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:http://www.facebook.com/ChaseCommunityGiving
STEP TWO: Vote for FASThttps://fb.chasegiving.com/charity/view/ein/26-3160079/ref/index
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! 

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

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 http://www.overthebigmoon.com/

First days of summer vacation

Day ONE::

Chance is off school now! For the next 3 months I need to keep him busy 24/7. Today we didnt do anything special I'm sure he thinks its the weekend he spent most of the day watching movies in his room. So I've been scouring pinterest for tons of ideas, most of them messy, so that means lots of baths around here.

Isabella is still almost walking , Chance is almost walking and Daniella is always looking for opportunities of mischief. In fact Daniella sprained her ankle 3 days ago pretending to be a dog around the house!

Maybe I will be able to have some big project fun with the kids.

But I've made it my goal to just get through the day. Yeah big goals for summer 2012.

Day TWO::

We spent today at the BEACH! I should clarify before we get too far, my 3yr old Daniella is convinced our boxes of sand are the beach :) Easy to get there ... just outside the front door!! Now my 7yr old with his sensory issues doesnt really play in the beach, mostly because he will eat it, but Today I ventured to keep them busy first we had an all out Dance Party in the living room after breakfast throwing around all our big bouncy balls, but then Chance shortly got annoyed -- by my Dancing I'm sure! So we went outside for a little gardening and beach time!!! I figured I'd give him just enough to feel it on his hands but not enough to just chow down on chunks of sand... and it worked!! Daniella made sandcastles and Chance played in the sand on his wheelchair tray!! Now its bath time then lunch then movies until Speech Therapy... I can handle days like this NO PROBLEM!!! :D

My life is a Jason Mraz concert

This morning I've spent it listening to Jason Mraz. Love him! His music is so happy even when its not always about the greatest things in life. He has a way of lifting my spirit. My happy chaos life is every week some kind of roller coaster. Today is no exception. C had a seizure this morning then of course he was super crabby all morning (understandably so). After a nice bath he seems to be better. D has been off and on sick but she seems better I think its mostly the time change and weather changing. I'm still trying our homeschool preschool a little bit everyday. C is on spring break so its a little harder to fit it all in. Plus I am so excited my mother in law is coming over in 2 weeks to spend 3 months with us. She live in the UK currently so we havent seen her in years. It will be so nice to have the kids nana living with us. Plus she will be able to babysit which will help me and J get back to one on one time <3. So as you see, the day is full of fun and not so fun stuff. But overall I smile. Life is always good in some way.

 jasonmraz.com

Best Song & Video!!

Adventures in homeschooling and balance

Wow, I havent posted in awhile, but my lil sprite fairy D, decided it would be a fun experiment to spill milk out of her mouth on to my laptop keyboard! So I had to wait a while before we could buy another. I have started to explore homeschooling, and we are trying to focus on a homeschool program based on learning the nature and the natural rhythms of the home. I really really like the program but I'm struggling to find the balance in using nature to learn and our need of electronics in our home. We are very mindful of the TV the kids do watch, but at the same time I feel guilty for them watching. I think my struggle comes from the fact that we have C with his complex physical needs I cant always be fully engaged with D all day long, in fact I cant always be in the same room with her and she is still at that age where her curiousity over comes her and all sense of 'this might not be a good idea' goes out the window. So I'm working on balance, making sure when I have the opportunity the TV is OFF the majority of the day and her and I are side by side engaged and mindful of everything we do. I do also struggle with the fact that C needs the cause and effect toys and videos to get his playing done, he cannot handle the sensory effects of paper, crayons, sand, grass, flowers, dirt, etc. So I have to find alternatives things he can put in his mouth or be engaged in visually but not hands on. We are so lucky to have the ipad and the many wonderful apps that can accompany us moving in to a more nature based, mindful lifestyle. It's not perfect, I find some days our lives revolve around staying inside and I'm busy with things the kids cant participate in, we will get there, I have several role models to help.

I've also chosen to homeschool because I've been learning how kids best learn, and how the schools seem to be very counter intuitive to this process. Hours of homework in Kindergarten and Elementary school, Expecting preschoolers and kinder kids to learn to read and do math; which I KNOW I didnt have to learn to do math until first grade, the only math I learned in kinder was to count to 100. I really cant see how putting so much pressure on young children is a good thing. I know if our homeschooling doesnt work out, I will be trying my hardest to get the girls in to a montessori program, I wish there was a waldorf school in town too but I know the montessori school program would suit Daniella really well. For now I will try my hardest at home to nuture a love of nature and the miracles of mother earth <3

Finally the end of my day! Oh wait my wonderful Angel Chance is wide awake whining.......... Chance is 6 yrs old and has Angelman Syndrome. (more info check out www.angelman.org or www.cureangelman.org) Since he is completely non verbal and whining I have to play detective quite often to figure out what's wrong. This is not fun, one of the worst parts of having a non-verbal child. I wish I could just read his mind. Please tell me what hurts, what's uncomfortable, whats annoying, anything. :( Ok pity parties over turns out he just doesnt want to sleep! Like most kids that age! It's so weird how one minute I feel like the average mom and the next I feel profoundly different, I suppose because my oldest child is profoundly different and at the same time very typical. He loves everything most 6 yr old boys love... monster trucks, super hero movies, sporting events, and annoying his younger sister! But of course he is different than most because he cant walk on his own YET, has no verbal words (still can get a point across), movement disorder with severe sensory dysfunction and the no good horrible seizures. His body does not work well for him, but his mind is beautiful... He finds joy in EVERYTHING. Sure he has his moments when he is upset or feels ill... even in those times if he is crying and whining, he can still crack a smile and give a giggle if something catches his attention. I love that about him. Angelman Syndrome has given us alot of challenges and definitely played a huge part in giving us the happy chaotic life I'm writing here about. Although Angelman Syndrome sucks, our community is fabulous. Most of us dont live near each other but because of the internet we are here for each other through it all. My AS family has become family. The love and support we get and give to each other is something I never would have guessed I'd have when I gave birth to my beautiful boy 6.5 yrs ago. But I am so glad I have it.

Wow, I cant believe how much I've typed so far! I got a lot to say I guess! I'll stop here but if you want to help my son please visit www.helpsavetheangels.com and vote in the vivant gives back contest through facebook. Vote for FAST and help them win $250K that will go to research. Our scientists have already cured AS in mice and your vote could help them discover how to treat AS in humans. Thanks so much :)