Archive for May, 2009

Storytime with Lyra

Thursday, May 28th, 2009

Lyra is “reading” her storybook, Quiet Loud by Leslie Patricelli.   Here are the words from the story, in case you can’t understand what she is saying.

Whispering is quiet.  Screaming is LOUD.
Crayons are quiet.  Pots and pans are LOUD.
Fishies are quiet.  Doggies are LOUD.
Thinking is quiet.  Singing is LOUD.
Snow is quiet.  Rainstorms are LOUD. (She skipped this page)
Slippers are quiet.  Mommy’s shoes are LOUD.
Sniffles are quiet.  Sneezes are LOUD.
Turtles are quiet.  Monkeys are LOUD
Birds are quiet.  Airplanes are LOUD.
Libraries are quiet.  Playgrounds are LOUD.
Naptime is quiet.  Playtime is LOUD.
More quiet things:  pillow, bunny, plant, ant, cloud, snail, teddy bear
More LOUD things: drum, horn, rooster, fire truck, teakettle, alarm clock, burp(Lyra called this, “baby doll”)

3 Years Old

Wednesday, May 27th, 2009

3rd-birthday-pic.jpg

SONY DSC

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SONY DSC

Free Print/Braille Books

Sunday, May 17th, 2009

Here are some great sources for getting free print/Braille books.

ReadBooks Program (click on request book bags)

Seedlings Book Angel Program

The Braille Special Collection

Braille Reading Pals- Early Literacy Program

American Action Fund Free Braille Books Program (for school aged kids)

Kenneth Jernigan Lending Library (click on “KJ Library Application- Home”)

Other Sources: Braille Storybook Resources

Have fun! :)

20 Questions: 1st IEP-2nd Meeting

Friday, May 15th, 2009

wrightslaw-book

Troy and I, and the rest of Lyra’s IEP team met for a 2nd time to continue where we had left off during the meeting the week before.  Like the first meeting, this one also lasted 3 hours, but it was a much more productive 3 hours.  We were able to get the IEP completed, other than a few corrections in the wording that we’re still working on.  We were successful in getting Braille written into the IEP, including pre-braille goals and direct Braille instruction. We were also able to get most of our list of accommodations and modifications included.

One of the reasons this meeting was so much more successful than the last was because I had done a better job of preparing and organizing all my notes, lists and other documents.  The other reason it was successful was because of my strategy.   I did a lot less talking overall and I focused more on asking specific questions.  By asking more questions, I was making them(the district) defend their statements and opinions.  I think it was effective because it proved how weak their defense really was.

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I’m not going to copy and paste ALL of the meeting summary.  I’m just posting 20 questions that I asked them during the meeting, followed by their response.  I’m also including a few extra statements here and there, that were important to the discussion.

As with my last post, for the sake of privacy, I took out most of the names. But because I want you to know which side was saying what, I had to use a little more than XXXXX for the names.   All of the people attending the IEP meeting as representatives of the school district will have the letter D plus a number. So for the 4 of them, we have D1, D2, D3, and D4.  Everyone else, friends, advocates, or service providers from Lyra’s IFSP team, will have LT plus a number…LT1 and LT2.    Clear as mud? :P  Okay…here are the questions and answers.

1. In reference to a statement in the Academic Performance section of the draft IEP that says, “She points to pictures of objects when requested by the teacher.”  I asked, ” At what distance did she achieve that task?”

  • D1 stated: “It was done on a slant easel at a distance of approximately 18 inches, but Lyra would have been allowed to move in as close as necessary to identify the picture.”

2. I asked D2 if she could again explain to me what it meant for a child to be functionally blind.

  • D2 stated:  ”From LMA, the last page, the student is functionally blind if the student will use tactual media (which includes Braille) as a primary tool for learning to be able to communicate in both reading and writing at the same level of proficiency as other students of comparable ability.”

3. “Are you saying if a child is a visual learner, then they do not need Braille?”

  • D2 stated: “No I am not saying that. I’m saying that while Braille is not required to enable Lyra to access the preschool curriculum, we agree that it is important to introduce Lyra to pre-Braille activities…and so umm I believe we’re in agreement that we don’t have any reservations about introducing her to the pre-Braille activities and that’s reflective in the proposed goal.”

4. “It seems you’re looking for evidence that Lyra needs Braille, is that correct?”

  • D2 stated: “What we’re looking at is her sensory channels, and to what degree she relies on one more so than the other. And actually what we see within the LMA is that she is clearly multi-sensory, that she clearly needs and does utilize all 3 sensory channels and benefits from having all 3 of those sensory channels made available for her to learn about her world.”

5. “What age is it appropriate to begin learning Braille?”

  • D2 stated: “It depends on the individual student.  As far as determination of literacy media, we’d want her to be old enough to have a clear cut reading and writing and right now, Lyra, due to her age, she’s not yet reading and writing. So in Lyra’s case, it will be determined when she’s more and more becoming a reader and writer.”

6.  ”Will Lyra be exposed to learning the alphabet and print when she’s in preschool?”

  • D2 referred to someone in the first meeting stating that “typically, it’s the late 4-year olds, turning 5, that’s when the true literacy activities are more frequently taught.”

7. I asked D4, “What exposure to print will Lyra have at this level, during her first year of preschool?”

  • D4 stated: “They do mini-activities with exposure to print, right now they’re making a mothers day card and the children, if they can write it, are writing out mom or we write it in yellow and they trace it. “I would say every day she’s going to have exposure to print in preschool. They learn the sound, there’s a little animated guy, P is Polly panda and there is a little song that goes along with that. They learn about other words that start with P.  They do an activity with the letter, like with the letter P, it would be in front of them and they could trace over it and then glue popcorn on it because it starts with the letter P. If the children are able to write it or trace it, then they’ll do that.”

8.  ”So she is going to be learning print this first year, but am I understanding this correctly, the decision not to provide her with Braille instruction was based on her age, not her visual needs?”

  • D2 stated: “Clearly we consider a child’s visual needs, but we also want to consider their age and developmental level.”

9. “If a child has ANY vision, does that mean they’re a visual learner?”

  • D3 stated: “Not necessarily.”

10. “At what point do you determine that? Is there a cut off?”

  • D3 stated: “That’s where the functional part comes in and typically, the Learning Media Assessment and the Functional Vision Assessment would be done by the same team, so that’s…we’re at a little bit of a difference there because …the district used information, from a Functional Vision Assessment from another agency and typically both of those documents would be done by one agency.”

11. “How did visual fatigue play into your decision?”

  • D3 stated: “I think we will see that as she gets more and more into a preschool situation, than what we’ve seen just in the very few days.”

D3 asked me, “Are you thinking that Braille is going to be her primary learning media?”
I stated:  ”No, but I’m thinking that in order for her to be equipped to make the best decisions as she gets older and be proficient, she needs to begin learning it now, just as she’s learning print now.”

12. “What amount of visual fatigue would a child have to have before you believe that Braille would be appropriate?”

  • D3 stated: “They would have to be seeing a great change during the time that she’s here. I think visual fatigue is definitely something that we expect and something we watch for.”

D2 asked LT1: “Did you put frequent breaks, was that in the Functional Vision Assessment?”

LT1 stated: “I have found that she does tire quickly and she tends to want to do something else.”

D1 asked LT1: ” How long can she go?”

LT1 stated: “If it was something that she was really interested in, 10 or 15 minutes. If it was something that was really challenging her vision, I have usually found that within 5 minutes she would be done, either she would be finished with the task or you could tell that what she was doing she wasn’t looking at, she was now doing it tactually.”

13. “I am confused, how does monitoring her needs satisfy the evaluation requirement to ascertain her future needs?”

  • D2 stated: “I’m not comfortable saying we have an instrument that can project next year, the year after, 4th grade, middle school, for Lyra.”
  • D3 stated: “The LMA and the Functional are what we are required to do to evaluate.”

I stated: “There is nothing in the LMA that says that you did an evaluation of her future needs for Braille.”

D3 stated: “We don’t know what her future needs are going to be.”

I stated: ” You’re saying you don’t know if she is going to require Braille in the future, so because of that, this box needs to be checked Yes.”

D1 stated: “Okay and yes it can be checked yes…and it can also be checked no and we can put that disclaimer, that due to her age, explaining, yes and no.”

LT2 stated: ” The law clearly states that it should automatically should be checked yes, unless you can show that she will not need it in the future. So if you’re 100% sure that you know that she won’t need it, then go ahead and mark that box “no,” but if you’re not sure, and there’s question, then the district should provide that Braille automatically. The only time you should mark no is again, if you can prove otherwise.”

LT1 stated: “From what I have heard, it sounds like the district is willing to say, Yes, at this point and that the goal is, one of the goals is looking at the pre-Braille.”

14.  Troy asked, “So are we in agreement that we’re going to mark that Yes, and then write goals based on that and the PLEP?”

  • D2 stated: “I don’t think we’re disagreeing. I think we’re all agreeing on the value of exposing Lyra to Braille as well as print and I don’t think that’s an issue.  I don’t think anyone has indicated that that’s not something we would agree to. “

15a. ” Okay, so we can check it yes then?”

  • D1: Nods

15b. ” Was that a yes?”

  • D1 stated: “Yes, it’s fine with me.”

16. “Okay so, what’s the real issue here? Why are you so afraid to check it yes, do you think that it means that you’re going to have to provide everything in Braille for her?”

  • D2 stated: “I guess just that word “required” and the thing with the LMA, the determination of functional blindness.”

17. “Are you saying if a child is NOT functionally blind, they will never have a use for Braille?”

  • D3 stated: “If today they’re not functionally blind.  If she would come in tomorrow and something had happened and she does not have the ability to reach out and get things visually, does not have the visual abilities that she has right now, then we would call an immediate IEP meeting.”

18. “Do you think that a child can learn Braille as easily in the 4th grade as they can in preschool…learn it as easily at the 4th grade level as they can at the preschool level?”

  • D3 stated: “No”

19. “Okay, so in order to be proficient at it, and accepting of it and be able to learn it well, doesn’t it make sense to begin teaching it when she’s younger and more receptive to it?

  • D3 stated: “I don’t think there’s a problem with showing her ABC’s in print and Braille.  I don’t think that’s an issue at all.  I think when you go to actually teaching her Braille and not being just exposure to it, we’ve got, with a child as visual as she is, very often we’re going to see a child reading it by sight, scrubbing the letters, both are very very bad Braille habits and produce more than likely, poor Braille readers.”

20. ” As far as bad habits, wouldn’t you agree that those habits are much easier to get rid of or avoid with a 3-4 year old as oppose to a 10-year old?”

  • D3 stated: “Right, yes, I would agree with that.  Exposure, I have no problem with whatsoever.”

1st IEP Meeting

Tuesday, May 12th, 2009

Prior to this first IEP meeting, we had put together our own list of possible goals for Lyra.  They were in a very rough draft form and I wasn’t exactly sure what the best way to word them would be.  My plan for writing them was to follow the Smart IEP guidelines, but because I was in a hurry, I never got that far.  Click on the following link to read what we had come up with for the goals:  Goals

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This meeting did not go well overall.  We spent a lot of time arguing and I did way too much talking.  I was not organized, I had papers and notes all over the place and I could rarely find the questions I had written down when I needed them.  There were a total of 14 people at this meeting which included 1 person via Skype and 1 person via conference call.  The following is the meeting summary/transcript from that first meeting.  For privacy, I have removed most of the names.

Eligiblity and IEP meeting April 27, 2009

XXXXX opened the meeting and introductions were made.   XXXXX explained that we would go over the evaluation results first. In response to my question as to whether I should state my concerns and questions while they were reviewing the information in the evaluation results or when they were going over the PLP,   XXXXX said I should wait until they were going over the PLP.

In response to my noting that the report is incorrect for stating Lyra has ”ocular” albinism - which was also incorrect noted in the FVA report based upon the eye report provided by Dr. XXXXX and that the same incorrect wording was also written in the FVA,  XXXXX advised it wasn’t necessary for me to receive a correction from Dr. XXXXX and they had already noted the mistake on their copy of the draft IEP.

XXXXX reviewed the Health/Physical status section of the evaluation results.  XXXXX , reviewed the results of her evaluation of Lyra’s motor skills. I informed the team that Troy and I have not seen Lyra demonstrate unbuttoning and buttoning a button, catching a ball or attempt steps on a balance beam which   XXXXX states Lyra can do.

XXXXX  reviewed the results of her evaluation of Lyra’s communication skills. She stated that Lyra’s expressive language skills are above average for her age and her receptive language skills are within the high average for her age.

XXXXX reviewed Lyra’s Functional Vision Assessment and the O&M report for XXXXX  who was at the meeting via conference call.    XXXXX then added that Lyra has trouble scanning a whole picture because of her low vision.  She focuses on a small area, a piece of the puzzle, but has trouble scanning the whole picture.

XXXXX reviewed the results of the Learning Media Assessment.  She stated that based on her evaluation, Lyra has adequate vision and would not need Braille now because her vision is stable and successful.”

As to the ”Determination of Functional Blindness.” I asked for clarity as to what it meant by the statement that a child had to be functionally blind to receive Braille.   XXXXX stated from her evaluation she concluded that Lyra was primarily a visual learner, which means she isn’t functionally blind.   XXXXX further stated said that based on her evaluation of Lyra’s current needs and what she saw Lyra doing, that Lyra is very much a visual learner and does not currently need Braille.   XXXXX added that they would continue to monitor her literacy media needs.

I explained that my understanding of the law is that LMA must include an evaluation as to not only her current needs, but also her future needs for Braille and I inquired how  XXXXX determined whether Lyra will need Braille in the future.  XXXXX stated that Lyra is only 3 and she is not a reader or a writer.    XXXXX stated that this was why they were going to leave the possibility of needing Braille “open.”

In response to my question of whether  XXXXX thinks Lyra will need Braille in the future, I was told ”maybe.” I was further advised by XXXXX team members that the IEP is only for this year and it doesn’t  mean that in the future Lyra won’t need Braille and that checking the box “No” on the IEP only meant that she didn’t need Braille this year.  XXXXX further informed me that that because Lyra didn’t “require” Braille this year, that they couldn’t check the box “Yes.”   XXXXX confirmed that she felt that Lyra would not benefit from Braille at this age, and that is why she included that the LMA would be ongoing.

XXXXX, parent of two children with albinism, gave examples of her own two children (ages 12 and 9) who are primary print readers, but also use Braille as another form of literacy.  She explained to the team that eye fatigue plays a huge factor in how XXXXX her children can read enlarged or magnified print for XXXXX periods of time. XXXXX made reference to the FVA which states that Lyra’s vision is characterized by decreased visual acuity and visual fatigue and that the parents  also noted that Lyra shows signs of eye fatigue at home.  I asked if most three year olds have eye fatigue,    XXXXX, replied that most preschoolers want a nap.

XXXXX, an adult with albinism, shared with the team that she was not given Braille instruction as a child which she regrets as it  is a tool she needs as an adult.  She also reiterated what   XXXXX explained regarding fatigue plays a major factor with literacy and stressed that  it is sometimes a “chore” to read print.

I explained that we do not agree with the portion of the Instructional Presentation section wherein  XXXXX states that the teacher should use gestures, pointing and facial expressions. I further explained that Lyra doesn’t have fine vision and would be unable to gain any information visually from gestures, pointing or facial expressions. I referred to the classroom teacher putting her first finger up to her lips, as in “shhhhh” but with out the sound, in order to instruct her students to be quiet. I also stated that even sitting in front during circle time, that Lyra wouldn’t know what her teacher was doing. Finally, I advised that if I am standing in a room next to a person who is wearing a similar colored shirt and has a similar hairstyle, Lyra does not know who is who.  In response,   XXXXX stated that Lyra saw her smile and responded by smiling back.   XXXXX also gave some examples of her pointing to things and Lyra looking at them.

Troy passed out a writing sample. It was printed in 8 pt. font and the color was approximately 60% gray.  He stated that was a sample essay from the SAT test.  He explained that, yes, they can read it but it requires much more work visually and if they continued to read it for a longer period of time, it would result in extreme visual and mental fatigue.  Troy explained that this is what reading will be like for Lyra.    XXXXX responded by saying, “They don’t read this in preschool.”

In response to XXXXX’s request that the team move from discussing the evaluation reports and eligibility to the writing of the IEP, I stated that I was comfortable with doing so as long as  XXXXX understood that the issue of Braille would need to be discussed as we believe Braille is appropriate for Lyra and that it should be a part of her IEP.

I was asked to sign a Determination of Eligibility document. I asked for clarification on what I was signing and asked confirmation that what I was signing was that I was in agreement that Lyra is eligible for special education and related services but not that I was in agreement of the results of the Evaluation. I was advised that my understanding was correct and I signed said document.

At this point the OT, speech therapist, and classroom teacher left the meeting. I provided a written list of our parent concerns to be added to Lyra’s IEP.   Although some expressed reservations that not all of our parent concerns were necessary to be included but  XXXXX agreed to attach our concerns to the IEP.

XXXXX  read through the following sections of the draft IEP: ‘Strengths and Preferred Learning Modality/Style’ and ‘Health and Physical’. An incorrect name was mistakenly used (Gabriel), but this was noted and corrected.

In response to my question as to whether a Health Care Plan is  needed for Lyra’s classroom teachers to apply her sunscreen every day, XXXXX  responded by stating yes.     XXXXX asked if it would be okay if we, her parents, applied sunscreen to her face before school and then they would just apply it to her hands and feet and legs and knees. She explained that they were concerned about accidently getting it in her eyes.

I explained that this wasn’t acceptable because the sunscreen must be reapplied every two hours and if we apply the sunscreen at noon and Lyra doesn’t go outside for recess  until 2:45 she will not have protection from the sun.  I further noted that the American Academy of Dermatology says that sunscreen should be reapplied every 2 hours.    XXXXX asked,  what would happen to Lyra if they “missed a spot.”   Troy explained that Lyra will sunburn and that the applying of sunscreen is a medical necessity.  I expressed my concern that although Lyra’s requirement of sunscreen, hat and sunglasses is a medical necessity the IEP simply notes that the aforementioned would only “benefit” her which would give the reader the false impression that these items are not medically required.

The mistake in the use of the word “ocular” albinism was again noted. It was unclear at this point if  XXXXX was willing to change the wording since this was  the eye doctor’s diagnosis.   I required that Lyra’s near visual acuity of 20/400 be included and  XXXXX  noted the change on the IEP.

In reference to the Orientation and Mobility Information on the draft IEP, I stated that the line which reads, “Lyra walks and runs across environments, and has sufficient vision to avoid contact with objects/people.” was taken out of context from the O&M report.  I explained that in the actual O&M report, that statement is made only in reference to Lyra’s INDOOR travel.  I asked them to add the word “inside” after the sentence on the draft IEP.   XXXXX agreed to the change and noted it on the draft.

In reference to the Braille question on page four of the draft IEP,  I explained that it is our understanding of federal and state law that since no evaluation has been done to ascertain Lyra’s future need of Braille that the team could not come to the conclusion that Braille isn’t appropriate and thus the “Braille Required” box should be marked “yes.”    XXXXX disagreed and  said no and stated that  XXXXX did address Lyra’s future needs for Braille in the LMA. She said they did that with the statement on the last page of the LMA which states, “Due to her age, literacy media assessment will be on-going.”

I stated that it was important that if Lyra was going to need Braille, she begin learning it now, just as her sighted peers are beginning to learn print.  I added that since young children are able to learn things much more easily quickly, waiting to begin her Braille instruction did not make sense.   XXXXX responded by stating that they don’t learn how to read in preschool.  I disagreed and stated that preschool children do emergent literacy and pre-reading activities.  I also stated that the students have exposure to print all over their classroom which is also emergent literacy.  I suggested compromises with regards to the Braille requirement box being checked yes or no.  I asked if we checked the box “no” could we still write Braille goals, using the words Braille or prebraille.   XXXXX team members refused to agree to my proposal.

I provided to the team member a copy of the draft goals we had prepared.    XXXXX stated that the goal and benchmarks she wrote were very similar to the Braille goals I wrote.  We noted that the goal and benchmarks written by   XXXXX did not include the words Braille or pre-Braille.   XXXXX team members would not agree to include the words Braille or pre-Braille in Lyra’s IEP.  In response to Troy’s inquiry as to what the impact would be if the ‘Requires Braille’ answer was checked yes.  XXXXX stated Lyra would learn Braille.

XXXXX refused to state on the IEP that Lyra requires Braille but put into the comments to the effect that  while Lyra doesn’t require Braille, the team recognizes that Lyra will benefit from learning Braille.   Near the end of the meeting, during discussion of goals, a tentative agreement was reached to include textual learning as a measurable goal, however,  XXXXX  team members weren’t comfortable with the word ‘Braille’ being included in the goal.  XXXXX stated that while Braille is not required, the team believes it is important to introduce pre-Braille activities.

XXXXX stated that it was her understanding that   XXXXX felt that Lyra would not benefit from Braille at this age, however, there is no evaluation which shows the Lyra’s future needs for instruction or use of Braille.   XXXXX read the federal law regarding Braille literacy which states an evaluation for future needs must be performed.   In response to   XXXXX’s question as to whether there was  anyone on the team feel that Lyra could benefit from the instruction or use of Braille in the future,   XXXXX replied that  it is impossible to see the future and that’s why the LMA will be ongoing. XXXXX expressed that she felt Lyra could benefit from Braille and that she was doing Pre-Braille skills with Lyra during early intervention.  She added that if she was making the decision, she thought the box should be checked “yes” that Lyra does require Braille.

The meeting was adjourned and it was decided that the IEP team would reconvene on Monday, May 4th at 2:00PM.    XXXXX asked if it was okay with us if XXXXX,  the lead XXXXX for  XXXXX attended the next IEP meeting.  I stated yes, that would be fine.

Evaluation Results and Draft IEP

Wednesday, May 6th, 2009

From the very beginning of this whole process, I’ve known that our biggest challenge would be getting the school district to teach Lyra Braille.  I very quickly learned just how big that challenge was going to be.

On Lyra’s first day attending the preschool for her transition, I dropped her off at her classroom and went to meet with one of the IEP team members from the school district.  This would be one of the “heated conversations” that I referred to in an earlier post.  The purpose of our meeting was just to go over some questions I had, but somewhere in the middle of my questions, we got onto the subject of braille.   During our discussion,  this “education professional”  said to me,

“We don’t have kids in this district who learn braille…kids who require braille in our district go to the state school for the blind.”

AND


“I really think you should go back and do some more research about the braille before you make any decision.”

Another thing this person said to me, unrelated to braille was in response to my statement that I appreciate that they have experience with children with albinism, but Lyra’s needs are unique to her. Her response was, “Well no, actually her needs are not really unique…” going on to say that Lyra’s visual acuity and orientation and mobility needs were very similar to other kids with albinism.

I was beyond outraged!  I could not believe this person had the nerve to say these things to me.  However, I’m not one to hold a grudge and staying mad was not going to accomplish anything.  So I moved on and focused my energy on Lyra and preparing for her IEP meeting.

I was able to get copies of the results for all of the school districts evaluations of Lyra, on the Friday before the first IEP meeting.   They also gave me a copy of the first 4 pages of their “draft” IEP.  Had I not written a letter formally requesting that, I don’t think they would have given them to me. results the Friday before the Monday IEP meeting.  Thank goodness I was able to get those because after seeing them, I CLEARLY had my work cut out for me!  Here are links to the documents I received.   The Learning Media Assessment (LMA) was so far off base it was almost comical.  The draft IEP is what they had put together without ANY input from me.  They basically took bits and pieces of the FVA and O&M report out of context and inserted them into the IEP to make it suit their opinion and objectives.  If you compare the two together, the LMA totally contradicts the LMA.

Evaluation Results

Draft IEP

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