Saturday, October 11, 2008

Dead cars

Yes, I was supposed to work this morning. That is what I was supposed to do. But sometimes life has other plans.

This morning we awoke to Andy hacking his lungs out and Joey bouncing at our feet. So we dragged ourselves out of bed to deal with morning madness. We decided try tuck Andy back into his bed with some cough meds and try to get him to rest. JoeyAndyDad hopped into the car with Joey to get some doughnuts. I got my work corner ready for the day. I thought about calling in to work only half the day, as Andy looked pretty rough and might need a trip to the doctor; at the very least, JoeyAndyDad might need some help (having the boys on two different levels of the house is a bit of a challenge).

The phone rang. Who calls the house at 8 in the morning?

JoeyAndyDad does, when the car just cuts off while driving. Again. I get a premonition that it would be a good idea to call and cancel my work session, which I do before carrying Andy as-is to the car to go get Joey, while JoeyAndyDad calls for a tow truck. I grab Joey, then go get the doughnuts (We love Krispy Kreme!) and come back to lighten up the wait for the tow truck with warm, sugary, doughnutty goodness. The plan is to take the car over to Jeff's (our mechanic), and pick up the car we left there to be winterized (the Jeep). But then. what if the other car isn't ready enough to be driven? I didn't want to strand JoeyAndyDad out there, so I waited to go over with him.

Sure enough, the Jeep isn't ready. So we leave the green car and the red car and head home. By this time, Andy is looking positively perky, Joey is beside himself, and things are generally going crazy. I make an executive decision to take the boys to the Bug Box, which is having a special event today.

We had a fabulous time. i didn't take the camera, because I left JoeyAndyDad home to recover from his morning. We looked at bugs, and played at the various tables, and made thank-you cards and ornaments for wounded veterans, and a good time was had by all. Then we got thirsty and tired, so we headed back to the car to go get some lunch and drinks. I got everybody strapped in, plopped tiredly into my seat, and turned the key.

And nothing happened.

And when I say nothing, I mean nothing. No power at all. The door locks were not even working now. Nada. Silence.

Fortunately, there is an auto parts store right behind the Bug Box, and we were parked right in front of it. Even more fortunately, there is a very nice man working there. Several other ladies who were loading up their tired, thirsty children suggested I run in there for help, and they kept an eye on my guys while I did so. It took a few minutes to get their attention and ask, and then a few more minutes for them to finish up what they were doing to come out and help- long enough that one of the nice ladies came in to check and make sure they were going to help. And they took so long coming out that she had turned her car around to help jump my car, as I already had cables.

I would like to take this opportunity to say, thank you, very nice ladies who took their time to help me, to watch my kids, and to offer their battery, when they all had better things to do and tired, thirsty kids of their own. I don't think those ladies have any idea how grateful I am.

We were about to hook up the cables when the guy came out of the shop with a jump machine, so I rather flusteredly thanked the nice lady and sent her on her way (I hope she wasn't insulted... I was pretty flustered). Turns out it was a good thing I did. Apparently, my battery was super-duper hot- something was overcharging it. Our first attempt to jump it with the machine was a failure, not enough power. The guy then went and drove his big truck around and connected up my cables.

And they melted.

So I was glad the nice lady who stayed got to go home instead of using her battery, it could have been a huge disaster, and someone could have been hurt. Instead, the guy fetched his industrial cables, and got a surface charge going so I could get the car started. I was fine- as long as I didn't turn the car off. Oh, and the jump blew the fuse for my radio (or shorted it out).

So I drove the guys home, tossed them to their Dad, left instructions for my mother to be called to pick me up, and off I drove back to Jeff's. He wasn't there, but I left a note.

That's right. All three cars were now in his tender care.

Mom is letting me borrow the truck so I can get Joey to his swim lesson in the morning and Andy to school on Monday. We're working on how to get JoeyAndyDad to work on Monday. I stopped to grab a child seat, and Jeff had returned. We both laughed hard, but he also promised to get us a working car ASAP, probably Monday night (the Jeep just needs an inspection to be in working order- but what if the stations are closed for Columbus Day?)

We are eagerly awaiting the call.

Thursday, October 09, 2008

Knock Me Over With A Feather

Some of you may recall, about a year ago, my Panda Pig starting turning up his nose at food. He went from eating everything I placed in front of him to a highly select menu that we have worked very hard to expand. We had a perfect storm of preschool pickiness and onset of oral sensitivity, and the result was a very thin little guy who ended up with a massive ear infection (resulting in no food intake at all), then slow recovery of menu items. He is still picky, but I'll take "picky eater" over "neophobic" any day of the week and twice on Sundays, especially with Andy being so thin in the first place, particularly following a growth spurt.

Imagine what ran through my head this morning when Andy, chock full of head cold, turned to me and said, "I want an egg."

An egg? What for?

"I'm hungy. Want an egg."

After staring at him for a full minute and a half to make sure my child had not been abducted by aliens, I asked, "Fried or scrambled?"

"Fried," came the answer after a few moments of thought. So I got off my bottom and fried him an egg.

And he is sitting here in the livingroom, consuming said egg, as if he has eaten eggs all his life and they are his favorite food.

Absolutely amazing.

Wednesday, October 08, 2008

Wordless Wednesday: Party!

Tuesday, October 07, 2008

In My Garden Gate

Pics of the autumn garden are up.

Plans for my two hours off tomorrow:

Mulch garden (six bags worth only).
Clean out broken outside toys.
Clean out path to attic through guest room.
Get out Halloween decorations for the mantel.

How far do you think I'll get? Bets?

Monday, October 06, 2008

Informed Decisions

Stanford University is developing a safer test for children with aneuploidies, particularly Down's Syndrome. The extra chromosome is picked up in the mother's blood, instead of an invasive test that risks injury of the fetus or even miscarriage. Part of the "good news" about the new test is that it can be done very early in the pregnancy, "giving women more time to make choices about their pregnancy."

Carol Boys, chief executive of the Down's Syndrome Association, said: "There is no question that these non-invasive tests will be introduced in the next few years.
"It's therefore incredibly important that potential parents are given accurate information on Down's syndrome before they make a choice about whether to terminate or not.
"We don't consider Down's syndrome a reason for termination, but we recognise that bringing up a child with Down's syndrome isn't right for everyone.
"The more informed parents are, the better the position they are in to make the choice that is right for them."

Carol Boys is absolutely correct. Parents need to be informed, and make an informed choice- not a choice out of fear of the unknown... fear of Holland.

I have written on this subject before, but revisiting this theme is something I find worth doing. Not everyone reads old blog posts, and each day there are new parents in our little corner of the world- the one labeled "special needs."

They need to be informed. We all do. However, I am especially keen on making parents informed before that baby is even born. The decision to have a child- any child- should not be based on fear. It should be grounded in solid, reliable, and complete information, as complete as we can make it. Raising a special needs child is a special challenge. However, raising any child is a challenge. The challenges are different, the experience of parenthood may be different, the friends you make and the ideas you value, the insights you gain and stories you tell may be different, but different is not worse.

If parents knew the supports available, the resources out here, had clear understanding of their rights and what to do to cross those hurdles and meet those challenges, would raising a special needs child be such a terrible thing? If people understood that a person's special needs, even when severe, makes them no less a human being, no less an asset to the human race, would there be more resources available?

In all those "So You're Expecting!" books, we ought to have a chapter, "What if my baby has special needs?" The opening of that chapter should be: "All people have special needs. The trick is knowing what resources are available, and how to use those resources to best support and raise your child."

Without that understanding, the choice made is not informed by facts, logic, and information. It is made from fear.

To all you expecting parents out there:
Be prepared. But don't be afraid.

Sunday, October 05, 2008

Powerpoint Thinking

In my quick guide to IEP season (The Crazy Season), I mentioned putting together a powerpoint presentation of your child to personalize the proceedings. This idea is catching on elsewhere, so I thought I'd talk about it a little more for folks who may be going into meetings, or expecting to, and feeling overwhelmed.

If you are feeling totally out of control, or uncomfortable about your school folks, or just crazy-crazy, a good thing to do is to step back, take a deep breath, and create a reminder of what the focus of this meeting ought to be: your child. How well do the school personnel really know your child? What information do they need to plan and prepare an appropriate program for your child? Who is this child, and what does the child really need? What do you, as the parent, expect?

What we did is put together a powerpoint presentation. If you are not familiar with powerpoint, don't panic, it is a very easy program. It's word processing for slide shows. We set ours up so that each slide had bullet-point information about Joey on one side, a photo of Joey on the other, and we alternated which side was which for visual interest. You can plunk short video into it, too, instead of a photo. We only did this once, but I'll get to that in a minute.

In our slide show, we wanted to emphasize Joey as a human being, as a child with potential, and as the focus of the program being discussed. We were entering a new school, with an almost entirely new staff, and we wanted to communicate to these new people the importance of what we were doing in planning Joey's kindergarden program. With this in mind, we asked ourselves first and foremost: Who is Joey?

This Question sets the tone for the presentation. This isn't about being sappy, this is about humanizing a process that is very apt to dehumanizing and bureaucratizing. We selected a photo of Joey and made two clear statements of Joey: Joey is our bright, cheerful, loving son and Joey is a caring and helpful older brother. We wanted to encapsulate Joey's personality and position in just a few easy-to-read statements. Bullet points break things down for clarity, give your viewer a clear list. Keep it simple, but pack it. Every word counts.

Next, we listed things Joey likes. This information is helpful in keeping the presentation positive and providing information about motivators and frame-of-reference. You can get a lot more done with Joey if you understand that he loves Little Bear and the color blue. We put a simple one-slide list paired with a photo of a "like" that we didn't directly list. Then we used a second slide to list the TV shows and Movies that were most important to understanding Joey and his speech (Joey often quotes these shows when trying to form language and communicate). Next, we added a slide of Joey's favorite stories. Again, this provides a frame-of-reference for the teachers; they can familiarize themselves with a short list of narratives your child is particularly attached to, then use this information to facilitate communication and motivation.

Now that there is a clear idea of what Joey likes, we went straight into Joey's strengths. Again, we wanted to keep the presentation positive. If your child has very strong dislikes that you think need to be clear and addressed, go ahead and put those in; but it might be a good idea to include problems (especially sensory issues) with another section addressing issues.

We dedicated three slides to strengths. Two were strengths we knew about and had documented. Then we put in a slide about strengths noted by his therapists. This lets the teachers know Joey has therapists, and things that might not have been observed at home. We then listed the latest successes (at the time, potty training, fetching items from another room, and learning ASL were important successes to note for Joey).

Instead of countering all this positive information with something like "weaknesses" or "issues", we chose to label the next section "challenges." Now we were getting into the meat and potatoes of what teachers wanted to talk about. IEP meetings seem inherently negative, because the discussion focuses on weaknesses and what will be done to shore up skills and get the child progressing. Progress itself seems to fall to the wayside. However, it is important to show that you are familiar with your child's challenges, and state what you think needs to be addressed. We had one slide of challenges we wanted addressed, then one slide of challenges noted by his therapists. This gives some authority to your presentation: these aren't just things you're paranoid about, but rather these are things noted by an independent source as problematic.

This is where we put our short video, so the teacher could get a sense of the behaviors Joey manifests- particularly the tracking and clicking. Explaining tracking to someone can be a little difficult if they have never seen it.

Continuing the challenges theme, we then noted the concerns raised by the various evaluations we had of Joey. We did as full a set as we could get anyone to do on Joey before he entered kindergarden, trying to get a baseline. Why people won't just do a full work-up on a child I don't know; but we did the best we could, and then noted all the concerns in the powerpoint. Again, this gives the teachers something to work with, but also makes it clear you know where your child stands and what s/he needs. Knowing what to ask for is a huge part of the IEP battle.

We divided the concerns into different slides based on the field: PT, OT, Speech. Then we did a slide just of other concerns we felt needed to be addressed- things we had noticed needed attention, things that Andy could do, but Joey still couldn't, etc. this is slightly different from "challenges." Our "Challenges" section included things like "Being able to create a sentence", "maintaining interaction with peers", etc. This "Concerns" section was more specific: "Ability to take turns", "Ability to recognize consonant sounds", "unable to roll out playdoh."

We concluded our presentation with "Our Goals and Dreams for Joey." This is an important slide, don't neglect it. Teachers are thinking of IEPs in terms of year-to-year. Our job as parents is to have a bigger picture in mind, a long-term vision of where we think the child can go, what s/he can achieve. Let the school personnel know what you are expecting in the long term. Be ambitious, but realistic. We want Joey to eventually be able to continue his education if he so chooses. We want him to be able to self-advocate. We want him prepared to function as an autistic individual in a non-autistic world. We want him to be able to participate in an inclusion setting with (and eventually without) a paraprofessional. Make it clear: my child is a human being, and I want my child to participate in society. With Joey, these long-term goals are certainly reasonable.

One tip: use positive photographs, even in the "challenges" sections. Make sure the child's face is seen often and as clearly as possible. Emphasize the human-ness and reality of your child. The negatives will tend to emphasize themselves, but often no-disabled people have trouble seeing disabled people in a positive manner, so use the power of this visual to emphasize the positive- especially when you are talking about things that seem negative.

The good part about making the powerpoint is it gets you organized in your head. You get a nice, clear picture of your child's strengths and challenges, and what you want the school to do about it. You clarify your expectations- not just for them, but for you. "This is where we are. This is where we want to go. This is what is getting in our way." But most importantly, you clarify that your child is a child like all children, that disability is not dehumanizing. This is a human being who needs support. If you provide that support, we can achieve these long-term goals.

Measuring Success

We have been packing all of Joey's food this year to take to school. We discovered that school food is too highly caloric and heavily invested in carbohydrates to be good for Joey, who was becoming increasingly round. My family is prone to diabetes, so the increase in weight was a big red flag for me (we tend to pork up as a sign of diabetes- the metabolism change is a harbinger that our ability to use insulin properly has broken down).

But has this change in diet worked?

By packing Joey's meals, I can control not only how many calories he is consuming, but how many carbohydrates, fats, and other nutrients he is consuming. For those of you unfamiliar with diabetes, it's not about the sugar, it is about the carbohydrates. Many of those "sugar-free" foods you see advertised are absolutely useless to a diabetic, because they contained the same (and sometimes more!) carbohydrates than regular foods. With my family history and my own gestational diabetes, I have become something of a whiz at reading food labels (it isn't very hard, anyway; the real trick is doing it.)

So, Super Control-Freak Woman is now micromanaging Joey's access to food. He needs about 1400 calories a day, so about 350 calories at breakfast, 450 calories at lunch, and no more than 100 calories for a snack. He needs no more than 45g of carb at breakfast (and 30 is better), about 45g of carb at lunch, and no more than 30g of carb for a snack (15 is better). I also prefer there to be 3 servings of fruits and veggies throughout his school day, and I don't count "fruit flavored" stuff a fruit (ie, his strawberry yogurt is not a serving of fruit). I've gotten a few nice combinations that fit into these guidelines for him.

Have we succeeded?

Well, I can say that I was having roll up Joey's pants with four folds, and now he is wearing the same pants, but with only 3 folds. And that's a whole inch. So we have a taller boy, but not a rounder boy. My next project: upping his activity at home. Snatching activity into pockets of five minutes . Perhaps that is what a trampoline in the kitchen is really for?