Sunday, March 22, 2015

Time to Breathe

When Ayden Jane was little, I mean just diagnosed through preschool years, I felt like the term special needs described her at times. I could also interchange delayed, or struggles with sensory processing, or speech apraxic, or .... all sorts of other terms I only ever learned after having her. I felt like she was hanging on to 'typical' in some ways but in a lot of ways was still stretching to get there. It felt like one bump in the road would put us forever unable to claw our way back into the 'typical' ranks.

Honestly, it was a really stressful place to live. You know, not really special needs so she didn't fit in that camp, but not quite typical either. It was exhausting and a time where siblings and wonderful family friends filled the gaps of having a typical crew of friends to run with. Add to that the medical complications of Prader-Willi Syndrome and the fact that we were on a limb with the way we were feeding her. Living outside the traditional medical approach to treating PWS. Sometimes I wonder how we managed that stress!

I also recognize that a lot of awesome people we have met because of PWS are in these stages now. Bless you. I hope that Ayden Jane and the other older kids like her offer you hope. I know it is hard to trust the hope of the 'new generation' of PWS because it is, well, new. I recognize that there are so many examples of PWS gone bad.... That it is a risk to believe your child's life will be the exception to the old literature. It is a risk that places your heart exposed to dashed dreams.

I have been told this past year on more than one occasion that although Ayden Jane is doing great now, it's only a matter of time. These things have come from well meaning parents and 'experts' who truly believe that all the challenges of PWS are unavoidable. I have had older parents say that as she goes up in years in school she will no longer be able to handle being in the typical classroom. I have been told that the gap between Ayden Jane and the other kids socially will become too wide. And, of course, I have been told that she will become constantly hungry and not be able to manage it on her on.

Thankfully, I have a small group of parents who believe as I do - that no one really knows what this new generation of kids is capable of. That their limits are not yet set.

And of course, Dr. Miller is the leader of the band when it comes to high expectations for our kids. She has already informed me she expects to be invited to Ayden Jane's college graduation and wedding.

Wow, that was not really the original intent of this post! Funny how writing sometimes takes turns of it's own.

Mostly, I just wanted to say that currently, at age 7 and in first grade, Ayden Jane is the most 'typical' she has ever been. Academics are on track. Her processing speed is finally seamless. Her energy is great. Her blood sugars are stable and the need for constant food monitoring gone. She has and is making friends with ease. Her behavior is, well, at least typical if not better than kids her age. She does not struggle with anxiety. As for 'pws hunger?" I have heard her say she is full more in the past few weeks than ever before. She is way more concerned with playing and being a kid than wasting time being preoccupied with food. She is advocating for herself when she is at friends homes and making great food choices.

I am finally - 7 years down this path - not living every moment in panic that today is the day it all falls apart. My heart does not cringe when Ayden Jane talks about what college she wants to attend. I don't worry about her when she leaves the house without me. I no longer live with the stress that I am racing against the developmental clock and need to do more with her. More PT, more OT, more exercise, more ST, learn more about food, study more and find supplements, understand more.

It's finally time to breathe. And to all the nay sayers... I know your intentions are good, but Ayden Jane and I choose to believe that although pws will always be a part of her life, it will not slow her down.


  1. My son has pws. It is a great help for me to read your blog every night. Thanks a lot.

  2. I love reading your blog and hearing about all of Ayden Jane's successes gives me so much hope. Thank you for sharing your story with all of us.