Change 3 Challenge/ Prader-Willi Syndrome One Small Step

Saturday was so awesome for our family. It isn't every day that we can meet up with other families that have children with Prader-Willi Syndrome. Sometimes it can be really isolating as people really are not familiar with PWS and quite honestly very few friends/family (in our case) seem to care enough to educate themselves. Yes, people as a whole are very accepting of A~man but quite honestly I would love for a couple to actually ask about it! (if you are my local friend and reading this you know you are an exception to the rule ;) Most people just assume he "just" has autism. A few families we have met within the year were at the first walk we went to, and then the second one this past spring was LJ's Foundation walk. A~man in particular LOVES the little ones with PWS...and their siblings. He is a baby/toddler magnet.

It was a 5K with a fun run for the small kids, and a 1 mile run. I am happy to say we all did the 5K but we did come in last, lol, still trying to figure that one out but my guess is most of the people behind us must have not went till the end as we were not going slow! It was 80's themed and both of my men were sporting a mullet, Z a side pony tail and we also had leg warmers.

Afterwards we went out to lunch with a couple of families...where A~man had a melt down. Which is unusual as a whole as this doesn't normally happen when we eat out. He does best at sit down restaurants and this was Subway and it seems places where he has to decide so many possibilities (toppings, drinks) is overwhelming. But it did not last long. I wish events like this happened more often than once or twice a year!

Onto my Change 3 Challenge-

1. (going to bed before midnight) has been a total bomb. I will say though that most nights I am getting in bed before 12:30...baby steps?

2. (drink a gallon of water a day) This has been the one I have had the most progress with. Some days it is only 7 glasses but that is a big improvement.Yesterday after the walk? I realized I had only drank two cups of coffee and a coke (which is a rare thing..I do not drink soda usually) up until 4 pm. I felt horrible physically! That made me really realize how much better I have been feeling when I stay hydrated. I have also noticed the rest of the family drinking more water too!

3. (everyday for the month of October I am going to either giveaway, throwaway, or sell 30 items every day) While that has not been a total bomb...I notice a big difference...I think think 30 items was a bit high. (for me) There are only a handful of days left in the month so they will be packed with cleaning as my inlaws are making their first trip down, (moving here) in a week!

What else are we doing? School of course. It seems like it never fails...I plan structure at the beginning of our year and we always go towards unschooling...except for our morning lessons online. It works for us to take a plant lesson we learn on the computer and then apply it when we go on our daily nature walks. Oh, and we are taking advantage of those days it has been warm enough to hike/walk...I know the cold is not far away!!

Diary of a Real Payne Book 1: True Story – a TOS Crew Review

  

Recently I was given the opportunity to read a rather comical book from Barbour Publishing called Diary of a Real Payne, True Story by Annie Tipton. The book narrates the antics of a ten-year-old girl named Emma Jean Payne, "EJ" for short. She lives in the small town of Spooner, Wisconsin (entirely too small for her!) with her father who is a pastor, her mom who is a second grade teacher, and her pesky brother Isaac who is five and about to start kindergarten.

EJ dreams largely about what her future holds, but her imagination has a way of getting her into trouble wherever she goes. When out with her family or at school she escapes into herself so much that she seems to forget where she is and what is going on in the real world. She chronicles her dreams in a diary that her mom has encouraged her to write in, as a way to express what she hopes for her future.The story is written alternating between her writing in her diary and the actual events taking place. (although I will tell you, it's not a true story, shhhh!)

It does remind me a bit of a different well known book series, (I haven't read it but have seen the movie) but with a bit more of a moral Christian lesson after each unfortunate situation that EJ finds herself in. She learns from her mistakes but it does not seem to keep her from finding trouble again. (she cuts a chunk out of her brother's hair, eek!)

Personally I would say the book would be good for either boys or girls age 9-12 years old. I liked the book okay for my 11 year old daughter but I would not read it to my 14 year old son. (he's at a younger level) The reason why I wouldn't? Some of the antics are things he has actually done...or would do. I do not want to give him any new ideas. 

Not so funny when it happens in real life, trust me on this! ;)

Ultimately, it is a cute story about an overly imaginative young girl, with big dreams, that learns a lesson from each situation she gets into. She also learns through a friendship with a neighbor to look beyond initial appearances, which is something we all could benefit from doing.

You can buy this book from Barbour Publishing right now for a reduced price of $4.49.

 

Another Change 3 Challenge Update

Here are my original goals for the Change 3 Update. Unfortunately I have failed miserably with all of these this week. Well, except I am still drinking more water than I was. Have you ever had a week that it feels like you blink and then it is over? That was how this week went.

We did do some of our homeschool middle school work and A~man has been working on refreshing his knowledge of syllables but beyond that I was working on getting ready for his birthday. Gosh, he is now 14. *stunned* Wasn't he the little itty bitty bundle in my arms just a short time ago? (I need to look for those photos!) Here is one of him this week though. He is such a handsome young man! We got him new John Deere bedding and decorations plus a blow up couch for his room that he likes so much he is sleeping on it. Also he has a late present coming tomorrow (metal detector) that he has been wanting for a long time. Plus an Itunes card and some money from friends and family. (money isn't the best PWS gift I might add...it causes a lot of anxiety but I love how kind people are!) He had a good birthday!

We also have been trying to spend a lot of time outside before it gets cold. Today on our walk Z~girl stepped on a baby water snake, (we really LOOKED at it as A~man almost stepped on a baby copper head a couple of months ago) so we stopped and studied it. It was fine despite being stepped on but it tried to make itself as big as it could side winding off the path! Today on our walk we also found a newly hatched snapping turtle. I wish I would have had my camera it was so cute! The first time we saw it it was playing dead...we thought it was dead. We walked by the same spot about 10 minutes later and saw it walking off. I didn't think this was the time of the year that babies would be hatching?

Anyway, tomorrow is another day and this week can be a new start for my Change 3 Challenges. Hopefully next week I will have a little better progress to report than this week.

I have a guest blogger here sharing some Halloween fun!

Today, for the first time ever in my blog I have a guest blogger! Keri, a homeschool mom from Adventures of a Home-School Mom, is here to share some spooky Halloween fun!

October, has always been one of my favorite times of the year!

Now, that I am a Mom and home-school to boot, I find that I enjoy it even more! Besides the wonderful cool weather, and beautiful changing of the leaves. I find that the festive ,Holiday months, make for more Creative learning opportunities.

So far this month, Fall/Halloween has helped me to create some Fun themed worksheets, crafts, etc. As well, as doing a very interesting Unit Study on the Human Skeleton.

During this past week’s schooling, we have kept on with our Holiday theme, by incorporating in some Spooky cooking lessons.

Both of my children really enjoy cooking. Besides, figuring out how to make the recipe, I think eating their Spooky Creations were their favorite part :)

( Below you will find the recipes and photos of what the foods should look like when completed.)

 

Spooky Witch Finger Cookies

  Recipe makes 60 cookies

Ingredients:

1 cup butter, softened

1 cup confectioners' sugar

2 & 2/3 cups all-purpose flour

1 teaspoon baking powder

1 teaspoon salt

1 teaspoon almond & Vanilla extract

1 Egg

¾ cup of Almonds

1 (.75 ounce) tube red decorating gel or you can use jelly

Directions:

1. Combine the butter, sugar, egg, almond extract, and vanilla extract in a mixing bowl. Beat together with an electric mixer; gradually add the flour, baking powder, and salt, continually beating; refrigerate 20 to 30 minutes.

* You can also put green food coloring in the cookie dough, for a more spooky looking cookie.*

2. Preheat oven to 325 degrees F (165 degrees C). &  Lightly grease baking sheets.

3. Remove dough from refrigerator in small amounts. Scoop 1 heaping teaspoon at a time onto a piece of waxed paper. Use the waxed paper to roll the dough into a thin finger-shaped cookie. Press one almond into one end of each cookie to give the appearance of a long fingernail. Squeeze cookie near the tip and again near the center of each to give the impression of knuckles. You can also cut  slits into the dough to help give a more finger-like appearance. * If the cookies have warmed, you need to put them back into the fridge to re-cool before baking*

4. Arrange the shaped cookies on the baking sheets.

5. Bake in the preheated oven until the cookies are slightly golden in color, 20 to 25 minutes.

6. Remove the almond from the end of each cookie; squeeze a small amount of red decorating gel into the cavity; replace the almond to cause the gel to ooze out around the tip of the cookie.

                                          
Here is a great link to a video on making these spooky cookies!

I hope you all enjoy making and eating these cookies as much as we did.

Please check out my Blog, “Adventures Of A Home-School Mom”,  next week for more Fall/ Halloween Themed Fun!

Until Next Time...

                                            

My Weekly Change 3 Challenge Update

It's been another week on the challenge and here is how I am doing thus far!

1. This one is a BIG ONE (for me) I am going to get to bed before midnight this month.

Well...this one is NOT going well. As you can maybe see it is almost 1 AM. I honestly would love any advice on this one, especially from parents of children with special needs. (even more so from those that homeschool) I need more sleep. Here is how our normal evening goes: After eating we watch something on Netflix with the kids. Somewhere between 7:30 and 8:00 we go upstairs and A~man bathes and goes to bed. (needs supervised) Z~girl plays her violin and does the dishes and I strive for her to be in bed by 9:30 but it is normally 10:00-10:30. (future night owl?) About every other day at 8:30 I take a long hot bath. (helps my hip/back issues) Then, hubby and I watch Netlflix for about an hour..sometimes a bit longer. After that I get on the computer....auhhh maybe that is the key. Maybe after watching Netflix with the hubby I need to just go to bed? It's worth a try.

2. I am going to drink a gallon of water a day. I am almost there! I drink 7 glasses most days with a couple days more like 6. 1 of those glasses is with a tablespoon of honey and raw applecider vinegar in the morning. The good thing is that I am always aware...before we walk I remember to drink a glass. I have even started keeping a glass in our bathroom and on occasion drinking it, ahem, when I am in there! The infused waters are AMAZING. I have used our frozen strawberries, mint from our yard, lemons, and also some wonderful wild orange and lemon essential oils in my water. (fyi not all essential oils are consumable..make sure!) Here is one I am going to try for tomorrow that I saw on Pinterest. (copying the photo from there BTW so it's not my own) One thing I have noticed though is that if my daughter in particular sees me making a quart mason jar of infused water she thinks it is to share. But in keeping track of how much I drink I keep some just for myself. I love that the rest of my family likes flavored water though so I try and make sure they have some too!

I'm not sure if it does what is says BUT I bet it tastes yummy!

3. What is number three? I tend to be a packrat. I have gotten better but I have a long way to go. So...everyday for the month of October I am going to either give away, throw away, or sell 30 items every day.

I have probably done this 4/7 days. Maybe I set the number too high. But even from just those four days I have noticed a HUGE difference in the clutter. So despite the fact I haven't done it 7 days I do notice improvement. I only wish I had taken some before pictures like a fellow challenger did. I wasn't that brave. ;) Plus the room that the clutter came from (mainly our bedroom) came under attack by our pooch before I got wise this month and started crating him when we are outside of the house. He tore a huge hole in our carpet trying to burrow his way under the door? I think we were away from the house less than 2 hours that day. The dog has issues. Plus some other damage he has done on the wood around the door....

Keep it up Change 3 Challenge gals!!!!!

Are You New to Homeschooling?

I am guessing that most everyone that is on my blog list isn't new but I had someone recently join a homeschool group I belong to that is new to homeschooling. She wanted input on online resources so I thought I would share some that our family has loved over the years.

Time4Learning- Is one we have used off and on since we started homeschooling 7+ years ago.
ReadingKingdom.com is one we tried out for the Old Schoolhouse Magazine that has made such a difference in A~man's reading!
Talking Fingers- this site has many great resources for special needs learning. 
Xtra Math- This is a free "flash card" type site that we are using right now for both kids.
Spelling City- I LOVE this site and there is a free version too. I like that you can make your own spelling list or there are already made ones. It has games for alphabetical order practice also.
Science4Kids.com- This is a new one that A~man has really been enjoying this year!
Learning Games for Kids- Tons of games including keyboarding games. 

I can think of many more but it's time for the kids to start their work so I had better get off the computer. Hopefully I can come up with a second list soon!

Oh, and is anyone curious how I have done on my Change 3 Challenge?  Check back tonight and I will do an update!

What would you do if you had witnessed this?

This isn't special needs parenting or homeschool related for a change. Today something happened that really shook me up though. On the way home from Geography Club we saw two teens, a boy and a girl, between 16-18 along the road verbally fighting. Something just wasn't right. It was the afternoon and she was sitting by the road in pajamas. I had hubby turn the car around so we could drive by again. He was chasing her. We live in a small city, this was a busy road and I'm not sure if we were the only ones noticing or what.

We turned around and went in a parking lot along where they would be walking but they turned off on a side road. They didn't notice us but I just felt drawn to make sure the girl was okay. I could have a child that age. When we found them again they were on a side road and they were yelling and it was about to get physical. We stopped where they were...they stopped fighting but we called 911....kept driving...but turned around...just to make sure she was ok. He was chasing her...and it got physical. We pulled up and just as hubby was opening his door to go break it up the police showed up.  The guy fell to the ground and just layed there and the girl was sobbing. We left after that but I can't get it out of my mind.  (oh the kids witnessed it too!) I told Z that if that had been her as an older teen...I would want someone to make sure she was okay.

I'm still not sure what was going on but I'm glad we stopped. For all I know the guy initially may have been helping her...who knows what the situation was. (they obviously did know each other) I just remember reading her lips as she was yelling at him "Go away" "Get away from me". I truly pray for this teen girl...and hope she is okay now. :(

What would you have done? Would you have gotten involved or went about your business? 

How am I doing on my challenge?

I would like to tell you that I have totally aced everything I set out to do...but I can't. I guess the reason I chose these two particular items for my challenge this month is that they are things that are challenging for me. They are not things I can change overnight. YET...I have made progress!

1. This one is a BIG ONE (for me) I am going to get to bed before midnight this month. 

This may prove to be the most difficult for me. You see, during the day if I have time alone it is to do work or lesson plan. But at night is the one time I can just vegetate. LOL. This makes going to bed a challenge as I know what awaits me in the morning. No, I do not dread the morning, but let me tell ya, being a special needs parent is not easy. Yes, it can be an absolute joy but it also can wring out every bit of energy and patience out of a mama. (or dad...or sister) To sit here in complete silence, just hearing the crickets outside, rejuvenates me even more than a wonderful cup of coffee. I will say that I have been going to bed earlier this week. It just tends to be 12:30 not 12:00. I'm workin' on it. ;)

2. I am going to drink a gallon of water a day.

I am doing even better with this one. It has helped me become a lot more conscious of my intake. A couple days I did reach the 8 - 8 ounce glasses but most days it was 7 glasses. THIS is good though as it is more than I was doing before. The main issue I have come up with is, ahem, I need to be doing it earlier in the day as drinking a couple of glasses of water after 8 means I am up and down all night. TMI huh?

3. What is number three? I tend to be a packrat. I have gotten better but I have a long way to go. So...everyday for the month of October I am going to either giveaway, throwaway, or sell 30 items every day. 

 

This one I have been more successful with. Monday through Saturday I did just that. Today I didn't get to it but on the other days I did more than the 30 items so it pretty much evened out. I love the results! Oh and I just sold one of my son's Disney costumes from when he was little on Ebay for 62.00...woohoo! Can't beat that.

So it is coming along and I know next week will be even better with all three goals!!!

Tomorrow will be a busy day! After lunch we have Geography club and our assignment is to tell about foods from France and to bring the snack. I admit, this WILL be fun and yummy. Hopefully this week I will also be signing my daughter up for some writing homework help, as it is really needed right now. I love to write, but somehow I am finding teaching HER to write is only causing a major conflict between us. So it's time to call in some help from the outside.

Sometimes I Hate PWS!

A 14 year old child who was in the beginning of a MAD diet passed away this past week due to the development of diabetic ketoacidosis after discontinuation of her medications. While it was not the MAD diet in isolation that caused the death, there are some important points that need to be made here for those of you who are implementing or considering this diet. Stopping these medications without blood testing to prove whether or not they are necessary, and without consulting with medical professionals, can be dangerous, and even fatal. Some supplements can be toxic if given when not necessary or in too high of doses. Lastly, the MAD and ketogenic diet may create symptoms that could be signs of the development of more serious medical conditions (increased thirst, increased urination, fatigue) so routine blood testing needs to be done for children who are placed on this diet. Please be aware that the posts on this website are not from medical doctors and therefore, the advice given here should always be discussed with medical professionals before stopping medications or starting new supplements."

Jennifer Miller

I also want to add this link from the foundation of PWS Research.