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.

Advocate Stratego

My email resulted in a call this afternoon. The school to home communication is messed up. James is back to having an aide that does not know how to deal with him. There may be another aid in a couple of weeks.

When did the parent become the quarterback, calling the plays that need to go through at school?

Then two more calls in response to different email. The ABA services provider got more frustrated than me, trying to set up 3 more intake session before we could even think of matching my son to an actual person. They are based an hour away from us and returned the referral. They did try, but on a bad day, one of us would have had to travel 45 miles in a trip that can take up to 2 hours one way.

Back to square one, where we were in October. We may get to start up again in a month.

To paraphrase this excellent article "Why is every step a fight?"

Autism Speaks March, 2011

Deep End Monday

Today began slowly and unwillingly on James' part. I called the bus and school people to say he was coming in, but later than usual. I did the same for my work.

Last night's laundry session was brutal, no two ways about it. To top it all off, half the dryers in our complex are broken, a really swell thing to discover in the dark at 8PM on a Sunday night with a howling teen and a heavy basket of wet laundry.

In honor of Montana and Yellowstone, Calistoga's Old Faithful.

But the bright side today was that James had lots and lots of clean clothes to choose from, as we put them all away together.

A few hours later at work, I got a call to pick up James. I asked to speak with his aide. She is a person a of few to no words. Evidently James told them that if he made it through 3rd period, I'd pick him up and he could go home.

This is what happens when communication breaks down. As there was almost nothing from the aide and I was unsure who his case manager was, I  asked to speak with the principal or vice principal. I am no longer shy. The VP turned out to be a person who listened and knew James. She thinks he's a pretty neat kid too. I have an email to write after this, with a sociable cc list. She will try and brainstorm tactics for working with James and keeping him at school. I cannot keep picking him up and he needs to get his education.

So I finished work and got home almost 3 hours later than usual. Thank goodness for Sunday-made crock pot meals! James had pizza.

As soon as I was finished, I had James get out the homework packet that I asked his aide to send home with him, so he did his work on time. Luckily, it was working on States, and James loves geography. We learned some things about South Carolina and Montana. James coloured on the handouts. I made him write the basic facts at the top and I wrote the longer answers below as he dictated them.

Halfway through, Respite called. Now there is car trouble delaying respite. I have been trying to get this since October, mind you. Maybe in February it will happen. The next time you are tempted to say to a special needs parent "but you have respite, don't you?" - this is often what you actually get. So please don't say it.

Now it's really tough to get James back to finish his homework, but we finally get there!

Now he's resting. I have my homework: emails, texts, a test. It's almost 9 and I should be sleeping because tomorrow at 5 AM I am up and at it again.

Positive Altitudes

I had to look up at James the other day to talk with him. I know he's grown taller than I but he's been hunching over. It's been a rough year. This past week he has been in a chipper mood overall, and his posture is improving.

I am so glad. Regular middle school years are hell. Autism intensifies everything. My guy has a sweet side, and he is happiest when others around him are mellow.

Today's topic of interest: Angry Birds. Every game. Multiple levels. Accompanied by happy hums. He pops out of his room to tell me about it all.

I am enjoying it while it lasts.

Because today we clean his room and he takes a bath.

Multiple Personality Tasking

I have been saying for a while that I love pretty much everything I am doing in my life: being a mom, working full time at my current job, spending time with family for major life events, engaging with the public schools system, and finding out more about autism and thinking of ways to improve services and resources for those dealing with it.

What's stressing me the heck out is the constant need to be in multiple places at the same time. It's usually at least three. Sometimes it's all the above stuff, but mostly it's the mix of my life underneath: clean the house, focus on finances, single parenting, gratitude on the go, trying to find a place of my own in an area that has had a huge chunk of affordable housing destroyed in a fire, the need to slow down and exercise, legal issues tied to autism, chasing down services for my kids, trying to plan for the future, keeping the car running.

Then there's the me-me stuff: reading, making things (anything, from writing letters, to taking photos or making images for display, printmaking, cooking, and imagining), re-connecting with friends,  meditation. Grieving.

I am not just multi-tasking, I am multiple personality tasking. And I now need to add another thing: simplify what I can, because the weeks are blurring past and I am tired.