An OSERS Guest Blog post by Felipe Martinez, a father of a daughter with Down syndrome.
The Martinez family, including Baby G.
We started with 32 week old twins. Throughout that struggle, we had no idea what was yet to come. Eighteen months later Baby G was born. Our world was about to be turned upside down…again.
Upon receiving the preliminary diagnosis of Down syndrome, I was in shock. I had no clue about what doctors and nurses were telling me, and I had not even had a chance to speak with my wife, Amy, about the newest addition to our family. Upon receiving the news of possible heart defects, the Down syndrome diagnosis took a back seat. Our next mission was to get Baby G to gain some weight to be able to handle open heart surgery. The services were not available locally, so we had to make arrangements to leave town for two weeks. After the initial confusion and medical procedures, Amy and I finally had a chance to sit down and discuss our future. The twins were well, and Baby G had recovered from her major operation.
Baby G has played a major role in how we are spreading awareness today. She has brought a whole new meaning to celebrating life. She is the happiest human being we have ever met. She is the most loving person on the planet. This comes with a slight price, though. She has learned that her charisma can get her out of tasks that she would rather not do. It has been particularly difficult getting her to focus on school and academics. Although she started early education when she was two and a half, she has never had an environment with a structured program in place. She is now five years old, and is having a difficult time adjusting to a public school system that offers more structure. After two Admission, Review, and Dismissal (ARD) meetings, we are still struggling to come up with a plan that will help her focus and learn.
Collaborating with school administration, Amy and I continue to establish a routine that comes home with her every day. We try to do the same types of activities and achieve the same goals at home and school. We, as parents, sometimes feel guilty for not implementing these types of strategies earlier in her life; it may have helped her adapt more easily to the new setting. There are no regrets, but through our experience, we can help other families avoid similar situations.
Five years have gone by, and I would not trade them for anything in this world. I am the President of the Down Syndrome Coalition for El Paso. Baby G has pushed me to be her best advocate. She has also taught me to live in the moment. Most importantly, I have learned that there are so many families that share a similar story. Our goal is to raise awareness so that no other family has to worry about its child’s future.
Opinions expressed herein do not necessarily reflect the position of the U.S. Department of Education and such endorsements should not be inferred.
I got what you intend, thankyou for putting up.Woh I am lucky to find this website through google. Being intelligent is not a felony, but most societies evaluate it as at least a misdemeanor. by Lazarus Long. eagebcgcbcdg
I can’t believe that TEA actually denies there is no “cap” or “target” of 8.5%… If you google “Killeen ISD Special Ed (internal) Report”, (link: https://www.killeenisd.org/frontPageV3/ser/KilleenISDSpecialEducationAudit.pdf) you can see the cap for your self & how it is expressed & explained on pages 31-32. RTI & many other special ed “mysteries” are also discussed. (It’s 110 pages long & a “must read” in my opinion.
According to a news article on line:(http://kdhnews.com/news/education/killeen-isd-fights-to-keep-special-ed-report-private/article_ec783230-e0fc-11e5-9272-872294de5ef4.html) which lead me to find the report, TEA paid approx $85,000 for it from Gibson Consulting Firm here in Austin, TX). The article further states the cost of these reports was $485,000.
The letter dated 5/19/2015-from Gibson to KISD Superintendent John Craft describing the audit & on pages 49-50-boasting that Gibson did audits for Leander ISD; Katy ISD; Tyler ISD & Comal ISD. (https://www.killeenisd.org/departmentDocs/c736/documents/TPIAResponse.pdf)
I went on to find the Leander ISD Gibson report: “A Review fo the Special Education Program For the Leander Independent School District”
(http://www.leanderisd.org/docs/1-GibsonReview0310.pdf)
–Page 11 shows TEA cap & how Leander is close to the target already. It also documents LRE (least restrictive environment–less resource or pull out) “state targets” by age groups. Here is a quote from p 11 …”The state has set target rates for special education students by age grouping…”
Manor ISD also has a Gibson report but it’s not specific to special Ed.
It reviews RTI & its usage p38/ 211 (top of page) or report page 19 (on bottom). Is this quote from report p20 true? because we have experienced RTI as a “delay” to getting a special ed eval & an IEP with services. (Or is it a ‘training issue” for schools to learning RTI’s appropriateness?) Here’s the quote:
…”The reauthorization of IDEA in 2004 also focused attention on RtI as a tool for assessing and working with struggling learners. This interest is a result of major changes made in the law:
The law changes how students are identified with specific learning disabilities. Local educational agencies are no longer “… required to take into consideration whether a child has a severe discrepancy between achievement and intellectual ability…(P.L. 108-446, §614(b)(6)(A)). Rather, local educational agencies may use a process that determines how a student responds to research-based interventions. ..”
-Appendix E is all about Special ed issues/ what to do about them (A good read)
(https://d3jc3ahdjad7x7.cloudfront.net/c4YrYqIjWetl9VbQIteFgAbvUK0N4XomiT6wpat8qvhw4aup.pdf)
Gibson Consulting Group’s website notes a “special ed review” for Katy ISD on their website: http://gibsonconsult.com/our-projects/
-I couldn’t find this report to read but I know that it, & other special ed & school reports are there to read. Gibson Consulting also has TEA’s guidelines for these expensive & comprehensive reports.
So who is “watching the farm” on this stuff? (Who is enforcing state/ federal education laws & program guidelines in the state of TX?) After 5 years of wondering who to go to, how to complain to, who could fix my childrens’ issues with the TX public school, I was finally told by TEA this month that they have no “legislative authority” for enforcing school compliance with state law & referred me to (RX Education Code) TEC 7.028. They said TX legislature has decided the School Boards have that authority & new legislation is needed if Texans want that to change.
So I googled to see how I felt about this & found that other school boards that I read about in Houston–the 1.2 million dollar decision to change school names (http://www.khou.com/news/parents-and-teachers-join-lawsuit-against-hisd/294525962); El Paso ISD school board “ousted” (https://www.texastribune.org/2012/12/06/education-commissioner-replaces-el-paso-school-boa/) were interesting… TEA’s role is mentioned in the El Paso article…
Ideas for improvement going forward:
–Permanently remove the “target” or “cap” for all areas of special ed/ 504/ IDEA B.
–Study successful school models & bring the best ideas back to TX to implement. Perhaps different districts can try different school models?
–Ensure all who need these federal programs have access and are found & tested as described under federal law.
–Training: There is so much diversity in special ed. Teachers need focused specific trainings on the population of students that they teach. General education teachers who have these children in inclusion classes need training as well as aides & special ed teachers. Training gen ed teachers on the student’s PLAAF only is not enough to understand the student’s learning style, needs, quirks & behaviors. Lecturing a student, telling them “not to do it again”, learn by your mistakes–these don’t work with my child & some other parents that I know but are going on in our schools.
–ECS 13 in Austin said during that “Listening Session” that they have “great trainings” that are not well attended at all. Trainings need to be mandatory & teacher required to have so many hours of paid training in certain specific areas & a choice of other optional trainings.
–Restructure ISD salaries: States like NY, have statewide salary structures for all public servants. Each position is described by duties, education, experience & achievement. Salary ranges are “capped” at a maximum with “increments” for longevity. Salaries are uniform state wide so small districts as well as large districts have the same opportunities for attracting & retaining qualified professionals. Differentials for higher cost of living available. This helps with budgets and funding & avoids “runaway” salaries.
–There needs to be a “watchdog” agency in TX that interacts directly with Texans (Parents) about all school matters–Special ed/ IEP/ IDEA B, 504; Title 1, etc. That agency direct reports & is accountable to the US Dept of Education and takes reports, complaints, feedback, etc.
-It sorts & forwards reported “issues” to the appropriate entity to be addressed for resolution. (Part of the issues I’ve dealt with is not knowing which agency deals with which problem (where to send a complaint); the choices of whom to make a complaint to such as TEA; OCR; OSEP, etc; the consequences of the choices–filing here prohibits taking further action there; or you have to wait for this process to find for your complaint before filing it with that other office.)
-With multiple areas of complaint that fail within several different agencies jurisdiction, it’s difficult for a “layman” parent to sort all this & direct each part to each different place. (It’s also very time consuming & confusing.)
–Immediate & well defined consequences for “not following state/federal rules of the program” especially when the program involves federally funded programs or grants.
–Feedback for accountability from parents; testing for accountability from STAAR but also required assessments that are statewide. A “choice” for parents to have child tested at an independent center-(like SAT’s are held on a Saturday).
My family’s story…Where do I start?… It’s been 5 years of this!!! We are in the Title 1 School in Lake Travis ISD. Almost 1/2 the school is ELL-English Language Learners & almost 1/2 the school is economically disadvantaged making the school a “schoolwide Title 1 school”. So I am a “Title 1 Parent” as told to me explicitly by LTE/ LTISD this year. Someone at the Austin “listening Sessions” said LTISD is far below the TEA cap & below 8.5% target for special ed (I think they said 7.7% or so??) There is NO Special Ed Parent Liason or anywhere to learn interactively about IEP from the school without reading about it & figuring it all out yourself. That is much of the problem. The LTISD SPecial Ed Director started a Special Ed Parent meetings (SEPAC) but there have been no meetings so far this year.
My child was born with 2 uncurable, untreatable, systemic, progressive diseases with devastating side effects-such as seizures not controlled by medications and seizures that turn into medical emergencies that can result in coma, permanent brain damage & death. She went thru ECI-Early Childhood Intervention, Has private OT, PT, Speech, annual MRIs, and neuropsych evaluations, specialists.
Before entering kindergarten, we met with the LTE/LTISD, including but not limited to the-504 counselor & LSSP & nurse. The flipped through the pages of the neuropsych report & the pile of medical documentation & therapy reports & said that kiddo “didn’t need anything”-thereby denying both 504 & Idea B & any evaluations.
After Christmas, I emailed the kinder teacher about homework taking 5 hours for kiddo, about kiddo not being able to see 5 ants in a set–with 2 ants on top line & 3 ants on the bottom line in a circle (which indicates kiddo’s neuro-visual issues which were addressed in private therapy about 1.5 yrs ago. It would be nice for the school to be trained in recognizing these issues & providing resouirces or referral to the parent or at least suggesting the parent talk to kiddo’s dr about it) and asked for tutoring or some kind of help. Teacher (who was retiring) indicated 504 paperwork. I completed & returned & waited. I finally found out who was in charge of this paperwork & emailed the 504 counselor (who still works there). 504 Counselor emailed that she was “prioritizing” “potential” meetings ahead of kiddo’s 504. I was told at the end of kindergarten that kiddo got 504. Kiddo went to 1st grade & teacher had been named “teacher of the year” for the previous year. After much nagging (by me), in Oct of 1st grade-the teacher finally emailed that she read kiddo’s IEP & her IEP was implemented since the beginning of the year. WoW! Kiddo didn’t get an IEP until mid-April towards the end of 1st grade.
I was told by the folder teacher that no one could know about kiddo’s seizures because it was a “violation of HIPPA”. I said-“I am the parent & kiddo needs to be safe. Everyone needs to know & be shown kiddos picture to look out for her for seizures.” I have emails from the nurse that LTE was told & trained. So in the FIE meeting/ report, the 1st grade teacher described kiddo’s seizures in her observations but never told us or “labelled” them as seizures in her written report of her observations. The LTISD Physical therapist observed kiddo standing in PE & a ball was thrown at her. She didn’t move or react. The ball hit her & bounced off of kiddo. We don’t know how many balls were thrown at our seizing child that day or any other time in PE class. We only heard of this at the FIE meeting & both parents said “she was having a seizure!” The LTISD PT lady said “Yes, I thought so too”. So much for telling us when kiddo was having a seizure or following kiddo’s seizure plan from her Dr that was given to LTE nurse & renewed every year since starting in kindergarten.
Her seizures progressed into only emergency seizures & 911 was called. I came to LTE & was immediately told by 911 people that kiddo stopped breathing twice and that the school people carried kiddo from the gym to the nurse’s office at the other side of the school cutting off her airway twice. A teacher’s email confirmed that kiddo “turned blue”. I asked why they carried my seizing child around & why they didn’t follow her seizure plan. I was told that it was “dismissal time” & she seized in the gym where all the kids were so they decided to move my child.
Kiddo also fell out of her chair at school–twice I was told.I asked if she hit her head & was told “no”. I was further told that another student saw my child on the floor & reported it to the teacher. I said-why don’t you get her a chair that she can’t fall out of-with arms? LTE said “Great idea!” So they got her a high school desk chair for tiny elementary school kid. It took about 4 months to get a proper sized appropriate chair for kiddo & the chair arrived when I came to school with an advocate.
LTISD agreed to provide a nurse on the bus to administer seizure rescue medicine but it was months before a nurse was hired & showed up. There were many excuses for the delay: no one applied; they couldn’t find anyone suitable; someone was hired but never showed up… Their previous plan was that the bus people were going to just hand kiddo’s RX over to 911 & tell them to give it to her. I remember telling the LTISD attorney in the ARD that 911 doesn’t take direction from thier school & 911 has their own protocol.
I can go on for days about how denying 504 or IDEA B/ IEP can impact the child’s health & safety at school. There have also been articles in the TX newspaper about it involving asthma, seizures, food allergies, etc.
There have been MANY, MANY LONG ARDS. Some over 3-4 days for more than 12 hours total. ARDs discussing that parents are an EQUAL part of the committee; the PLAAF must be understandable & use data; grades are supposed to reflect “mastery of the TEKS”; getting pull-out for kiddo. While most parents complain kiddo needs “inclusion” it was equally difficult getting “resource” or “pull-out” for my kiddo.
–I am a parent who actually likes STAAR or statewide independent assessments so we can know what kiddo is really doing. STAAR test achievement in TX is tied to ranking & rating of schools & ISD bonuses & TEA accountability. The problem is the pressure the teachers/ school/ ISD puts on these kiddos–all of them. My gifted child came home from 2nd grade worried about passing the 3rd grade STAAR. I’m like-“you’re not even taking it this year”.
After years of all this, and more, things improved all around & we are in a better place. To what do I attribute this? Well, I have spent countless hours reading state & federal education laws, emailing, I hired an advocate, then an attorney, I do lots of research & reading on my own; come up with lots of ideas; spent countless hours at ARDs, now also pre-ARDs; finding services, looking for & suggesting solutions… Countless hours!!! I can’t imagine many if any, other Title 1 or ELL parents doing this.
But nothing is “perfect”…
I was told this month by the ARD that in the LTE Tittle 1/ Bilingual school of over 915 students, my child was the only child in her grade that needed pragmatic speech & social skills so she couldn’t have lunch bunch every week because it was difficult to find kids to participate in it with her. Also the LSSP said that the computer program that LTISD uses to determine which kids get tested for Specific Learning Disabilities said again this year that my child couldn’t get tested for a math disability. My child was diagnosed privately in 2013 with a math disability. I repeated this to the Director of Special Ed for her to look into this.
I pray that “smart” change comes & that “people” are held accountable & that diversity programs start in schools that include teaching at the entry level and up about special needs and acceptance. A specific program is needed statewide that tells children that kiddo is different in some ways but very much the same in wanting to have friends, be included, be invited and be friended. Teaching materials should also include special needs characters and situations that provides insight & empathy.
Texas Listening Session does not allow you to leave a comment – HELP
Thank you for your comment posted on the “Baby G — Spreading Awareness” blog post.
The “Texas Listening Sessions” blog will be open for comments from December 5, 2016 through January 6, 2017. I would encourage you to revisit the “Texas Listening Sessions” blog post [https://sites.ed.gov/osers/2016/11/texas-listening-sessions/] and to submit any comments you may have during that time frame.