Becoming Expert Parents of Children with Disabilities

Once your journey with special needs begins, you are connected to therapists, doctors, special educators, etc. – all with letters behind their names and business cards to distribute. Their reports are filled with acronyms and words you have never seen before. They have worked with hundreds of families of children with special needs, and so quickly you feel you have less to contribute when it comes to your child’s goals, services, and plans for the future. Your gut instinct quiets.

As a provider, I encourage you to do the opposite. Why? Because no one knows your child better than you do.

You are the one that is up at 4 a.m. when your child can’t sleep, cooking five foods for dinner to work around sensory issues, creating new games to help your child make friends, and spending hours with homework – no one else knows what works for bedtime, for Saturday mornings, for life. So trust that. Trust that in the midst of this confusion, of the unknown, of being on a path that you did not expect, that you are still the person that knows the most – you are the expert on your child. And giving power to that voice is what will help guarantee that your child receives the most individualized services possible, because although a specialist may have worked with 100 children with autism, for example, she has never worked with your son or daughter.

So use your expertise to teach the providers around you. Share the things that work and those that don’t – let yourself be heard. One of the parents I work with made her own business card. It states her name and under the title it reads, “Parent.” Don’t forget the power of this word. Settling into this expertise will make the unknown more familiar and will, without a doubt, create the best outcomes for your child. So listen carefully to yourself, stand tall, and share your voice – you are the expert, after all.

Here are 4 things parents of children with disabilities can do today to feel like the experts that they are:

1. Put together a binder with all of your child’s evaluation, treatment plans, goals, etc. Make sure to include a business card holder so you can keep track of all the providers in your life and take this binder with you everywhere. Not only will it help you bridge all your providers with one another, but it will be a visual reminder that you are at the centerpiece of this journey for your child. Another added benefit? Taking time to put everything in one place – in one binder – will help reduce your stress because you know where everything is!
2. Write down your questions! Somehow our best thinking happens when we are in the shower or in the car, right? Take a moment, pull over, and write it down in the same place always. Although we all love post-its, they get lost. Add a notebook to your binder and create the habit of writing all of your questions here. That way, when you are at a visit or meeting for your child, you can simply read your questions. It can be really hard to remember everything you wanted to ask, so help yourself share your expertise by writing it down first!
3. Ask questions! Providers are used to using acronyms and terms like “minimum assistance.” Make sure to ask them what these things means. By asking them and requesting for clarification, you are making a statement that you are a key member of the team and that you need clear communication to participate! Remember, you have a right to understand.
4. And the most important tip: Practice! Once you have your binder together and your questions written down, make sure to practice asking them. Practice what it feels like to say things out loud. It can be hard to ask questions or present concerns as they relate to your child, so practice saying these in the mirror or to a friend. This is especially important when it comes to special education meetings since those are usually packed with participants, and it can been overwhelming to talk to a larger group about your child, so do a little role playing and practice (out loud) what it feels like to be an expert at the table!