Wednesday, January 13, 2010

presents/presence

It's funny how the new technology in all of our lives has caused us to post on our "everday occurrences..." I guess one could even say the same for the blogging phenomenon. We all seem to be interested in the minutiae of everyone else's world. I noticed a distinct parallel between that and my photography this year. Due to a crazy amount of stress and life's pressures, I only seemed to pull out the camera for the "big" events the past 12 months...and did not seem to always remember it for the little ones...not sure why that is, but I suppose it has to do with the guilt of being a mother and realizing that someone should take pictures of the kids under the tree, and someone should take pictures of the weather, etc. While I did fairly well during the holidays, I would say I had an "epic fail" (to quote my 15 year old daughter...) as far as the Little Moments were concerned. It is something I plan to improve upon during 2010.

I also noticed I have not necessarily done so well posting the "little things" on my blog...preferring to wait for "Something Big" to happen before I post. I am hoping to post smaller things, more often, and save the deep thoughts for times when there is something heavy weighing on my mind.

On a semi-related note, we recently bought a different vehicle and have also been trialing Mas on a new speech device. We are always waiting to see what "big" things he is going to tell us. Well, after a ride in the vehicle the other day, (and after not hearing any mechanical "Kenny-boy" voice coming from the backseat) we opened the door to find that the volume on his device was turned off, and he had pushed, "too hot", "too hot", "too hot" about 10 times. I'm sure he wondered why we weren't responding to him and why we weren't fixing the problem. It's just a blatant reminder why you can never let your guard down as special needs parents and why you sometimes need to remember to acknowledge the littler things in life...like your child that is too hot in the backseat and needs some relief!

As far as the minutiae phenom goes, I guess I am just as guilty as most of us are...it seems far more fun to focus on someone else's day than to really be present in our own. I only follow a couple of blogs, (and no twitters) but I can see where it could become time-consuming. Why are other people's lives more interesting? I would throw out there that it could be due to the fact that while we are focusing on someone else's challenges/successes/stories, we can ignore our own...if even for just a little while. That sometimes makes the day seem a little easier, I guess.

It's hard to take things day by day and not try to organize the entire future of your children's and your own lives...It's hard to actually sit down and listen to your teenager...to actually attempt to read a book to a child who is squirming to get away and can't tell you what he thinks about it. Being a mom (or parent, actually) is full of tiny moments like this. I guess it's called being "in the moment," or being present. It is only recently that I have really come to realize that the little moments are what shape us. I remember having great Christmases and Halloweens and Fourth of July's, but what I think really determines a person's character is what happens on a day-to-day basis...the filler moments that are stuffed in between the Big Moments. That is where a person develops their core values and morals. The little things really are the big things.

I can remember getting off the bus and walking into the house and smelling something wonderful that mom had baked, or sitting downstairs while my dad loaded shells and smelling the gunpowder while he listened to the Twins on the crackly radio...I recall my parents getting ready to go out on a date and smelling Charlie perfume and Old Spice cologne and listening to the great ol' 70s radio...and sitting up with the babysitter to watch Monty Python's Flying Circus, that is, until we heard the gravel cracking in the driveway and saw the headlights hit the large mirror in the living room. I remember mom and dad baking doughnuts during a blizzard, and burning our fingers while we rolled them in sugar and cinnamon and listened to the wind howl outside. I recall losing power during many storms, and having to sit inside around the kerosene lamp and play with ring-a-ma-jigs or play solitaire. I remember dad explaining to us why we should be quiet in the boat and why our feet banging on the aluminum scared the fish, and how to catch the squirmy, wet nightcrawlers on a balmy spring night and then put them in their newspaper bedding down in the old basement fridge. I remember listening to mom's piano music box that played "Sunrise, Sunset", with a wonderful minor-melancholy tinkly arpeggio while watching the little bumpy wheel turn round and round. We all have these moments. I think that when we stack all the little moments up, they are far larger than the Big Moments.

It is a hard thing, though, to pull back and keep doing the small things, especially when everyone wants to hear about the Big ones...here's hoping we can keep things in perspective here and notice a little faster that the tiny mechanical voice has not been heard from the backseat in awhile, and remember to place a Curious George bandage on the foot of a non-verbal joker and listen to his belly laugh as he points at "George on his foot," and that 15 needs to tell us all the details about the latest Chemistry test and how her marble sorter turned out and how she is organizing a display shelf at work...that is what is important. That is what we will remember. That is what they will remember, too.