Click Here to Read Brady's Story
Sunday, January 25, 2015
To all the educators of siblings to special needs children...


So I was just reading an interesting article, and it made me think about all those typical siblings out there. How many typical kids in your school or in your classroom, have a sibling who has special needs? Are the teachers aware of these special circumstances? Are the students aware?
Our oldest son is no longer in public school, as he is now homeschooled. Because of circumstances beyond our control, homeschooling turned out to be the most suitable option; however, this is not an option for many. After reading this article, I really bagan to think about how difficult it must be for typical siblings in school, when there is so much going on behind the scenes. 
When my son told his teacher that his little brother ripped up or ate his homework, he wasn't kidding. Yes, it's a child's responsibility to keep up with their homework, but most kids don't encounter the tenacious, sometimes destructive behaviors,or  flash-like super human speed, that a special needs child can sometimes display. 
How often do children get to tell their teachers that their little brother has kept them up for nearly 30 straight hours, and that's why they can't concentrate or keep falling asleep in class? This used to be a common occurrence in our lives. 
What about those times when little brother is hospitalized or even in a coma, but big brother has to go to school anyway? There are just times that mom and dad have to pick and choose which days are most important for big brother to miss. But just because big brother is present and accounted for at school, it doesn't really mean that he is there. It breaks my heart to think about how hard it must have been all those times for him to concentrate, knowing what was going on with his family. 
Let's talk about those times when you board a plane and fly to a different state to get medical care for little brother...is it fair to expect big brother to stay 1300 miles back home? How can you teach family unity if you don't include the whole family in every aspect of life? Or how about those times that big brother is late because little brother needed changing at the last minute, had a medical emergency, or had a tantrum and wouldn't get into the car? Yeah it's a lot to think about and you become the queen of prioritizing when it comes to balancing the life of a typical child on one side of the scale and the life of a child with special needs on the other.
Next, how about the enormous amount of time that it takes to care for little brother? Oftentimes, the typical sibling learns to fend for himself. It's not that he/she is loved any less but they often get tired of waiting for their turn, so they just do for themselves. Sometimes, no matter how hard, we as parents try, we just can't control everything. There are days that I wish I could clone myself.
Don't  misunderstand what I am saying. I love our life and I love our family. After 12yrs, this is totally normal to us...we just think everyone else's lives are the abnormal ones 😜. But there comes a time when siblings just need/deserve  a little extra attention. There will be days when school is harder for them, than it is for most of their friends in their class.
 Will you be the teacher who knows and understands your students needs or will you be the one to ignore that child in need? An extra hug, a pat on the back, or simply understanding the need and accommodating for that day, just may make a difference in that child's life. 
Teachers are educated in many areas but this seems to be an area that is severely lacking in many cases. 
Again, I'm not complaining. I have two amazing boys. My oldest son loves his little brother, despite some of his quirky ways, lol. He has grown in so many ways and I know that this experience has shaped him into a more compassionate well-rounded individual. In a sense, I have two uniquely, special boys, whom I love dearly. I'm just saying that sometimes we can't control life and we have to accommodate for that, based on one's unique situation. The life of a sibling to a special needs child,comes with unique challenges, as well as, unique joys. It's difficult for those who haven't experienced it, to fully understand...but just make an effort. You could change a child's life.
Anyway, stepping down off my soap box and handing the mic off to someone. Time for this old lady to get some sleep! 

posted by angelwings @ 3:47 AM
   0 comments
Sunday, January 11, 2015




posted by angelwings @ 12:58 AM
   0 comments
I CAN (Cure Angelman's Now)!
So my fiend Lisa Kness contacted me with this awesome idea for raising awareness and funds for Angelman Syndrome. She is taking part in a race and has decided that their theme will be "I CAN (Cure Angelman's Now)". The hope is that this turn into a nationwide event for International Angelman Syndrome Day (IAD) on Feb 15th. She has also decided to donate on behalf of her very special little friend Brady.
We met Mrs. Lisa just after our son Brady was diagnosed with Angelman Syndrome...we were blessed to have her as his Speech Therapist. We were reeling from the life changing news and she became a fresh breath if sir for us. She fought a difficult battle of teaching Brady how to communicate, as well as teaching me how to help him with communication at home.  During the time that she worked with us, Brady was dealing with terrible seizures, that really knocked him back every time we learned something new; however, she never gave up on Brady. 
She believed in him and pushed him to do what she always knew he could. We learned a lot about communication from Mrs. Lisa but most importantly, she taught us to never give up hope and to always believe in our boy....never to sell him short. We became close friends through the years and even though she is in Alaska, while I'm in Alabama, she is one of our biggest supports and dearest friends. 

Angelman Syndrome (often abbreviated AS) is a severe neurological disorder characterized by profound developmental delays, problems with motor coordination (ataxia) and balance, and epilepsy. Individuals with AS do not develop functional speech. The seizure disorder in individuals with Angelman Syndrome can be difficult to treat. Feeding disorders in infancy are common, and some persist throughout childhood. Sleeping difficulties are commonly noted in individuals with Angelman Syndrome. AS affects all races and both genders equally.

Individuals with Angelman Syndrome tend to have a happy demeanor, characterized by frequent laughing, smiling and excitability. Many individuals with Angelman Syndrome are attracted to water and take great pleasure in activities like swimming and bathing. 

People living with AS require life-long care, intense therapies to help develop functional skills and improve their quality of life, and close medical supervision often involving multiple medical interventions. Angelman Syndrome may be misdiagnosed since other syndromes have similar characteristics. 

Angelman Syndrome is a genetic-based disorder resulting from the loss of function of the Ube3a gene in the brain. Loss of Ube3a prevents neurons from functioning correctly, leading to deficits in learning and memory. Importantly, loss of UBE3A does not appear to affect neuronal development, indicating that neurons could function normally if UBE3A function is restored. This syndrome HAS been cured in a mouse model and we have potential treatments waiting to go to clinical trials...we just need funding to get us there. 

To learn more about  Angelman Syndrome or to donate, please go to Foundation for Angelman Syndrome (F.A.S.T.) Therapeutics at www.CureAngelman.org We support these guys because they are nonprofit and 100% of funds go straight to research for those with Angelman Syndrome. 

Also, to learn more about Mr. Brady, you can go to www.sweetsweetangels.blogspot.com 

Thank you all for your support! #cureangelman 

posted by angelwings @ 12:55 AM
   1 comments


What is Angelman Syndrome?

                 

About Brady

Read Brady's Story Here   

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

See my complete profile

Home      Post        Edit

Hello world!!!! It's been way too long since we p...
   Okay, so I often hear the phrase "I hate Angelman...
  To all the educators of siblings to special needs ...
 
  I CAN (Cure Angelman's Now)!
  Eegs before and after mino.
  Minocycline results are out!
  Brady riding the jetski
  Chatting in the car
  Brady chatting in bed
 
Archives
January 2005
  February 2005
  April 2005
  May 2005
  June 2005
  July 2005
  August 2005
  September 2005
  October 2005
  November 2005
  December 2005
  January 2006
  February 2006
  March 2006
  April 2006
  May 2006
  June 2006
  July 2006
  August 2006
  September 2006
  October 2006
  November 2006
  December 2006
  January 2007
  February 2007
  March 2007
  April 2007
  May 2007
  June 2007
  July 2007
  August 2007
  September 2007
  October 2007
  November 2007
  December 2007
  January 2008
  February 2008
  March 2008
  April 2008
  May 2008
  June 2008
  July 2008
  August 2008
  September 2008
  October 2008
  November 2008
  December 2008
  January 2009
  February 2009
  March 2009
  April 2009
  May 2009
  June 2009
  July 2009
  December 2009
  January 2010
  February 2010
  March 2010
  April 2010
  May 2010
  July 2010
  August 2010
  July 2011
  August 2011
  October 2011
  November 2011
  December 2011
  January 2012
  February 2012
  March 2012
  April 2012
  October 2012
  December 2012
  August 2013
  February 2014
  June 2014
  July 2014
  December 2014
  January 2015
  March 2015
  May 2016
 
Interactive Seizure Diary

This downloadable Interactive Seizure Diary helps you track your seizure activity and medication routine. You can also record doctor appointments and notes about how you are feeling. Before a doctor appointment, print the information and share it with your physician.

Angelman Forum & Chat

The AS Forum was created in April 2005 and provides an easy way for family members and carers of people with Angelman Syndrome (AS) to exchange information with each other.

Cure Angelman Syndrome

The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.

Angelman Links
Angelman Blogs
All About Epilepsy