My life as a mom of 2 kids with "special needs"

How do you define needs as being special? All kids have needs. They need food, clothing, safety, activity, and most importantly, LOVE. One could argue that neither of my kids have "special needs" in the usual sense, but, whatever words you choose to use, they keep me very busy.

My baby has congenital cytomegalovirus or cCMV and even though he looks like a "normal" baby, he has medical needs. He is given antiviral medication twice each day to help his immune system suppress the virus so it doesn't attack his brain and other organs. The medication has its own possible side effects. Since cCMV affects brain development and the medication is relatively new, there is no way to know for certain how affected he will be and his condition can change over time. Because of the complications that can occur with cCMV and the treatment, in addition to all his regular pediatric "well baby" appointments, he also needs checks of blood chemistry, metabolic function, viral load, hearing, vision, motor skills, and cognitive development. He has follow-ups with his immunologist every month or two, and has physical therapy every week. Some of these visits are nearby, others require a full day trip to a children's hospital more than an hour drive from our home. All this medical attention, and uncertainty, began months before he was born. I had 10 ultrasounds, many non-stress tests and blood tests, and even a fetal MRI. The doctors were concerned that he might have several other serious medical conditions that, fortunately, never came to be. We have high hopes that the medication and early intervention services will be enough to give him a "normal" childhood by the time he gets to school, but if he should develop other issues, I know we will do our best to overcome those difficulties and let him be a kid.

My toddler is "spirited" - high energy, inquisitive, intelligent, talkative, stubborn, and sensitive - and even though he looks like a "normal" toddler, he has high attention needs. Most days, he tears around our small house, playing with his trucks, blocks, kitchen, and other toys. I try to get him outside as much as I can when the weather is good, but trying to convince him to get dressed appropriately for the weather, including shoes, can be quite a challenge. He is "into everything" all the time: climbing on furniture, knocking things over, making messes, and pushing buttons. He loves asking questions, figuring out how things work, and often learns new skills quickly. It didn't take long for him to figure out how to circumvent drawer latches, climb over safety gates, or unlock the screen door and let himself outside. He enjoys music and has a very active imagination. He is kind and likes to help and share, but doesn't always accept that his "help" is not really helpful or that not everybody will share everything all the time. He can be easily frustrated, throwing things on the floor and screaming. He will demand assistance for tasks he can do independently, insist his favorite food is "yuck!" and often has difficulty transitioning from one activity to another, even when what is next is something he likes. I'm sure it must not be easy to have a brother that needs so much attention, especially when you need so much attention yourself.

As you may imagine, the combination of these two small people in one household can make for quite the challenge. It can be hard for us to get out the door. By the time I get one kid ready to go, the other one needs something, and then the first one again, and soon, it is nap time. There are always loads of laundry and dishes waiting to be washed or put away, assorted toys to be picked up, a floor in need of sweeping...but that's true for every home with kids and can be overwhelming enough on it's own. For us, there are always medical offices to call, insurance paperwork to wrangle, and records to keep track of. Scheduling of playdates and "mommy and me" classes has to coordinate with the therapy sessions and doctors appointments. I feel bad when I have to bow out of getting together with friends or family, but sometimes, I just don't have the energy to do anything more than collapse on the couch and watch tv.

I have my own needs too. I have never been someone to sit around doing nothing for very long, and I have always been a very engaged person, involved in several activities at once. To retain my sense of self amidst all this responsibility to my children, I am involved in a variety of groups, most of which support moms and/or their children. I also try to take time to do healthy things to relieve my stress, provide a sense of accomplishment, and stay intellectually engaged: reading, mentoring, web design, and mud runs. 

It is difficult to balance taking care of the kids, and the house, and myself. Some days I want to scream, throw things, and pull my hair out. Other days I want to run away. Fortunately, I have a wonderful, sweet, involved husband and caring, supportive friends and family.  Everyday, I'm glad I can be there for both my kids and try my best to meet all their needs, special or not. 

For more information on CMV, please visit www.StopCMV.org