Finding Balance as a Special Needs Mom

As the mom to three kiddos, ages five and under, it would be easy to see why I am so busy all the time. Three schedules plus my own is a lot to maintain and it’s something I am struggling to find balance in when the youngest of my three has Down syndrome bringing a lot of extra appointments to our daily lives so finding balance as a special needs mom is important.

I am nearly two years into my role as mom to three girls. My journey into Motherhood began nearly six years ago when I welcomed my first daughter into the world. A couple of short years after that, my second daughter was born and another two years after that beautiful moment, my third daughter came into the world.

For me, the transition from one to two went smoothly, but I found that going from two to three  was by far the hardest. It was perhaps due to the fact we spent almost 2 months in the hospital with her as she underwent life saving heart surgeries right from the start. And the fact that bringing her home medically fragile on a feeding tube and extremely susceptible to germs made it challenging to even attempt to get out the door unless completely necessary. I literally made it out of the house only to take her to the many doctor appointments we had those first several months home. Either way, it was a hard transition for me at first and the schedule quickly became completely overwhelming. I had three little ones pulling me in different directions, some needs seemingly more urgent to fill than others.

I will never forget Bernadette’s first in-home therapy. She had just barely been home from another hospital stay when the feeding therapist showed up. It was wonderful having another set of eyes on her to watch our attempts of bottle feeding and to encourage us along the way. I had been anxious to get therapies started and it was finally happening.

A couple of days later, the physical therapist and then the home visitor. Soon enough, it started to feel as if we had a revolving door of people constantly coming in and out. At that point, Bernadette still had quite a few appointments outside of the house and it all became a balancing act, the other two little girls vying for my undivided attention in the midst of the chaos.

I appreciated all the work our therapists were doing with us. Bernadette has made consistent progress forward and I know that each of them is to thank for that. In areas that have been more of a struggle, more time and energy has been devoted to those areas. Other areas where she is making leaps forward in have now been incorporated to everyday play as she interacts more with her sisters.

A few months ago, I realized I couldn’t keep up with the schedule. I started to question the various therapists we had coming into our house and decided it was time to reevaluate where I was at. I wanted to allow time for the older girls to have activities outside of the house or with friends but I had found that in the way I had things scheduled, there was hardly a free morning for anything aside from Bernadette’s therapies.

The first thing I decided to do was to check in with each of my girls to see if there was an activity they were interested in doing. The oldest chose gymnastics and the middle chose ballet. I looked up the classes to see when they were available and then began rearranging Bernadette’s schedule.

What I was noticing in this process is while the therapies are important for her, there also needs to be time and space for the other girls. I talked to our various therapists and figured out a schedule to fit in other activities. One therapy went to twice per month instead of weekly, Occupational Therapy and feeding were combined so she could still have fine motor without having to fit in a whole other hour into the week, which left enough room for physical therapy. It sounds like a lot and in the season we are in with Bernadette, I feel the therapies she is in currently are necessary in her development. Rearranging them to fit in with our schedule and make it work for us has taken such a load off my shoulders.

I find with the simple adjustments, things are more predictable and there is actually time to do other things. I have a couple of mornings free to either stay home or take the girls to a play date or another activity. It’s so important for their own stage in life to have those connections outside of the home, especially during summer when school is out.

I really don’t think there is a right way or wrong way to schedule therapies. I know that each family unit is in their own season of life figuring out what works best for them which I think is where the key is. Finding what works for you and your family while paying close attention to what the individual needs are.

I could see sometime in the future cutting back on feeding therapy but it has been an absolutely essential therapy for Bernadette up through now. With the help of our various feeding therapists, we were able to tube wean from being 100% tube dependent, eat purees and onto solid table foods, learn how to drink from a bottle and now a cutout cup. There are still things we are definitely working on, like drinking from a straw cup or sippy cup, but when you think of where Bernadette was just over a year ago, she’s made some amazing progress. Progress that I wouldn’t have even known where to start to begin with.

I think the key is to be in-tune with yourself, other family members, and really finding that balance. Some weeks still seem down right crazy, especially when there are extra appointments thrown into the mix. The schedule is beginning to become more routine, creating a sense of predictability, with time set aside for other activities.