Don’t limit me

My son is in kindergarten. He loves his school, and so do I. But I am already seeing how his school wants to keep expectations low for him due to his diagnosis, presumably so the educators don’t have to put as much effort in to accommodate his special needs and help him succeed in life.

Boy in a box

Don’t box me in.

It’s not the teachers’ or administrators’ fault. They are handcuffed by federal regulations, local policy and tight resources. Yet they should be adhering to the spirit behind why the IDEA (Individuals with Disabilities Education Act of 2004, Part B ) was created, which legally guarantees my son a “free, appropriate public education.” All children should be given equal opportunity.

Rapha holding sign: baseball player

When I grow up…

About a week ago, Raphael’s special education teacher basically let it slip that she doesn’t expect him to reach grade level in academics and that his disability means that he won’t be offered to learn the same things as other kids.

In the school hallway after a parent-teacher conference, she said, “I don’t know if he will ever be at grade level. When he is 18 to 21, he can learn vocational skills through the school district.”

At first, I was caught off guard by the comment. I told my husband on the way home that I felt “unsettled.” Eventually, I felt furious.

How is my child ever going to be at grade level with an attitude like that? How can someone, who should be his primary supporter at school, predetermine his future when he is only 5 years old? What kind of vocation is she talking about? (Not everyone can be a grocery bagger, right?) Who knows what he’ll be able to do?

kids and para in school hallway

With a buddy and a para at school

Certainly, not much if we don’t expect it or aim for it.

At his IEP (Individualized Education Plan) meeting last spring, the plan stated that Raphael would be taking an alternate state assessment in third grade and beyond as opposed to the standard assessment nearly all children in American public schools take. When I asked how teachers would know whether he would need the alternative at that point (after all, he was still in Pull-ups and pre-K at the time), the school representative said, “Oh, don’t worry. You can change which test he’ll take at your next IEP meeting in three years, which will be before third grade.”

But, by setting my son up for the alternate test now, I believe the school only has to teach him to that “alternate,” i.e., lower, standard.

With sudden hindsight, I now wish I had pushed harder to make the IEP team change that statement about alternate assessment. But I had already pushed for so many other things in his education plan by that point – I had held up the IEP process through several meetings and letter writing campaigns to ensure higher goals and enough supports for my kid – that the alternate-standards topic wasn’t on my radar. And third grade seemed so far away. I chose to trust the system and wrap up the IEP already.

There are always so many competing interests (raising kids, running a home, working – and the excessive extras required of being a special needs mom) that sometimes I just have to shift priorities and pick my battles.

But Raphael needs his educators to expect big things from him; like I do. He can’t achieve if he doesn’t try. He can’t achieve without those supporting him being his true champions. He can’t reach his potential if he isn’t even given the chance to learn the same things other kids learn and be tested to the same standards as his peers.

Now my concern is becoming even more concerning.

The ESEA (Elementary and Secondary Education Act, also known as “No Child Left Behind“) certainly needs updating, and it is currently being reauthorized through Congress.

The “Student Success Act” the latest iteration of ESEA reauthorization, which modifies existing law to give states more control over education, reduces federal oversight and removes some of the flawed school accountability measures, passed  a U.S. House committee two weeks ago with opposition from most Democrats. Some amendments have since been made, and another vote is expected this week.

The “Student Success Act” may be fine for many typical kids, but the National Down Syndrome Society opposes it because, among other things, it does NOT:

  • Guarantee that kids who take special, instead of standard, tests are not automatically taken off the diploma track. Just because a kid needs certain curriculum modifications and takes the alternate assessment on alternate academic achievement standards (AA-AAS) shouldn’t mean he can’t learn enough of the general curriculum to earn a high school diploma.
  • Ensure desegregation. Students could be removed from general education classes just because they take the alternate assessment. Apparently, that’s the way things still work in some states. Taking away special ed students’ opportunity to learn along with their peers hurts all learners and is the definition of limiting people.
  • Limit the number of students who take the AA-AAS that can be counted to determine school performance measures. National intellectual disability (ID) stakeholders and researchers say that currently, too many students with ID take the alternate test. The 1 percent cap on how many proficient and advanced scores from the AA-AAS that can be calculated into achievement targets needs to be maintained. If I’m understanding this right, when kids, who could do better, are taught less and still achieve high results on the less rigorous assessment, their test results make school districts look like they are doing their job, when really they are just teaching more kids to achieve to a lower standard.
  • Ensure students have access to highly qualified teachers. Abundant research shows that learners with high needs are most likely taught by the least qualified teachers. I know my son gets substitute teachers with minimal training regularly. In our case, they are lovely people, and he manages in spite of them, but just putting a warm body in the classroom to sub for his regular paraprofessional is not quite the competent teaching my son is supposed to get by law.

Various national educators’ groups and others also oppose the “Student Success Act” for reasons beyond its effects on kids with disabilities. Those who oppose the act say it will limit education for at-risk and economically disadvantaged youth.

A separate reauthorization bill was introduced by Senator Lamar Alexander (R-TN) who chairs the Health, Education, Labor and Pensions Committee: the “Every Child Ready for College or Career Act of 2015.” Sounds great, right?

It apparently takes away a parent’s right to have a say in what her child will be tested on and which curriculum her child will be taught. I already have to advocate a ton for my son’s schooling, even though we’re in a school district that rocks. No way would I want educators to exclude me from decision-making on my son’s behalf.

Rocky Mountain Down Syndrome Association’s recent email blast to subscribers urges citizens to speak up right away. It says that research reveals that only 1 percent of students – those with the most severe disabilities, which the National Down Syndrome Congress (NDSC) says corresponds to 10 percent of students with disabilities – should take the alternate assessment.

Meanwhile, most students with Down syndrome actually take alternate assessments at some point in their education. Heck, my kid’s school is already planning that for him when he reaches third grade.

friends hugging on playground

On the playground, with hugs from friends

I doubt my son would fall under the most-severely-disabled category. He is already starting to read, write and do math, not quite like his peers but in some ways to a larger extent than his older, neurotypical brother could do at the same age. Raphael has many friends and is a true asset to his class.

He and people like him, who can’t always speak up for themselves, need others to stand up and be their voice.

R and his preschool para

My teachers love me

That’s why I wrote the letter, below, last Friday to our senators from Colorado, the Honorables Cory Gardner and Michael Bennett. Feel free to copy and paste from this post and write or call both your senators now because this is important (and it’s actually easy to do).

Since I sent my letter, I’ve learned that U.S. Senator Bob Casey (D-PA) announced legislation called the “Empowering Parents & Students Through Information Act,” which would ensure that parents can partner with educators and have a say about what their kids with disabilities get to learn. Senator Chris Murphy (D-CT) also introduced a related ESEA bill that NDSC says contains “critically important alternate assessment language.”

me and R at state capitol

Being activists at the state capital a few years ago

If you care about equal opportunity in education, and you are willing to speak up, these are the important points to make (I didn’t have all this info when I wrote my letter):

  • Please tell your members of congress that inclusion in the general education curriculum and the chance to earn a diploma are essential for students who take an alternate assessment.
  • MOST IMPORTANT: Request that the law requires states to ensure that parents be well informed and able to make decisions for their child about which assessment to take and that students who take alternate assessments can be included in learning the grade-level curriculum and are eligible to try to earn a regular high school diploma (as provided in the combined Casey and Murphy bills.)
  • Explain that federal accountability is essential to ensure states and districts use federal funding to keep education expectations high and improve student outcomes.
  • Ask your senators to encourage Chairman Alexander to work on a new bill because his draft bill had provisions that would harm students with disabilities.
  • Tell them that any ESEA bill must add a 1 percent cap to the number of students who can take a state’s alternate assessment and be counted toward school goals because alternate testing is not appropriate for most students.

baloon over schoolyardUse this link to reach your senators. Or call the Capitol Switchboard at (202) 224-3121 and request your senators’ office.

No one knows what my child’s intellectual achievements will be or whether he will even be able to keep up with his peers, but I do know that if he isn’t given the chance, he most certainly will not.

Here is my letter from last week…

Subject: Opposing ESEA Reauthorization Bill because it limits students with disabilities

I am a mother of two children who attend public school (K-5) in Colorado. They are learning well, and we are proud of them and their school, but my youngest who has Down syndrome is already not held to high enough standards overall, and the district’s and Department of Education’s expectations for him are likely to prevent him from achieving a high school diploma or being prepared for post-secondary education or an entry-level job.

I have high expectations for my child, and educators should have the same high expectations. Teaching him and others with disabilities using weaker standards limits his future. Having parental decision-making power about what is taught and whether alternative assessments should be used is critical to his success.

As you know, Senator Lamar Alexander (R-TN), Chairman of the Health, Education, Labor and Pensions (HELP) Committee, recently released a draft bill to reauthorize the Elementary and Secondary Education Act (ESEA), called the “Every Child Ready for College or Career Act of 2015.” Senators Alexander and Murray (D-W), ranking minority member, are negotiating changes to the bill but many do not understand the impact these changes would have on students with disabilities.

Senator Alexander’s draft bill severely weakens key measures in current law that support students with disabilities to be able to achieve to their greatest potential and, in turn, to contribute their utmost to society.

Three parts of the bill threaten quality education and the future of students with disabilities:

  1. Allowing any student with disabilities to be diverted from achieving a high school diploma;
  2. Teaching any child with disabilities according to weaker standards, therefore making him or her not ready for post-secondary education and entry level jobs;
  3. Removing the decision-making from parents about what is taught and assessed for all students with disabilities.

To keep protections in place for children and youth with disabilities and to keep expectations high and their future opportunities open, please know that:

  • I have great expectations for my child, and public schools should have those same high expectations.
  • I believe students with disabilities should have equal opportunity to earn a high school diploma.
  • Having the ability to decide, as a parent, whether to remove my child from the general curriculum or standard testing is imperative.
  • Any revision to ESEA that allows for unlimited numbers of students to be assessed using an alternate assessment can be detrimental to student advancement. Research tells us that less than 1 percent of students with the most significant cognitive disabilities need alternate assessments. Therefore, no more than 1 percent of students should be tested with an alternate assessment so that as many students as possible can earn a high school diploma, a chance at further education, and the opportunity to work.

Please oppose Sen. Alexander’s version of the reauthorization of ESEA and make sure any reauthorization of ESEA includes all students with disabilities in the assessment and accountability systems using the same standards and assessments with accommodations.

Students with disabilities can achieve, they can work, they can contribute to society, and they can go to college and other education programs after high school. Don’t limit them by having low expectations and setting a too-limiting track for their future when they are still little.

Please limit the ability of schools to lower expectations for my child by limiting the use of lower standards and alternate assessments. The only people who should be able to make the decision to lower expectations for a child should be his or her parents. Senator Alexander’s draft bill puts the future of children with disabilities at risk.

with Governor Hickenlooper

Meeting Gov. Hickenlooper before his re-election.

 A note to readers:

I don’t consider myself uber political, but I am always concerned about the public, from the standpoint of you and me, that is, ordinary people in the community, not the powers that be. I suppose I am getting more involved by researching and writing this post because it’s personal: I have kids in public school. (I paid little attention to education policy before I had offspring.)

Let me know your thoughts in the comments. I’m learning. I’m interested.

About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
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One Response to Don’t limit me

  1. Yay Eliza – always such well thought out words, and such a beautiful message – I will join you in calling my senators!

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