By Charisse N. Montgomery
As a new parent and a parent of a child with special needs, the past seven months have been a whirlwind of activity and emotions. My son, who was born with a congenital myopathy (muscle disease), requires quite a lot of care, and since his birth, I have received requests for advice about managing life with a child who has special needs. While I am pretty new to this and am by no means an expert, I have learned a lot from my own experiences and from those of my parents (who also parented a child with special needs) and my sister (who has a physical disability).
Be a constant optimist on behalf of your child.
Having a defeatist attitude about your child’s abilities or potential will inevitably result in less effort toward helping her/him reach that potential or build those abilities. I am constantly surprised when my son does something I didn’t know he could do, which tells me that his potential goes beyond what I know at any given moment. I am, however, a steward of that potential as his parent. I can either thwart his potential by carrying low expectations or I can encourage his growth and development beyond my own imagination. I choose the latter.
Be an occasional realist.
Dwelling on the negative aspects of where your child is at any given moment can lead to a defeatist attitude, so visit realism on occasions when it matters, while dwelling in optimism as much as possible. Evaluating where your child can go needs to go hand in hand with truly understanding where she/he is. A solid diagnosis is the first step in this process, and for many families, this step takes years and years. Getting what your child needs and doing the best job you can as a parent often involves having as much information as possible, and appropriate treatment requires a diagnosis.
Your plans for the future need to include both the best and worst case scenarios. For example, the optimist in me wants to believe that one day, my son will experience a normal childhood and will be running around destroying things in no time. However, the realist in me understands that his disease means that he might not be able to do that, which will influence our decisions about where to live, what type of house to buy, etc. Furthermore, being a realist involves using every resource that is currently available to help your child. My son has various therapies that he receives and many services available to children with disabilities. Research what your child needs and take advantage of every one of them. It’s not about asking for charity; it’s about harnessing every possible advantage that might benefit your child.
Get organized and equipped.
Particularly if your child has a disorder that requires lots of medical treatments and appointments, it is necessary to organize your life. Keeping track of appointments and bills and doctors’ recommendations is not easy to do when you are constantly going from specialist to doctor to therapist, but staying organized makes it less likely that you will miss something important. When my son was in the hospital, I kept thorough notes of the information I received in the doctors’ rounds each day. One day, my son was particularly irritable and his heart rate was exceptionally high, I picked up on a medication error that the doctors missed because of my notes. In addition to being organized, it is also necessary to be well equipped for whatever needs your child has. Since my son needs nurses in the home for most of the day, we installed cameras that record what happens in his room. This equipment helped us to identify nurses who weren’t up to par in caring for him. While the cameras aren’t a medical necessity, they are important to my son’s wellbeing. Being organized and equipped has helped us to remain aware of what is going on with him.
Find time for yourself.
Admittedly, I am not great at practicing what I’m preaching on this one, but it’s a work in progress. In order to have the energy and focus to give and give to your children and family, you have to give something to yourself. If you can do something for yourself every day, that’s great. For me, it’s more like once a week or twice a month, but it’s better than nothing. I take an hour and go shopping, or I take a yoga class. Whatever it is, it’s time for me to feed my own spirit and remember who I am outside of the medical situation my son is dealing with. Recharging my own batteries helps me to attend to the needs of my son and my spouse without feeling worn down.
Don’t forget to enjoy the journey.
Parenting, like life, is more about the journey than about a destination. I don’t know what the future holds for my son, but I know that I enjoy every moment I spend with him. I relish each small accomplishment he makes, and I try to give him all the love and attention that every child deserves from a parent. Time flies by so quickly that I truly don’t want to miss a thing, so I try my best not to. This beautiful, intelligent, joyful child was placed in my life for me to nurture and care for, and I appreciate him for who he is and for who I will help him to become. Parenting is more than a job; it is a calling – a calling for which we need to be fully present in order to produce something great.