The first time someone referred to my son as a special needs child, I felt indignant. Sure my son had medical issues, but I wasn’t ready for the term “special needs” to apply to him. I loved my son, but I wasn’t sure I was cut out to be the parent of a child with a disability. Special needs parenting was unfamiliar and unpredictable and, therefore, unsafe.
I wrestled a lot those first couple months with being a family identified with critical illness and special needs. Part of my struggle was due to my distorted view of special needs. Before the special needs world became a personal matter, I viewed those in the special needs community as other, different, and a group I certainly didn’t desire to seek out. I didn’t know how to relate well to people affected by a special need or a chronic medical condition, therefore I was sometimes uncomfortable around people with special needs or major illnesses. In a world that values beauty, efficiency, success, and independence, special needs often offers the opposite. I valued what the world valued, but being a parent of a special needs child reminded me of the real reason behind a person’s worth.
Special needs parenting doesn’t offer physical beauty or glamor. The world’s lust for physical beauty is met by the sometimes glaring physical anomalies of children with special needs. Maybe physical anomalies so severe others are uncomfortable in their presence. In an age when glamorous selfies reign supreme, special needs offers a completely different image of “beauty.”
Our society thrives on efficiency. Busy, on-the-go families are constantly looking for ways to be more productive. Parents are constantly comparing ages when their children accomplished certain milestones. We live in a microwave society – we get what we want, when we want it. The world’s god of efficiency is contrasted with frequent periods of regression and protracted achievements, as it often takes years for a special needs children to accomplish what their peers can in a week. And even when accomplishments are made, for every two steps forward there seems to be another step backwards. Special needs children have a completely different timeline than the efficiency with which other children reach milestones.
Success and achievements are paramount in our society. We have trophies, medals, and plaques to proclaim our great accomplishments. There are plenty of yearly lists ranking the richest and most powerful people in the world. Seemingly small yet hard-won victories in the homes of special needs families are overshadowed by the flashiness of worldly success. Instead of a college degree, winning a championship game, or being valedictorian, success for those with special needs may be redefined as being able to overcome tremendous challenges just to do everyday things others take for granted: eating, breathing, talking, and walking.
Independence and individuality are placed on cultural pedestals, but special needs by its very nature fosters dependence and community. Our main goal as parents is for our children to grow up and operate independent of us, but perhaps society has pushed this idea too far. We have forgotten how to depend on and relate to others. The incredible affluence of our culture has allowed us to pursue self-determination, self-sufficiency, and self-competence without maintaining a balance of interdepence. It is healthy to need and serve other people. In the world of special needs, there is no escaping a need for others.
The world wants to value people based off of whats, hows, and whens, but the worth of a person is not found in these. The worth of a person is not decided by what they look like. The worth of a person is not found in when they arrive at a certain goal or state. The worth of a person is not determined by what they can or cannot do. And the worth of person is not defined by how well they can function independently.
It would have been hard to imagine in that first moment when I met my son that I could love him any more than I did then. But with every passing day, I find a new depth of love for him. Every day with him, I buy less and less into the world’s idea of defining and valuing people based off of what they can and cannot do, what they look like, and how much they can achieve or how independently they may function. I love my son for who he is right now at this moment – a special and unique person unlike any other before or yet to come.
There is a difference between pushing people to be what they cannot be and accepting people for who they are in the moment but always providing opportunities for them to grow. When I started accepting my son completely for who he is and stopped putting my expectations of reaching certain ideals on him, I started to see him flourish.
Thank you for this post. I’m a new-ish mother (I have a little boy who is 15 months old and is currently healthy) and I’m in awe of the grace that you have and the important words you write in this post. Your perspective is enlightening and I hope to look at my little boy in the same light as well as other special needs children that are around us. Keep up the great work advocating to look at all of our children in a fresh light!
Thanks for your kind words Erica!
Such important words for any parent. Thanks for sharing your heart.
Amber, this is a beautiful article! For us, after beginning parenting with two “normal” and “high-achieving” children, our lives took a bumpy road into the “special needs” realm. However, it is not one I would trade. We have been able to experience the pure joy of seeing Kirk tackle and master the basic skills that we didn’t even recognize with the girls. God is good to us in so many ways and often gives us blessings in disguise that help us to continue to put our complete trust in His sovereign plan and the right perspective for joyful living each day!
JoAnn,
Thanks for sharing some of your experience. I love how our unique journey of life and specifically special needs parenting, can open our eyes and change our perspective on many things.