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!

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