What does it mean to be the parent of a child with special needs? From the time you, your child and your family get the diagnosis, whatever it may be, your life changes in ways you could never have imagined. Your days are filled with appointments, therapists, physical needs that require attention, emotional needs that require patience and consistency, plus the necessary routines of daily living. You become a nurse, a tutor, a PT aide, an OT aide, a behaviorist, a chauffer, a case manager, and an advocate.
On top of all that, you may also be a spouse or partner and a parent to other children. Even if one child has sky-rocketed to the top of your attention, the others still need parenting. And, of course, you may also have a job that expects you to show up and be productive.
Just reading the above descriptions can feel exhausting and overwhelming. However, seeing those lists may also bring clarity; it explains why you have been feeling the way you have. For most of the parents of special needs children that I meet, those feelings include exhaustion, being overwhelmed, “stressed” all the time, depression, irritability, and, sometimes, incompetence.
Your child’s needs are clear and evident. You probably know how to respond to most of them, and have specialists to help you handle the things you don’t know.
The invisible part of this story is you, the parent. How are you going to be patient, consistent, and responsive when you are feeling exhausted, irritable, and overwhelmed? The answer is that you have to take care of yourself. You get to be your own best ally or worst enemy.
To be your best self, you have to be as much of a priority as your child. That brings us back to the basics. Practicing these 4 things daily can help you be the best you can be.
- Connect. Knowing others share your feelings can be affirming. It is not that you are incompetent; it’s that this is really difficult work, no two kids are the same, nothing works for everybody, and yet, somebody might have a nugget of wisdom that works for you. Those are important truths to learn, and the only way to learn them is by talking honestly with other parents.
- Make healthy food choices. That cookie or candy bar may feel good in the moment, but 20 minutes later you will have a sugar crash. That leads to the unhealthy cycle of snacking on junk food. Need something quick? Look for the healthier nutrition bars with plenty of protein and lower sugars and carbs. Try fresh fruit with nut butters or low-fat cheese. And buying veggies that are already prepped is not cheating. It is smart use of your limited time.
- Build in exercise where possible. Can you walk or ride your bike for that local errand? Can your child join you, if you can’t go on your own? I know one mom whose daughter is in a wheelchair who says, “No place is too far to walk.”
- Find another ally. Identify another person (perhaps the other parent?) who can learn how to take care of your child so that you can get some time that is just for you. That may mean time for a weekly class, a massage, or a walk without your cell phone. However, it must also include time for you to get a real respite – to sleep, to sit quietly, to renew.
Being the parent of a child with special needs means that you, also, now have special needs. It is easy to forget ourselves when our child’s needs are so demanding. The truth is you must maintain your own well-being in order to be the best parent possible for your child. Both you and your child deserve that.