Meeting with Jimmy's Teacher

I had my first lengthy one-on-one meeting with Jimmy's teacher. When you are dealing with a cast of a dozen characters in helping and educating your son, direct face time is scarse. It is also the most valuable thing you can have.

Allison is amazing. It is her first year teaching, yet that doesn't scare me. I think initially she was overwhelmed, but this is now her life and passion. I honestly think she wouldn't have it any other way. It can be so hard to be Jimmy's mom sometimes - I carried that boy inside me for nine months. I have loved him more fiercely than I have loved anyone in my life. I need to know the people who I turn him over too for so much of the day love and believe in him.

I have always felt that Mr. Booty (the instructional assistant) believes him and now I know Allison does too. I am thrilled. She is anxious to continue consult and working with his therapists, which I think is great. I walked out of there for the first time this year really confident in his school situation. That helps me get through everything else I have to do with my day personally and professionally. It's huge.

FAPT Today

Services were continued.  Thank God for small favors.  The school staff sent in this glowing report of progress being made without any data to support it.  Our therapist provided actual data demonstrating regression over the past several months.  I am so frustrated with the school system - I want to hear good things about how Jimmy is doing, but you can't ignore the problems and the lack of progress in some areas.  

The speech therapist has asked that the goals be modified - they were great goals, but there is no evidence of data collection in these new ones and the benchmarks have been set too low.  The reinforcement plan in the last IEP wasn't followed.  I still have not seen a BIP from either the consult or the school.  We haven't addressed the gym issue for the winter.  Looks like I get to call an IEP meeting.  

Yes, I am still here...

For a four day week, last week seemed like an eternity. The week was very long. Next week is only two and a half day, but it packed full as well. I am looking forward to having four days off over Thanksgiving. I have already broken out the Christmas cards to write, but I can't get too far until we get a photos of the boys to include.

Jimmy had a pretty good week. I got some nice notes from his teacher about how verbal he is, how much more engaged he is. I am pretty happy with his teacher this year, though I have had a rougher time getting the therapists and school on the same page. It's partly scheduling, but I think there is a certain amount of bureacracy on both sides. It gets frustrating.

Jacob continues to be Jacob. I wonder when this whole bad seed thing will pass - he makes me crazy and I really struggle with the disciplinary aspect. It is very hard for me to do, not so much as having two sets of rules, but two different approaches to negative behavior. I just feel like I can't win and I can't get it right with this kid.

Parent/Teacher Conferences

Well, I went to Jimmy's conference. They have actually moved him back on an academic track, starting him in the first grade math and reading books. He's gets one-on-one instruction, so he is doing pretty well. His PALS scores are sort of funny. There are three elements to the score - spelling, pre-primer word list, and letter sounds. Even though I have 100% spelling tests on the fridge from last year, he refused to spell anything for the assessment. He got 15 out of 20 on the pre-primer word list and 25 on the letter sounds - he wouldn't give the sound for W, even though he has done that before as well. He got 40. The fall benchmark was 39. Without performing one whole section of the test, he met the benchmark.

They actually administered the primer, 1st, and 2nd grade word lists. He got 15 primer, 16 first, and 9 second grade words correct as well on the assessment, all out of 20. Cognitively my kid is all there. It's just getting it out. We are also amending his IEP for his speech goals and the accommodations to include a weighted vest.

I have to go call out sick for tomorrow. I have almost completely lost my voice and I am running a fever. When your job is completely predicated on your ability to speak, losing your voice is sort of a problem. Getting through today was a major chore.

A new Jimmy pic for you... from a recent therapy outing to McDonald's.

Little Boy Lost

Or maybe Mom is just overtired. The consult that was approved at FAPT six weeks ago has yet to be completed. It is harder and harder to measure his progress as he makes strides in some areas and slips around in others. The school didn't even do a proper report card for him - because they are doing nothing academic with him. Again, I have no sense of what he does with his day. There is no data collected for him at school, so I have nothing tangible with which to assess his progress. I feel like the wheels are spinning and time is slipping away.

I guess the bright spot is for the second day in a row, he was asleep by 8pm. Of course, Jacob didn't let me finally go to sleep until almost 11. Hopefully, I will get to sleep a little earlier tonight.

Celebrating Post 501...

I just looked at my Blogger Dashboard and it said I had 500 posts. I am kind of amazed that I have stuck with it this long.

Today, as is everyday, was one of highs and lows, dealing with the school and therapists, a career and two boys. Jimmy said "Goodbye Taylor" to a girl who ran up and told me that she was Jimmy's friend. Everytime that sort of stuff, I sort of mist up, usually with joy, but today it was a mix of grief. Jimmy is never invited to school birthday parties. Of course, we get invited to T's parties and some of my other friends with kids, but never any from school. There is a whole life of being a normal child that he will never, ever have. That I will never, ever share with him. It is painful in a way I can't even articulate because I love him so much and wanted so much for him. I still do, but is diminished in some respect by where he is today. He's in the tub right now because he climbed in the kitchen sink and pooped, still in his dress shirt from school photos. The school photos the school secretary forgot to give Jimmy's teacher for the class of four. At Cougar, he is well known, but is seemingly invisible in so many ways. There was the bus saga. The PTO snub last year, as well as the art show. And for the second year in a row, they forgot to give his class the picture form. How is that shit not supposed to hurt? (I know a few important people read this blog and I shouldn't swear, but you would swear too!) It is a pain that isolates you in this shared experience that people of a certain age have in raising a family.

But I am proud of him. Taylor hugged him when he said goodbye. I think it was the first time that she heard his voice. The elation of the small victories saves you from the pain. Victory and my love for him saves me every day.

Another post from the old blog

March 16, 2005

In Jimmy's backpack, there is a notebook that travels with him to and from school. It's a way for the teachers and I to keep in touch. Granted, the teachers use it more than I do, because I am a yakker and I just keep those poor folks on speed dial with all my angst and worry... On Monday, the teacher started a note that took up half a page. You could tell where she had stopped writing the first time. Then she went back and added something else that he has just done. Then she did it again. It just kept getting longer. Milestones from the note:

1. He acknowledge the presence of another child by calling him by name - Riley. Note: Riley is now at the top of the list for invites to Jimmy's next birthday party. Before this, he occasionally referred to me as "Mama" and call Buster, aka Miss Kitty, "Cat." To be honest, he is better about addressing the cat than me.

2. He picked up about three new words which escape me at the moment. It's somewhat refreshing to say that I'm almost blase about this because of all the new words his picks up.

3. He has mastered drinking from straw. At 3 and a half. I know to most parents that is no big deal, but it opens up a whole new world of juice boxes for us. Once you can master the straw, you don't have to remember the sippy cup.

It's thrilling, but yet I still have these moments where I am really sad. He functions so well on so many levels, but he doesn't have the social skills to make friends or the language to convey what he thinks, how he feels. I want everything to come now and it all happens so slowly. That straw thing represents almost four months of daily effort on the part of his pre-school teachers. She has been working on it since its inclusion on the IEP. Yesterday morning, I answered the phone. A woman was on the other line. "Hi, I'm Jimmy's new therapist. I am not feeling well and can't make it today." You know, since we began therapy on February 22nd, we should have had eight sessions and we have only had three!!! The therapist was overbooked or sick or it snowed. One wound up being an evaluation session rather than therapy, which was an hour of answer questions about Jimmy can and cannot do. It's always a personal hell for me, because I am just so damn apologetic about it. It seriously makes me feel so small, less like he is on the autism spectrum and more like he is on the spectrum because I have failed him in someway. Intellectually, I know that is not the case, but emotionally it kills me every time... But I digress. It's just, I am constantly dealing with the business end of this - managing doctor's appointments, therapy appointments, teachers, daycare. I deal, I deal, I deal and somehow any joy that I should be feeling gets sucked out of the equation. I am just left with the stress and frustration.

I know how fortunate I am to have a high functioning child. I know people who deal with a much more difficult end of the spectrum. Other parents deal with children suffering life threatening illnesses - the doctor who delivered my second child, for example, has a son with cancer. That she helped me through the end of a difficult pregnancy and put my baby in my arms for the very first time, that she does this for so many women, and then has to deal with something so awful in her life pains me - it's then I truly feel like an asshole for complaining one moment about my situation. At the same time, I am stressed, frustrated, and hurting too. I have one baby I bust my ass for to get and give him the help he needs, desperately trying to be a good mother too. I have another who I wonder if he is getting enough and being completely overlooked in all of this. I have a husband that isn't as helpful as I would like him to be, but I don't even know what to ask him to do or how he could help. Maybe I am not coping as well as I should, but why does it have to be this way?

There is so much in my life, so much in the world, that is so hard, I really wonder if God exists. How could he possibly make life this hard on people? It feels pointless to pray or even hope sometimes, because it just feels so random. Like there is no plan to any of it. You are lucky or you aren't. Your kids are perfect or they are flawed. Either way, you have to deal with it. God? Sorry, you get no help from him.