Wednesday, April 30, 2008


I have sort of been wallowing in my own private hell of late.  It's not something I have the liberty to blog about, yet it is sort of all consuming.  I guess in response I started to feel like I didn't have anything to say or write about.  A few hours ago, the phone rang.  The caller ID came up as the sister of my best friend from high school.  Now, why would she be calling me?  We exchange cards around the holidays and I talk her sister, my friend Chris, a few times a year.  I hadn't heard from her in awhile, so when her sister's name popped up, my heart filled with dread.  If something happened to Chris, I don't know that I would have been able to cope.

Fortunately, Chris' voice was at the other end.  I was relieved, thrilled even.  I had driven around after work, running errands, in sort of a funk.  I felt lonely.  I am not discussing the things that are bothering me with my friends, I am not airing them out here.  When I am not focused on the task at hand, whether its parenting or working, I am sort of lost in this fog. I want to reach out, but in many respects, I am alone in what I am going through.  For a variety of reasons, I have to be.  But I have never felt so isolated.  When I heard her voice, I felt my shoulders slump.  This woman has been my friend for 22 years.  I can talk to her.

Sadly, she wasn't calling with randomly.  It was news, and very sad news... a friend of ours from high school had passed away last night.  She is a year or so older than me, so she was 39 or 40.  She died of cirrhosis of the liver.  She leaves behind a son, friends and family, and a lifetime of sadness that she tried for years to release.  I guess we all have problems.  It sounds like those around her in the end didn't do much to save her.  Maybe we can't be saved from our own self-destruction, but I guess you would hope for more.  At least Chris was hoping for that.  She had the opportunity to say goodbye a day or so ago and wasn't happy at the state of things.  But she at least got to say goodbye.  I envy her in a way.  Usually, my friendships end as I move away or move on or get busy.  This woman was one of the two or three people in my life that I actually had a falling out with.  It was sort of weird, but even though we had this one mutual friend (probably best friend to each of this), neither of us took steps to mend fences once we broke.  I am just sort of left with this weird ache and a deep sadness at her passing.  She was my friend, someone slept over, who I partied with, shopped with, did all those things you do with your friends when you are young.  40 is too young to die.  It really is, especially when you have a young child.

After we talked about our friend, Chris asked how we were doing.  I told her about what's being going on.  She is the same friend that she has been for 22 years, unfailingly supportive.  As lost as I felt earlier, I am glad she found me at home today and I was able to talk to her.  Even though she is three thousand miles away, Chris reminded me that I am really not alone.

Friday, April 18, 2008

What Kind of World Do You Want?

Click on this Five for Fighting video to raise money for autism and raise your own awareness...

I think every parent of a child of autism is out there trying to change the world for their child.  Maybe if we could quit fighting about what causes it and make the fight how to get insurers to cover autism, we could get more done for Jimmy and kids like him. 

Wednesday, April 16, 2008

Yeah, yeah, yeah...

I am behind again.  Lots going on.  Jimmy's IEP meeting went well, even as his behavior is falling apart.  We are being supported, though, as he is back up to 12 hours a week for therapy.  We have respite this weekend, beneficial since we lack a regular sitter now.  Really, I am just trying to get to Friday.  I think I will provide you all with a lengthier post then.  

Wednesday, April 09, 2008

Bounce for Autism

First off, let me apologize for the iPhone photos.  I need to get a camera to start carrying around on a regular basis that better captures kids in motion.  The event was great.  Jimmy's therapist came, along with his teacher.  They had a fantastic time and turnout was pretty good for a Tuesday night.  Let me tell you, climbing to the top of those inflatable slides is some fantastic cardio.  Jimmy had no problem sleeping last night!!!

Why can't every night be a Bounce for Autism?

In related news, I really hope to have Jimmy's birthday there this year.  Invite my friends with kids, invite Jimmy's class, invite some of our adult friends.  It would be a blast!!!

Tuesday, April 08, 2008

Time for Some Clarification, Friends...

Twice in as many days, I have had friends tell me that they don't want to share their problems with me because, as one said, they seem "small and petty" by comparison. At first, I was sort of irritated, but it made me think. Here's what I came up with...

The last few years have been fairly daunting for me. I turned to blogging about my experience, partially as sort of a group response to the constant questions I got post-diagnosis regarding Jimmy and partially to vent. Of course, venting focuses on the negative, the stress and the troubles. As much as I try to write about the good stuff, if writing is your release, it doesn't work that way. I'm human - I hold on my joy tightly and try to release my pain freely. It helps me survive.

To some degree, this blog is a litany of problems that are very real to people who know me well. Everything from just the day to day stress of parenting a special needs kid (and Lordy, don't get me started about the "normal" one) to the IEPs and the revolving cast of doctors and providers to the more mundane things (albeit heartbreaking) like the death of my cat - it is one thing after another. But not each thing is a problem - it is my life. I have learned to adapt to some degree, to enjoy what I have been given. If took each problem individually and categorized it as such, I wouldn't get out of bed each morning. Who would, with that burden?

And, really, not everything is a burden. As stressful as this is, I realized I chose this. I chose to have children. Would I have chosen to have a child with autism? Certainly not. But you don't get to choose that. Your choice ends when you get pregnant. Yes, you take care of yourself and the child you carry inside of you. But beyond that pregnancy, nothing is promised to you. God gives you a child and you hope and strive for the best. It doesn't always work out that way.

I don't think life would be any less stressful if I had two "normal" kids. The challenges would be different, but they would still exist. I don't know anyone who isn't challenged by their life - jobs, families, relationships, personal demons. It's all very complicated. Everyone has problems. Those problems are just as real and important to you as anything I have got going in my life. If you are my friend, those problems are real and important to me as well. It is the nature of friendship. I don't think anyone is the perfect friend - all relationships require time, energy, and maintenance, all things I struggle with - but I always will welcome the opportunity to try.

Does this make any sense?

Monday, April 07, 2008

In memory of...

My pet and companion of almost 19 years, Buster.  She had deteriorated over the weekend, wasn't eating or walking well.  I had scheduled a visit to the vet tonight.  When I got home from Jimmy's appointment, I couldn't find her initially.  After searching, I found her, eyes sunken in, unable to walk, and breathing heavily.  I got someone to watch him and rushed her to the office.  After a cursory exam, they put her down.  

I got Buster as a kitten when I was still at home with my folks.  She has seen me through a lot in my life.  She is the first pet that I have had from beginning to end - they were either adopted in adulthood or given away in one of our many moves as a kid.  I will miss her greatly.  

Sunday, April 06, 2008


Affectionally known as Miss Kitty, Buster has been part of my family for 18 years.  Sadly, I think we are going to have to take her to the vet this week.  Keep good thoughts for her.  She has been an amazing companion for many years.  I am so sad that this day will likely come this week, but I am really grateful to have had such a wonderful animal in my life.  

A Big Week

We have a big week.  Jimmy goes back to his doctor tomorrow.  With the increase in his aggressive behaviors and mood swings, I am requesting that we try Risperdal.  It's been a long time coming, but I think we are at the point where we have to try this.  I initially dismissed Risperdal years ago with the rationale that he isn't "that" autistic.  He is.  

Jacob starts play therapy this week.  I had planned to begin this a while back because of his transition issues, overall stubbornness, and the realization that having a brother like Jimmy puts a special burden on him that I am at a loss to address.  The recent trauma only increased the need for some behavioral intervention.  He starts Wednesday, though I am only going to be able to schedule these sparsely until they give me an afterschool time slot.  

We all have IEP this week as well as the Bounce for Autism, which I am really looking forward to.  And I am trying to get back into the swing at the gym, so I am going to be hopping this week.