Whether your child is neurotypical or not, there will be times during your role as their caregiver when they will need you to advocate for them. It could be a situation as simple as having gluten free options at school lunch or as complicated as getting proper intervention for a medical diagnosis. Knowing how to effectively assess what your child needs and get it for them can be confusing—especially if people are giving you inconsistent opinions and feedback. Below, find some tips to make this process a little easier.
1. Understand your child’s rights
Children living in New York State are entitled to certain services based on their levels of need. For example, if your child is between the ages of 0 and 3 has been diagnosed with Autism Spectrum Disorder, they are entitled to free Early Intervention
Services provided by New York State. If your child has a disability they are entitled to a free and appropriate education under the Individuals with Disabilities Education Act. If your family income is at or below 130 percent of the poverty level, your child is eligible for free meals at school. Understanding what your child is entitled to is an important step to making sure they get it.
If you live in New York and want to know what government services are available to your child, you can call 311 or visit: https://portal.311.nyc.gov/
2. Trust your gut
There are situations that some parents are comfortable with, and other parents are not. Some families choose to vaccinate their children, and others do not. Some parents don’t want their kids to eat sugar. Some families don’t believe in therapy. If you find that your instincts as a parent don’t align with the people around you, that does not mean you are wrong. Feel free to discuss different perspectives and adjust your opinion if it feels right; but if you do research, talk to professionals you trust and your opinion doesn’t change—there is nothing wrong with that. Sometimes in social situations it can be uncomfortable to disagree with friends and loved ones. As your child’s advocate, you will need to find ways to navigate these situations. It might be fine to just say “in our family we do ______”. If people push back, it may be uncomfortable and you may have to sit with that feeling of uncomfortability—that is ok too. It’s being a responsible parent.
3. Talk to other parents
You are a parent, which means you are always behind on something. When do you have time to research how to navigate your kid’s IEP meeting or the best therapy for a specific diagnosis? How do you even know if your child needs services anyways? One of the great things about being a parent is other people have been through the same thing and done the research already—and they are often willing to pay it forward. You don’t have to be a big social media person to find a special interest parent group on Facebook. These groups are wonderful platforms for parents dealing with similar challenges to inform and empower each other. In addition to parent support groups available, there are other parent’s in your pediatrician’s office, the park or the PTA who may have navigated your situation last year. They say it takes a village to raise a child—it’s ok to ask the village for some guidance!
4. What if I disagree with my child’s provider?
There may come a time when your child’s teacher, pediatrician or therapist says something that just doesn’t feel right. It may be awkward to disagree, even though you don’t feel comfortable. After all—they are the professionals…right? In order for a provider to care effectively for a child, parents need to be on board. Good providers understand this. For example, in ABA, if parents are uncomfortable with a recommended research-based intervention, the therapist will do their best to adjust and tailor their approach to fit the family they are working with. If a family is working on sleep training and they know they cannot let their child “cry it out” for hours, the ABA provider will not ask them too. Telling parents to do something they know they can’t do is setting the child and parents up for failure. Instead the therapist will do their best to create an individualized research-based approach that feels comfortable to those implementing it. If they cannot, the provider will talk to the family about future steps. Respectfully sharing your concerns with the approach your child’s provider wants to take is an important part of your child’s success.
5. When to advocate
There will be many situations your child experiences that could be improved in some way. Maybe they aren’t crazy about the school lunch options. It’s not the best day of the week for their favorite after school activity. They really prefer to always write in blue pen instead of pencil. Sometimes our children have to learn to sit with being uncomfortable or not having their way. Other times they need their Caregivers to advocate to get them what they need. They don’t like starting the day with their least favorite subject? That’s a bummer. They will fall asleep if they can’t get physical activity after lunch? That’s something that needs to be addressed. If your child’s health or safety is in question, it’s time to intervene. If your child cannot get through their school day or function as they need to, it’s time to speak up. If your child isn’t getting things exactly their way—it’s good to let them sit with that and learn about how to cope with frustrations and disappointments. If you’re not sure if it’s time to advocate, you can always ask other parents, teachers, therapists or your pediatrician.
6. Remember, the people you are addressing are people too
It’s very easy to become an outraged parent. A parent’s job is hard, high stakes, and emotional. It does not take much to make a parent feel angry on behalf of their child, and there is nothing wrong with that. Unless it inhibits a parent’s ability to get their child what they need. As hard as it is, most parents will get results by being respectful, honest and authentic–not getting angry. The majority of providers are doing their best to help you and your child, so speaking to them as a concerned parent—not an outraged parent, is likely a more effective way to get the response you are looking for. The same is true when dealing with any type of service provider.
Written by Dorrie Barbanel, LMSW, BCBA, LBA