Being a parent of a child that is specially-abled looks a lot like facing hard truths head on, being able to admit those truths to yourself, and finding support.
Jolene Philo, a published author and speaker, wrote an article about 11 things that she found helped her with the role of parenting a specially-abled child.
Here’s our own version of her advice:
Embrace the stress: It’s not going anywhere. And it’s better to acknowledge that it’s there. You don’t let the stress beat you, but you point it out for the sake of doing something about it.
Stress is a symptom of something else, so identify the source: It’s grief. In order to be a parent of a specially-abled child, you have to let yourself grieve. You feel a sense of loss — okay, now grieve. Give yourself the freedom and acceptance to grieve.
Deal with the elephant in the room — guilt: The hand your child was dealt is not your fault, but it feels like it. You are a good parent, even though you constantly blame yourself. Find someone you can trust to counsel you or someone that you can be open with to vent to. Get rid of that guilt!
Start asking for help: Be prepared for people to ask you what they can do for you — make mental notes of the things you know someone else could do without too much trouble, and don’t be afraid to ask them to do it!
You are not the sole caregiver: Step down from the role you’ve given yourself of “sole caregiver.” Although we know that you are probably the best at caring for your child, there are actual “caregivers” that have been trained specifically for taking care of your child. More than that, though, others can be educated more about taking care of specially-abled children and come alongside you to assist you in every day life!
Form a support system: You need people you can reach out to when life is getting hard or when you need a helping hand in the midst of juggling so much; you need a group of people that can encourage you and stay up to date on your life — it will make you feel like you aren’t alone!
Take care of yourself: Whether that’s cutting out space in your day for some you-time or eating well and exercising, it’s important to make sure that you are physically and emotionally healthy when parenting a specially-abled child.
Don’t be too proud for professional help: If you’ve admitted to stress, pinpointed the root of your stress, allowed yourself the freedom and grace to grieve, then admitting that counseling sessions might be a good idea shouldn’t be too hard for you. If these exercises above don’t seem to be enough, then there are always more outlets a therapist could offer you in order to reduce the stress in your life.
Our very own Dallas Crum, head of community relations and business development, opened up about life as a parent to two specially-abled children.
He was honest about the real fears that come with the territory. “I’m most afraid of the unknown. Will my daughter be able to have a relationship and get married? Will my wife and I ever be empty nesters? Will our daughter live that long? What kind of future does my son have? Will he be able to support himself one day? Will he be accepted socially? Will our marriage make it through this? Will I make it through this? No answers. Knowing more than the doctors you see. Endless therapy, unique diets, financial strain, countless visits to every type of “specialist” and every type of doctor you can think of. IEP’s. Fighting to get your child the coverage and services they need with insurance, the school system, Medicaid, doctors, therapy providers, etc…”
So we asked him if there’s anything that makes life easier in spite of the fear and struggles: “What makes it easier? There is no ‘what makes it easier.’ What I do have that keeps me going? Faith, Love, Hope. I love those kids. No matter what the outcome for them and our family is, I wouldn’t trade it or who they are. This is my family.
Lastly, we wanted to share some advice from one parent to another: “It’s ok to cry, it’s ok to talk about what could have been or what may never be, It’s ok to wonder how in the world you are going to take another step. I would tell them you will have doubts, you will question why, you will have unanswerable questions. You may doubt God, your Faith. I wish I could end with a high five and a, ‘Don’t worry! it will get better!’ the only problem with that is, It’s [crap]. Try not to listen to people who mean well but say things that hurt, cause more confusion and mixed emotions. They don’t understand… They are saying the cliché phrases that should never be said.”
Still, Dallas wanted to end with this very important tip on parenting a specially-abled child: “I can say though, whatever the outcome, it’s worth it. Even if I don’t get to see my baby girl grow up and get married, I will never trade a moment I am blessed to spend with her. Even if my son doesn’t progress to a level that he can function independently one day, He is my son and he is enough, no matter who he is.”
It’s worth it. It’s okay to grieve, and it’s important to admit to feeling stressed or guilty on top of making time to take care of yourself. But it’s worth it. And it’s possible.