Pre CPSE Meeting

Had a meeting with Zach's team at school to discuss their report that they will present at our CPSE meeting. Oh yeah. That is sometime next week. I don't know when. I cannot find where the envelope from the school district is. Sad sad sad. This is so not the person I used to be.

CPSE is the Committee for Preschool Special Education - it's basically the reps from the school district making sure that the county is getting it's money's worth for paying for his preschool program. These meetings occur a few times a year and are part of the things that makes having kids with special needs pretty much stink. Usually everything should get nailed down during these meetings - like what sort of services and how much. But occasionally, you will think you agreed to something, you leave after cordial farewells feeling good about the outcome, a week passes, the paperwork arrives with a report that says something different than you thought you agreed to. You just never know how these things are going to work out. Bring a tape recorder.

My favorite (note sarcasm please) part is the balancing act between "he's showing progress so let's keep him in this program with the intensity level as is" to the "he is showing so much progress he doesn't need this intensity anymore". In other words, you want your kid do to well, but not too well. *sigh*

Overall, Zach is still at least 12 months behind where he should be in just about every category of academic testing - social, cognitive, fine and gross motor, and speech (all areas of speech including expressive language, receptive language, articulation, etc. ) When I read the report, I basically was pretty low for around 10 days. I could be happy about one thing, they likely would keep his services where they are. This includes keeping him signed in for a summer school program. Each of the evaluators in the report were thorough (gracious?) enough to write that Zach had issues when transitioning back to school after being out for illness or vacations. I am glad I have a team that anticipates what the county and school district would likely throw at us. This track record of transition issues suggests that a break of 2 months could be catastrophic for him. I have heard stories that other children who did not have this indicated in their records were told to go without services for a week or two, and see if there is any regression noted. I am hopeful that this is documented well enough to suffice. (Knock on wood, say a prayer, cross your fingers, whatever...)

So after struggling with trying to love Zach for the child he is, accept the autism, take each day as it comes, look at the progress he has made, I read these words, and my heart has been broken all over again. I keep on thinking about the 14 more years of going through this cycle of having to read words that talk about such things as: deficits, being behind, issues, problems, behaviors, standard deviations, delays, appropriateness, and I wonder, will I ever be able to handle this? I know I am somehow getting by, by the grace of the Almighty, but I do not feel like I am handling this, and rumors have it that it will become harder as he gets older. Is it still in my head that all is still normal? Is that why reading this report is so difficult - it is slapping me with the reality of my life? a reality that I am still fighting?

In this report there are other words, sweet and happy come to mind. You can sugar coat it all you want, it doesn't take the sting of all those other words away. He is sweet. He is still Zach. I love him. Always will.

Which brings me to the next issue so hard to get over - Sophia asked me the other days if I loved Zach more than I love her. I could easily understand why she might think this. Zach gets lots of attention, therapists coming to see him, much of my conversations are about him, my life revolves around his therapy, schooling, diet, doctors appointments, research, etc. I love both my kids so much. Some times I want to tell her that she is the only thing keeping me sane - seeing her growth, slowly adding into her independence, a complete budding flower that I merely water and fertilize once in awhile. I am not sure what the future holds for Sophia, but it looks so promising! She says she wants to be a nurse/teacher/astronaut and asks me if she can be all three. I told her that I think she could do it if that's what she really wants. And I mean it.

The juxtaposition of her with her brother scares me. Like her, I have no idea what the future holds for Zach - but the promising part is missing. When Zach looks at me, it is with a certain intensity. I know he loves me. I know he counts on me to be there. As much as I love being needed this way - it scares me. What if I were to fall ill or leave this world early? It is sort of odd, but I value my own life so much more now because of him. Sophia made me want to be a better person, a role model for her. I make sure to take care of my health and try and live positively and with thought, because I want her too. With Zach, I feel that these ideas are for a different purpose, I need to stay healthy and think positively so that I can be there for him. He will need a level of support that she likely won't. That isn't love, that is doing what is necessary out of love.

I was thinking about my father and how I sure do miss him. And then I thought about my mother and the inevitable. When Mom was first diagnosed with lung cancer, I remember part of the grieving process kicked in for me. I realized that I did not want to be an orphan. Yes, even at age 40 I would feel orphaned. There is a sort of love that is unique to the parent/child relationship (if you are lucky). It makes you feel safe and protected - even though it doesn't make sense. What is my 78 year old, cane walking, oxygen taking mother really going to protect me from? A life without love I guess. I know my mother loves me like no other. She knows me, there is no explanation needed. It scares me to have to face this world without her around. A mother is a shadow; she feels your pain when you are troubled and your joy with your successes. I know how she feels, because it is how I feel about my kids. Every time Sophia sheds a tear, especially if it is out of frustration or hurt feelings, my heart aches. When I see Zach frustrated in getting his wants/needs met, my heart aches. When I hear a giggle out of either of them, I am soaring. My life's pleasure is measured out of their happiness.

Sometimes it is hard for me to have joy in my life; there just isn't enough laughter to compensate. When I see how frustrated Steven is with our situation, and not without reason, my heart sinks. I think back to when we were dating and he told me he didn't want to have children. I told him, OK, thank you very much for playing the "Dating Leanne Game", it was nice knowing you, good luck in life, I am afraid I have run out of parting gifts. That's right, I promptly told him that would be the end of our relationship. I have always known I wanted children and I wasn't stupid enough to try and change his opinion. (Being 31 had taught me a few things about relationships.) He showed up at my doorstep a day or two later, tears in his eyes, and told me he that it wasn't that he didn't want to have children, but that he was frightened to have children. The world is tough, people can really stink and he wouldn't want to have his children endure the nastiness in this world. I realized then and there, that as much of a skeptic as I am, in my heart I am an enduring optimist. This is, perhaps, what helps me to get through all of the madness.

But Steve is not. I feel as if every bad piece of news torments him far more than myself; confirms that the world is an evil place with evil people doing evil things to his precious children. I struggle with thinking that he made the wrong choice so many years ago when he decided to continue with the "Dating Leanne Game" and that perhaps I should have really ended it there for his sake. If I could go back 10 years...

I remember telling Steve that I wanted to share all the beautiful things in this world with a child- a weekend camping, the companionship of a pet, the smiles of a friend, a waterfall, learning to play the piano, fall leaves, winter snow, blue skies, chocolate ice cream. Indeed these are the things I loved doing and observing with my nieces and nephews. I wanted that for myself.

I recall being told I was old with my first pregnancy. OK - not really, but pretty much. Once you are around 35 you are considered old in the medical establishments eyes when it comes to popping out babies. They wanted me to have the baby tested for genetic faults due to my looming age. I recall talking to Steve, telling him that I didn't want the testing, because I felt even if the child did have Down syndrome or some other "abnormality", I could not abort. We discussed this, and I distinctly remember saying that we would love the baby, no matter what. These words were so naive I realize now. Not that I didn't mean them, just that I had no idea what strength it would take. Don't get me wrong, it is very easy to love Zach. But the intensity of the love is paired with such an extreme fear of what he might endure in this world. I feel as though as long as I am alive, I can deflect the crap. I am not sure if Steve is as confident about this.

So I largely don't talk about a lot of my biggest fears regarding Zach because I don't want to burden him with it. This makes me feel pretty alone. I am not sure if he reads the blog- I think he occasionally does. But even here, I sometimes avoid writing the things that make my heart stop when thinking about Zach - the things that I occasionally read about or hear about that happen to other ASD children.

Take a deep breath. OK. Right now, I just have to deal with today - and a little about next week. Let's get through this next CPSE meeting. Holding my breath until Wednesday... Thursday. Ahh geesh, I really need to get back to my old organized self and find the envelope with the meeting date in it. I am pathetic.