When Words Are Hard to Come By

GB was scheduled to be in school for two hours today- 8:15 to 10:15. I chose to keep her home and talk about how difficult everything has been for her lately. She reminded me that she could now do a cartwheel AND a handstand on the balance beam and that she thought she was going to make gymnastic her life. I agreed that her hard work in gymnastics was paying off and she was getting better at it all the time.

She was quiet for a bit. She told me she works very hard in school and she was not getting better at it. The Dad told her that it was very hard for her because the program had changed. It was no longer the best program for her. Then The Dad told GB her new teacher wore high heels. GB immediately brightened up and said “That’s awesome”.


We went to GB’s CSE today. I showed up with my printed agendas, not knowing what I wanted. The people around the table read my agenda and unanimously agreed with everything on it. It seems that the state changed the requirements and what GB’s class is doing is driven by state requirements and totally unrelated to what they did the two good years she had in the class. The bottom line is GB’s IQ of 71. They want to move her out of the academic track into a life skills class- for kids who will not be able to earn a diploma. We agreed on a 30 day trial to start January 2, 2013. GB will transition over the next three weeks. She will change to a third school. change teachers and aides and all service providers.

I am sad, close to tears and over the top angry. GB has to make yet another transition, my baby is being labeled mentally handicapped, and it is all because her birthmother couldn’t be bothered to deal with life without alcohol.

It Worked!

I wrote about our attempt to treat GB’s primary enuresis by chiropractor  in https://adoptingspecialneeds.wordpress.com/2012/09/18/did-you-know/ . We are down to visiting the chiropractor once a week. GB has had four dry nights in a row. I knew that leaking through the pull-ups had been bothering her. I hadn’t realized how  much it was bothering her until she asked me this morning when she could stop wearing the pull-ups.

After thinking about it, I told GB she could stop wearing pull-ups whenever she wants. I am sure she is making progress and her happiness and confidence is just glowing. I am delighted I gave a new (to me) idea a chance and it worked out so well.

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.

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.

World FASD Awareness Day

Today is World FASD Awareness Day. My granddaughter/ adopted daughter has FAS. She is loving, joyful, and the hardest worker I know. It is so difficult to watch her struggle and know the brain damage that causes her struggles was 100% preventable. Her birth mother choose to binge drink throughout her pregnancy. GB and I went out to lunch today and talked about World FASD Awareness Day. We talked about the woman we know who are pregnant. She asked if she could write in my blog and post on Face Book. This is what she wanted to say:

Please all pregnant mothers: take care of your unborn babies. Don’t drink alcohol. Don’t smoke. Eat healthy food. I wish my birth mother had.

GB is awesome despite the struggles prenatal alcohol exposure caused. I hope, someday, FASD is a thing of the past.

Not Worrying About My Radlet

 Hope’s massive team meeting, set up by ICM will take place tomorrow, sans outside therapist. I have no expectations of actually getting help from this meeting, so there is no energy going into it.

I am concerned about GB. She came home with mixed feelings about spending time with her birth father. J was very unpredictable relating to her and did not do well with X. GB and X unabashedly enjoyed the time they spent together and were not happy to part.

Since we have been home, GB has requested extra cuddle time and several times has fallen asleep in my arms. She seems much more sensitive to Hope’s nasty remarks, which Hope tries to save for when no one is listening. I know GB needs more support and I am at a loss as how to provide it. There are many supports available for children with autism, but my gut feel is that the processing difficulties from the FASD is behind most of GB’s current struggles. Support for FASD is non-existent in my area.

I also have to admit I am not keen on leaving her for the Parenting in Space  weekend in less then two weeks.

GB’s needs get lost in the chaos RAD brings to our lives.

Finally! GB’s CSE

The RTI Model

Today, at 9 am, we finally had GB’s CSE. We added an extra individual counseling without any disagreement. Then we tackled the meeting of social needs and the reading gaps left by the disastrous year in first grade. The elementary school GB attends uses RTI (response to intervention) to determine whether a child is learning disabled. It is now mandated to be one of the approaches a school in NY uses to classify a student as learning disabled. I know quite a bit about RTI because I worked closely with on of its originators, Frank Vellutino, PhD, during my doctoral program.

The theory is that a lot of students struggling to read are struggling because they have not been exposed to high quality teaching using empirically proven teaching methods. It is a three tier system. Tier one is for all students, making sure that their teachers are correctly using proven learning to read programs. GB’s first grade teacher was not. Once the teachers are doing this, all students are given diagnostic testing which not only pinpoints which students are not mastering the material, but also which parts of the reading process they are struggling with. These students are placed in tier 2 interventions.

Tier 2 interventions are administered by specially trained reading instructors and take place in small groups of 3 to  5 students, who are reading on the same level and struggling with the same parts of the reading process. Most students spend 6 to 24 months in Tier 2 interventions, after which they are reading at or above grade level. Students who do not respond to Tier 2 interventions are moved to Tier 3. Tier 3 interventions are both more frequent and highly individual. Children needing Tier 3 interventions usually end up classified as Learning Disabled and continue to receive highly individualized instruction.

GB will be given the diagnostic testing this week and will be placed in a small group, which meets everyday, for reading instruction. Depending on the results of the diagnostic testing, she will be placed with  2nd and third graders who are functioning socially at an age appropriate level.

We will have a program review in the end of October to monitor if what we are doing is meeting her needs. I should have the testing results by the end of the week.

We also discussed changing GB’s classification. Right now, she is classified as OHI (Other Health Impaired). She will probably be reclassified as autistic, since the older she gets, the more the autism seems to dominate. Classifying her autistic also gives us access to the broadest range of services.

The Juggler: I Just Do Not Know if I Can…

GB got off the bus Friday and said the aide yelled at her to knock it off and hit her leg. I immediately took Hope aside and asked her what she saw. She told me as GB was getting off the bus, and the aide hit her leg. I called the bus company. The owner  called me back  late Friday night and said he spoke to both the aide and the driver and they both said nothing happened and he was backing them. He said “The aide said GB was a fibber”. I said GB might misinterpret the situation, but if she said the aide hit her leg and Hope independently said the same thing, then physical contact was made. He said ” I am telling you, I am backing my people. I have known them a long time and they would never do anything like this”

I am so angry, I want to tear the people involved into a billion very tiny pieces. I am also so tired. I don’t know if I have it in me to deal with all the ignorant people I would have to deal with. I am looking at Monday’s calendar, wondering where I can squeeze in time to actually speak to the people involved and to the people responsible for their actions.  I have to figure out what complaint forms need to be filled out to go with my written letter of complaint. In order to actually get a response from the school district, I know I will have to escalate  to the State Education Department. Been there, done that.

I know what I should do. I know what I want to do. I am concerned that if I do it, that’s one more ball in the air. That ball maybe the ball that pushes me beyond what I can do. It may the ball that causes me to drop all the balls I have been juggling for so long. What use is a juggler that can’t keep the balls in the air?