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.