Wednesday 19 December 2012

This Christmas, We are Thankful for Tyze

This Christmas, our family is grateful for Tyze Personal Networks.  For those new to my blog, I am the mother of a young man with severe disabilities who is adored by everyone in our family.  I'm also the daughter of an almost 91 year old who has never listened when folks told her she was old.  

This year is my son Nicholas' second Christmas since moving out into his 'own' place.  Nick's care staff are part of our closest circle of supportive friends and we are in constant touch with them about everything from Nick's Christmas list to arranging transportation to yesterday's Ottawa Senators hockey practice (the players may be locked out in a labour dispute, but that doesn't stop the local practices).

I've written before about how we use Tyze to coordinate Nick's complex medical care, but today I want to tell you about how we use this specialized online social media tool this Christmas!  Tyze is completely secure and private - it's by invitation only and password protected.  There's a calendar where we enter Nick's medical appointments as well as his outings.  On the 'Contribute' page, I posted Nicholas' Christmas wish list.  All the members of his personal support network could then 'claim a present' so that Nick wouldn't receive duplications.  Events, tasks and goals are all ordered, with reminders automatically sent to personal email addresses of those concerned with a particular activity. 

This week, I picked up a brand new communication system for Nick from the speech therapist.  As we all learn this new system that will unlock Nick's language, we'll be posting often in the 'goals' section. 

Tyze is where we keep seizure records, doctors' orders, blood work results and care plans.  But it's also where we organize a family Christmas that includes our complicated, beloved young man.

This is a photo of my Mum last year on her Christmas Eve birthday, turning 90!  This year, she may not feel up to dressing quite so elegantly.  Mum has been in the hospital with the dreaded superbug, C-Difficile and she's still recovering.  My sister Karen and I tag-team with her care and we coordinate some paid helpers as well.  We have another Tyze site for Mum's care and we use that to communicate with her staff, especially with respect to her symptoms and difficult medication regimes.  It's always tricky to decide if, together, we think that Mum needs more or less paid help to be with her and Tyze is a great tool to help in that decision-making process.

Christmas can be a stressful time of year, but as caregivers know, it's also a time to celebrate what we do every day of the year:  express the love we feel for our families.

Merry Christmas and Happy Hannukah to all my friends in the "Caregivers' Living Room".


BLOOM - Parenting Kids With Disabilities said...

Wonderful to see Nick and your mom and your tree! What is the new communication system? Would love to hear more (since we've never been successful in this area).

I am glad you have your mom home for Christmas! Happy holidays!

Gillian Licari said...

Donna, I regularly follow your blog. You are an admirable woman. Blessings to you, Jim, Nick and Natalie.

Anonymous said...

Merry Christmas to you! Stopped by from Ellen's Blog Hop. Tyze sounds like a useful tool!

The Caregivers' Living Room said...

Thank you for your feedback, everyone!

Louise, Nick's new communication system is low tech (a book of word scans organized into columns that his helpers read aloud.) Nick then says 'yeah' for the word he wishes to say. It's slow, but really necessary to allow Nicholas to speak thoughts that we could never guess.

Gillian, Thank you for your kind words!

Adrienne, Thank you for stopping by my blog!

Merry Christmas too all.

Luke Sanford said...

HI Donna
We are also interested in Nicks new communication tool. Our son Luke has been using a modified version of pecs for the last few years. Luke has a communication binder with symbols and pictures but communication has remained an ongoing challenge.
Luke's uncle has created a website for Luke: if you would like to know a bit more about him. I would love for you and Nick to LIKE Luke's FB page. That would be awesome. Perhaps the boys can be FB friends.
I also want you to know how much I enjoy and look forward to your blogs. Thank you for sharing.
I hope this Christmas season brings peace, joy and love to you and your family.
Merry Christmas