Sunday, June 29, 2014

PWS Weekend!

This weekend we were fortunate to be able to go to a mini Prader-Willi Syndrome conference. We have never been to one although we have been able to attend a few fund raising walks. It's so nice to get together with other families that "get it". Not all individuals with PWS are alike but being around other families that have gone through similar situations makes me feel less alone in this sometimes crazy little world I live it.

What is TRULY amazing is seeing the little ones under 5 years old. PWS has come a long way due to growth hormone and early intervention. A~man walked and talked  when he was around 3 1/2 years old but his speech at that time was only recognizable to hubby and I and he was very unsteady on his feet. He did start GH when he was two but at the time it was very unusual to start it at such a young age. Now,they are starting growth hormone as a very young infant. I was amazed to see a particular little guy that wasn't even 2 and he was walking very steady on his one would have guessed he had PWS.

We were able to have a short one on one session with Dr. Miller (pediatric endocrinologist specializing in PWS) which was very informative. Most of the advice she gave us had to do with improving some of his social skills. I didn't notice it before (how did I not?) but he really needs to work on his eye contact when he is conversing with someone. I think part of it was he was so distracted by what was going on around him. He also need to work on having  more reciprocal conversations. He tends to do most of the talking, LOL.

A~man met several new friends but he totally loves the little ones. One of his newest best buddies (as he said) is 7 and they had so much fun hanging out together. A~man even convinced him to come and see the
fire truck with him.

He even met a sweet girl that is close in age to him. He saw a picture of her on my Facebook and wanted to meet her but the first day we were there he stayed as far away from her as possible. Then when we weren't around her he talked about her non stop.LOL By the second day he had stopped playing hard to get and they were good friends. They have a lot of similarities to each other. I'm hoping to get him to write a letter to her. (he NEEDS to work on his writing)

Is she a cutie or what? 

We are pretty much done with school for the year except for a couple of things. I find it best that they both have something to occupy themselves or they will fight more than they already do. With both we plan on doing a "word of the day" thing to improve their regular vocabulary and reading vocabulary which reminds me! With the end of year testing A~man's progress is very progressing just a few months at a time over a year. (and sometimes regressing) At times this has been depressing to me but it is what it is and I'm just happy that I can see him progressing and maturing in ways that cannot be measured by a test. BUT in oral expression, picture vocabulary to be exact, he progressed a couple of years! That totally blew me away even though I already knew he was pretty good at to get him to improve on the listening. 

Sunday, June 22, 2014

Oh what a weekend....

Can I be honest with ya? I am, not tired, TIRED! Worn out! On average we have PWS issues pretty much on an even keel. That isn't to say we do not have daily issues but they are manageable. Sometimes when things are too calm...I get nervous and them WHAM, we get hit by the Prader-Willi Syndrome truck. It normally happens after things have just been going along way too well and uneventful. I'm not talking about a little issue but every few months it will hit us big time.

As my hubby said in a blog he did a couple of months ago, most of our son's issues center around impulse control. He doesn't...maybe he can't (at times) think of what a dangerous consequence some of his actions may cause. Yesterday he heard us talking about a little girl with PWS that was in the hospital because of ingesting something she shouldn't have and she was very sick. I think it scared him and he went into confession mode and brought us an empty bottle of medicine. We lock up medicine and a few weeks ago I went through the lock box and threw away expired medicine and medicine we no longer use. I put it quite a ways in the garbage with stuff on top but I think that is where he must have gotten it. His story kept changing. We tore his room apart looking for the pills and he ended up bringing most of them to us that he had in a baggy but we still called poison control. Fortunately it wasn't a dangerous med but one for reflux.

Last night things spiraled into a really horrible meltdown. He feels guilt of some sort after the fact. Not sure if it guilt that he did it or that he got caught.

If anyone out there might be thinking "gosh they do not watch their child very well". Literally except when he is asleep (and we have a hall alarm) one of us has our eyes on him....except when he is using the restroom but we know when he comes and goes. Even though my son seems so loud...always talking, when he wants to be quiet and sneaky he will find a way! 

After the storm of an event like this his behavior gets bad with continuous meltdowns. He is normally a very calm happy go lucky young man. He is truly the funniest person I have ever met. (and let me tell hubby is FUNNY!) Today I stood eye to eye with him (he's almost as tall as I am) and he looked so full of rage and anger that it scared me. (BTW it's best to give someone with PWS in a meltdown some physical space and time to cool down) I'm looking forward to things calming down around here. I've already done the mama guilt thing so I do not need anymore as I know that I do my very best.....but sometimes I lose my super-hero cape and things slide past me. Us special needs mamas (and daddies and siblings) have a lot to deal with, a lot. We learn from our mistakes and move on....


Found these cute photos on my camera that my bug and critter luvin' girl took

This week will be a busy one. Last week Z~girl started a theater camp and is LOVING it! They learned some skits and will be performing them at libraries around our county. It has been so good for her. Despite the fact that she is a introvert like I am she LOVES to be on stage. When she was much younger she was in several plays and loves playing her fiddle/violin for an audience. I cannot wait to see the performance.

She is in the middle of an online writing class ( and A~man is finishing up an online reading program. ( We will be keeping plenty busy with that so we may only have extra time for doing some reading and some educational songs for A~man. Next weekend we will be traveling for a day trip to go to our first PWS conference and I am very excited to meet some old friends and some new ones too that share our journey!

Saturday, June 14, 2014

Daddy Memories

On my tenth birthday my parents took me to Canada. 

Today I went digging through my basement looking for photos to discover that my basement is VERY damp (no AC right now) and the photographs felt very damp and were starting to curl. I LOVE my photos even though I haven't done much with them so after I finish up editing my niece's wedding photos that I took last month...I will be scanning all of my childhood photos (some are not salvable) on my computer in the next couple of months and also on some type of remote storage device.

One thing I was noticing in so many pictures is that my dad often had a camera around his neck or even more often wasn't in the photos because he was taking most of the pictures. I had never thought about where I got my love of taking pictures till last month when my nephew (an adult close to my age) made some comments. He brought up how grandpa always had a camera and it is a family joke that grandpa liked to take photos of his family eating. WHY? I could speculate. I had older parents that grew up during the Depression and although I know my moms family was well off my dad's family was living in Kansas during the Dust Bowl. I remember family teasing my dad that he had thistles to eat as a child. Not sure how true that was but that could possible be a reason. He grew up VERY poor. Dirt poor. Another possibility is that the family was normally together as a group when they were eating so it was a good opportunity to get a picture of many. Of course so many of the photos had us shoveling it in. hahaha! For what its worth I got a bunch of eating pictures at the wedding in his honor. ;)

I can't describe how much I miss my dad and I have so many regrets. In my teen years I was not a wild teen and my parents were pretty strict but any of my "monthly angst" was targeted at my father. He was an early morning happy person...even at a young age I was never a morning person and only now can giggle at the things he said every  single morning....things like "Did you sleep with your eyes closed?" or " Are you up for all day?" I'm sure those comments were met with either "DAD!!!" or a cold stare.

Plus before kids and when they were wee he was in the beginning stages of alzheimers. I wasn't patient or kind at times. He did some strange things and asked the same thing over and over and over. (maybe my own father was preparing me for me parenting A~man?) He (and my mom) LOVED both of our children dearly. With my dad there was no difference that one grandchild was biological and one wasn't, he loved them. He loved all of his grandchildren so very much! He would try and push A~man in his stroller in a store though and would wander off. This would freak me out at the time because our son was attached to a lot of monitors etc and was very medically fragile. I would fuss. At the time I did not understand the disease at all but after the fact I do from a dear local friend of mine (here's her blog ) that took care of the kids when they were little. Her dear sweet husband had alzheimers and I was fortunate to get to know him a bit.

I have major guilt issues due to all of that as even though my dad was older he did so much with me as a child. He tossed the softball around with me, pitched the ball to me, and rode many miles of bike rides with me. I am sure I got spoiled as a child more than the others but he loved every single one of us even when we were not very lovable. He got me music lessons. He got me art lessons. He got me riding lessons. He knew my love (okay, obsession) with horses and even though I never got my own we often had a horse in our pasture for me to take care of and ride. One of our neighbors had a couple of horses that had not been taken care of very well before he got them and I was able to pour out my horse-girl love on them. YES, I was that crazy horse girl from the tween/teen novels. I lived horse. As a teen I was a clothes hound. I was the last of the kids and I'm sure as a child I got more stuff. Yes, when it came to shopping I was a spoiled teen. ( I did get a job early on though) He gave me so much when he grew up with absolutely nothing monetarily. (he did have a load of love from his own mom though)  I'm not sure about his father as he passed away before I was born and I have never heard much about him except that he was a quiet man of little words. He was a very good dad to us. Perfect? No. Perfection is from our heavenly father.

Guilt aside, I hope he is smiling down at me with pride. I was definitely "daddy's girl". I am thankful that from the start he taught me about my heavenly Father. (he was a minister before I came along) He gave his all to his children. Hopefully he knows how much I love and appreciate him. I look forward to seeing him again some day!


Okay, on a lighter note our homeschool testing is done for the year. That probably should be a whole "nuther" post itself so I will keep it brief. The fact that Z~girl has online tutoring in writing has made a difference in her test scores even though she is only part way through the writing course. I admit that I had taken an unschooling technique to writing with her...but she was in need of some mechanics of writing that was better coming from someone online than me! I still encourage her creative writing but I look forward in seeing the difference of what her writing looks like after his course. So, I will be posting a post-testing blog in a few days....stay tuned for the good the bad....and the not so good. ;)

Saturday, June 7, 2014

What are your plans this summer?

I do not know where this last year went but I'm dealing with the fact that by August I will have two teenagers. *gulp* A~man who will be 15 this fall is more than happy to be a teen and actually asked a girl at baseball to be his girlfriend today. (he had a different one last year, Lord help me, but it is all very innocent) This particular girl has liked him for years but he didn't realize it until I pointed it out.Yes, it may seem strange a mother pointing out to her son about a girl that likes him but it takes his mind off the fact that no, you cannot be boyfriend to the 20 year old barista from Starbucks. Last summer with his other friend that was a girl we met her at the movies and as a family we hung out with her family at their house.

Z~girl? She has some Peter-Pan type issues. She does NOT want anything to do with anything about teenhood. (is that a word? it is now!) Yet, she is highly responsible beyond her years, plays her violin without asking, does her chores and loves to help out in anyway she can. So...I really can't complain. So what if she has no interest in make-up or anything fru fru? She would rather read, care for and play with her many critters, play soccer and RUN. (running is her newest joy)

This next week we will be doing our annual state required homeschool testing for our Christian homeschool. We have always done the Woodcock-Johnson III Test of Achievement. I try and not fret about testing...yet I still do a bit at times. Testing A~man is truly just a formality as there is no test that can show how he measures up with anything. But he has come so far in his ability to sit there for hours, pay attention, and cooperate. The first year when he was 7? I thought I might have to pay the lady double. (joking but she was an amazingly patient tester)

I pretty much know how Z~girls testing will go. She is above grade level in all but math and writing. She is taking an awesome online writing course right now which will help. (I've been a bit unschooling with writing) Math? Math is the subject I worry with her and next year I need to find a homeschool math class for her. Math is not something I am good at teaching. I know how to do math and took it in college even but I am not good at explaining it.

After this week we will have a couple weeks of light schooling followed by taking July and part of August off! Z will be going to a theater camp that she is excited about! I'm still in the planning stages but one of the main things I want to do is camp. Here is a blog I did awhile back for about learning while camping-

One of my children's favorite things to do in the summer is go camping. Being relatively cheap, (we use a tent) it is something we can do even if we are not able to go on an expensive vacation. We have also been known to camp in our own backyard! While it is definitely a fun and relaxing activity there are also many opportunities for learning while sleeping close to nature.

It's fun to have a scavenger hunt while hiking or even bring along an animal track identification guide in case you find animal prints. This is something that both younger and older children could do together. Bring a magnifying glass to inspect the smallest of insects! Having your child assist in the meal can also be fun as typically camping recipes are very easy to put together. We always bring along paper plates and napkins for easy clean up.

Art activities are fun to do outside even if they can be messy. When my daughter was much younger she loved to paint on the sidewalks with mud. Clean up with that one was easy with the spray of a hose. (or a dip in the lake!) Have you ever heard of Land Art? This is something I learned about years ago from my brother in law. You use items from nature such as rocks, leaves,flowers...really anything, and combine them to make something beautiful. 

I cannot forget literature. Whether reading a book to get ready for camping or finding a nice quiet place in nature to relax and enjoy a good book, there are many choices.

For the younger children- 

Curious George Goes Camping by Margret & H.A. Rey A Camping Spree with Mr. Magee by Chris VanDusen 
Amelia Bedelia Goes Camping by Peggy Parish 
Henry and Mudge and the Starry Night by Cynthia Rylant 
The Camping Trip That Changed America by Barb Rosenstock

Here are a couple good chapter books about camping-

A Week in the Woods by Andrew Clements
The Boxcar Children: The Camp-Out Mystery by Gertrude Chandler Warner

Here are some summer related chapter books with homeschool children as the main characters

Adventures in the Neighborhood Woods Series by Jesse Honn
The Adventues of Lil' Wolf, Twinkie, Toes, and Flower Girl in the Homeschool Forest by Jacqueline R. Campos
Alabama Moon by Watt Key
Cross-Country Treasure Hunt (And the Mystery That Followed) by Gwen Lepkowski

Brian's Hunt by Gary Paulsen
Summer at Steller's Creek by Anne Cernyar
The Howling Vowels by Leslie Schultz
Wright On Time Book Series by Lisa M. Cottrell-Bentleyand one of my favorites- Homeschool on a Battlefield by Jennifer Lynn

What type of fun learning activities does your family enjoy while out camping?