What in the world ever became of sweet Jane?

Ok, more GD lyrics, sorry but they work so well.  I am so frustrated.

Here are the things that drive me nuts, and frankly put me over the top. Dealing with autism, not so bad these days.

1. People who tell me they want to help but add to my stress or load. For example, we are having Passover at our house  tonight, 20 people. We didn’t really want to host it, but that’s life. Everyone says they want to help and bring something, yet they complain about what they have to do.  Remember, we are the ones that work full-time and have a special needs kid. Get your assignment, do it, come with a smile on your face or stay home. Happy Holidays.

2. Let me know what I’m supposed to do, I can do it, just don’t make me run around like an idiot. I am trying to work out getting two kinds of liquid prescription meds plus injectable growth hormone meds for Bryan for camp. One pill and one injectable growth hormone med for Jason for camp. Does it really need to take an act of Congress to make this happen? The specialty pharmacy says call the manufacturer, that’s dumb.  We have two insurance companies, one that’s medical and one for pharmaceuticals. Is it possible for them to work together with the doctor? So there are 4 meds here, two doctors, two camps and a partridge in a pear tree. I know what you are thinking, they are not going until June, why are you doing this now? It will take me until June to get this worked out. Not anything to be upset about, just goes with the everything is a thing theme.

3. Special needs schooling. As you know we are trying to get Bryan into a good public middle school in our county. We want him to go to a school other than our home school and so the lobbying begins. What is interesting is that no one, literally no one, can tell you exactly how to do this. So you need to apply for a reassignment which is not until May, ok I got that. Then you need to apply for what is called the McKay Scholarship which provides funding for schools, public or private for your kid with Autism, so long as they have completed one full year in a public school. The schools want this money; it helps you get busing for your kid, and provides schools with money for the resources needed for your kid. But each school can’t have too many of these kids. Why is that? How the decisions are made on these two things and what magical formula you need to use, well anyone can take a big fat guess. You would think it would be straightforward. Nope. I have already spoken with 6 people and no  really knows. I think that is purposeful so you can’t say well I did X and Y and it didn’t work out. Now you see why I’m not feeling very nice anymore. Everyone has to advocate on behalf of their child, but this is nuts. What is really nuts about it is that if the damn school district applied resources equally and the governor didn’t cut half of the programs there would be no need for this. Instead let’s have people scramble all over the place and act like lunatics, that’s productive.

But since it is a holiday, I will try to end this on an upbeat note. Never underestimate your special needs kid. Jason often feeds our dog, Riggs. This is not a major chore but it involves a few steps. I asked him to please show Bryan how to feed Riggs and he did. He followed the steps and was very smiley proud of himself. Last night we came home from speech therapy. Typically when we get in the driveway, the drill sergeant Jason jumps out of the car and yells Bryan, don’t go in the alarm is on. I said “Jason, Bryan can turn off the alarm.” You see, even if he isn’t saying something Bryan is always paying attention. He punched in the code and turned it off. No problems, no issues. We were hooting and hollering like he    won the lottery. Bryan was so happy.

Happy Pesach, Happy Easter, Happy Friday.

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2 thoughts on “What in the world ever became of sweet Jane?

  1. I can sooo relate to your post! We seem to struggle with this every time a holiday, birthday or get-together rolls around also. It is easier for people to come to our house than it is to go to theirs to keep our daughter more comfortable but it is beyond difficult to prepare for anything with three kids-ages 6, 4 and 3 and one of them Autistic. As much as everyone says they will go with the flow and help to accommodate her schedule everyone always ends up complaining. It’s a no-win situation and sadly I don’t think it will change anytime soon. This is our first Easter after her diagnosis and we decided to have Easter just as a family of five this year. I thought it would make me sad that we were missing out but it hasn’t at all. Happy Easter to you and yours!

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