Navigating the New Landscape of Parenting a Child With Disabilities

I am a caregiver. I didn’t plan it and in fact I had no idea that I would become a caregiver — other than the usual care a mother gives her child. My care goes to a little boy named Brett.

Many people believe, as I do, that every living being is in the world for a reason. I believe Brett is here to remind us all that we are all different, and those differences, when truly honored and realized, bring something beautiful and strong, powerful and generous to those around them and in doing that, make the world a better place.

Brett’s inner world

The number one thing I want to tell the world about Brett is that he is happy. He loves life. He’s a social being and loves people. He is able to participate in family, in community and in life, even if he has no words yet.

When people see Brett, they see a young boy, tall for his age, but thin, who sometimes still rides in a stroller. They notice he is unable to sit up on his own and has extremely delayed development with no verbal ability. But we’re working on that.

Some people might look at him with pity — in fact, unless I’m making it up, I often see pity in many people’s eyes. But Brett himself would not be interested in their pity. Brett seems to love his life. He has a mother that loves him intensely and unconditionally. His father makes sure he has everything he needs. He is surrounded by love. Everywhere he goes, Brett attracts people to him with his golden curls, big blue eyes, striking good looks and contagious joy.

I believe his purpose in this world is to be happy. To love others and to make others aware that his differences are just that — differences. They do not make him somehow ineligible for interaction, ineligible for love, ineligible for inclusion. But providing extraordinary care for him without becoming exhausted, burned out or run down, or, as happens for some, resentful, depressed, hopeless or overwhelmed with grief, turns out to require extraordinary attention to my inner world.

Brett is a child like any other child

I’m reminded of the piercing lyrics of a song by Cindy Morgan, “Take My Life:”

This race is not just for the runners
Some of us walk while others barely crawl
We make our way through spring and winter
Leaning on the strength that strengthens all

This song had always moved me in the past, but hearing it again after Brett was born, those words took on a whole new meaning. When I hear Cindy sing, “while others barely crawl,” I sometimes think about Brett’s slow motor progress and wonder if he will ever walk or even crawl. Then I remember that this song’s message is about how we all have different strengths, struggles, levels of awareness and abilities, yet in the end, we are all the same.

Easing into this new world

Looking back, I think those early months were like a buffer zone for me and for Scott, as we adjusted to a reality that was wildly different from the expectations we had when we worked so hard to conceive him. Wildly different, also, in that not only did Brett look “normal,” he is exceptionally — extraordinarily — beautiful. His eyes are full of soulfulness and wisdom, and the way his face lights up when he interacts with those around him is remarkable — and indicates much more presence than some might assume given his intellectual disability.

Something must have told me that I was slowly beginning to allow a radically different understanding of Brett’s situation to come into my awareness because, at 22 months, I at last sought out a second opinion. Because we had been coming at this largely from a neurological perspective, I began with a series of visits to another neurologist.

A mom’s inner world

“Please don’t praise me for loving my ‘special needs’ child.” That was the title of a blog post I came across and reposted because it resonated with me. The reason it moved me is the hidden message that praise implies that Brett is not as loveable as, or is somehow less than, a typical child. Or that praise implies that providing extraordinary care requires an extraordinary person — and that I am “rising above” some normal level of loving my child with disabilities so naturally.

Perhaps the real — and more revealing — message behind that praise is that others fear that if they had a child with disabilities, they aren’t sure they are that extraordinary kind of person who could love him or her as much as I love Brett. What I want my story to convey is that I am not extraordinary. Far from it. I am ordinary. Brett is the one who is extraordinary — and loving him has brought me to this new level of contribution.

People tell me that Brett is so lucky to have me. But Brett has taught me that I am the lucky one. I’ve learned I have an intense ability to love him unconditionally. I didn’t know I had that in me! But Brett has brought that love out of me, and I am grateful.

Brett’s life in the outer world

I began to notice a point at which strangers started observing Brett’s differences. As an infant, it wasn’t obvious to others that he had disabilities. It’s common to see a baby in a stroller or an infant being carried by its mother. But as he got a little older and a little bigger — say 2-and-a-half or 3 years and 24 to 30 pounds — people began to notice that the way he appeared was a bit different. When strangers asked how old Brett was, I found myself feeling obligated to disclose that he has disabilities. Mostly it was to defend my mothering skills before they judged me as to why I was not letting him walk and run around as a typical toddler would. But for those sincerely curious mothers (men rarely ask) who wanted to know more, I’m an open book.

Children younger than Brett, seeing him in a stroller with no shoes on, strapped in, would immediately call out, “Baby! Look at the baby!” even though Brett was older than they were. Their parents would often nervously try to distract their children as though they were embarrassed for what their children noticed.

While waiting for my takeout order at the bar in the sushi restaurant, a woman asked how old Brett was. Brett was in his stroller as it’s much easier to maneuver in quick errands such as grabbing food to go. At the time, he was turning 4 in a couple of months, and immediately I clarified my response with an explanation of his disabilities. This lovely woman was a local teacher’s aide and said immediately she realized that he had disabilities. That was a turning point in my mind. I’m always scanning stranger’s eyes to see if they recognize his differences to determine how much of an explanation or clarification I needed to launch into. But now, she confirmed, it’s obvious to many strangers from the moment they see Brett.

Adjusting to the new normal

It’s not that I tried to hide his disabilities for as long as possible. I am immensely proud of Brett for who he is, how hard he works at achieving the simple things that most families take for granted. I remember, when he was still an infant, being concerned because he did not seem to smile. “Was it a sign of something wrong with his social skills?” I thought. But like I mentioned earlier, Brett is truly one of the happiest children I have ever seen. His gift is bringing joy to all those around him.

I was the one who needed time to process, adjust, and find my role and rhythm. Brett has always been comfortable with who he is and it is my deepest hope that he will always be happy and content.

Brett is now 6 years old, so I’ve had some time to adjust to this new and important role of being not just the mom of a child with disabilities, but Brett’s mom. I’m still trying to navigate this new landscape. The one thing I know for certain is that Brett was meant to be my child and I am honored he choose me to be his mom.