The results

.... so anticlimatic.

This is a follow-up to my previous post about a doctor's visit to Madison.  Wow - let's just say I'm glad we made arrangements for Jacob after school because who knew it'd take 3 hours!

The timeline went something like this:
 - arrive early for x-ray.
 - pester those in the waiting room for help for accurate math class survey data while waiting for the actual appointment
 - talk with nurse
 - wait
 - talk with Fellow Dr. and med student (this is a teaching institution - so we saw multi-levels of medical professionals)
 - recall all the points of Allison's history; get stumped by corresponding questions about Jacob.  Yeah - how much did he weigh at birth?  We NEVER get asked about that.  We settled on "it was likely somewhere between 7 and 8 pounds" and have I gone back to look it up?  No.
 - recount what Allison had eaten the day before.  This included the following : nutella roll-up; jumbo marshmallow; caramel cake; and Lunchables for dinner.  Geez - if I would have known this was coming I would have planned better the day before.  Doctor to Allison - did you eat the applesauce at lunch?  Allison: no, I threw it away, but I ate the chips!
 - get referral to speak with the nutritionist while we're there.
 - wait
 - go to the bathroom (of course, the doctor arrives while we're out of the room)
 - talk with doctor (senior, oversight type of doctor)
 - wait
 - talk with nutritionist
 - take blood samples
 - finally - done and on our way home

So what was the end result of the appointment?  Allison is small - in the 0.04th percentile to be exact.  Her bone age is 7; this is pretty good news as girls will typically grow to a bone age of about 14; so she has "height potential" (their words - not mine). 

There is no definitive studies showing that ADHD meds cause prolonged growth delay.  HOWEVER, they find that there is a subset of kids "with less robust growth systems to begin with" that do experience a marked decrease in growth due to ADHD meds.  There is no way to tell if the relationship is cause and effect (the meds cause the growth delay) or if they have a common root cause (whatever creates the necessity for ADHD meds also cause growth delay).  Apparently, no one wants to be in the control group on that study.

They chose a suite of other things to look for - thyroid, anemia, celiac's, growth hormone, kidney/liver function, something else.  We'll get the results soon.

In the meantime, we're supposed to try to squeeze as may calories into her as possible (if I ONLY had this problem).  Whole milk, full fat yogurt, whole milk with more dried milk added, juice, juice smoothies, ensure shakes, zone bars.  My question to the nutritionist (which went totally unanswered) was "how exactly are we supposed to do this without also providing all this to her younger brother who is going to be pissed that his sister gets extra milkshakes?" 

We go back in June to reevaluate (provided none of the tests come back totally goofy).  So, we didn't really get any good answers yet.  Although, nothing was so terribly wrong that we had to plan another appointment right away.  So that's good.

Channeling our inner zen-masters

Last week was a crappy week.  We lost Astro on Tuesday.  I had a root canal on Wednesday.  Our favorite therapist announced she was leaving and her last day was Thursday.  Allison's primary autism teacher sent a note home on Monday that her last day would be Friday. 

So we've been trying to (often unsuccessfully) channel our inner zen-masters when the kids refuse to get out of the car in the morning and go to school (Jacob), or when one gets openly mad at her piano instructor, or when we find them generally crankier with each other and acting more obnoxious at home and in public.  I tried not to get too upset when the babysitter left board games out and dirty dishes from dinner and snacks in 3 different rooms, even though we got home a full 2 hours after the kids went to bed.

Hopefully, we got it all behind us and can start this week fresh.  With new semesters starting and a road trip to the pediatric specialty clinic in Madison - here's hoping for a yin week to balance out the yang.

RIP Astro

Astro 1999-2012

Astro died last night in his sleep.  We believe he's now chasing rabbits in the sky.  We all said goodbye and Jacob wished him good luck.  He'll be missed.

Roller Skating

The purpose of Cub Scouts is apparently to get Jacob to bug us about new activities.  First - the gymnastics outing turned into 14 weeks of gymnastics class and a request that Santa build a "roof place for gymnastics" onto the house.

Two weeks ago was Cub Scout roller skating.  After some initial stumbles, Jacob finally figured out the general mechanics of skating and determined that we should do this skating thing more often.  So - Sunday afternoon we were off to Skate City.

 Skating rinks have changed little since Brian and I frequented them in the late 80's.  Now, it's "retro."  But then again - it was "retro" back then too.

Jacob has managed to skate totally by himself, he falls and gets up without getting upset, but he has a few more practices to go until the word "graceful" will be bestowed upon him.  Allison does pretty well too - but she wants someone to hold her hand while she skates, even though she goes pretty fast around the rink.

Of course, we were all upstaged by a toddler who was zipping around the rink holding tight to a stuffed animal.  I really hoped she was the daughter or granddaughter of the owners because otherwise she was some little roller skating prodigy (how do you figure that out?).  Seriously, the girl was maybe *maybe* three years old.  She went around the rink several times with the fuzzy dice that was as big as she was.

It was fun to get out and skate around for a while with the kids, and a nice break from peeling wallpaper.

Outtakes

Smile at the camera..... seriously?

Project Management

I gave a lecture to my intro engineering students on project management.  I’m revising the lecture a little in honor of my friend Leslie.

5 Rules for Project Management – 

Project managers plan the work, and then work the plan.  (These five rules and quotes were modified from their original format here:http://www.youtube.com/watch?v=GcR-wpSzr4Y)

(1)    Figure out what business you’re in and then mind your own business.

Our business is raising our kids, and parents of kids with special needs may be more tuned into a business model of parenting than others.  Quickly you learn that you do what the client needs, not necessarily what you *want* the client to need.  You must adapt to the marketplace, the marketplace will not adapt to you.

As to the second part of the rule, I think parents of special needs kids are better and minding their own business.  Why?  You know that every tantrum in public, outburst, or poor choice behavior is not a reflection on that child’s parent.  You realize that everyone does the best they can with the information and choices they have at the time.  Also, you’re too concerned with your own business to get too involved in someone else’s.

(2)    Document the requirements, and put them under version control.

Here’s a task – sit down and try to document the steps necessary for a child to learn to draw a house.  They need to be able to visualize a house when they aren’t looking right at it, break that mental image into recognizable shapes (squares, triangles, circles), project those shapes onto a piece of paper, communicate with the hand to get it to draw the shapes that they are mentally holding in their mind, make adjustments, and do it all without losing focus. 

Most people don’t consider these individual steps.  Why?  Because most kids simply put those pieces together by trial and error.  Special needs parents do write them down, they do keep track, and they do know the individual steps to master each new task – be it walking, writing, riding a bicycle, drawing a house.

“You can’t always get what you want, but if you try real hard, you just might find that you get what you need.”

(3)    Prepare a reasonable plan. 

“If your plan requires a miracle, then it’s not a reasonable plan.” Once you have your requirements, you set goals.  You choose (from the myriad of options) the 5-10 things you can reasonably tackle in the given timeframe.  You have to prioritize, because there are probably way more things you “could” do than you “can” do.

Like all project managers, you’re balancing costs, schedule, and client requirements.  Your insurance company may cover 20 hours of therapy, but you can reasonably only schedule 6.  Or to meet a goal you need 5 hours of occupational therapy, but you have 2 hours of physical therapy instead.  Every plan has goals, and most of the time you can accommodate at least two of the three above (cost, schedule, client requirements).   

(4)    Build a good team with clear ownership of tasks.

These are the members of the team you didn’t previously know you needed.  Primarily, they are in the medical, educational, and social science fields.  They are the:

Therapists: Their numbers vary and they tend to have a high rate of turnover.  Some are clearly more skilled than others and you have minimal say in those assigned to your team.  You deal with them most frequently, they come into your home (you quickly learn that it’s not possible to present your house as picked up all the time and they get to know the “real you” on like, day three).  If you’re lucky, you get a long string of good ones, or a good one that stays with you for a long time.

Teachers: Also, their numbers vary and there tends to be a high rate of turnover – especially in the paraprofessionals.  Teachers include the classroom teacher, special ed teacher, speech and language pathologist, physical and/or occupational therapist, and the 3-4 paraprofessionals who are assigned to the classroom to help.  Budget a little extra for gift certificates at Christmas.  Each teacher has a slightly different take on what key goals should be focused on, how those goals are being addressed, and (if you’re like me) you feel a little guilty badgering them to do specific things for your child when she’s one of 28 kids in the classroom at any given time.

Medical Professionals: these would be the “niche experts” of your team.  They can be great for going to get specific answers to questions that you have.  Typically, they are consulted and then the information they provide is used by other members of the team.  The point person (for a multitude of reasons) is the pediatrician.  Our team has at various points included a neuropsychologist, psychologist, geneticist, ophthalmologist, specialized dentist, and now an endocrinologist.

It’s a good idea to have your entire team on the same page, but working on separate things.  For example, we will all work together to improve handwriting.  The teacher is providing specialized lined paper, the speech pathologist is working one-on-one to come up with ideas of things to write about, the OT is introducing different types of pencil grips, the ophthalmologist determines that your child can see the page clearly, the home therapists are bringing needlepoint crafts, and mom is supervising piano practice.  All are working on different activities involved with improving handwriting.

(5)    Track and report project status. 

The cornerstone to any successful project is tracking.  How do you know if you have made any progress if you do not track it?  Perhaps you are trying to lose weight?  You might get a general sense that you’re successful if your clothes get looser, but if your goal is to lose 10 pounds, you need a scale, and you need to stand on it.  Gulp.

Tracking accomplishments against a milestone schedule is hard.  You have a laundry list of goals and after 6 months when you can review and say “yes, we’ve met this goal” you know you’re making progress.  The goals might be goofy-sounding things like “transitions to new activity with less than 3 prompts 80% of the time.”  Your goal is to transition to new activities (“hey kids, time for dinner!”) without a fit and without you having to say it 100,000 times.  You’ve assigned someone (therapist) to record the change of every activity and the number of prompts it takes to move on.  Someone (you, therapist) has created a motivator to encourage moving to the next task without 100,000 prompts.  At some point, you sit down and decide if this goal has been met.  If yes, you decide on a new goal.  If no, you try and determine where the stumbling block is – perhaps the motivator is no good, perhaps the goal requires an unanticipated skill your child does not yet possess.  You cannot do this without collecting lots of data and setting aside time to review it.

I’m sure there are people who would read this post and “tsk-tsk” the whole idea that parenting kids is like being a project manager.  Some would say the goals and tracking and intervention interferes with the natural and organic nature of childhood.  I refer those people to Rule 1.

Jacob's Week in Review

Try as I might - I could not get this to rotate.  Enjoy.

Creepy Math Skills

After the holiday leads to new subjects in school - for Allison that means multiplication and division.  I'm looking forward to this for her.  Why?  The girl can memorize and she already knows quite a few sets from the math apps on the iPhone.  Plus, she doesn't yet seem to mind me quizzing her on them.  Now - the "sprint tests" in class might not be her forte - but simply the fact that she knows the material is good enough for me.

Of course, they are learning multiplication and division not just by memorizing the times tables - but applying it with WORD PROBLEMS.  Seriously - I think they are overcompensating with the vast quantity of word problems these kids see in math.  Everything is a word problem - except geometry.  I haven't seen any geometry word problems yet.  I suppose that's coming soon too.

Anyway - so Allison was working on a word problem for homework and I was explaining that while 4x5=20, and 5x4=20 were exactly the same thing - 20/5, and 5/20 gave you two totally different answers.  I always use cookies and people to explain division - if you have 20 cookies and 5 people - how many would each person get - "4" says Allison.  Ok, if you have 5 cookies and 20 people - would each person get 4 - "No."  Ok, see - not the same. 

This is the time at which Jacob pipes in "each person would get a quarter of a cookie.  You just need to cut the cookies into quarters, Mom."  He was - at the time - passing through the kitchen on his way somewhere else.  I believe I first looked at him - dumbstruck - trying to think if he was actually correct.  He was.  Geez- no wonder he pitches a fit about having to color in groups of 10 fish on his math homework then count them (last night's battle).  Perhaps I will have to talk with his teacher about some alternatives.