I haven’t published for a bit more than a month, I’ve started a few posts and abandoned them. Each had high emotions and descriptions of broken systems. The landscape and emotions shift too quickly for me to either continue or revise. It seems like a new story every few days. The promising meeting or email results in a step back instead of two steps forward as planned.
Some highlights of the past month from where I sit today, starting with the positive because I have not been keeping the positive in my head recently:
Julia joined the cheer team. She was allowed to join as a special ed student by-passing try outs. It is the only way she could join, at least right now. She has been through two after school practices and a day-long practice camp. From now on until spring, there will be twice a week practices and weekly games. The practices are hard for her. This is the kid who had a therapy goal of going outside once a day. She’s never been physically active. Last summer was the physical best for her when we did near-daily bike rides; however, they were usually about 45 minutes long. On Saturday she was at practice from 10 until 4. The coach said that she needed and took more breaks than other kids. When we walked to the car after practice, she told me, “Mommy, I am the happiest girl in the entire world.”
The cheerleaders of my school days were not inclusive, mostly pony-tailed-skinny-blond girls. The West cheer team has kids (48 girls, 2 boys) of different body types and lots of racial diversity (not many Asians). The physical attribute that has not changed is the pony tail. Thus, my short haired girl has decided to grow her hair. She wants a pony tail and the coveted cheerleader bows. (I pointed out that the bows were nothing special and we could probably buy some at the mall. Julia would not hear of it.) Julia has lovely hair and it looks great long. I’ve kept it short so that she could take care of it herself. She does that without problems. I’m hoping that she will be able to take care of longer hair.
Watching her at cheer practice today, she is the kid who is not worried about being in the first row of any exercise even though she doesn’t ‘get it.’ (I was the kid hiding in the back until I perfected anything.) She is trying hard to concentrate and stay on task but it is clear that she will need much more practice than any of the other kids to learn these cheers. From what I’ve heard, cheers are posted online for kids to practice at home. I expect she will find them. She is also enduring a lot of noise without any ear protection–echo-y gyms, shouting team leaders, loud music accompanying exercises. She may be stubborn enough to make it all work and who couldn’t love her for trying so hard.
The big caveat here is that she cannot cheer for a game until she knows the cheers. I have no argument with this but for Julia it represents an incredibly steep learning curve.
More: Last week, and for the first time, Julia was able to play a piece in book 1 of Suzuki cello by heart. She has not be able to memorize any music before this. She took 4 years to get through book 1 which is an incredible testament to the patience of her teacher, Martha Vallon. Julia was so excited to start on book 2.
Julia continues to work with Donalee Makus. Every few weeks we visit her just outside of Chicago. We began working with her last summer on the advice of Julia’s optometrist, Deborah Zelinsky, who is an incredible innovator herself. Donalee’s exercises and games are all visual which Julia took to immediately. After working all summer, I can see her taking on visual work that is too hard for me to figure out. She has also embraced the Donalee’s math puzzles and is beginning to show an ability to manipulate numbers. When she meets with Donalee, Julia learns and challenges. I am thankful for teachers who prepared her for this work. The expectations are high but not clear. I have a belief in neuroplastisity but we are sailing in uncharted seas.
And the other stuff:
Julia has been late to school every day since school began save one, the day I drove her into school early to meet with the Special Ed Principal. Usually, she is late by at least 10 minutes. And she misses part of biology, her most challenging class. The main reason is that the bus is scheduled to pick her up too late to get to class on time. Badger Bus “can’t” just pick her up earlier which is the common sense solution. Of course, there is a host of complications and Winter is Coming! It would be most beneficial if she could get to school about 15 minutes before her first class. At this point, the only way that will happen is if I drive her. The little disability buses is a small step to independent transportation but it is a step. Given the choice between independence training and getting to school on time, school on time wins and so there is a good chance that within the month I will be driving.
Julia has been spending 3 class periods and lunch in Room 1112, a cluster classroom for special ed into which typical students never step. My bottom line and battle cry has become: I don’t want Julia spending any time in Room 1112 for so many reasons!
There is no real direct teaching in Julia’s math or English classes. Both subjects are held in Room 1112 amidst incredible chaos. Julia works on packets. There seems to be little direct teaching and no group participation. I visited Room 1112 and watched Julia do math packets which were, at best, review. She seems to do them alone of the most part surrounded by chaos. The packets are checked and handed back to her for correction. The SEA (Special Ed Assistant) who sat with her for a few minutes when I visited did not understand the math problem Julia was working on until I explained it to her. Julia gets no homework, there have been not quizzes or tests, and no papers come home.
Reading suffers from many of the same challenges as math, and I am not aware of any writing work that has been attempted or accomplished. There was a plan to switch to a supported English class on Monday, but she was marked absent from that class.
Both Study Skills and Daily Living Skills, again in Room 1112, do not address Julia’s needs. Julia has many daily living needs–she needs to learn to use and pay attention to her cell phone, to safely stay at home alone, to go places by herself, to use money and one day to ride a public bus. She could use learning how cook but in the Daily Living Skills class, cooking in that class is learning to put frozen waffles in the toaster. Really, she can do that.
If academics are not enough, Julia is copying behaviors I saw when I visited Room 1112. I’ve explained why she shouldn’t be coping these behaviors but it certainly gets attention. From me and from others. She has been in mixed classes before and has been interested in emulating kids with more typical behavior. This is the first time she’s been surrounded by kids with challenges for more than half her day. The way she sees it, in Room 1112, kids do whatever they want and are allowed to play games instead of doing math or reading. I see, and I’ve told her this, that many of the kids in Room 1112 are doing the absolute best they can. There is learning going on in Room 1112 for some of the kids there but many more should be in main stream classes with support. As for Julia’s behavior, two of her out-of-school therapists are noticing changes in her demeanor.
And, even if Julia is doing what she is supposed to be doing– filling in her work sheets–she needs to close down the noise and chaos of the room and concentrate on her assigned work. Julia does not need this skill reinforced. She is very willing to spend all her time closed to what is going on around her and doing some work, usually drawing. I also wonder how much of the time, she turns over her worksheets and draws. Certainly, she tried to do that every chance she had in middle school.
I’ve met with teachers, Julia’s Case Manager, the Special Ed Principal, the Special Education – Program Support Teacher and the Principal. I’ve spoken by phone to two Badger Bus people — the dispatcher and his supervisor. I called an IEP in September to work out what she needed in biology; I’ve asked for another IEP to get her to school on time and get her out of Room 1112. That one is not scheduled yet and it would be so nice to cancel the request. I’ve written enough email for a few chapters is a cheap novel.
The work of Julia’s special ed advocate has become close to full time. Every day, there is someone to talk to, a slew of email to write and a few phone calls to make. I took a weekend off two weeks ago and the change in my stress level was astonishing. I’ve begun to imagine myself as St. Joan although I’m waiting for the French army to show up. Whether I am burned at the stake or not, it still up in the air. I know, a bit dramatic.
And then at home, I am finding Julia to be incredibly frustrating at times, and sometimes I wonder if fighting for her to be in main stream classes is worth all the fuss. I am making lots of waves. I take up time and energy of all the people I talk to and email. I say I firmly believe that she will benefit by being supported in challenging mainstream classes; however, that belief is hard to hold onto 3 minutes before the bus is due to arrive when breakfast is not eaten, sneakers have disappeared and there are no pencils in her backpack. I know part of that is being a teenager but 16 and autism is wicked. Today, we got out of bed 15 minutes before our first alarm usually goes off. It was a better morning, even though Julia hates getting up. I know lots of parents of typical kids will think they understand morning madness, but it takes on added anxiety when the mom has been fighting constantly and hard for the bus to be there on time. My argument that Julia needs to be at school on time is somewhat diminished if Julia is the one not ready to get on the bus.
And finally, my mood has been awful. I am not the happy warrior mom. I would say ‘like I used to be’ but I wonder if I ever was. I find myself whinny, frustrated, irritated, yelling and frowning most of the time. Being angry is my default response to all stimulus. Tucked into that default is loneliness because there is no one to share all this but being angry all the time couldn’t be more unattractive. I would prefer not to spend time with this moody warrior. Who could blame anyone staying away?
Between ranting and advocating, I’ve managed to do some garden cleaning and some work on the dining room cabinet, but working creatively has been elusive. How much joy do I need to be creative? More than I can summon up right now.
A long time ago now, an old friend said that I was not a good friend because I did not have the “bandwidth” to deal with anyone but Julia. Back in the long time ago, I swore it wasn’t the case. Today, now, she would be right on. 100%
Tuesday now: After a long night’s sleep-turned out the light at 9:30 and an easier morning launch of the kid, persistence kicks in. Once again. During morning sit, I was distracted by creative thoughts which made me smile.