Therapy Update

On Tuesday, I spent 25 minutes talking with the girls therapist without either of them present. The therapist was pleased with how well grounded in reality GB is at this time. The therapist prescribed TLC when GB starts to get overwhelmed and suggested I never leave GB alone with Hope (Duh).


Hope is struggling and while the therapist was pleased Hope and I will get bonding time this weekend, she is more interested in how Hope reacts when it is just me and nobody to triangulate. We see the psychiatrist Monday and the therapist and I are both confident that the Abilify, while helping, does not keep Hope stable enough that we can work on her issues.


Besides the door alarm, we now have a lock box for all medication.

The girls both have CSE meetings on Monday afternoon. GB's should be quick and easy. Hope's will probably not come up with an appropriate IEP and will have to be tabled. Reading up on Wrightlaw's Smart IEP goals.

Things I Didn't Know

• There was a court ruling that said "teacher observation" is an inadequate way to determine whether a goal has been met or not.
• There has to be a well defined, easily accessible (for parents) method of determining necessity of an Extended Year Program. Regression is not the only criteria they can use to determine eligibility.
• There have been requirements for adequate teacher training since 2004. This includes training particular to your child's disability(ies).
• IDEA 2004  raises the quality of  FAPE. NCLB actually did accomplish something.
• I didn't know you had to save up Mojo before an important meeting. I smiled sweetly Friday. I will spend the  next 4 weeks, until we reconvene, lining up my ducks.

Hope's CSE

We had a CSE for Hope this morning. It was the first one for Hope without Mrs. V.S. Chairperson. Everybody was prepared with the materials needed. The speech therapist went over the speech eval done on Hope over the summer. She provided detailed information and well formulated goals for Hope's IEP. Hope teacher discussed where Hope was in the process of learning to read and said right now, Hope requires her one on one involvement to read. Nobody at the meeting seemed aware of district standards to be promoted to first grade. Mrs. Director will find out before we meet again.

I have 6 week programs reviews scheduled for both girls, back to back. I can't believe how smoothly this year is progressing. Not at all the black sinkhole of energy it was last year. Thank you, God! I really appreciate it!

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.

Forced Patience

I received a call from the Director of Special Education late yesterday afternoon. Due to more flooding, schools will closed today and tomorrow. GB's CSE meeting is 9 AM Monday. So I will take my patience panties out and wait. On the brighter side, I now have four extra days to come up with my list of things I want for GB.

My mother always said patience was something you develop. The older I get, the less I seem to have. Oh well.

Patience, my A&&

The Director of Special Education was suppose to call me yesterday to set up a CSE on GB THIS week. She didn't. I stopped by her office and called three times... nothing. This morning, I called the office and refused to take no for an answer. The secretary finally came back and said the Director said GB would have the same placement, a new reading program and it was unnecessary for the CSE to meet. The secretary said if I disagreed, I should leave a voice mail with Mrs. Very Stupid Chairperson.  My concerns had N.O.T.H.I.N.G to do with reading. I told the secretary I want a CSE meeting THIS week, with the Director as the Chairperson. It is already Wednesday, but that is not my problem. Two days into the school year, and my blood pressure is sky high.

I hear my mother's voice , echoing in my head, "Patience is a virtue". Patience, my A&&, I am going to kill somebody. Sigh. Or at least spend lots of money hiring a lawyer again. It shouldn't be this hard.

New posts on old blog.

Good Night, Irene

Thanks to Hurricane Irene, there was no CSE this morning. We had no real problems. Lost internet, cable and our land line. Have zillions of reasonably small branches all over the yard and a pool filled to the brim. However, all around us, rivers and creeks overflowed, trees went down, roads were washed away. Most people in my county still have no power. The school has no power.

The Director of Special Education has no idea of how to meet GB's needs in district. GB has decided she wants to be home schooled. That won't meet her social needs at all.

The Dad is going away, so there will be no CSE before school starts in a week. I am not happy.

Incidentally, I wanted to thank everybody who responded to my last post. Before I cried, I went through my usual you-are-ours-forever spiel, but it didn't seem like enough. I finally told her she couldn't leave until she was old like me. There was clear disbelief on her face that slowly changed to a smile. I am not naive enough to think the abandonment issue is resolved, but I am hopeful that we took a tiny step in the right direction.

Go Figure...

I hate to start a post with the obvious- but today it is the only way to start. In general, children with special needs do not outgrow them. I have great hope (pun intended) that my RADlet will be able to overcome and compensate for her trauma based start on life. Even if she does, though, it will always be a part of her. GB is Bipolar, FASD, and Autistic, with 5 months of early trauma thrown in. It is part of who she. Her coping skills have improved and will continue to improve. It will not change the way her brain works, the way she learns things, or heal the physically damaged parts of her brain.

Seems obvious. So I am wondering why I received an email today from Mrs. Very Stupid Chairperson today, saying that since GB was doing so well, I might want to consider mainstreaming her again. She isn't even our chairperson any more. I thought about all the-rooted-in-reality facts I could give her. Then I realized, since she is not our chairperson anymore, I don't owe her any explanations. I emailed her back one word. "No".

That ended that. I am still left here wondering how many other people in our society thinks that, with help, GB will be NT or "normal". Meeting with the CSE tomorrow. How many  of those people have the same misconception?

Taking Care of My Girls or Fighting With the District

I met with the Director of Special Education this afternoon. I brought these notes with me.

Transportation
    
     Problem

    current aide is assigned one on one with another child
    both my children said she touched my eight year old autistic daughter
    aide got off the bus and went 50+ feet up my driveway to tell me she didn’t touch  no kid
    my daughter is afraid to ride the bus with this aide.

     Attempted remedies

    Contacted bus company who said my kid was a “fibber”
    Contacted school principal
    Contacted Director of Special Education
    Contacted Ass. Superintendent: after being given two weeks to deal with  difficulty, said he was unable to help and I should “do what I have to do”

     Immediate acceptable remedies

    Aide replaced on bus
    children moved to different route

     Systemic Remedy

    Every adult who comes in contact with my child, including bus drivers and aides, needs to be provided  with training, by professional trainers, on Fetal  Alcohol Spectrum Disorders and Autistic Spectrum Disorders.

 

CSE Chairperson, Mrs. Very Stupid Chairperson

       Problem

    Does not follow NYS Regulations
    Presents inaccurate information as fact
    Presents her opinion as fact (ex, my daughter is not developmentally disabled, Bipolar is the diagnosis of the decade)
    Decisions are determined before CSE meeting
    Has a multiple year history of trying to deny my child her FAPE


      Attempted remedies

     Have tried working with the Director of Special Education  to work around Mrs. V. S. Chairperson. Takes many weeks and concerted effort to get my  concerns even addressed. In the mean time, my children are denied necessary services

     Immediate Acceptable Remedies

    Director of Special Education to act as Chairperson for both of my children, effective immediately.

   Systemic Remedy

   Mrs. V.S. Chairperson needs to either be trained on the regulations governing a CSE and how to run a CSE meeting or she needs to be replaced as Chairperson of CSE.


The meeting lasted 15 minutes. The Director of Special Ed agreed to chair my girls meetings. She also agreed to add individual speech to the 2 groups Hope gets weekly. She suggested that  she ride with my girls and try to solve the problem. If that doesn't work, she suggested adding an aide just for my girls to make sure there were no further problems. I didn't even have to hire a lawyer.

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.

Persistance Pays Off!

Today was my grandson's, X, CSE. After two years and a half dozen meetings, it finally happened. X was deemed eligible for special education services. We had visited this before, but my son kept leaving the meetings with nothing and refused to teleconference me in. In dealing with adult special needs children, a lot of the same methods work. You need to know what you want, articulate it clearly, be persistent, and not take your eye off your ultimate goal. You also need to recognize when you have leverage and be willing to use it.

Shortly after Christmas, my son started talking about us visiting Michigan for Easter. I told him it was possible, but I needed to see my grandson classified for special ed and I needed to monitor the process to satisfy myself that everything was in order. Every time he asked, that was the response he got. When his wife asked about Easter, that was the response she got. Two weeks ago X's CSE was scheduled for today. Last weekend, I received a copy of the evaluations to be used for this meeting. Last night, I received a copy of the proposed IEP. This morning, at 7 am, I was teleconferenced in.

I only stuck my two cents in twice. On the Connor Scale (a frequently used, norm-referenced, behavior  checklist), Aggression was very elevated. Yet on the IEP, where they list areas taken into consideration for this IEP, Behavioral Interventions wasn't checked. I asked for an explanation. They told me that X was not a behavior problem. I did not bother pointing out all the physical things he had done, such as kicking the teacher and pinching little girl's butts, but rather asked how he scored so high in aggression on the Connor's scale. They had no answer. I insisted that it be put in his IEP that any behavioral problems will automatically invoke a Behavior Assessment Plan.

The district ended up offering 8 30 minute periods of resource support a week to X. This isn't going to cut it,  but they have a benchmark in place for the end of the year. They say X will have mastered 60 of the 110 sight words required by the end of first grade. When that doesn't happen, the committee can be reconvened to examine why this benchmark wasn't met.

I told the kids to sign it. At least he is classified. We can get it on the right services later.

So I will be in Michigan for Easter!

GB's Annual Review 2011

Today was GB's Annual Review. I brought my big girl's panties with me and a determination to keep the meeting civil, regardless of what Mrs. Very Stupid Chairperson did.

Usually, in CSE meetings in our district, parents start out by saying what they want. I was very non-committal and said I wanted to hear everybody else first. Mr. Teacher went first and said his class was a very good fit for GB's needs. He also said that besides recommending that she stay in his class, he would like to have her for the six week summer program. We agreed that as long as he was teaching it, so that she wouldn't have to adjust to a new teacher for six weeks, we would agree to it.

Mrs. Speech Therapist was next. She recommended adding  an additional speech therapy to work on scripts to help GB organize her thoughts when trying to communicate specific ideas. She also recommended making the social groups part of GB's IEP. Way to go, Mrs. Speech Therapist!

Mrs. OT (Occupational Therapist) went next. She had a two page report that documented how GB's disabilities affect her learning in a class room environment. She also documented delays greater than 1 SD in fine motor skills, manual dexterity, and motor planning. She added an additional OT session to GB's IEP. Mrs. OT rocks.

Mrs. SW (Social Worker) went next. She said GB was starting to open up and she would like to take advantage of this by adding a session. Thank you, Mrs. SW.

Great stuff and I hadn't even opened my mouth yet. Then came my turn. I want door to door busing. I refused to agree to anything else. The Dad played good cop to my bad cop. I had lots of support from everybody but Mrs. Very Stupid Chairperson. She said it was illegal and kept repeating herself over and over. I refused to sign off, the Dad encouraged her to contact the bus company. I think I will call a lawyer tomorrow and get educated about the special ed transportation law.

All in all, a good start.

Hope's Program Review and Annual Review

God IS good!  I have not been to a more productive CSE meeting in a very long time. We agreed on behavioral standards and enforcing consequences in the same manner.  My testing and Ms. VY Teacher's testing came up with essentially the same results. Ms VY Teacher agreed with what we wanted at every step. Hope will be going to summer school with district transportation, and the same social worker and teacher.

In September, Hope will again be in Kindergarten, in an 1:8:2 class, with only K and 1st grade children in it. Mrs. VY Teacher will be her teacher again. I think this is good, as we will not have to waste time with a honeymoon period again. We had the daily communication log written into the IEP, as well as quarterly Program Reviews.

Hope can now count up to five objects in a group independently. She still can't tell you there are two cookies on her plate unless she counts them, and if there are more then five objects in a group, she loses her one-to-on correspondence. She recognizes 20 upper case letters, 16 lower case letters, and knows the sound 5 letters make. Hope needs to copy or trace letters; she can't write them from memory, not even her name. She can not recognize the first sound in a word, unless the word is Hope. She does not hear rhyming sounds. But there is lots of time between now and September.

We really weren't interested in her academics this year, and maybe she will be ready in September to start the Kindergarten Curriculum.

CSE Update

Squeaky wheels do get greased. Hope's CSE meeting is one week from tomorrow. Time to start working on my agenda. I think I'll take advantage of the next 2 snow days to do some testing of my own.

GB passed her EKG and we started transitioning to  Geodon tonight.

New post on other blog; MK and Booboo update.

V.S. Chairperson

Yesterday I received the following email in response to my request to have a program review for Hope.

Dear GB's Mom,

I am currently doing annual review meetings all day, every day. I can not do a program review.  It is  possible that Hope's annual review will be soon because I know that I have at least one day with  Ms. V.Y. Teacher coming up fairly soon.

Very Stupid Chairperson, PhD

I answered her email this morning and blind copied (thanks to The Dad, I know how to do this now) Mrs. Director of Special Education.


Dear  Very Stupid,

While it is obvious that deciding a kindergartner's placement for 8 months from now (note: we are still in the month of January) is an urgent matter, my concerns about my child's placement as of this moment are just going to have to be fit in. I know that you do not believe that Reactive Attachment Disorder exists, but that is currently irrelevant. An excellent psychiatrist, who works for the Country Renown Childrens Home, has completed a psychiatric examination on Hope and that is the diagnoses we were given. This psychiatrist says Hope is triangulating everyone she comes in contact with. You may not understand how triangulation works, but that is also OK. I am very willing to help the committee rewrite her IEP, so that it both meets legal requirements and Hope's needs. If this really can't be fit in your schedule now, I will be filing a claim of IEP insufficiency with NYSED  in the beginning of the week. The lawyer we used for GB is currently available to assure Hope gets a FAPE. I hope somebody has time to consider this matter over the weekend.

Sincerely,

GB's Mom,  Doctoral Candidate


Less than 15 minutes after I sent this email, I received a call from Mrs Director of Special Education. She asked specific questions about my concerns and requested I not do anything until she had a chance to investigate. She is suppose to call me back Tuesday.  I will wait and see.

Yesterday, I got the neuropsych report, the one that expressly says GB is on the autistic spectrum. Her IQ dropped 18 points, according to the WISC-IV, in the last13 months. On AXIS I her diagnoses were 1. Asperger's Disorder 2. Bipolar Disorder 3. Mathematics Disorder. On AXIS III her diagnosis was Fetal Alcohol Spectrum Disorder. The report said a lot more (11 pages worth), but there were no glaring errors. Everything they said about her sounded exactly like GB. As she wasn't psychotic when this testing was done, it should be an accurate picture of what GB's functioning is when the Bipolar is stable.

I guess it is good I received the report yesterday, as today @ 1:30 is a CSE meeting on GB, for a program review. I also took my head out of the sand long enough to set up an intake appointment with the DDSO for our region. I spoke to the intake worker for over thirty minutes and she said she is sure GB will qualify for  services permanently from DDSO. She is coming over Monday to start the paper work.

For now, I plan on keeping my head out of the sand long enough to get what GB needs from the school. By bedtime, I may have to bury it in the sand , again, just to sleep.

School Updates

Today was the first day of school in 2011 and for Hope it started out on an optimistic note. Her class has has a new social worker/ therapist, who trained under the private therapist Hope is seeing once a week AND has multiple years of experience treating kids with RAD. And if that wasn't enough good news for one day, somebody (besides me) noticed that Hope's teacher was struggling and not all the student's needs were getting met. It hasn't been approved by the school board yet, but they are looking at a proposal to divide Hope's class (12 kids) in half and change the 12:1:2 class to two 6:1:1 classes.This would take  place by the end of January.

GB started 5 mg of Zyprexa yesterday, and today she was a bit more stable. Maybe just a coincidence, but I am allowing myself a little optimism. I have a CSE meeting on GB Thursday, to add the services the George Jarvis Clinic recommended when they said she was autistic back in November. I was told I had to reduce the stress in my life because of my neurological problems, so I already sent an email to the Director of Special Education, warning her that if they could not provide the new services that GB's new diagnoses of Autism would require, I would be hiring the same educational lawyer I hired in 2008.

Another Round with Mrs. Chairperson

We had a CSE meeting for Hope this morning. I went alone, because the Dad is in England. It was short and productive. They started 15 minutes behind schedule and I was not going to spend all morning with this nonsense. Mrs. Chairperson was very busy writing notes from the previous meeting and I was tired of waiting. I asked the PT to start. He said Hope was borderline in her abilities and rather taking her out of the class at this point, he would rather retest her in the spring.  Next was Meg, OT, who I knew because she has GB. She had the same opinion has the PT- retest in the spring. Finally it was the SLP 's turn. She said Hope's speech was that of a much younger child. When Mrs. Chairperson suggest retesting Hope in the spring, SLP said we need to do it now. Hope will be getting speech 3 X a week. The Therapist from Rockland County Children's  Psychiatric Hospital, noted that Hope has a lot of anger, and under the anger was even more fear. He said she was in the right placement.

Mrs. Chairperson wanted Hope to be mainstreamed. I agreed as long as it was during free play and an aide from her class was present. We went on to the IEP and the first goal that went in was that everybody who had contact with Hope was to maintain appropriate boundaries. Mrs. Chairperson objected because the committee could not educate everybody on what appropriate boundaries were. My answer was there should be somebody with Hope at all times who could enforce appropriate boundaries.

Then it was Ms.VY Teacher's turn. She said the last three weeks, Hope's true colors have come out. I asked her why the daily communication book had been coming home empty. She look embarrassed and said she was unable to find words that really fit what was happening with Hope in her classroom. None of it was particularly awful, but by the time the day was over, she had a headache and couldn't wait for Hope to leave.  I handed her my Teacher's Rad Handout (for the second time) and suggested she and her aides read it. It was closer to success than I thought possible. I am content.

This is My CSE (Again)

Today was Hope's CSE (Committee for Special Education) meeting, run by the densest psychologist in the world. It started at 9 am and I left the school at 11:04. Over 2 hours. The speech, OT, and PT evals have been ordered, but weren't done yet. School has been in session for 2 1/2 days, so the teacher was unable to give the committee any idea where Hope is in terms of academics. The therapist hasn't met with her yet, so all he could do is share the questionable information we received from the first set of adoptive parents. You might be wondering how the meeting could have possibly taken 2 hours. The committee spent most of that time discussing how they were going to classify Hope- ED (emotionally disturbed) or OHI (other health impaired). Hope came with a laundry list of diagnoses, any one of which was enough to classify her. Nobody was saying she should be in a different class. I said right up front it did not matter to me how they classified her. The school psychologist and the CSE Chair (also a psychologist) spent over  an hour debating the merits of one classification over the other. Everybody else watched. I had forgotten how numbing it can be to get the school system to provide services for a new child. This meeting may be an example of what put the school district into fiscal distress... It would have been easier, cheaper and as accurate to toss a coin.

New post on other blog.

Hope has a class!

After two weeks of being polite, deteriorating to being politely threatening, Hope has a class. It is not in our neighborhood school, but it is in the same school GB will be in and runs the same hours, so they will ride a little bus together. The class has a special ed teacher, 2 teacher assistants, a social worker, and a psychiatrist several 1/2 days a week. It is meant for children with emotional problems and it maxes out at 12 students. Right now, Hope will  make eight. An added bonus is that the department of special ed is located in this building. One stop shopping!

We are set to terminate the current parent's rights and finalized Hopes adoption in two weeks, in Texas. We need to make some major physical changes around here, but I am reluctant to start them until Hope is really ours. I still get mixed messages from Hope's current family, and I guess there is a part of me that is afraid they will still back out.