Parent of a Child with Albinism

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. 

This is the written report of Lyra’s Orientation and Mobility Assessment completed on March 11th.

lyra-om-re-eval-share

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

I’ve mentioned a lot of different types of assessments in my last few posts.  Knowing what they are and how they differ can be really confusing.  Also, I tend to use the words “evaluation” “assessment” and “examination” interchangeably, which probably adds to the confusion.   Here are some links to information that define them and provide a much better explanation than I could. 

Overview of Assessments

Functional Vision Assessment

Low Vision Evaluation &  Low Vision Examination

Learning Media Assessment

This next assessment is one that I have only recently heard about.  It seems to be similar to a Low Vision Evaluation, but completed by an education professional rather than in a clinical setting.

Assistive Technology Assessment

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.

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.

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

Normally Lyra’s TVI and OT come separately.  Lately they have been coming for visits together to try and work with Lyra outside where she is less familiar with the environment.  However, the last two Tuesday’s when they have come, it has been raining outside.

So, here is a video of their latest visit. 

Lyra’s early intervention team recently completed her yearly re-evaluation. Lyra is 2 years and 4 months old.  Her goals are updated at least once every 6 months.  (more…)

As I may have mentioned before, over the last 2 years, writing has sort of become my therapy.

I recently had my 4th article published in Albinism Insight.  The article is about emergent literacy in children with low vision.  The information can really be applied to ALL children with low vision, not just those with albinism.  Some of the information from my previous post, “Literacy Lollapalooza” is included in the article.  You can view my article by clicking on the following link.

literacy-all-pgs

Recently, our family has been reconnected with the Parents as Teachers program.  We first participated in the program 5 years ago in a different school district, with Dominick.

Parents as Teachers (PAT) is an early childhood parent and family support program serving families throughout pregnancy until their child enters kindergarten, usually age 5.  Here are the goals of the program from the PAT website:

Program Goals
* Increase parent knowledge of early childhood development and improve parenting practices
* Provide early detection of developmental delays and health issues
* Prevent child abuse and neglect
* Increase children’s school readiness and school success

This FREE early childhood program is for ALL children, not just children who have a delay in their development. Parents are supported by PAT-certified parent educators who provide home visits every 6-8 weeks. At each visit, in addition to offering developmental screenings, a parent educator will bring activities to do with your child to help enhance his/her language development, intellectual growth, social development and motor skills. (more…)

This past spring, our family attended an event at our local Children’s Center for the Visually Impaired called Literacy Lollapalooza.  This all day workshop type event included a variety of sessions designed to promote literacy in children with visual impairments.  One of the activities that was talked about in a couple of the sessions was making your own book, specifically making a book about something in your childs life, an “experience book.”  You could write a book about a visit to grandma’s or a trip to the zoo.  You could make a book about a daily routine like making dinner or bath time.  You can draw the pictures for your book, use real photographs or even cut pictures out of ads and magazines.  Let your child help as much as possible by drawing or pasting pictures, putting pages in order, even providing the words for the story by telling you what a picture is about. (more…)