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.