Educational Right for Children With Special Needs

My son needed an advocate from the time he started preschool. Back then, I didn’t know what rights we had. I didn’t understand how traumatizing a school experience could be for both children and parents until my son and I were in the thick of it. That’s why I want to share a few things that helped me navigate the system along the way. So buckle up!

Trust professionals - but also trust yourself.

Although credentialed professionals and specialists have opinions, it doesn’t mean they are accurate or applicable to your child. You know your child best. I’m not suggesting that you ignore every professional idea. Rather, think about what the pros are telling you and use them as a resource. 

Keep in mind that the Individualized Education Program (IEP) process should be a collaborative effort between families and school, and it can even involve outside specialists. The outside behaviorist I had hired long before we started the evaluation process came with me to our first couple of IEP meetings. She provided valuable input about techniques and supports that had, or had not, worked for my son in the past. This helped the school team adjust some of their behavior plans accordingly.

Push It.

Push, push and keep pushing for action and answers. It took me a year and a half of pushing in one of the best school districts in the state to get my son evaluated. When they finally did it, he qualified for services in numerous areas – benefits he had been denied for nearly two years of his primary education.

School systems and teachers are different.

Remember this is a process with the school system, handed down from higher-ups, involving legal tape, state regulations and financials. Unfortunately, I think people may want to blame individual teachers. That’s not always fair. Teachers are a part of the school system and most work very hard. Some proactive observant teachers are very supportive and care about the children in their classroom. We were fortunate enough to have a teacher like this. I can’t imagine how much worse things would have been if we hadn’t had her support.

I encourage communicating your concerns with the teacher by email and also by following up in person. Often teachers are willing to help, but they don’t know what they don’t know. Help them help your child by making the first move and speaking up.

Keep a paper trail.

I printed out every email with supporting evidence that my son’s case was not handled properly. There were things like his last name being misspelled on his records, errors of dates on documents, emails informing me the school lost track of him or forgot to give him his medication. Keeping track of evidence can lock in the evaluation and eventually get your child services. It paid to be the squeaky wheel. It showed my proactiveness and willingness to support my son. In the end, documenting everything helped hold people accountable and forced action. 

Now hiring.

Hire an advocate. Even if you think you can’t afford one, ask around. See if you can come up with a payment plan. If you really can’t afford one, call for a free consult or free legal aid.

I couldn’t afford one until I could –   meaning I needed one very badly because things had taken a bad turn for my son. Special Education Advocates are typically less expensive than lawyers and can be as effective. My advocate was a game-changer, and she was willing to work out a payment plan with me.

When I was on my own without an advocate, the school backed me into a corner and I would walk out of SST (Student Study Team) meetings being told that my son was “too smart for an evaluation.” I knew my son was intelligent, but I also knew he wasn’t reaching his potential. Yet, every time I requested a meeting to discuss the evaluation process for him, I was turned down. I had doctors’ notes and an ADHD diagnosis. Clearly, something was going on that needed to be addressed. So why wasn’t the school addressing it? I felt as if I were being gaslighted.

Once I had an advocate, the school stopped trying to do less than required.

An advocate has no problem being a “bulldog.” If you feel uncomfortable or too overwhelmed to push back, your advocate will have no such problem. The difference in the meetings I went to with and without an advocate was like day and night.  I finally felt respected, tones changed, and the staff and administration finally addressed issues they had avoided.

Don’t stop.

Please do not stop until they evaluate your child or send you in writing their reasons for denial, which you can then appeal. My son’s school did not do this, which was not proper procedure. If I had known this earlier and received a written denial, I might have asked more about their reasonings and appealed it, and we could have gotten support earlier.

When they go low, we go high.

Go as high as you need to go. I went all the way to the head of special education at the district level. I finally felt heard because I received an apology for how they had handled my son’s case. The apology offered reassurance and confidence. I was right to follow my instincts in knowing my son needed and deserved more in his education.

Shout!

Don’t be embarrassed to speak up loudly for your child. Of course, there is no need to be belligerent or unnecessarily rude, but I wish I had made a fuss sooner. I was so conscientious about “keeping the peace” with some of the staff, that I ignored many red flags.

Right before my son’s first IEP meeting, I was at a breaking point. On a day the school called me to pick up my son early, I lost it when I arrived. I yelled, “You have let him down! YOU have let him down!” I was wearing three-inch heels, while pointing my finger, which caused gasps and stares, and hushed a whole office of people. You know what? I wish I had yelled sooner, not waited a year and a half. My son didn’t have a voice. I had to be his, and I was tired of not being heard.

Become familiar with acronyms.

Before hiring an advocate, my head was swimming with terms like IEP, FAPE, 504 Plan, SST. Don’t be shy to ask the school, teachers, advocates or other parents if you are unsure of their meaning. There is also plenty of information online to help as well.

Here are a few I heard quite often:

· 504 Plan

Kidshealth.org has a great definition, as well as examples. My basic understanding of the term is that a child doesn’t need to have an IEP or be enrolled in a special-education program to receive the benefits of a 504 plan, which can provide accommodations in the regular classroom to help a student achieve academic success. kidshealth.org/en/parents/504-plans.html.

· IDEA — Individuals with Disabilities Education Act (IDEA 2004)

This is the law that makes it possible for students and families with disabilities to receive appropriate support. For a better understanding, see The U.S. Department of Education’s IDEA website, sites.ed.gov/idea/about-idea.

· FAPE — Free Appropriate Public Education

Wrightslaw website notes: “Under the IDEA, public schools are required to provide each child with a disability with a free appropriate public education (FAPE) in the least restrictive environment, at no cost to the child’s parents.

The legal concept of “FAPE” is shorthand for “free, appropriate public education.” In a nutshell, FAPE is an individualized educational program that is designed to meet the child’s unique needs and from which the child receives educational benefit, and prepares them for further education, employment, and independent living.” wrightslaw.com/info/fape.index.htm.

· IEP — Individual Education Plan

The first IEP meeting I attended was more than two hours long. The meeting discussed the evaluation results and the plan of action. It also gave me a chance to speak to everyone and ask questions. I would have been lost without my advocate. I also was advised to ask permission to record the meetings on my phone, so I had it for reference later.

If your child qualifies for services, you will have an annual IEP meeting scheduled each year to go over goals and progress.

You will also have a re-evaluation, or what is also referred to as a triennial IEP, which occurs every three years. At the three-year mark, your child will be evaluated again, and you will have an IEP meeting to go over the evaluation results to see if your child’s needs have changed since their first evaluation.

· SST — Student Study Team

For me, SST meetings were more informal. They included me, my son’s teacher and usually an administrator or support staff member. These meetings provide a chance to discuss your child’s academic progress and any general concerns. 

Prepare for changes.

Prepare for changes when advocating for your child’s educational rights. You may end up moving, having to switch jobs or start a new school (sometimes all of these). I was lucky and worked for a company that was supportive of what I was going through, needing to leave work early or have extended long meetings and doctors’ appointments.

We did not have to move, but we did change schools. Our school district placed my son at a school that could meet his educational needs at that time, which was a blessing. Embracing the new school and all the support it offered made a tremendous difference in our family dynamic.

Make new friends.

Find other parents going through similar situations. Speaking to other parents who understand your battle can lighten the load. They can help you laugh and lift you up. You can compare notes and share information. I’ve spoken to numerous parents who were very surprised at my experience and had no idea how the special education process works, or rather, what it takes to make it work in your favor.

Don’t give up!

Fight for your child. I know it’s hard. I know it can feel thankless, and I know you may lose a lot in this process. I lost my sanity a time or two, but who’s counting?

If you don’t fight for your child, no one else will. I didn’t give up, and my fight finally came to fruition. I now see my son with more confidence, allowing his potential to shine. It was a long, expensive and brutal process, but it was worth it.

It shouldn’t take this much for our children to get the educational support they need and are legally entitled to. Something has to change, and from what I experienced, it has to start with parents demanding accountability and action from our school systems.

Resources

Here are a few resources I found helpful:

 Children’s Health Council 

CHC is a vital resource for the Bay Area community and beyond. I was first directed to CHC when I was looking for a behaviorist when my son was 2. They pointed me to a list of local resources and that is where I found the professional behaviorist who became a part of our special education process very early on.

CHC has a wealth of resources and information to support children and their families. Their mission, as posted on their website states:

To transform young lives by providing culturally-responsive best-in-class services for learning differences and families from diverse backgrounds regardless of language, location or ability to pay.

 COPAA — Council of Parent Attorneys and Advocates

This is an excellent resource for exploring legal help and how to find an advocate.

 Wrights Law 

Their webpage states, “Parents, educators, advocates, and attorneys come to Wrightslaw for reliable information about special education law and advocacy for children with disabilities.”

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder (The Out-of-Sync Child Series), by Carol Kranowitz. (TarcherPerigee; Revised ed. edition, 2006)

This book turned on many lightbulbs to help me understand my child’s behavior and communication when he was a toddler. I learned how to be a better voice for him when I communicated with caregivers and educators.

Kendra Demler resides with her son in Silicon Valley. She is passionate about using her voice to advocate for families and children with learning differences in hopes of eliciting positive change in our school systems. As an avid runner, Kendra enjoys exploring the Bay Area's beaches and trails in her free time. She also volunteers in literacy and animal rescue programs within her community.