Jealousy

GB was diagnosed with autism almost six months ago. If I close my eyes, I can still feel the wash of lightening  through all the nerves in my body, followed by  them shutting down, leaving me with only the psychologist's voice. Her voice faded into the background and I could no longer make out her words. My heart said NO! She doesn't need any more difficulties to make her life harder. My head said Oh! That explains a lot.

The Dad is coming to a place   of  acceptance. In the fall, he wanted to sign up GB for NT soccer. I said absolutely not  and because I provide the transportation, I  had final say. At Challengers (Little League for Special Needs) last Sunday, The Dad thoroughly enjoyed watching GB be happy, content, and actually play softball.

I wish I could say I have found some acceptance in the last months. I am thrilled she is enjoying softball, happy at school, and making slow, but steady progress in learning new skills. So, what's my problem? Better yet, why do I have a problem? I have a problem because I am jealous.

I have a couple of close friends with all NT kids, close in age to my girls. I am jealous of how easy it is for them to take their girls and just do things. I want to be able to do all most of the spontaneous things they do. One of my friends called this morning at 7:30 (first off, I never can take phone calls while getting them out to school- it is hard enough when I give it 100% of my attention) and left a message that they were taking their kids and checking into a local motel for a night of swimming and movies. It sounds great- except Hope only functions at home, GB can only handle an hour or so with the big group inside, and they are both asleep before eight o'clock. I totally get how a break from routine refreshes people. I just can't navigate this one. And yeah, I am jealous. I am jealous that they can go to a movie without having to watch the movie first and consider the triggers in the movie and if their kids can handle them. Their kids don't have triggers.  We go out to eat and they look at a menu and talk about what they feel like eating. I have to help my girls pick out food that won't lead to a melt down or a manic. GB is pretty good. She knows what she likes and she knows what she has to avoid. As long as I am watching, she will avoid it. Hope is difficult. After eight months, Hope is still unable to choose food from a menu that she likes. Before I wised up, Hope picked macaroni and cheese three times straight. Each time the macaroni and cheese showed up, Hope melted down. What did she want to order the fourth time? Macaroni and cheese of course. The meltdown came early, when I told her see couldn't order it.

Hope is repeating kindergarten in September. It is a good decision for her. Between all that she has gone through in the past year and  where she started, I never really expected her to pass kindergarten this year. But when conversations with my friends start with how unreasonable the amount of homework their kids have is, I am jealous. They have not had to go to school at all this year to make sure a problem gets solved.

My friends NT kids can play outside in the yard without somebody sitting there and watching them. They can put in a DVD on a rainy day and their kids watch it all the way through. I am jealous of the quiet and the time to themselves they get from a DVD. My girls won't watch a DVD all the way through even when a captive audience on a car trip.

My friends are always helpful when I have a child melting down. I am jealous because that child is never theirs. It is always mine. They are very flexible and understanding when I have to change plans at the last minute. I am jealous because I am never the one who gets to be flexible and understanding. I am always the one that changes the plans.

A lot of what I feel can be considered grief. I grieve the things that will never be easy for my kids and the experiences that they are not having because, right now, they can't handle them. The jealousy I feel is real, too. It  has nothing to do with the girls. I want to be able to just do things. I want to let things ride and be able to assume everything will work out, have a cup of tea and know without looking that the girls are fine for that ten minutes, or send a note to a teacher to take care of a problem. It is certainly about wanting things to be easier, being tired, and wanting to fit in. I have no doubt that these jealous feelings are rooted in selfishness and that I would be a better person without them. I try not to let them get too tight a hold of me. So far, though, I am unable to get rid of them.

Each morning, when I wake up, I check inside me, looking for that place of acceptance and the peace I am sure will come with it. So far, it hasn't been there. So jealousy remains an uncomfortable inhabitant of my body, mind, and soul. I believe I am a work in progress, but God and I have a long way to go.

Superintendent-Go-Round, Part II

When I wrote yesterday's post, Superintendent-Go-Round, I was waiting for the Superintendent  to call me back. He did, at 3:05. He assured me he was taking me very seriously and he would do everything in his power, but ultimately the decision was in the hands of the school board. I started thanking him for his time, getting ready to hang up, when he interrupted. He said as a show of his intent to help me, he could guarantee the bus would pick up the girls at my house today and the aide in question would not be on the bus.  He said he would get back to me today after he had time to work on the problem.  I was as polite as I could manage at that point and repeated that this had been going on a full week and I simply did not have the time or energy for any more pass-the-hat.

The bus picked the girls up at the house this morning. No brownie points for the Superintendent, though, since the IEP was amended Wednesday to require this. The aide in question was not on the bus, but there is usually a different aide in the morning. I will update when he calls back or when I hire a lawyer... which ever comes first.

Today is crazy hat day. GB had a hard time deciding which hat. She left with no hat. I guess I will be making a trip to the school today, despite all of the Superintendents help.

Superintendent-Go-Round

Today I have spent my day attempting to speak to the Superintendent of schools. After having gone through the bus company, the building principal, and the Director of Special Education, I refused to play the Superintendent-Go-Round game the district wanted me to play. First, you speak to the secretary so she can schedule you with the Superintendent's Administrative Assistant. Then she passes along the information the the Assistant Superintendent to see if he can keep you from bothering the real Superintendent. I have been playing these games all week and I am not playing anymore. I just called the lowly secretary to leave a message for the Superintendent. The message was " If I do not speak to the Superintendent by 3:30 and get this issue resolved so that I feel safe putting my brown, autistic child on the bus tomorrow morning, I will be hiring a lawyer this afternoon and speaking to the papers tomorrow".  I am so tired of dealing with sh*t.  My health is worth more then the school district's convenience.

MYOB

Yesterday afternoon I was invited to an impromptu meeting about Hope. They wanted to discuss upping her meds because of her acting out. I asked if her acting out had been dangerous to her or others. They said no. I pointed out Hope was in a class for behaviorally disordered children.  I told them I thought Hope's acting out in school was a good thing, because now they could deal with the feelings that are driving the behavior. Then I told them medication was my decision, not theirs. What I wanted to tell them was "Mind Your Own Business", do your job, I don't home school, so why is this my fifth trip here this week, etc, etc. I am tired.

Only in the World of Special Ed

About a month ago, during GB's Annual Review, the school district denied her door to door busing. I consulted a lawyer, and filed my written protest to both the Director of Special Education and the school board. Having heard nothing back, I filed a notice last week with the school district informing them I was going to the state because they were denying my child a FAPE. Mrs. Very Stupid Chairperson said "Do what you have to do".

On Friday, we had the bus incident with GB and the aide. Yesterday, I spoke with the principal of the school, left the Director of Special Education a handwritten note, ignored Mrs. Very Stupid Chairperson, wrote a letter to the school board,  and mailed  it (signed, returned receipt required).

This morning, bright and early, the Director of Special Education called. GB starts door to transportation as soon as Friday's incident is settled. I asked her directly what changed. She told me that she was all about negotiation and compromise. I pointed out to her she was giving me exactly what I asked for. She said that law suits were expensive and unnecessary.

I hope she still feels that way when she gets my request to add two more individual speech sessions to Hope's IEP.

Too Much Monday

Took both GB and Hope to see the psychiatrist this morning. The shrink was really pleased with GB. Her thinking was clear, she was engaged, and she was willing to talk about anything. Then it was Hope's turn. Hope immediately told the doctor she was "tupid" and she hated her. The doctor told Hope that "hate" was not a word she allowed in her office and Hope immediately told her that she hated the therapist, too and everyone else in the office. The psychiatrist decided this wasn't a good time to schedule the TOVA (yet another behavior screening instrument). She also decided she would rather not increase Hope's med, as we are better off with the behaviors  (and the feelings behind them) being out in the open.

After the 3 hours to and from the shrinks and our appointments, I took Hope to school. I spoke with the principal and left a hand written message for the Special Education Director about Fridays bus incident. I have decided I have to deal with the incident because if I am not sure GB will be safe, I will end up driving her both ways and that will add another hour to the day. I am now writing a letter to the school board, which I hope to get into the mail (sign, returned receipt required) this afternoon.

This afternoon, GB and I go to see the family doctor. Her appetite has been unchecked through three medication changes.There are a couple of metabolic disorders the doctors mentioned when she was an infant that we never saw a need to check out and nobody ever mentioned it again. I am thinking that maybe I missed something.

Sunny Sunday

GB and her Buddy Abbie!

GB joined Challengers softball this spring. Today was her first game. Her buddy is a teenage girl named Abbie. They hit it off right away and Abbie will be GB's buddy for the season. She had never tried softball before, but was able to throw and catch and didn't need a batting tee to hit. Most important, she beamed from the minute she met Abbie right through the game. And it only cost $15.00 for the season. I met another mother who is suing my school district. I may have found a new IRL friend.