Wednesday, September 12, 2012

Help me cure Angelman Syndrome!

I am writing this blog today because of my first born son,Chance. He is the light of my life. He also has Angelman Syndrome. I've mentioned it before on this blog and this time you can help me. Angelman Syndrome is caused by a random deletion on Chance's 15th chromosome. It has caused him to be non-verbal, he cannot walk, he has seizures that are sometimes very severe. He also suffers from severe sensory dysfunction and somedays it makes it very hard for him to handle all the sensory input from the world which makes it hard to live a full life. Through all his struggles he remains happy and full of love.

The Foundation for Angelman Syndrome Therapeutics works hard every day to cure this syndrome. It has already been cured in a mouse model. Any money this foundation takes in goes straight out to research. Last year they won $250,000 in a charity contest and used every cent to fund a clinical trial that is currently in progress. This year they are in a contest through Chase bank. They need help to win, and it only takes a few clicks.

STEP ONE: "like" Chase Community Giving here:
We can do this together <3

If anyone would like to share this picture or links please go right ahead, This means so much to me! Thank you! 

Sunday, August 26, 2012

Back to school!

So my oldest is in bed all ready for the first day of school tomorrow. As a mom to a special needs kid, its a bittersweet day every year. I'm sure all parents feel this way no matter the abilities of their kids. But I am anxious.

 Anxious the teacher will understand his non-verbal communication, that everyone will treat him with the dignity and respect he deserves. That his neuro-typical peers see him as a peer and not just some kid who can't talk in a wheelchair. That the staff treat him as if he were their own. I have so many fears relating to him at school, especially considering all the stories you see in the news about teachers and school staff abusing non-verbal children. And my son has no way of telling me if something is wrong. It scares me to my core, to be honest.

But it is also amazing, it gives him the opportunity to be with his friends, to learn how to be a friend. He will get to experience new things, meet new people, learn new concepts. He is such a problem solver when its something that interests him, this I think will help him learn. It's hard to say what he actually absorbs from school since he cannot verbally express what he knows. But in my heart I feel he is learning along with his neuro-typical peers, just maybe not in the same way as them. This is a hard concept sometimes for the school to grasp that he is able to learn the same things as his general education peers. They have no way to test him and prove it because he cannot always control his fine and gross motor movements to show them.

But despite that I will continue to push for him to be fully included as much as he can handle due to his sensory overload. He loves school so much, his teacher, the routine, all the other kids. Last year his year ended so well and he has the same teacher and aides so I'm sure this year will just be a great continuation.

Time for me to sleep as its time for me to get back in to routine and hope for the best. <3

Monday, August 13, 2012

Making a change around here (blogwise)

So I have been really slacking on posting lately, this summer has gotten crazy! Our homeschooling summer has been up and down, one good part is the addition to the kid's cousin joining us a few days a week. Having that extra kid around has really pushed me to step up my game on planning and implementing things with the kids.

Dry Erase table with Dry Erase crayons
Homemade Cloud dough (8 parts flours 1 part Baby Oil) 

I've started using more communication methods with Chance although he still doesn't have much interest I'm at least making it available at every opportunity to model using it for him. We are now going to start trialing newer devices that may be more adaptable for him and grow with him. He starts school in a couple weeks and I'm looking forward to him to go back to be with his friends and teachers. He is not a fan of summers especially Texas summers which result in us staying at home almost the entire summer due to the extreme heat.

This is our PODD book I use in addition to our Conversa 
I've also stepped up on my painting. It is a passion of mine and I'm actually getting outside interests in it! Not just my lovely husband complimenting me! I've sold my first commissioned painting and have listed several new ones on Etsy and hope to get more interest soon!

I'm going to continue to blog as often as possible but not as many giveaway posts. I do have a couple reviews in the works and hope to have those out in the next week! I'm still new to the blogging stuff so I'm learning as I go and still figuring it all out.

Wednesday, July 25, 2012

I've started painting again!!!

 I've loved painting since I was in high school and took my first painting class. It's always been my me time, and now with the encouragement of my wonderful husband I've started to carve out time at the end of the night to paint! I've even started listing some on Etsy -- Here's  My store!!  I'm hoping to use any funds made to help purchase medical equipment for my son Chance, I'd like to get him a mount for his wheelchair to hold his ipad for school, and also a Kidwalk walker since insurance has denied us multiple times. I really hope this helps! Below are a few of my favorite paintings I've done. 

Monday, July 9, 2012

First week of trying summer school

Now that my 1st grader is on summer vacation he is making it very obvious he misses school. I know he loves his friends and teachers but the routine is also so important to him. So since I have been attempting (unsuccessfully) all year to get organized with homeschooling Daniella, I thought this would be a good opportunity to get going again.

So I got some more supplies, planned it all out for our first week. We did fourth of july theme activities and had some fun doing crafts and worksheets.

Chance was more interested in playing bubbles and watching movies but did participate a bit with his ipad apps that went along with our theme.

This next week I'm going to try and do a bit more than last week, I'm still trying to ease in to this routine but hopefully we will have some sort of routine by the time Chance goes back to school! My favorite site I found for printables

Wednesday, July 4, 2012

4th of July! Independence Day!

I love this holiday!! Such fun memories playing with friends, BBQ's, fireworks, carnivals, good times! Love all the new memories we will be making with our kids on this day. However this year will not be as exciting, temperatures are pretty high today and our little ones do not care for loud noises even if it creates beauty in the sky. I'll be doing some fun crafts with the kids indoors today, along with just relaxing and hopefully catch some fireworks in the sky from our front porch tonight. As the kids get older I hope to instill the same patriotic feelings I get on this holiday, to remember everything this country has been through to get to this point. How in no way are we a perfect nation but a pretty darn good one, I am so proud to call home! I'll leave you with my favorite patriotic song from my childhood and will hopefully post some blogs over the next few days of all the crafty fun we've been having!

Sunday, July 1, 2012

Babbabox Review - fun stuff for kids!

My husband found this BabbaBox company in one of his entrepenuer magazines awhile back. It looked perfect for Daniella since she has become so creative recently and I've been struggling with activities to help with our homeschool adventure. So we signed up and it took about 6 weeks before we got ours (depends on when you place your order- but it ships out the 3rd of the next month after your first order then every 3rd week of the month after that). It's a monthly subscription of $30 so it didn't seem to much considering how much it would cost to drive around and pick up the supplies and plan and find ideas. So this past week was pretty exciting when we finally got our box! Each box has a theme and this months theme was 'you are what you eat!'.

Everything is packaged so nice and neat and the instructions were easy and fun for my 3yr old.

All the supplies we needed to make the crafts were included I didnt need anything extra.
I also learned you can add a sibling pack for $10 a month to get double the crafting supplies!
 We had so much fun making our place mate, shopping list folder and reading our story next we will download our free app for the ipad (or android) that was included. There was also measuring cups so the kids can help with cooking and a pizza cutter for homemade pizzas. And a sample of all natural kids toothpaste! 

Daniella's placemat where she drew all her favorite foods and grouped them together.

reading our story

Our picture shopping list we made!

 I cant wait for next month and will post some videos of Daniella and I doing the crafts together!


Click the picture below for a 20% discount code on your first box if this looks like something you'd like to try with your kids! 

BabbaBox - Activity Box for Kids