Parent of a Child with Albinism

Anyone who has a child currently receiving Early Intervention services that will be turning 3 in less than 6 months, should start asking questions and getting information about the transition process, NOW.   By transition, I mean the process by which a child who has an IFSP and is receiving services through an Infant-Toddler program (IDEA-Part C) switches to having an IEP and receving services through a preschool program (IDEA-Part B).

A few weeks ago, Lyra’s Family Service Coordinator, TVI,  several other people, and I met for a pre-”transition meeting” meeting.  I initiated this meeting and I am so glad that I did.   Lyra’s EI services over the last 2 years have given me a good understanding of IFSPs, and I’ve learned a lot about IEPs over the last 5+ years through the many IEP meetings I’ve attended for my oldest daughter, Rebekah.  I even attended my state’s Education Advocate Training, just to gain even more knowledge.

Overall, I feel pretty confident in my knowledge and understanding of IDEA and special education laws and regulations as the apply to IFSPs and IEPs.   Connecting the two is where it gets confusing.  This transition planning/process has been by far, the most confusing special education process I’ve ever dealt with.  There is so much overlap between the Part C people and the Part B people and there are so  many inconsistencies as far as who does what, when, where and how.  I still have a lot of research to do and a lot of questions I need answered.  I already have 2 more meetings scheduled and will be scheduling a number of evaluations and appointments for Lyra over the next few months.  More on this and more on the details of this first meeting we had…coming soon.

To be continued…

Here are some resources on the subject of “transition” that have been helpful:

Early Intervention (Part C of IDEA)

Transitioning from Early Intervention

Transition Planning

Transition from Part C to Preschool

Continuing from Part 1 of my post…

Prior to our pre-”transition meeting” meeting last month, I knew very little about the districts preschool program. Initially, we encountered a bit of resistance because the districts administrators insisted that we couldn’t schedule a meeting until 60 days before Lyra’s 3rd birthday. However, I knew that was not true. I knew the state law which stated the following:

In the case of a child who may be eligible for preschool
services under Part B of the Act, with the approval of the family of the
child, convene a conference among the lead agency, the family, and the
local educational agency at least 90 days, and at the discretion of the
parties, up to 6 months, before the child is eligible for the preschool
services, to discuss any services that the child may receive.

So…we got our meeting scheduled. Lyra’s current IFSP team members including her Family Service Coordinator/OT, and TVI, and I, plus our county’s Infant-Toddler Program Coordinator all attended the meeting.  I knew the Part B program would have several people at the meeting, but I wasn’t sure how many, who they were, or where they had come from.  So there we had the Part C people on one side of the table and the Part B people on the other side…and a big lump in my stomach.   Lucky for me, I had prepared the following list of questions.

1.What types of specialized providers, Occupational Therapists, Teachers of the Visually Impaired, Orientation and Mobility Specialists, Speech and Language Pathologists, etc. does the district currently have on staff?

2. How are the different services typically delivered…direct or consultative?

3. How many hours per day and days per week will Lyra attend the preschool?

4. How much experience do the regular classroom teachers have with children who are visually impaired and do they have any experience specifically with children who have albinism?

5. What is the teacher to child ratio?

6. As part of the process of determining Lyra’s eligibility for services, where and when will the following evaluations take place; Functional Vision Assessment, Orientation and Mobility Assessment, Low Vision Evaluation, and Learning Media Assessment?

7. In addition to those assessments/evaluations, what other tests do you use to determine eligibility?

8.  Who will complete those evaluations?

9. When could I visit the school building for a tour and if possible, to observe a preschool classroom similar to what Lyra’s will be like?

10. Lyra turns 3 at the very end of the school year. What options are available for summer services to ensure continuity of services?

Overall the meeting went very well and I got most of my questions answered.  I have a tour of the school building scheduled on January 30th.  Lyra has an appointment with her pediatric ophthalmologist on February 5th.  Lyra’s official “transition meeting” is scheduled on February 6th.   Sometime before all of those, we also have to cram in a Functional Vision Assessment and an O&M Assessment.   Busy, Busy, Busy!   No wonder I have to divide this post into 3+ parts.

In “Part 3″ of my Transition Planning post, I’ll share the answers I received to the questions I asked at the meeting.

In my last post about Lyra’s IFSP-IEP transition, I  said I would post the answers to my questions, in my next post.  I apologize for keeping you all waiting for so long.  I had intended to write that post before Lyra’s transition meeting on February 6th.  We  have already had that meeting, so I have twice as much information to share…well kind of.  The actual “transition meeting” was rather uneventful.  More on that later.

From our pre-”transition meeting” meeting we had back in January, I learned that our district has 4 Teachers of the Visually Impaired on staff.  I was VERY pleasantly surprised about that!  At least one of their TVI’s is also a Certified Orientation and Mobility Specialist.  She happens to be the TVI assigned to Lyra’s IEP team.   I learned our district also has at least one Occupational Therapist and 2 Speech and Language Pathologists.

Services can be direct, consultative, or both, depending on the type of service and Lyra’s needs.  Children attend the preschool 2, 3, or 4 days per week, either mornings or afternoons.  They told me it varies depending on the child’s needs and we wouldn’t know how often Lyra would attend until after her evaluation period.

The Early Childhood Special Education teachers that will be working with Lyra all have some experience with children who are blind or visually impaired, but not with a child with albinism.  The seem to be very accepting of any information I can provide to help them be fully prepared to have Lyra as their student.

The teacher/child ratio concerns me a bit, but I may have misunderstood the information the gave.    For every 1 teacher, they expect to have 20 students… so a 1 to 20 ratio.  Yikes!  They mentioned that there would also be paraprofessionals in the classroom, but I don’t remember how many or how often.  I need to get clarification before our next meeting.

Regarding all the needed evaluations and assessments…what a crazy confusing process!  Lyra’s Functional Vision Assessment(FVA) and Orientation and Mobility Assessment(O&M) will be completed by her current IFSP team and are both scheduled for March 12th.  Her last FVA was when she was 19 months old and hr O&M assessment was when she was 16 months old.   They definitely need updated.  I’m not sure about the Learning Media Assessment and how/when it will take place.  I will know more after her FVA.  I still haven’t scheduled her an appointment to receive a Low Vision Evaluation.  It’s on my “to do” list.

In addition to the results of those assessments, and the doctor/medical eye reports I will provide, the transition team will use at least 2 other evaluations/screening tests.  One is called the Battelle Developmental Inventory and the other is called the Assessment, Evaluation, and Programming System for Infants and Children (AEPS®).  I know very little about either one of them.

The evaluations will be completed primarily through observation.  Beginning on April 7th, Lyra will actually attend the preschool on Tuesdays and Thursdays from 12:15PM to 3:15PM.  The evaluation period continues through the end of the school year which is May 20th.  The person doing the evaluating will be the school psychologist and in consultation with a TVI.  I’m not sure how I feel about this.  As it seems, on April 7th she will basically be thrown into this preschool classroom that she has only seen ONCE and with 19 children she’s never met.   From my “mommy point of view,” that is really scary.  Let’s just put her in there and let her wing it.  She may be able to fake it and get by for a while, but that will ultimately result in a lot of frustration and very little learning.  Hopefully, as I get more information, I will learn that it’s not as bad as it seems.

A few weeks ago, Lyra and I were given a tour of the building and classrooms.  Lyra had fun and I liked the indoor playground.  However I was a little disappointed with classrooms.  I know this is a state funded public preschool, so I can’t expect everything to be perfect.  Overall, based on my observations, the classrooms didn’t seem to be designed with children with special needs in mind.  For your average preschool child without any special needs…the classrooms were great!
But I’m Mom…and I’m picky and protective.  Maybe I’m being a little too critical.  For now we just have to wait and see.   I’m hoping I will have the opportunity to observe an actual preschool class prior to April 7th.  I really want to see what a typical preschool day looks like and look for anything that could potentially be challenging for Lyra.

Summer services, aka Extended School Year services are provided on a case by case basis.  It will be up to the IEP team to determine whether or not Lyra can/should receive them.  That can only be decided at her first IEP meeting which will not take place until after the evaluation period.

I’m EXHAUSTED!   This is all so confusing and a little overwhelming at times.   Please let me know if need to provide a better explanation regarding any of the information above.

Below is a link to a copy of the written report from Lyra’s latest Functional Vision Assessment.  We really got a lot of useful information from this assessment.  It was very thorough.  I will write about this in more detail when I have a bit more time, but I wanted to go ahead and at least post the report.

lyra-fve-share

So… I finally got that observation at Lyra’s preschool…just 4 days before she was scheduled to begin her evaluation period. The afternoon preschool class goes from 12:30PM to 3:30PM and I stayed and observed for most of that time. I think it went well overall. Lyra’s teachers have been really nice and very open and accepting of any help/advice/support I can give. Lyra’s Functional Vision Assessment and Orientation and Mobility Assessment were both completed, as I posted in earlier posts.

So as part of her evaluation, Lyra has been attending preschool 2 days /week. She has attended 5 times so far. Lyra is LOVING it! The first 2 days, I stayed with her at the preschool. We are all learning a lot.
I am cautiously optimistic.

It hasn’t all been smooth sailing though. I’ve had a couple of rather heated conversations/meetings with one of the key players on Lyra’s IEP planning team. This has definitely forced me to become more aggressive in doing my homework to prepare for the meeting. I will include links to much of that “homework” that has been keeping me so busy, at the end of this post.

Our family’s relationship with the school district is going to be a long one and I’d really like it to remain a positive and cooperative relationship. It is not my intention to cause conflict by making unreasonable requests or insulting educational professionals. However, they need to realize and accept that I know my child better than ANYONE and I WILL do everything necessary to ensure that all of her needs are met to the fullest extent possible.

Lastly… If I hear one more person from the school district say to me, “Well, we’ve had children with albinism in our preschool before.”, I think I am going to SCREAM! I know those people who have said it mean well and are probably just trying to comfort me and reassure me that Lyra will be okay at preschool, but after hearing it for the 10 time…..IT’S REALLY NOT COMFORTING! After hearing that phrase repeated SO many times…..I’m the opposite of comforted. I’m more worried! You know why? Because at this point, when they say to me, “We’ve had children with albinism in our preschool before,” what I hear and interpret that as, is…”We can handle this,  Back-off, We don’t need your input, you’re just a parent.”

Glad I got that off my chest.

Anyway, we have a date for the actual IEP meeting.  It is next Monday, April 27th.  I don’t expect to get much sleep between now and then.  This stuff has been really hard work.  I can recall very few things in my life that have been this time consuming and mind draining.   Fortunately… I get by with a little help from my friends.     Those of you who have been “coaching” me and helping me research over the last few weeks, THANK YOU SOO MUCH!  I couldn’t do this alone.
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Smart IEPs

Preschool Children with Visual Impairments

Considerations for Low Vision Students in a Classroom

Environmental Checklist for Developing Independence

Tips for Classroom Teachers with a Visually Impaired Student

Advice to Parents of Partially Sighted Children

Literacy and Expanded Core Curriculum

The Braille Literacy Crisis

And that’s not even ALL of my sources. 

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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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 4^th 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.

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?  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.”

Beginning this year, her first year of preschool, Lyra will be learning both print and braille. This concept is known as “dual-media.” I must admit, when Lyra was a baby, and we were still coming to terms with her condition, the LAST thing I wanted to hear was someone telling me that Lyra might need braille. Braille was for blind people and my baby was NOT going to be blind. Most of what I heard and read up to this point told me that Lyra’s vision would be good enough that she could read print and not need to learn braille. So how did I become such a strong supporter of dual-media?

The concept was first introduced by one of Lyra’s Teachers of the Visually Impaired, when she was receiving early intervention services.  At this point I began doing my own research. I not only read dozens of articles and papers, I also talked to other parents of children with albinism and adults with albinism. I was beginning to realize that there was just not enough evidence to prove to me that Lyra would never need braille. I became convinced that for some situations, at various times in the future, braille might be her best option.

I learned that the use of braille may prevent or reduce eye strain, headaches, and neck and back problems caused by poor posture. With braille, Lyra would not be dependent on certain lighting conditions, print size, or the availability of magnification devices. If she has trouble reading her own handwriting, braille could be used for taking notes.

“I dream of being able to read a book myself, not through an audio book, and be able to read and read until I feel like stopping – not because I’m getting a headache or am tired of holding a magnifier or sitting in some strange position – but because I just want to stop,”  Heather Kirkwood, adult with albinism.

It’s true, the majority of people with albinism do not read braille. Why is that? It may be that they truly don’t need it. It could be that they were never given the opportunity to learn braille. “I would have benefited greatly from learning braille as a young kid, but indeed wasn’t even offered the opportunity until adulthood – an area where I feel the system let me down.” (Heather Kirkwood, adult with albinism)

Just because it’s the way it’s always been done, doesn’t mean it’s always been the right decision.  “In the past, teachers struggled over the decision to teach braille to students who had the capacity to use print. However, students who were inefficient in print reading and writing had no alternative other than to struggle with that inefficiency.” (Koenig and Holbrook, 2000, p. 296)

I know there are many examples of people with albinism who excelled through school and went on to become very successful adults in lots of different career areas, but at what costs?

Marleena Coulston, adult with albinism, was introduced to braille in 7th grade, after her reading speed had begun to decline, but at that point, she says she was very resistant to it.  “I most definitely have had to work harder than my peers, due to my eyes tiring from the heavy amounts of reading. Everything took twice as long for me to complete and do. Tests always took longer, my homework always took longer…I think that braille would have made a difference. I think it’s a good thing. I probably would have adjusted better if they had introduced braille to me at an earlier age.”

Past examples and trends do not prove that my child won’t need it. The ranges of visual acuities in people with albinism vary widely.  I can’t predict if braille will be useful to Lyra in the future and neither can anyone else.

The purpose of her learning braille isn’t so she can get away with doing less.  I want to enable Lyra to do more than just get by.  I want her to have the confidence and ability to reach her highest potential.  Her ability to succeed should not be limited by her visual impairment.  I do want her to learn the value of hard work and even struggle at times, not because of her vision, but because she is continually provided a challenging curriculum.  She needs to acquire the skills necessary to survive in the real world.  She needs to know that she can’t truly become successful by constantly using her visual impairment as a crutch. I’ve stopped lowering my expectations and no longer focus on her limitations. I don’t make excuses for her; I let her try something again and again.
“The pupil who is never required to do what he cannot do, never does what he can do.” (John Stuart Mill)

This decision we’ve made for Lyra has not been without criticism.  Here are some of the arguments we’ve heard.

*I’m trying to make her blind.

I know that Lyra is not totally blind, which is why I don’t expect her to learn and rely on only braille. However, she is not totally sighted either, so why should she be expected to learn/rely on only print?

One of the reasons we were told, against her learning braille, was that she is primarily a “visual learner.”  We agree that Lyra is a visual learner and want to optimize this strength when it’s most effective.  However, it doesn’t mean that her vision will always be the most efficient way to access information.  If relying on only her visual ability for reading causes her to fall behind her peers and often results in physical pain, why would she even want to read.

“The only books I have read for pleasure are books that I am EXTREMELY interested in reading. Had I learned braille I might have had more of a love for reading. I just looked at reading as a BIG CHORE.” (Margaret Mary Campbell, adult with albinism)

*Using braille will make her look blinder.

In my opinion, holding a book/paper an inch away from her face or sticking her nose down to her plate of food would be much more noticeable and make her appear “blind.”  Using braille will not make her look different, any more than wearing head phones for audio materials, using a CCTV, or using a hand held magnification device would. Children will always notice differences, it doesn’t matter what the specific difference is.  Our approach on dealing with this is basically just being aware and looking out for any social or emotional issues.

*She will just read the dots visually or will be resistant to learning braille.

Children will often look for the easy way out; it doesn’t mean we make learning something optional.  If she’s trying to read the dots visually, there are lots of things we could try to help her break the habit… put a piece of paper over her hand or place a partition of some sort between her eyes and her hands.  Learning braille is only as hard as the teacher makes it.  If the teacher goes into it with the attitude and belief that kids with low vision CAN’T learn braille, it will affect that student’s confidence and ultimately his/her success in learning braille.

*  It’s unnecessary to learn braille, with today’s technology. Why bother when there are so many other options.

There are lots of alternatives to braille available, low tech and high tech magnification devices, audio books, large print, and more, but there are limitations with all of them.  Other than audio format, all of the other options are visual so there is still the issue of eye strain and fatigue.  Of all of the available options, none of them are as versatile as braille. You can read braille in bright light, low light or even no light.  Braille doesn’t require a computer, an audio player, or even electricity.    You can’t assume that what works for one person will work for everyone.  “I had a tough time adjusting to books on tape because my mind wandered. I’m actually, IRONICALLY, a “visual learner.” (Marleena Coulston, adult with albinism)

Chantel  Alberhasky, parent of a child with albinism said, “It was once believed that technology would replace braille for people with low vision, but just as technology cannot replace print it cannot replace braille.”  Technology has had a huge impact on the use of braille, not by replacing it, but by making it even more accessible/attainable.  Through the power of technology and programs like Book Share and Web-Braille, books in digital format can be downloaded from the internet and printed on an embosser for immediate access. 

* It should be her choice.

Yes and no.  Lyra is not yet old enough to understand the importance of becoming a good reader.  Even if when she is a little older, she becomes resistant to learning braille, I will still require her to continue her braille instruction.  I’m sure many students have complained about learning how to read print, but we would never let them opt out of print reading simply because they didn’t like it. Yes, when Lyra is an adult, I want her to be able choose if, when, and where she wants to use braille.  In order for her to truly have that choice, and really be equipped to use braille, she must be proficient and fluent with it.  Of course she won’t think it’s useful, or recognize the possibilities with braille if all she ever learns is the braille alphabet.

“My son is only finishing kindergarten, but he is learning braille along with print. I am just giving him the tools to help him be as successful as he can be,” said Chris Kramer, parent of a child with albinism.  Braille is a tool, just like a Closed-Circuit Television (CCTV) is a tool.  Neither can be used effectively with out proper training.  With both tools, it is necessary to provide the child with the knowledge and skills required to benefit from its use. You must begin that instruction very early, before it’s even needed.  When that child is older, he/she may or may not choose to use a CCTV or braille, but at least he/she has the knowledge and skills needed to really make that decision.

*I’m causing her to be less independent or making her more “disabled”.

According to Merriam-Webster, the definition of disable is to make incapable or ineffective; especially: to deprive of physical, moral, or intellectual strength. In no way am I trying to make her less capable or weaken her ability to succeed. I’m doing the exact opposite. I don’t want to limit her, I want to empower her. “Don’t lower your expectations to meet your performance. Raise your level of performance to meet your expectations. Expect the best of yourself, and then do what is necessary to make it a reality” (Ralph Marston).

I’ve heard too many examples of adults with albinism not being able to read for long periods of time and having slower reading speeds and suffering from intense eye strain and headaches.  I can’t say for sure that when she is older, she will definitely experience eye strain and headaches, but I can’t say for sure that she won’t either. “As a 35 year old I personally wish I had learned braille, especially with some of the things I’ve done in the workplace.  I’ve had to give several lengthy presentations, too long to not have notes for…and it is not good PR to be constantly peering at a paper less than an inch from your face rather than looking at your audience,” Julie Stevenson, adult with albinism.

The decision of whether or not a child should learn braille should be based on input from his/her IEP team.   It is not a decision that should be determined based on the opinion or recommendation of just one person, including a doctor.    Information from medical professionals is very important and very useful and absolutely must be considered in the development of the child’s IEP.   However, the decision to provide braille instruction is an educational decision, not a medical decision. Would an education professional be qualified to make a medical decision?  No.  So why would a medical professional be qualified to make an educational decision?  When making that decision, the team must consider the child’s current needs and also his/her future needs. The reading requirements of a 1st grader are different in many ways than the reading requirements of a high schooler.  As the print size gets smaller and reading requirements increase in amount and complexity, will the student still be able to keep up?

If you’re considering braille, your child should first be given a quality learning media assessment that evaluates your child’s abilities, not just in one controlled environment, but in a variety of settings. However, that alone cannot be the only determining factor. One of the provisions of IDEA is that a school may not use any single measure or assessment as the sole criterion for determining an appropriate educational program for the child.  More information about the IDEA previsions regarding braille instruction can be found at the following website.  http://idea.ed.gov/

As of now, in terms of her cognitive abilities, Lyra is doing extremely well. She is very imaginative and highly curious. I expect her to excel in school.  Why shouldn’t I?  What if in our family, we expect more than just average academic performance?  What good does it do a child to base goals on ideas such as “at grade level” and “proficiency”, if he/she is capable of excelling far beyond those standards?  Someday Lyra may decide she wants to be a brain surgeon, or a chemical engineer, or who knows what else.   I want her to be equipped with any tools/skills she might need along the way in order to accomplish that kind of success.  I want to increase her independence and give her more flexibility.  What ever she decides for her future, I will do everything I can to help make that possible.

It doesn’t matter if every child with albinism before her did perfectly fine without braille.  Lyra is an individual.   My husband and I are her parents and we are making this decision for Lyra.   I won’t criticize parents who choose for their child not to use braille nor will I criticize adults with albinism who don’t use braille.  That’s their decision. But don’t be so quick to judge me either.  Please respect and understand that based on the needs of our child, we are making the best decision possible.

“Don’t limit a child to your own learning, for he was born in another time”

~Rabbinical Saying

References

Holbrook, M. C., Koenig, A. J. (2000) Foundations of Education. New York: AFB Press.

Merriam-Webster. (2009). Disable. Retrieved August 4, 2009, from http://www.merriam-webster.com/dictionary/disable.

Her bus arrives home after school one day – Lyra walks in the front door and drops her backpack on the floor.  As she’s taking her coat off, I ask her, “How was your day?”  “Good” she says…and just before I’m able to ask my next question, she adds, “and I didn’t learn anything new today, Mom.”   My jaw drops, and I’m thinking…have I really become that predictable to my 3-yr old?

Yeah, so maybe I do often ask Lyra what she learned at school.  I guess it’s just this crazy idea/belief I have, that every child should have the opportunity to learn something new every day.  If they’re not learning, then what’s the point?

Lyra is very vocal and if there is something she’s learned that day at school that has REALLY got her excited, she is usually quick to tell us all about it…which I love.  It’s just hard for us to see her progress overall.  It seems so much slower than when she was receiving EI services.  And I like to track things.  I’m a numbers, data, and charts kind of person and I HAVE NO CHART! Give me a checklist or something!  I just want to be able to keep track of her progress a little better and know that she’s continually moving forward.  Is that too much to ask?

Time for me to go scour the internet in search of that elusive chart. 

Lyra is doing great in preschool.  One thing that I haven’t yet mentioned…at least I don’t think I’ve mentioned, is that Lyra actually attends two different preschools. One is the school district preschool.  This is the one that handles her IEP.  She attends this one on Tuesdays and Thursday mornings and she receives direct braille/vision services once a week for 30 minutes.  The other preschool is a private school specializing in children who are visually impaired.  Lyra attends this school on Monday and Wednesday mornings and receives direct braille instruction once a week for 30 minutes.  So she is actually receiving double the amount of time for braille instruction as is required through her IEP.  The braille teacher at the private preschool does have a copy of her IEP and are working on those goals/objectives, but the teachers and the school are not connected to the IEP in any legal sort of way.  The teachers and the school name are not listed anywhere on the IEP.

Wow… that was a lot of words to try and say something simple.  I hope that made sense.

The link below is to her 1st semester IEP progress report from the school district preschool or SDP for short.   I have since spoken to her TVI and learned that Lyra has met her first two objectives for both of her IEP goals.  She also told me that Lyra is a quick learner and isn’t resistant to learning the braille.  One thing I was really happy to hear from her TVI is that so far, Lyra isn’t displaying/developing any braille bad habits…specifically scrubbing.  Yay!   Lyra can tactually identify the braille letters ‘a’ and ‘i’ and maybe a few others…  Her TVI didn’t have actual list of all the letters Lyra knew in front of her at the time of our phone conversation.  We have a conference next week and she will get me that information then.

IEP Progress Report

One of the main differences between her braille instruction at the SDP and at the private preschool (PP) is the amount of time she’s spent using the braillewriter.  At the SDP she’s only got to try using the braillewriter occasionally.  At the PP Lyra has been using the braillewriter since day 1.  Every day that she has had her braille instruction at the PP, she has brought home a sheet of paper with all of her braille “writing” and “scribbling” for that day.  She has shown an increased interest in knowing what letters she is writing and her hand and finger strength is increasing.  According to her braille instructor at the PP;

Lyra uses a braillewriter adapted with unifix cubes on the keys. She rolls paper in with assistance and produce some full cells with inconsistent pressure. She is beginning to do some independent scribbling. She allows assistance to position her fingers to braille her first name and inconsistently brailles letters ‘a’ and ‘i’.

Lyra tracks across a line of brailled geometric shapes with some assistance, identifies 3 shapes, and locates the one dissimilar shape in a line of 4 shapes.  She replicates configurations in a manipulative braille cell, sometimes naming dot numbers, often working from right to left unless prompted.

When practicing her braille at home, I haven’t had any problems with requiring her to read the dots tactually.   She sits up straight and sometimes she even closes her eyes…just cause she wants to close them.  The only time she ever wants to look at the braille visually is after we’re done with each task…to sort of “check” herself.

The braille learning has definitely not had any effect on Lyra’s ability to learn print.  As you can see in the videos of my recent post Reading Braille and Print, she is able to identify all 26 print letters by sight (occasionally stumbling with M & W), and although it’s not the prettiest, she can also write her name.  From my perspective, Lyra seems to extremely motivated and equally excited to learn both print and braille.  She often draws pictures…more like CONSTANTLY draw pictures…and then many times wants me to write words for her…to make her pictures into a story.  I don’t want to stifle her creativity or imagination…but I could definitely do without all the pictures, cards, and stories scattered about our house. 

Believe it or not…it’s about time for us to start preparing for and planning for Lyra’s next IEP meeting.  The meeting isn’t until May and hopefully things will go more smoothly than our first IEP meeting last year, but I’d much rather be over-prepared than under-prepared.