Skip to main content

eSpecially Parents August Edition: Meg's Story

If you don't like something, change it. If you can't change it, change your attitude. --Maya Angelou

Who says it better than Maya Angelou?  I mean reallly, geesh, she is awesome.

This post is about change.  It's funny, because I have always been a huge fan of change.  You know, mixing things up, trying something new, meeting new people, travelling to new places, etc.  All these things, every single one of them is like a living nightmare for my Autistic son.  So nowadays change is something we plan, not something that happens to us. 

Changes in relationships are unpredictable and therefore a dangerous area for our family.  Since we live so far from my family, their support is by necessity, verbal (phone calls), so from a practical point of view it has made little difference.  As for friends, we have recently moved to a new area of the country and are in the initial stages of friendship with lots of lovely people who know all about our challenges, which makes things so much easier for us. 

I would have to say that the lack of reaction from family members when we shared our son's diagnosis was really the most shocking thing for us.  I don't know that any of my family members or my husband's family members actually understand what our son's Autism means to us, the way we live, the amount of stress and planning involved in even the smallest change.  I would have appreciated some recognition of the change to our lives.  I suppose they thought that making a big deal of it wouldn't help things, and they are probably right. 

I'm not sure what I'm trying to say.  I certainly haven't had the experience of losing the support of friends or family members due to my son's diagnosis because we had no support network to begin with.  It sometimes seems like we are our own floating island.  When the seas are calm, life can be really fantastic.  When the seas are rough, we hold tight to each other and wait it out.  We are our own support system and it works for us because it has to.  We don't have a choice.  We have little family nearby and we have lovely, but new friendships.  We can't change our situation, but we can endeavour to keep a positive attitude and appreciate one another.

Comments

Popular posts from this blog

How I Make Being a Mom and Volunteer Work at this Group Home

  In September, Ben celebrated three years living in a group home in Charlotte, North Carolina, with five other men. Ben lives 20 minutes from our house, and we see him several times a week for doctor's appointments, to drop off supplies, for group home events and sometimes because I just miss him. Ben occassionally sleeps over, and he often spends a weekend day hanging out on his favorite couch, watching videos at our house. This Easterseals PORT Health home is Ben's second placement. The first placement through another agency didn't work out, and he left after six months . We were wary of trying a new place, but it's worked out well. My husband, Ryan, and I have developed a partnership with ESPH. Over time, we've built mutual respect and trust with the residents and staff.  Here's what's worked for us: 1. Get involved with the group home. Ben lives with five other men in a six-bedroom house in Charlotte. On move-in day, Steven, one of the residents, made ...

Gadgets & Gizmos - Part 6: Landeez Chair

We spent last week at the beach near Atlantic Beach in North Carolina. At Fort Macon Park , they have a special chair for people like Ben who may need extra help moving in the sand and water. The chair is made by Landeez . We were amazed by this chair. It did travel over the sand and in small amounts of water with ease. We bought an inexpensive strap to go around Ben's waist so he would not fall out.  I thought that Ben could go farther in the water sitting in the chair, but it does eventually float...away if in too deep of water. Ben got tired of sitting in it and wiggled his way under the strap. For the most part, it is a great invention and it made it easier for us to keep Ben safe on the beach. If he had been interested in a long walk on the beach, this would have worked great for him.

Parenting an Adult Child with Disabilities: From Group Home Placement to Discharge

  Last August, we moved Ben into an alternative family living (AFL) placement, about 90 minutes from our home in Charlotte. It was a three-bedroom house and Ben was given the largest bedroom with its own bathroom.  A typical AFL in North Carolina operates like this: a person with disabilities, the client, moves in with another family, couple or an individual. The client lives in the family’s home and the family receives payment in return for housing, feeding and caring for the client.  Ben’s AFL was unusual: A couple with extensive caregiving experience wanted to run a three-bed group home but needed to apply for the license through the state. They were willing to take Ben as the first resident in a house, separate from the one they lived in. The plan, according to the couple, was to get approval for the group home within a couple of months.  We ordered Ben a double bed, headboard, 54-inch television, new sheets, towels and blankets. Friends helped us move him in....