My husband and I are the proud parents of two young women. Our younger daughter is eighteen and has multiple disabilities. Parenting any child is not for the faint of heart and can be simultaneously exhilarating, exhausting, exciting, and terrifying. Parenting a child with a disability takes all those highs and lows to a whole different level.
Parents of children with disabilities are some of the toughest and most resilient people I know. Please don’t tell us that this is all part of some special plan, or that we have the patience of a saint, or even worse – that God doesn’t give us what we can’t handle.
As a fellow exceptional parent once said, You just figure out what needs to be done and you get it done because you love your child. I have certainly made my fair share of mistakes, but I have learned a few things that I wish I had known at the start of this journey.
1. You are the most knowledgeable expert about your child. Feel free to consult with doctors, specialists, and professionals, but at the end of the day, you know your child better than anyone else. Don’t let anyone tell you differently or make you second guess yourself or your child.
2. There are a lot of people out there peddling snake oil and magic cures – beware! It’s okay to try new things, but be cautious and be sure to look for evidence-based treatments and therapies.
3. You are your child’s best advocate, and you will have to be prepared to fight for her. Constantly.
4. Fighting constantly, in addition to caring for your child, is exhausting.
5. Be prepared to be your child’s case manager and keep records of everything: medical records, educational assessments, evaluations, etc. You will need this information frequently, and it should be easily accessible and organized. Consult with other parents of children with disabilities and other experts in advocating for your child about physical health, mental health, education, living environment, and her future as an adult. Ask lots of questions and take lots
of notes.
6. You should be working to help your child eventually advocate for herself in whatever way she is able to do so.
7. Being an advocate means using a person-centered approach. You have to think about what your child needs and wants in order to thrive and succeed.
8. Not every IEP meeting, assessment, or evaluation has to be confrontational (although some certainly will be). In fact, we always bring donuts or bagels to any meeting just to break the ice. This sounds odd, I know, but eating together helps people feel more like they are on a team working together in the best interest of your child, rather than adversaries working against each other to achieve different ends.
9. Be sure to recognize and express your gratitude to the people who help care for your child: teachers, aides, attendants, bus drivers, speech therapists, occupational therapists, physical therapists, job coaches, social workers, administrators, all of them. It takes a village, people!
10. Your child is entitled to privacy and dignity. Before posting about your child on social media, make sure to get her consent. If she is unable to give consent in a meaningful way, ask yourself if you would be comfortable if the story or picture was about you and was posted in a public setting.
11. Presume competence and assume your child understands everything you and others say about her in front of her, and act accordingly.
12. Find your child’s people. These are people who like and/or love your child unconditionally and will be there for her no matter what. Everyone needs friends.
13. Find your people. I can’t stress this enough. You will need support on this journey, which can be pretty lonely. You need a support group, even if it is a virtual support group online. It’s okay to ask for help. Most people want to help, but they don’t know how.
14. Take joy in the victories, whether large or small.
15. Take one day at a time.
16. Try not to compare your child to your friend’s children. Embrace her successes and joys and know that everyone has something difficult or challenging in their lives. There is no competition as to who has it hardest.
17. Find happiness in the small things.
18. Take care of yourself. You won’t be able to effectively care for your child if you aren’t healthy, either mentally or physically. Find a healthy outlet for stress – running, yoga, meditation, reading, crafting, etc.
19. Don’t try to fix your child. You need to help her strive to be the best she can be, but you also need to accept her for who she is.
20. Your child is stronger than she knows.
21. You are stronger than you know.
22. In the words of Jess Wilson from Diary of a Mom on Facebook, “Now is not forever, and never is a load of crap.”
Your parenting journey is going to look different from most people’s. Enjoy your child for who she is and try not to worry so much about what is scary or unknown. You will probably learn a lot about yourself, and you will definitely meet some of the best people along the way.
photo: Scott Schwartzkopf
