Wednesday, May 23, 2012


Lately I have been thinking about the many ways that PWS effects Kayla, Noah and Mckenna.  A few things have triggered this like telling Mckenna stories of what she was like at AJ's age, Kayla shadowing Dr. Miller in Florida and Noah being amazing with a friends special needs son.

It is really true that PWS not only affects Ayden Jane, but our whole family.  There are things I hate about how PWS has effected our family.  Like the stress of finances, schedules, pushing AJ to work hard, constant monitoring and worry about things that never even happen - I could name lots more, but you get the picture.  Growing up in a stressful house is not something I wanted any of my kids to do and I THINK we do a pretty good job of not letting the stress get to high.  We laugh a LOT.  My kids honestly enjoy each other and we have fun as a family.  Not a given with the age span, special needs and crazy schedules.

PWS has ingrained a sort of you can do anything you put your mind to attitude across the board.  We approach Ayden Jane with the attitude that she can and will do great things in this world.  What those will be we have no idea, but we strive to help her do as much as she can and don't ever assume that her missing genes will determine the heights she will reach.  Obviously, there will be strengths and weaknesses that will guide her way but we have come to attack everything she comes up against with a 'how should we get around/through this one' in stead of 'will we...'

Individually, being a sibling of a special needs child has effected each of them a bit differently.  (I know, shocker)  Kayla has her eye on medical research.  Not sure what area... or what context yet, but she had a great week shadowing Dr. Miller and some others and loves the clinical side of the research.  She is naturally accepting of special and medical needs and wants to solve things...

Noah is the protector.  He has developed a unique bond with Ayden Jane.  He is totally the big brother. He picks on her and messes with her but somehow she takes it totally as fun with Noah.  I just love to listen to it.  He can also get her to do and say crazy things and just, well, relax.  That sure is valuable in the life of a PWS child!  The interesting thing is that although he talks tough...  He is a softee for special needs kids in general now.   He has a couple of friends with siblings that struggle with autism.  He has the same ability to make them relax and be comfortable and happy around him.

Mckenna, there are so many ways I see 'special needs sibling' in Mckenna.  Of course, partially because she has totally grown up with Ayden Jane and the others were much older when AJ was born.  There is an incredible, strong will within Mckenna.  It comes out as a gentle, encouraging spirit when she is with AJ though.  Gently encouraging Ayden Jane to do everything that the other kids can do.  Just say that AJ won't be able to _________ and Mckenna will already start a plan in action to prove you wrong.  No just is not something Mckenna hears.

Mckenna doesn't really know that she is so strong willed and stubborn, but she has enjoyed listening to Kayla talk about what she was like at Ayden Jane's age.  She retells stories of Mckenna flat out taking Dad on and refusing to cave.  She tells Mckenna how she and Noah cowered, just hoping Mckenna would give in as they just didn't want to see how such a stand off would end!

In the end, I think all the kids have benefited from their roles as special needs sibling.  It has rounded each of them out and taught them that not everyone is equipped the same, but everyone has the same potential to be awesome.  They all see the person, not the disability.  They all have a unique gift to offer those with special needs.

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