Our version of Home schooling

Although, Talli does go to ESY I supplement a hodge-podge of different bits and pieces that I have pulled from several places. All combined, we spend no more than an hour on "homework", excluding reading.


Handwriting
Spelling
Math
Geography
Reading
Science


Handwriting- A former OT of Talli's introduced us to Handwriting with Tears. Talli's writing is horrible, although, it has much improved. Occassionally, she reverses her letters, the letters are large, and she has difficulty with spacing. This summer we will work in the Printing Power book, each day she writes in 1-2 pages. On some days, she will write on the lined paper spelling words or items she has composed.


Spelling- We have added spelling goals to her IEP. Each year, there is a list of words that the kids are expected to know, many of the words are repeated to keep them fresh. There are about 100 "no excuse" words for the 3rd and 100 for the 4th grade. Her goal is to have a certain proficiency for both lists.


I make flash cards to help her practice the words. She has a very good long term memory, so once we can get the words in there, she tends to keep them. Since laminating can get expensive and I hate working with the home laminator I purchased a few years ago I do a quick and cheap version- trim them up and tape them to index cards with clear packing tape.

Since the tape doesn't cover the entire card, I have writing space on the back to make notes. I run through the words to make sure she can first read them. There were only 2 words in the 3rd grade list she couldn't read the first time through. Then we work on spelling, if she can spell it out loud (picture a spelling bee), then it is passed off with a note on the back and we don't bother with it for a couple of weeks. We work on about 6 words at a time.


Each day she tries to spell the word I read aloud. Once a week, I have her write them. We also use spellingcity.com to practice the words with the games. Her favorites are Hang Mouse and the word scramble.


Each year's worth of cards fit very nicely in a box for Energy Options candy bars.


Math- Talli is working on basic addition and subtraction, telling time, and counting money. At school, she uses Touch Math. She no longer needs the dots on the numbers or coins, but counts as if they were there.


Each day, I have her do 2 worksheets from the books listed below. Once a week, she gets her allowance of $3.50, which she has to count out and put 1/10 towards tithing and 1/10 towards savings. Then there is a discussion about how much she is going to save for a special event or toy and she has me put away a certain amount for that. Currently, she is saving to pay for her ticket to Disney Live! Three Classic Fairy Tales, which will be here in Illinois in March 2012.


The materials we use are:
Horizons K Math Package (I purchased from Son Light with the flashcards and manipulatives)

Time, Money, & Factions 1-2 (An I Know It Book)





Science- For science we are using
Magic School Bus books and videos
The Human Body, Super Science Activities
Facinating FActs, The Human Body

We talk about the systems of the body and she will do a worksheet out of one of the latter two books.

Geography- We started covering the Great Lakes Region, then the Prarie states, and then the West and Southwest (Florida was discussed almost daily because... That is where Disney World is!).
We used the following materials-
The 50 States Book and Magnetic Puzzle Map
Leap Tag Pen and Map
A cardboard puzzle of the states
A two week trip driving to California

Extended School Year

Today was the last day of the regular school year. On Monday, Talli starts Extended School Year (ESY) services. ESY services are for those who risk loosing skills over the summer break or who have an emerging skill that could be lost over the summer break. Those with Propionic Acidemia qualify for ESY as a metabolic crisis or stroke can cause them to loose skills.

In our district ESY is held M-Th in the mornings for 6 weeks. It is held at one elementary school in the district, so she will be bussed there each day. The classrooms are either multi-needs or instructional. Talli is in an instructional classroom. It tends to build her self-confidence as some in her class are a little behind her and some a little bit ahead.

The benefits for Talli are significant- rather than loose about 1 month of skills that the typical student looses over the summer, she tends to gain skills. I do work with her extensively over the summer as well, in my next post I will go over some of the things that we do during the summer and extended breaks from school.

What is average and what does it mean?

I was met with frustration again this week when I was discussing something with a medical provider and she did not seem to understand some basic math terms that are used all of the time in the medical field. The specific point was the "median" life expectancy for those with Propionic Acidemia. Nothing has changed in the past 9.5 years and the median life expectancy remains at 3.5 years.

Median is the middle number when you are looking at a series. So in the series 1, 3, 5, 8, 9, 15, 17, 23, 49-- 9 is the median as it is the middle number. So to get 3.5 years as the median life expectancy in PA there are an equal number of affected individuals dying under age 3.5 years as those older than 3.5 years. Median is useful in describing a set of data or series where the numbers are in a far reaching range.

Mean is what people usually think of when they talk about averages, it is when you take a set of numbers and add them and then divide by how many numbers in the series. So looking at the same numbers above- 1, 3, 5, 8, 9, 15, 17, 23, 49-- Add them 1+3+5+8+9+15+17+23+49=130. Then divide 130 by 9 as there were 9 numbers in the series- 130/9=14.44

So with the same set of numbers the median and mean can be very different.

I was upset because this medical provider was telling me that propionic acidemia was not life threatening, when it is even when you are past the median life expectancy. She was essentially telling me that since she is older we don't have anything to worry about-- no, we do. We have to continue to be careful and cherish everyday because it is not known how long she could have. So shame on her for passing on misinformation from a person who should know these basic math concepts.

Pounding the Pavement for PA

On October 16th, I will be joined by several other parents and friends of those affected by Propionic Acidemia in Columbus, OH. We will be running in the Columbus Nationwide Half Marathon. Our goal is to raise $13,100 for the Propionic Acidemia (PA) Foundation, that is $1,000 for each mile of the race. My personal goal is to raise $4,000. I will donate $1 to the PA Foundation for each mile I run in training and in events. I will also be running in the Hot Chocolate 15K with my husband, Rawlo, on November 5th in Chicago.


HOT CHOCOLATE 5K 2010
Ryan, Jill's son on the left, I am in the center, and Jill, President of the PA Foundation is on the right

The PA Foundation is dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals. I have been on the board of directors for the past 5 years and we try very hard to make sure we get the most out of the funds donated.

PA is a tough disorder. Talli has faired well compared to most others that we know of, but we do not know how her life will play out or for low long. PA can cause seizures, low muscle tone, developmental delays, cardiomyopathy (enlarged, weakened heart), Long QT Syndrome, low blood cell counts, osteoporosis, stroke, suppressed immune function, optic and auditory nerve atropy, pancreatitis, and very early death.

Please make a donation to the PA Foundation. You can do so through the Paypal link at http://www.pafoundation.com/, through my Firstgiving page at www.firstgiving.com/fundraiser/brittany-smith-2/poundingthepavementforpa, or send a check payable to Propionic Acidemia Foundation at 1963 McCraren Rd., Highland Park, IL 60035.

You can follow the progress of my training on the Firstgiving link above.


Talli October 2010



Talli October 2001, her first "crisis"

Low Protein Foods on Amazon.com

Talli gets into food jags. I few months ago she was eating a LOT of french fries, so much that we had to limit how much she was eating per meal. Then it was Energy Options Candy Bars. Now it is Ener-g Gourmet Crackers. The problem is that I never know what food she is going to take to and for how long. It is easy with fries, since everyone else will eat them and they are readily available.

I only ordered 1 box of the Ener-g crackers when I ordered some low protein/allergy-free foods last week. Well, yesterday she ate 5 of the crackers and would have eaten more if there were more. The box only has 18. I called and visited several local stores and even though Target, Meijer, Jewel, Whole Foods, Fruitful Yield and Dominicks all have a gluten-free sections, none have the crackers. So in looking on-line this morning, I found that Amazon has Ener-g products in their Substribe & Save section. They ended up being only $2.43/box + free shipping, while Ener-g.com has them for $4.18/box +shipping.

So she will have to wait until Tuesday afternoon to get more crackers- I how she will still want them by then.

What Not to Say to a Mom with a Seriously or Terminally Ill Child

I came across this article today by Rachel Carpenter http://www.associatedcontent.com/article/1645757/what_not_to_say_to_a_mom_with_a_seriously_pg3.html?cat=25 and it is so true. These are things you should not say to a mom of a seriously ill child.
#1 "No matters what happens. it's God's will. [sic]"
#2 "I just know he/she will get better."
#3 "Are you needing help?"
#4 "I know exactly how you feel. My baby was in the hospital with RSV last year."
#5 "I had a friend go through this too. It was really tough for them, and now the child has lifelong disabilities."
#6 "I just don't know how you do it."
#7 "You need to relax. You need to be strong for your other children."

I definately get #6 a lot. I don't know how I do it either. Many days I want to stay in bed and pull the covers over my head, but I can't. There are feedings to do, appointments to make and go to, and kids to feed. If I looked pulled together it is because I rely on Diet Dr. Pepper and try really hard not to cry in front of my kids.

Occasionally, I get #3, and as the article points out, it is difficult to say 'yes' to the phrasing of that particular question. YES! YES! I always need help. It is horrible dragging 3 kids to an appointment, especially to offices that aren't kid friendly (most), have small rooms (many), it is an appointment where I actually need to hear what the doctor is saying (typically), or they run a couple of hours behind schedule (much more than one). I could definately use someone to cook us a meal that is low lactose (O), kiwi-free (M), peanut, egg, nut-free, etc. (Talli), low protein & low fat (Talli), and high protein & low carb (me). Meal planning is enough to want to crawl under the covers as mentioned above. ;).

A reminder to always check...

I know that everything should be checked with Talli: verify medicatins are correct, the right formula is given, packages of food are checked for allergens, IV fluids are correct, etc., etc.,

A couple of years ago, she was in the hospital and TPN had been ordered. It was a non-modified amino acid version, the kind anyone else would get. Some visitors were leaving when the IV bag was hung and as I walked them to the door, I checked the bag. The protein count on the bag wasn't what I had expected, so I alerted a nurse. The pharmacist had made a mistake and 24 hours worth of protein was in a bag to run for 4 hours. I am sure that no long term damage would have been done, but it likely would have prolonged her stay. Everyone was very nice and apologetic over the mistake and a new bag was sent up within the hour.

Yesterday, Talli got her delivery of some Energy Options candy bars. She has been eating a lot lately and we had run out of the mint and while chocolate versions. Energy Options candies are made to be completely protein free and are peanut and tree-nut free. To foster her indepenence, we usually have the bars in a designated place for her. Instread of having the imprint of "Energy Options" on the bar, it said "PhenylAde". Appled Nutrition makes both Energy Options candy and a bar called PhenylAde that is an amino acid modified food to replace formula for someone with PKU. The bar contains 10g protein equivalant, lacking only phenylalanine. So if Talli ate one, she would be getting 100% of her protein for the day.

The bars are getting sent back to the manufacturer, so they can verify where the problem lies. Is this actually a PhenylAde bare that got into an Energy Options package and box or an Energy Options bar with the wrong imprint. It was a reminder that everything does needs to be checked before it goes into Talli to keep her as well as she is.

I did check all of the mint ones by pressing through the wrapper to read the imprint on the bar.