The Green Eyed Devil

Sophia's bus ride as part of her orientation was not as dramatic as it was for other parents sending their 5 year old off on the big yellow burly vehicle. I didn't want to cry; I had absolutely no urge. I wished Steve could have been there to see some of the lunacy and disorganization that just made me laugh, in all honesty. For instance, her bus was over 30 minutes late to pick her up.

Then they referred to some badge the kids would wear as if we would know what it was and no one had a clue - oh woops - they forgot to hand those out.

When asked what to tell the kids to do on their first day of school when they get off the bus, the answer was that there would be someone to individually greet them. The mother who asked the question attempted to further clarify - "Should I tell my son to look for someone or walk to the entrance?" No, the answer was, there would just would be someone miraculously there for each child. To understand the nature of this problem, consider this:a bunch of 5 year olds who are going to school for the first time, and they will be sitting amongst first through fifth graders throughout this on 20 various buses. I wanna know how many school districts have 60 teachers available to locate children and direct them to their classroom. I am rethinking my vote for the next school budget.

And my personal favorite was the bus driver's assistant: he told a story to the kids of a little girl who did not pay attention to hand signals of the driver and "she was killed" (nothing like adding a little fear of dying to the separation anxiety...)

But I am not worried. It will be confusing, and I have little advice to offer Sophia, but she will be fine. Sophia is a pretty tough and astute little girl. And they must know I'll kill 'em if anything bad happens to her, right?

I enjoyed the visit, and then back home we were. I walked in to seeing Zach eating lunch. He ran his morning session while I was gone and the second therapist was now here. I sat in on the second session. He did some things well, and some things not so well. The therapist was surprised at all he didn't do. Is it noncompliance? It almost seemed as if he knew he should know, but couldn't remember what to do. My heart broke. Something is going on, and I have a call placed in to the pediatrician and Strong hospital in Rochester NY to ask for help.

Yesterday afternoon, we had a playdate with dear friends D. and her children who are Sophia's and Zach's age. Zach was initially napping during the first half hour. I awoke him and he seemed to enjoy the kids and the craziness - once in awhile even stepping in to the action. He was smiling and even interacted with D. the mother a bit. But as I watched D's son and heard him speak, my heart just ached. It was the same ache I felt when I watched the boys on Sophia's bus ride this morning talk and laugh and mess around. I want this.

Then there was the call from another mother whose son is also dxed and is 6 months younger than Zach. They stepped right into ABA - likely because of the fight we put up with the county. There was no lapse in service. Because of their son's age, they will not have to make the leap into the school system yet. They get a substantial amount of help from their family. I don't believe they have any financial concerns - they live in the a lovely well decorated home with everything in its place and lots of amenities. Better Homes and Gardens, and we look like something out of a fraternity house they day after the great beer pong party snapshot on flicker.

This morning came the shock of how much private therapy may cost us - $780 a week. The therapists tried to warn me how expensive it is. I have this pit in my stomach. Not a good time to lose my job. From what we observed - the school will likely not give enough one-on-one to Zach based on what he is used to getting, and based on what the recommendations were for him. I feel like we are going to go broke for sure. It might have been less expensive to keep the home based program now that I think about it. I think of the summer home we could have had on the lake... OK snap out of it, never gonna happen.

A good therapist is worth her weight in gold, platinum even. I just have to make sure that we are getting our money's worth - that this program is really producing results. This could be another dead end road for us. We will just have to come up with goals and requirements, measurements, and look at results. Sound engineering practices, in all honesty. That means I have to take more responsibility and others need to support me in making sure I get this done.

Right now, I have already suffered from SAHM Syndrome. What is that you ask? Stay At Home Mother Syndrome is when everybody thinks you have all this free time and that you are filling up your time with impossible Martha Stewart projects, watching Oprah in the background. That means, since your time is so meaningless, that you are fielding phone calls from everyone to check their mail, bring people to doctor's appointments, stay around for plumbers to fix things, etc. Uhh, no.

When I actually said no to someone about such a said request at 8:15 in the morning, and the appointment was for 10:30 that same morning, I actually had to hear the, "well the person I lined up to do this has a job that they are going to have to take time off from" remark. Are you kidding me? Maybe I would still have a job if someone gave a damn about what we were going through and its impact on my career 6 months ago.

I am jealous. I am envious. I don't want to be. It's selfish. But I look around and see people with solvable problems complaining and meanwhile I feel like I am in a no win situation. God - I am truly awful. I know people have it worse than us. I know of children whose autism is a lot more debilitating. Adding perspective doesn't seem to help the green eyed monster lying within me. I am totally freaking out if you can' tell.

If I try to live in the moment, enjoy my child's smiles and try and evoke a giggle, I feel like I may be ruining his chances of developing more abilities. If I get caught up in researching all the latest and greatest, significantly significant, scientifically validated treatments, I become overwhelmed. If I try to concentrate on existing therapy, and follow through in the home, I experience the joys, even thrills, of new and emerging skills, and saddened by the plateaus, and become disheartened, not quite bitter, at the regressions.

I know I am not in control. No one really is. But don't we all like to feel that we have some control? Some choices or actions that affect our destiny and the destiny of others, most importantly our children? Don't we want those choices to be the ones that drive us to where we want to be?

Maybe I just want to feel like I am contributing. I used to get a sense of that by doing volunteer or community work, my career, communing at my church, spending time with my extended family. Now, I wonder if all that ever meant anything at all - no one seems to recognize what I was up to - could I have been totally self serving and not even realized it? I don't even know if that matters anymore. I could be the most altruistic person on earth, but based on my circumstances, the only contributions I can really make right now are to my own family - that's what happens when you are lost at sea looking for land, you can only worry about the crew, not the people on the island.

Deep breaths, deep breaths. I know. Gotta get back to running, I know.

I have had a few mommas with kids who are on the spectrum tell me it gets better. I am not sure what that means. In some of those circumstances I think they said that because their child did develop and in some cases flourish. But what about the kids who don't? Does it still get better because you get used to it?

There are still joys out there. I may be the worlds biggest mush - and Zach loves to be mushed over - very cuddly, wants me to be held a lot. So maybe we are the perfect match - mutually beneficial joy. I sure do love him. Wish I wasn't such a gosh darned control freak who wants to have some security in having a glimpse of his future.

Since I began this post, we have since had another playdate - 3 wonderful, animated and sweet young girls. Zach once again enjoyed the craziness of the other children. He even imitated the 20 month old in sound production. It was great to see. And the Mom is so great at tolerating my lunacy, and sharing with me her feelings about parenthood. K. is one of those Moms who loves her kids, does so much for them, and keeps her cool. I don't think she has a jealous bone in her body. You know those moms who compare their kids, get a sense of pride out of early milestones? As if they really had anything to do with why little Tommy is walking at 8 months. Yeah - well I am not one of those and either is K. She accepts her children as is, and makes me feel at ease about Zach. Perhaps it's her special ed background.

I know my situation is different, more unsure and involving so much more complexity. But I feel if I really want to benefit my kids, I just gotta get a handle on my neurosis.

Zach is off with Babcia M. now taking a walk, Sophia is napping, and it is a beautiful 72 degree, blue sky day in Syracuse. Breathe, deep breaths.

Gotta run - Sophia woke up and is having a melt down that I cannot get a purple hair tie around her miniature moose to look like a belt. What a joy to have weird kids.