My Autistic Boy And Other Adventures In Fatherhood

This morning (Saturday), I drove to Danville, KY for a seminars on IEPs in the state of Kentucky. I would guess there were about thirty parents there, and a number of local educators.

I’ll be writing over the course of the weekend about it - while it is fresh in my mind. 

Now, as I’ve said before, I’m not the most compassionate guy in the world, and if I wasn’t new to the state, I’d have left with having listening to the whining and crying.  But eventually it died down and it turned to some good solid conversations.

However, I will start out on the personal side, and one of those things you realize while listening to stories and lectures that I often forget in my day-to-day life.

Kim and I are EXTREMELY LUCKY that we have a lifestyle that enables her to be so active and involved in Demetrius’ life. 

One woman at this meeting was talking about her husband who had to work today and couldn’t come to the seminar… and that she had to have the IEP for her kid scheduled at 7am in the morning, and it took about 3 IEPs to get through the content, because she’s carrying two jobs right now, and to be at work by 8:30 am.  One of the jobs she is carrying is giving her enough hours to qualify for health insurance, the other pays for therapies.  She just doesn’t have enough time to read everything she needs to read about autism, go online, and read everything the teachers send home.  She feels that she is letting her son down, not as in the loop as she needs to be, and she has to trust the school too much, etc…  Of course she cried.

Every time the discussion turned to ways to create templates for teachers, emails, special meetings or calling an IEP more than once a year to go over things, she would whimper and put her head down.

At one of the breaks I heard her say she came to the meeting to learn some things, but ultimately she’s learning she’s not doing enough, and she’s not involved enough.  The meeting probably was anything but helpful for her, rather, was fulfilling her worst fears.

So it got me thinking.

I guess, like anyone, I could view my life as being a bit unlucky - unlucky that I’ve got a special needs child that will grow to be a special needs adult - one I worry about in this economy and the future of being able to fully take care of in his life…create an environment that could lead to a comfortable and fulfilling life for him…that Maya’s life is at some level unlucky because she’ll probably have to take up the rope to an extent of caring for her brother after her mother and I are gone…

But instead, I should be viewing my life as lucky.  Lucky that Kim can stay home and go to the school if there is a problem, or not. That she can get to know the school faculty and administration… because she can spend a couple of hours running copies for them or working in the library, or help out in any other way they need.  Read everything, respond to everything, work with the teachers on…well, everything.  To help them and the boy have a better educational relationship and experience.

That ‘everything’ includes creating a template on his going to the library by himself to check out books, what steps he has to take to get a smiley face and continue with this activity that he takes such pride in.  In fact, I’ve heard, this actually has helped him curb his TV/movie talk - too much of it and he can’t go to the library. 

These things can be created and worked on when you have the time to focus and figure things out.  Great IEPs are written when you can interact with the teachers and feel like everyone has the same POV, or at least, everyone knows what everyone else’s POV is.  Individualized strategies and tactics can be tailored when you have the time that Kim has…and she throws herself into it.

We are lucky, because after this morning, I kind of feel like we have the whole enchilada, and is there anything in life where you can say that?  Especially when talking about an at risk autism child?

This mom I described above?  She’s probably dog tired every night, and does what she can before she drops into bed, to do it again the next morning - and she feels like it isn’t nearly enough.  Only she knows. I know Kim doesn’t feel she does enough, but I can’t imagine Kim’s guilt if she had to work two jobs and couldn’t be involved.

At 2:38 pm on a Saturday, she probably feels depressed after this morning’s session.

So today, on this Saturday afternoon as I type this, I’m feeling pretty lucky. I need to keep this perspective.