Jessie & Taz's World. . .

I have been struggling a lot lately with what I want, what I have and what I can achieve in this world.

Not the "World" literally or even generally, but My World. . .Jessie and Taz's world.

We seem to have found some stability for both children in school at least. 13yo ASD Jessie is in private school on the state special needs scholarship. 7yo ASD Taz is in public school and we have finally started the full IEP process, but have to hold our breath for 60 days to see if he gets all the services he needs.

The economy is tanking and we have very little discretionary money, which is a general problem in the World today, but it can be a catastrophe to a special needs parent. We've cut our expenses to the bone, we eat-in, instead of eating out, we buy on sale/in bulk and we don't go on vacations, to the movies or to the mall.

We've also had to make some very tough choices about which of the kids medications are absolutely necessary and whether we could substitute generics for some brand names that work better with less side effects.

And, just when I think we can manage with the cuts we've made, new expenses crop up. Jessie has to have after school tutoring, because she's so far behind after attending a Charter school for three years that did not comply with her IEP.

We also added additional private soccer coaching, because the recent merger of our soccer club with two other clubs has created chaos and almost left us without a team for her to play on this season.

I''m really hoping that the team of generally nice girls that we finally scraped together will be competitive once they get up to speed and, if they can set aside petty rivals that are causing dissension in the ranks.

Jessie is oblivious to all of this. She came out of a weekend of tournament games that some parents would call humiliating and posted on her Facebook page that she had a good time with the team.

I nearly cried, because there was a time, not so long ago, when Jessie could not communicate with her teammates, schoolmates or even some close friends. Now she's posting on Facebook that her team rocks and they're gonna "Kick Butt."

In a perfect world this would be enough to keep me and Jessie very happy. The problem is Jessie is a soccer fanatic, this is her last year before high school soccer and she wants a college soccer scholarship. To get there, she has to train as hard as possible and at the highest level she is capable of. But, at the same time, we can't forget that she is finally socializing with her teammates.

So we compromise. We give our current team our full support and find the money for extra training.

Which brings me back to the subject of Taz, a very bright boy, who cannot read. The boy can create his own science experiments with the rights tools and ingredients and he's a talented artist.

He would really benefit from some enrichment classes in Art and Science, but we simply cannot afford them. We've also cut back severely on his arts and crafts supplies, which keep him busy while we focus on Jessie's soccer, social skills classes and church youth activities.

Someone told me this summer that I focus too much on Taz when I blog, probably because he gets sick a lot, is on a very limited Gluten Free Casein Free diet and has many sensory issues.

In reality, I go back and forth between two special needs children, trying to keep up with both of their issues and needs. I don't know how parents with more special needs children survive. It's hard even when you have only one and it can be almost impossible in the current economy, because of the added stress for many families, like ours, who are living on less income (dh is self employed and I work for the insurance).

I often ask my readers to walk a block or even 100 feet in my shoes, but I'm not going to do that today. I'm not even asking for support, since I've learned that our family has to count on themselves and do what's right for us.

However, I will ask that you think before you make our lives harder. Be encouraging and positive when you see us and our children. . .as my grandmother or some wise woman always said "If you haven't got something nice to say, don't say anything."

I love that Jessie's posting on Facebook, but I hate the fact that Facebook allows her to see the comments from friends of her friends, even those that may be negative or hurtful.

Have a blessed day on this 8th anniversary of 9/11

Nianya