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:
Many families live with mental illness. One mom tells the significance of the hole her teenage son punched in the wall.
Parents have different ways of celebrating their children’s milestones. Often, parents who have a child with a disability celebrate the tiniest of milestones. It’s just a difference in perspective.