My daughter was three years old when we made our first trip to STAR Institute for Sensory Processing Disorder.  The staff’s appreciation and awareness for both the subtle and overt challenges she faced brought us back to Denver from Northern California three more times for therapy, testing, and treatment.  With each visit we took away something new and constructive to help our daughter find peace in the midst of the brain-body conflict of her non-typical sensory processing abilities.  

Many parents and children struggle with the transition of early intervention services to the school based system of identification for services at age three.  For many reasons, large percentages of children lose access to public services during this transition time.  Even if a child remains identified, the level and type of services can be drastically different than they were during those first few years.  

The absence of Sensory Processing Disorder from the DSM further complicates matters for parents who are grasping for any form of proof to show their school district why their child needs the ongoing help; especially as the child now has to cope with integrating academic demands into their life.  Dwindling regular education and special education budgets only exacerbate this problem.

Focusing upon the functional outcomes of your child’s disability can sometimes be an effective strategy when engaging school district personnel.  At home, parents learn to minimize or mitigate stimuli that can be noxious to their child, but in schools, it is frequently unavoidable. Successfully asking a public school to reduce the amount of sensory triggers for your child can be incredibly difficult.  Parenting a sensory child requires ongoing and creative advocacy.  Unlike private or early intervention services, simply describing what your child struggles with to a school may not be effective.  Semantics and delivery matter – put the focus upon the academic access and outcome issues as they relate to how your child processes the world.  

If you are unsuccessful on a personal level with your child’s teacher and administrators in getting the help that your child needs, the only obvious options for families seem to be to simply agree with whatever the school is, or is not, doing for your child; or to engage an advocate or attorney.  The former puts your child at risk for emotional and developmental harm, the latter will almost always frame you as confrontational or difficult parent. An often overlooked or unused avenue to explore is the use of political pressure and leveraging the human connection.

Just about every school district is overseen by an elected board of trustees.  It is the school board’s responsibility to represent the public’s interest – they are not employees of the school district. Children in special education represent 13% of the national public school student body.  The CDC estimates that the number of disabled children is higher (reporting that one out of every six child is disabled).  Special needs parents represent a large block of the voting and tax paying public, yet we often are underrepresented.  Some ways to advocate for your child in a manner that can be viewed as less confrontational by your school district could be to:

• Ask for some face time with one, or several, of your school board members to discuss your concerns.  (Your school board members’ contact information should be publicly posted on your school district’s website)
• Ask to be on your district’s parent advisory committee for special education.  And if there is not one, form one.  (There should be a link on you school district’s website, if not email your superintendent directly)
• Form a special needs/special education parent teacher organization.  This can put teachers, administrators, and parents into a different social situation that allows for all parties to see each other as cooperatives not competitors.  (More information on how to start a PTA can be found here:  https://www.pta.org/home/About-National-Parent-Teacher-Association/join/start-a-pta. More Information on how to start a PTO can be found here:  https://www.ptotoday.com/pto-today-articles/article/837-how-to-start-a-pto)
• Organize similarly situated parents in your community and present your concerns at a public school board meeting.  Ask to have special education placed on a formal school board agenda.  (Your school district’s website should provide you with contact information for your superintendent, director of special education, and school board members)
• Run for school board yourself and make special education your platform.  (Filing practices and timelines will vary depending upon your municipality, contact your city offices for more information about how to get on the ballot)
• Engage your local newspaper to report on special education related issues and get special needs families to write letters to the opinion/editorial section of the paper describing the difficulties they have had with appropriate school based services. (Check with your local paper for contact information)

At the end of the day, potentially the most effective method of driving change in your district is to get the topic of special education discussed openly, honestly, and in a public forum.  For far too many families the issues we face get trapped inside the walls of IEP meetings and parent-teacher conferences.  Once administrators and elected officials begin to discuss the shortcomings of special education in the public space, a large portion of the ownership and burden of that imperfect system is lifted from your shoulders and placed upon theirs. 

Aaron J. Wright is a Family Nurse Practitioner and the Trauma Program Manager for a Level 1 Adult and Pediatric Trauma Center. He is also the author of Daisy Has Autism and runs the website www.daisyhasautism.com.  He and his wife have two children and live in the San Francisco Bay Area.