All Points Between

I am so busy. Trying to work full time. Driving places: Boys and Girls Club, Dr. Appointments, shopping, and so many other inter-related things. Prepping for school in another district. Taking a breath for buying school clothes. Health issues. More health issues. Life and death issues. Cleaning the cat box.

Fireflies image ... from the Smithsonian Magazine

Every time I turn around, something to clean or fix or take care of.

I feel like a whole bunch of quarks (also known as hadrons), filling the gaps of all these thing, trying to keep things from breaking apart. I imagine this looking like fireflies, blinking on and off. If feels like oozy jam.

The last few weeks, Fridays took me by surprise. Already? Fridays never used to take me by surprise.

Taking a few hours to sit with James is restful. Petting the cat. Making a crock pot recipe. Watering the plants. Stealing a day on the river. Picking wild blackberries. This is how I slow down.

Death: The Difficult Script

How do you talk with someone with autism when someone close to you is dying?

People with autism typically deal better with routines, facts, and literal communication.

Getting up close with death, grief, and end of life on a daily basis tends to blow that all out of the water. Especially when the main care giver is impacted, like myself.

James picks up on emotions. He wants everyone to be happy. I think because he understand that and the other emotions are more complicated and bewildering.

We have already covered the basics of dying, as in it is a natural thing that tends to happen when people get old -- their bodies start to give out and shut down. They get slower, move less, sleep more, and can have bad periods and better periods. Once they die, they do not breathe. They do not open their eyes. They do not talk. They are not alive.

This is really hard to stay calm and discuss. But I need to. The tears and distress I show tend to bring out behaviours. Sometimes I cannot help being overwhelmed, but I stay as calm as I can and talk through it, letting James know this too is natural and part of life. Maybe if he sees me with these messier emotions and still being able to be me and keep on going, it will help him to do that too.

In the days to come, I will need to talk more with James, about what will be happening next, as well as what he will need to do. I will have to come up with some conversational scenarios. How do you script death? And keep it literal but not too socially unexpected?

Guess I will find out.

Autism Resources and Community

Reflection, and A List

My wish list for a special needs caregiver retreat:

1. Location needs: Nature and quiet space to reflect and destress. Meals prepared and no clean up.
2. Speaker about why we’ve come, acknowledgment of what it is to care for someone with special needs. Importance of self care.
3. Workshops for reflection, de-stressing, self care. Can include Yoga/stretching/pilates, nature walks, meal planning, routine building or core essentials for schedules/routines.
4. Workshops for sharing advice/tips/support. Can include therapy sessions, writing groups and information sharing. Gather interest and contact information to form groups for advocacy for services, financial and conservatorship planning, tips to lobby government, and IEP workshops.
5. More quiet time. Maybe group building activities.
6. Group discussions/presentations: Dealing with stress, fatigue, and isolation.
7. Teaming up: Share resources, contact information. Build lists to build your support group. Get scripted.
8. More quiet time for reflection and de-stressing. Examine what renews you.
9. Ending Speaker. Sum up. Encouragement.

Repeat at least once a year. This caring is for life.

This grew out of a couple recent rare weekends when I was able to get away from my regular routine and be in nature.

I realized again the importance of just relaxing and taking care of myself, for a change. 

It reminded me of the retreats I attended while growing up  --  how much better I felt while attending them and afterward, even though I was much younger and life was simpler.

It also reminded me how, even in the middle of break-ups, endings and some of the most un-fun adulting stuff ever, being able to attend a group function with others who "get it" provides so much emotional release and support.

I remember a "before" time, when dance, hikes, socializing, music, and making art made me feel like Me. How renewed engaging these activities can be for me. How much colour and worth they give to this thing called My Life.

This Retreat is a good idea.

What does your Retreat look like?