Stormy, Weathered

Over the past week we've had weather. Some places near us received over 10 inches of rain over 3 days. In an area that gets an average annual rainfall of about 36 inches a year, that's intense.

We had snow on the mountains near us ...

We had hail that looked and felt like snow...

We had amazing rain showers with double rainbows ....

And par for the course, James was sick. So he stayed home for two days. He went back to classes for  Friday, and now he has a three-day weekend.

The apartment looks like a teenaged boy has been hunkering down for a few days. Luckily respite has finally started and that helped him do his own laundry again. There will also be trash hauling, fridge purging, and open windows. Carpe storm lull.

Eureka Trip

For years, James has seen the signs on the freeways that show the miles to Eureka. "What is Eureka? "Where is Eureka?" "Can we go there in 30 minutes?"

Last weekend, after a very tough week, we hopped on 101 and found out, taking in the journey:

Deer mural in downtown Eureka

Two thousand + year-old tree, which fell finally in 2006

James in Eureka

Bears carved from a redwood tree, still attached to the trunk.

On Super Bowl Sunday, we drove through a giant redwood.

Pulling in the side mirrors ...

Inside the tree

Definitions Show Who We Are

This is a powerful piece that says so much of how I have been thinking and feeling, ever since I first thought my son, even before 18 months, might be autistic. It went through my head and heart when I was told by the preschool (after telling them why I was removing his name from their incoming students list after his diagnosis) that I should take time to grieve for the death of my dreams.

What makes us human? How do you define love? Why do we assume that happiness must be tied to "normal"?

I love my son and prefer to know the facts of his autism. Fears and prejudice do us all a big disservice if we give in to them. This cannot be stressed enough. I love my guy; that means ALL of him. It's hard and heartbreaking at times, but I love him. End of story.

More Of This

I wish this could be shared with special needs parents who need support and encouragement, and at staff trainings for all schools, preschool through high school.

My takeaways yesterday from the emergency IEP yesterday:

• The importance of parents of autistic kids having confidence, overall, with their relationship with their little ones, their kids, their teens. 
• It is amazing to me (again) how many trained professionals (their terms, I am not randomly labelling them) know so much less than I do about working with special needs kids, and mine in particular. This is not a put-down. It's a call for collaboration.
• The impact and results from people coming together to talk and listen to each other to solve a situation that is not working for both groups can be extremely profound.
• That parents being advocates sometimes needs to include being the one who teaches others and keeps the focus of a support group on track.
• NEVER underestimate the importance of telling others who your child is, especially if, like James, they lack the communication skills to do so.  

We had one of the best meetings so far with this district. I could feel the change taking place in the energy in the room. I felt it most acutely after telling the group this:

James is, basically, a happy guy. He's funny and smart. He wants others to be happy. He wants to be like his peers and he will reflect what is modeled before him. He cannot communicate verbally all the things going on inside his head or his emotions. This is a large part of why he exhibits behaviours.

I felt listened to. It was energizing. I hope that my listening to their struggles and attempts to support or give advice for them were helpful too. In the end, our reason for being in that room was for James, as it should be, and I think that's going to be the start of a change for the better.

DEFCON 2: Emergency IEP

As a special needs parent, I feel my lowest alert for school and things in general is a DEFCON 4.

With the new school and lack of supports, we hit DEFCON 1 in September and October. Since the move to the newest school with a good aide, it got stepped back to DEFCON 3.

Recently, the aide left without warning, and the situation has deteriorated to DEFCON 2 and an emergency IEP meeting.

Why does this keep happening?

Why are our schools still so unaware of how to work with our kids as students?

I go in at the start of the school day. I don't know how it well end. Then I clear my head and go to work. Welcome to my Friday.

PS: Still not done with the triennial IEP that started in September.