Gene Sequencing and IEP Goals — what do these things have in common? In one 24 hour period, I sat in rooms with people who have the power to make or break my kids. Experts in their fields; caring people with too much to do in a single day.
Connecting the dots and making sure nothing is missed is my job. I’m the mom of kids with disabilities. I hold the title of, “mommy-advocate.”
I’ve been introduced in pretty impressive ways during my 20+ year professional career: director of nonprofit agencies, graduate of prestigious leadership programs, Champion of Change. But let me tell you, “mommy-advocate” still scares me.
Nobel prize winner Elizabeth Blackburn found that “highly stressed women experienced the equivalent of an additional 9 to 17 years of aging when compared to non-stressed women” in her study of mothers parenting chronically ill children versus mothers parenting healthy children. Other studies have compared this stress to that of combat soldiers. Dads do not face the same stress levels, as mothers tend to be the main caregivers.
Marsha Mailick Selzer, an authority on families of children with developmental disabilities, describes this phenomena as “the physiological residue of daily stress,” in a longitudinal study of families of individuals with autism. For many years, I’ve described our journey as “hard hat parenting.” The only way to survive the journey and even thrive (yes, it’s possible) is to be strategic.
I remember the first Individualized Education Plan (IEP) meeting like it was yesterday, although it was nearly nine years ago. An IEP is the written document describing the child’s educational needs and the strategies to be employed to meet those needs. Special education is protected by the federal Individuals with Disabilities Education Act (IDEA).
My son was in second grade at a good public elementary school. He had been sick his entire life, and we were trying desperately to find an environment where he could be successful in school. He missed over 100 days of both, kindergarten and first grade, due to infections which is quite typical for a child with primary immune deficiency, even if they are receiving immunoglobulin infusions or IVIG regularly, like my son was.
The school was not happy about his doctor-excused absences but neither were we! The school had refused to move forward with the assessments in a timely manner which was legally within their rights as they have nearly an entire school year to perform these assessments. We wanted Ethan’s educational needs to be met so we private paid for the evaluations using a provider the district recognized as an expert. I proceeded to the meeting with these documents in hand, as well as the knowledge that Ethan had a sensory integration disorder as well as developmental delays, in addition to his medical issues.
During this season of my life, I was the Director of Operations for a regional children’s advocacy organization which basically meant I was a professional children’s advocate. Part of that position meant I was responsible for grants and programs that included advocating within the school system for children with disabilities.
Let me recap all of the advantages I had in preparation for this first IEP meeting: I was educated and knowledgeable about the legal rights of children with disabilities in educational settings, I had the ability to private pay for an assessment and I had professional credentials that provided credibility. I was also shaking in my boots when I left my office for the meeting.
The meeting was adversarial from the start as the school administration did not want to provide the services I was requesting for my child. Services require staff-time and money and many schools do not choose to prioritize children with disabilities even when federal law requires it. At the meeting, I am the parent (non-professional), and I am sitting at the table surrounded by educational professionals — teachers, administrators and district level personnel — so I’m severely outnumbered. That is a really scary place to be.
Years later, after building some confidence in myself and the process, I stood up towards the end of an IEP meeting for my daughter, quietly gathered up my documents, and said calmly, “Thank you for your time today. I want to let you know the next step for me here is to prepare the formal appeal letter that will go to the Superintendent.” That statement was quickly followed by a request for me to sit back down and a commitment to reach an agreement on my daughter’s services.
In contrast to the school described above, my daughter’s current school is amazing. They are truly committed to meeting her needs and have agreed to every single request for services I’ve made. Honestly, the meetings are still hard. Sitting around the table full of professionals discussing your child’s weaknesses is stressful. Having people scrutinize the way you parent, the medication decisions you’ve made, the therapy you’ve selected — that’s hard stuff. Justifying decisions that have been carefully considered based upon years of experience with your own child is beyond description. Yet, it’s also one of the most important things a “mommy-advocate” must do.
Less than 24 hours before this IEP meeting at my daughter’s school, my son and I were sitting in the office of an ultra-rare disease specialist. A geneticist we had been waiting to see for months. My job was to quickly summarize 16 years of Ethan’s life after conception and do it in a way that compelled this very busy doctor to take on Ethan’s case. All my powers of negotiation and recollection were required. If he takes the case, he will order complete genome sequencing and the medical school where he teaches will cover the exorbitant costs. All of the appropriate records must be at my fingertips and in my brain. The stress of the incredibly important moment must be pushed aside as I tell the story and the PTSD style recollection of his birth and illnesses must be overcome.
I’m happy to say the geneticist did take Ethan’s case and Jenna’s fifth grade IEP, which will transition her to middle school next year, is complete and ideal. Recollecting the complex set of skills needed to pull off these impressive feats, I’ve narrowed it down to six essentials:
1. Be prepared.
Create a rolling summary that can easily be updated when new information arises. I use a reverse-chronological order document in Microsoft Word that I update after every doctor appointment, major illness, change in medication and educational evaluation.
2. Know your stuff.
Have a clearly defined desired outcome in mind for the meeting. What do you want from the school or the doctor? Be specific and have this written down in advance so if you become emotional, you can quickly glance at this goal and get yourself back on track.
3. Look the part.
First impressions are key. Dress in a manner similar to the way the professionals will be dressed. Speak with authority using proper terms demonstrating you are educated on the topics at hand.
4. Make eye contact.
If communication is represented by 100 percent, words are only seven percent! Your body language and tone of voice are critical and represent 54 percent and 39 percent respectively. Making eye contact, having good posture, leaning in to the conversation — all of those things matter when you are working hard to be understood and to understand.
5. Be positive.
If you approach the interaction with negativity in any way, the professional automatically feels overwhelmed and sees you as less of a partner. In order to be perceived as a proactive problem-solver worthy of the partner status with the professional, you must remain positive.
6. Be appreciative.
Regardless of the outcome of the meeting, thank the professional for their time and for caring about your child. These people have very difficult jobs and more work to do in a day than they have time. Acknowledge that, and let them know you are there to truly be part of the solution for your child.
Hard-hat parenting is not for the timid, but with the right planning and strategies you can have successes for your child and help your family thrive.
I need to go now and get the records updated for this week’s set of appointments and meetings.
Follow this journey at Chasing Surrender
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