The Future

I’m a planner by nature, I like to know what’s going to happen in the long-term so I can be ready for when it comes. I usually figure out the future rhythm of our family in timeframes of six months or more in advance – kids activities, summer vacations, Mom & Dad getaways, etc.  In fact I was getting anxious by mid-March this year when the school board hadn’t yet released which date would be the first day of school in September!

Having a child with special needs really puts a cramp on the planning lifestyle, especially as a medically fragile infant.  Planning at that time looks more like ‘have a hospital bag pre-packed’ for the next time he gets a cold that turns into pneumonia and requires a few nights stay for him to stabilize.

In those early days, we really had to learn to take things one day at a time, and learned to NOT look forward to the future, because it was so unknown.

How much would he develop? How many of his medical issues would remain? What was the next illness that would knock him down?  It was too much to cope with, so we didn’t really plan or look too much to the future unless we had to travel out-of-province for medical appointments.

Fast forward to ‘life after a tracheostomy’ and suddenly the future starts to look a little brighter.  We can travel somewhere without having to pre-order boxes and boxes of medical supplies to take with us or have delivered in advance.  We don’t need to find an oxygen company to rent tanks or a concentrator from or find a hotel that will allow these in their hotel rooms.  We can start thinking ahead to *gulp* high school and all the new experiences there.  Did I say think?  I meant worry like crazy!  “He’s so small he’ll get eaten alive in high school!” and “Will he make any friends?” become the new thoughts that occupy our minds and hearts.

Now my son is in grade 11.  The new panic in my mind for the past year has been “What happens after grade 12???”  I know someone whose daughter is 18 years old and remains medically fragile with a tracheostomy and ventilator at night, and I saw a Facebook post where the mother said “If I hear the word ‘transition’ one more time!!!”  And I know that will become our future soon.  Transition out of high school.  Transition to becoming an adult… well let’s say transition to adult programs and services…  Scary and unknown, all of it.  Time for some planning!

A concept I’ve been aware of for many years and knew I eventually wanted to build for my son is a Personal Support Network.  This is a support group of people who want to help plan for and contribute to the future of the person at the center of the network.  I love the idea of this because it’s difficult for my husband and I to be the only ones in charge of his future, and to remain objective when we’re caring for him every day.  Most often, these networks are created in the case where the parents are aging and plans need to be in place for when they are no longer around.  NO WAY, that’s too late!  I want this network to grow WITH my son, not be something we do in our later years because we HAVE to, or worse yet, leave the responsibility of planning my son’s future squarely on his younger sister.

Our first goal through this network will be for him to experience his community more fully.  Cara Milne is owner of M-Powered Planning, and teaches that community is when you are noticed, known and missed.  For example, if you start going to your local coffee shop every Saturday morning with a few people, you would begin to recognize the staff of the shop and they would recognize you.  After a few weeks you may begin to develop a relationship with the staff where they know what you order every time or maybe you chat about the weather.  If you don’t show up one Saturday, it is likely that you will be missed by the staff and they may wonder ‘Is everything ok with him/her?”

Being ‘missed’ reminds me of a lady I used to work with, and her husband was a city bus driver. He would talk about a person with disabilities that would catch the bus every morning to get to work.  Some days the person would run late, and the bus driver would wait, or slow down and stop if he came out running a few minutes behind.  The bus driver would be concerned if the person didn’t catch the bus at all, wondering where he was.  What a feeling it must be, to be known, noticed, and missed in our culture of anonymity! I love this story and connection these two had, and it’s exactly what I want my son to have.

So now as my 16 year old son continues to grow and mature, my planning (worrying) is further and further ahead to the future.  Where will he work? How he will get around?  Could he really ever take the bus by himself?  Where will he live when he’s ready to move out? How will he spend his days? Will he have friends to hang out with?  How much support will he need from us and others?

We’re only just beginning to plan out this network, but I’m positive it will help us support my son to become the person he wants to be now and in the future, at home and in his community.

Thanks for listening.

Melanie