CSE Addeneum

Thursday afternoon, I received the following email from the Director of Special Education.

GBsMom~ It was brought to my attention after yesterday’s CSE program review for GB that you may have been audio recording with your phone. This is not a problem. I just ask that you let me know in the future so that I can also have the appropriate tools  available to also do an audio recording. If this was not the case, I hope you understand that a member of the team was  only concerned that we were not being given the same opportunity.
I wasn’t recording anything. GB’s CSE was quick and pleasant. Everybody who spoke added to the overall atmosphere of “Gee, isn’t great how well GB is doing”. The only one who didn’t was the school psychologist. He didn’t say anything at all. After emailing the Director of Special Education that I had not and was curious as to who came up with such a paranoid idea, she sent me this email:
GBsMom~Thanks for getting back to me on this issue. I was so glad to hear how well GB is doing this year!
Director of Special Education
I am sitting here shaking my head. There are “issues” even when CSE meeting are uneventful. Such is life.

Five Hours of Peace

It was pouring outside. I was lucky- there was a parking space right next to the door. I walk down the hall to the blue elevator and take it to the second floor. Stopping at the nursing station, I learn dialysis is running late. When I enter the room, he is asleep. I put my chair in place and settle down. The TV, as always, murmurs in the background. It seems like his arms are thinner than last time and his face more swollen, a side effect of the drugs. I put my hand gently next him, not sure how bad the pain is today. I watch him breathe, comforted by the evenness of the breaths. I sit for awhile, comfortable, waiting until he wakes up. I have a book to read, but leave it closed. All the stress slowly leaves my body.

His hand moves and covers mine. It is warm and soft. I half notice the background noise has changed from football to golf. I smile, thinking that I had never seen the point of watching a golf game. He has always liked his sports. His eyes open. “You’re here”, he says. I use my fingers to lightly draw curlicues  on his forearm, watching his face to make sure I am not causing pain. The nurse enters to give him his morphine. She gives me a quick look that says “Rough night”.  The endocrinologist comes in. He glances at his patient and tells me they have to lower his insulin, because he is eating so little. Then we are alone again. I go back to to drawing my curlicues, concentrating on using enough pressure that he feels them, without using so much that it becomes painful. Touch is so important.

His eyes open.” You’re here”, he says.”That feels so good”. I smile. He is not the first dying person I have sat with. They all want the warmth of touch. His eyes catch mine and hold them. “How long can you stay?” I keep my voice soft. “Until I have to get GB off the bus”. His eyes close again. We hold hands for a long while. Tears  leak from his eyes. I ask him for a number- the hospital code for pain. “7” he says. The goal is to keep him under a 5. I buzz for the nurse and ask her to give him his dilaudid. I know we are an hour away from another dose of morphine. The dilaudid goes through his PIC line and his face relaxes. His hand reaches for me and I take it. “I am glad you’re here”, he says. “So am I”, I answer. Too soon, it is time to leave. I kiss his forehead gently and tell him I have to go. He says, “You’ll come back.” It is not a question.

Sometimes, It Is the Little Things

With two CSE meetings and therapy, I wasn’t expecting much from today. While waiting with GB for the bus this morning, I noticed a blue sky, with sunshine and light cotton candy clouds. The air was cool, but not cold. The silence before Hope and Joe came down was soothing.

Hope’s CSE didn’t go very well. I let The Dad run it and only contributed data on medication. Mary Poppins was there and the SPOA worker was there. Mary Poppins started her unicorns and rainbow crap and I worked on my breathing. I looked up and Mrs VY Teacher caught my eye and mouthed “Hope has her number”. None of what I wanted was approved, but I knew before the meeting that it wouldn’t happen unless I got involved. I didn’t.

GB’s CSE meeting was 30 minutes later and five miles away. It was a different world. I did not let Mary Poppins come and when the chairperson looked at Joe and I and asked who was running this meeting, I said I was. GB is doing well. They approved 45 minutes a day with the reading specialist, the OT had a sensory diet all set up. GB had shared with all of them how difficult it was living with Hope and the therapist suggested adding another weekly counseling session to her program. Homework was straightened out, as were testing modifications. GB is doing well and everybody was delighted.

I went to EMDR right after GB’s meeting.  It wasn’t fun, but it seemed to go quickly. MK wanted to start Halloween early. I went to the dollar store with her to add a little to our decorations and GB helped MK put them up. Hope and Mali helped MK make our first Halloween  dessert of the year. The Dad took GB to gymnastics and the open house at her school tonight.

The sun is setting and everything is quiet. It is still warm enough to sit on the deck with a cup of hot tea. Sometimes it is the little things.


Today is a quiet day. GB had book fair today and she was eager to get to school. I left for acupuncture as soon as GB was on the bus. The Dad took care of Hope and put her on the bus. I briefly wondered if Hope had taken the right medication, but I shook the thought off. I have not answered any calls from any of the people that work with Hope. After acupuncture, I took three hours to sit with an old friend at the hospital. Today was a good day for him and we enjoyed ourselves.

GB was approved for waiver services because of her developmental disability. I don’t actually have a medicaid card for her, but I do have a paper saying she was approved and that the card will be coming. Two years this took. It will be another 3 months before we can actually apply for services. I ran an ad on Graig*s list, saying I was looking for a special ed/psychology masters student to spend 3 – 10 hours a week with GB, starting with teaching her to ride a two wheeler. I was surprised at the number of replies I received. One of the responders was a special ed teacher who played softball in the league I ran for 10 years. She was a kind, reliable, athletic kid and her parents were really nice people. She comes Saturday to meet GB. With all the people taking Hope out and buying her stuff, I want GB to have some of that even though she is not a behavior problem.

Yesterday, The Dad took GB and Hope to Friendly*s for dinner. Mary Poppins just happened to be there. Hope chose to have a granddaddy of a meltdown. Karma? Maybe.

I am still numb after yesterday, and do not know how to feel or what to think. I see my therapist tomorrow.

Mary, Joseph, and the Shrink

Our latest worker, aptly called Mary Poppins by my friend, came to see the shrink with us this morning. I knew Mary Poppins was clueless and I planned on calling her supervisor this afternoon and either getting a different worker or discontinuing the agencies services.

The shrink was pleased with how well GB was doing and Mary sat there quietly. That took 10 minutes of our hour. The other 50 minutes were devoted to Hope. Honestly, I am not quite sure how everything fell apart, but when we were done with Hope, the SPOA application was put on hold, Hope was off the anxiety medication and we were coming back in three weeks.

Nothing has changed with Hope’s behavior. When she is interacting with me it has actually gotten worse. I feel like not only wasn’t I being heard by Mary, but now I was also not being heard at the shrink’s. Joe (The Dad) won’t talk about anything beyond “now”. I am not willing to waste another three weeks with everything staying the same or getting worse. Last week, Hope’s service providers took 12 hours of my time, plus numerous phone calls to arrange details. With SPOA paperwork derailed, there will be no RTF or RTC this year. Life will just go on.

I can not and will not do it anymore. Joe has Hope. I will no longer discuss Hope, answer calls about Hope, go to meetings about Hope, make plans concerning Hope, or schedule Hope’s appointments. I won’t even call to get Mary Poppins replaced.

All our services for Hope are time sensitive. We are midway through our time allotted for all our outside help. Nothing has changed. Reams of paperwork filled out, endless hours of meetings and therapy, and nothing is better. I am willing to work hard for Hope to become a functioning part of our family. I am done playing the system’s games.

And if that brings out the Trolls, makes me evil or a failure, so be it. I am already screwed.

Therapy to Rider

GB had hippo-therapy years ago. She absolutely loved it. I wasn’t sure how much benefit GB was getting out of it, but the joy on her face kept me schlepping the hour and a half round trip every week. Then my mom got sick, and there was no time any more. A love of horses had been planted.

GB found the television show “The Saddle Club” about girls in Australia who loved to ride and hung out at a stable. It was on PBS and she saw every episode dozens of times. This year her reading advanced enough that she started reading the books. We were looking for outside the home activities that would engage her. She asked to go back to horseback riding. Hippo-therapy was not as good a match. GB adapts much better to new ideas than she did back then and after watching “The Saddle Club”, that is the experience she wanted. She had also ridden a horse on the beaches of Grand Turk when she was six (by herself, but with difficulty) and taken trail rides at a resort when she was eight (easily).

With much angst, we decided to let her try to fit into the world she wanted so badly. We signed her up for an assessment at the local stable. The instructor sent her into the stable to tell the girls she needed “Sally”. The girls took her to Sally, who was a chestnut horse. They showed her two different kinds of grooming brushes, how to use them, and helped her groom the horse. The girls showed GB where Sally’s pad, saddle, and tack were kept and how to put them on. GB led Sally back to the ring and her trial lesson began. She listened carefully to what the instructor did. She remembered lot of what she had learned when she was younger and beamed the whole lesson.

GB will be a riding student at the local stable- just one of the girls. I am praying it works out… she wants it so much.

Tower of Babel

We have all the support we can get for Hope. There are six professionals- one shrink, 2 therapists, 3 workers- and none of them agree on how to help Hope, much less on what the next step should be. I interact with each of these people and I am unable to keep who said what straight. I have tried to pin them down via email summaries, but two of them flat out refuse to do emails.

Hope has still not been alone with me since the end of August. I have not been attacked. Most people are thrilled at this huge progress. It doesn’t excite me. I AM happy my body is healing and I have been able to have some mother-daughter interactions with her. But the core problem is there. Nobody has even tried to work on Hope’s physical aggression. One worker hands her ultimatums, another worker reasons with her,and the third worker believes that at almost seven, Hope is too young to deal with these issues and I have to work on letting what happens on one day flow through me and start fresh the next day.

I am close to overwhelmed again. I see my own therapist tomorrow.

Did You Know?

GB is FASD (Fetal Alcohol Spectrum Disorder). FASD is a developmental disability and there are many skills that GB hasn’t developed yet. One was the ability to stay dry at night. She wears pull-ups and since it never bothered her, it never hit the radar screen. A couple of months ago, Hope started telling GB’s friends that she wet the bed. By the end of the summer, it was bothering GB and had become an issue. It made the radar screen.

My sister has an autistic son. When he was seventeen, he was still wetting the bed. She heard from a friend that a chiropractor could help. She took him to see a chiropractor. After a couple of months, it was no longer an issue.

GB has seen a chiropractor 2x a week for the past three weeks. She is now dry in the morning more than 60% of the time. We go down to once a week next week. The chiropractor estimates that within two months, bed wetting will not be one of GB’s issues.

I never consider using a chiropractor to treat a child and I certainly never considered that it might help bed wetting. But it seems to be working. I put this out there for those parents who’s child suffers from primary enuresis. Maybe it will work for your child, too.

A Change of Pace

This weekend I spent my time with MK and my grandson Malachi. We went to story time, had lunch, did crafts at the library, went swimming, did the food shopping and read books. I was exhausted, but they were happy. I enjoyed giving them some undivided attention and they ate it up.