Every child receiving services in the special education system is required to complete a series of assessments every three years. Many of these happen in the spring. Whatever time of year it happens, it’s a rigorous and often emotional season for many special needs parents and their children. It’s a season when a fairly large group of people is putting our children under a microscope to evaluate what progress has been made, and in what ways our children are not measuring up to their peers.
All team members must agree on the appropriate tools and measures to use in the assessment. Parents worry about whether those tools will give our children a fair shot at demonstrating their present levels of function, or reflect their future potential. Teachers and other providers attempt to confirm the appropriate level of supports and services for our unique children. And, as our sons and daughters gets closer to adulthood, everyone is trying to anticipate how they are going to contribute in a workplace and find personal satisfaction in their roles and relationships.
One question I was asked at least every three years was particularly haunting:
Where do you see your daughter working and serving in the community in 5, 10 or 15 years?
My daughter Carly’s present function reflects a very low level of independent capability. Even at 21 years old, assisted activities remain very difficult for her. Add to that her very independent temperament and sensory defensive behaviors, which make hand-over-hand support difficult on the best of days. Even as she has now graduated out of the public education system, I feel like we are just beginning to understand her passions, talents and future potential. So it overwhelms me trying to make predictions about what will interest her in the future, and how she’ll be equipped to plug into progressively richer experiences of life. Nonetheless, she needs us to catch a vision on her behalf and advocate for her to have opportunities.
I have often asked God to give us vision. I have asked Him to give others vision and creativity too. We need friends, family and a church who know Carly well, to help us have ambitious and reasonable ideas about her potential and opportunities where she can serve in areas of interest and gifting. We do this for all of our children, don’t we? Whether our child has special needs, is neurotypical or what the world would call “gifted,” we try to envision and facilitate what “fullness of life” could be for each of them. We hope and pray that our kids will find people around them, throughout life, who recognize their potential, see opportunities for them and help position them for success.
And while the world evaluates “good parents” and “successful kids” by how well they play hockey, if they are popular at school, how they are esteemed by other adults, whether they are a leader in youth group at church, Jesus measures a person’s value and success very differently.
The parts of the body that seem to be weaker are indispensable. 1 Corinthians 12:22
But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law. Galatians 5:22-23
So, my prayers have changed over the last couple of years. While I still pray for vision to foresee ways of helping Carly grow in her spiritual gifts, talents and passions, I’ve been asking God to show me how to put Carly in situations where His love can come to life toward those around her.
Let us love one another, for love is from God…In this the love of God was made manifest among us… No one has ever seen God; if we love one another, God abides in us and his love is perfected in us. 1 John 4:7-12
Please don’t misunderstand. I do not mean people should simplify anyone with severe intellectual developmental disability as someone whose only contribution is to be inspiring or even loving. That is an unfair, naïve and limited perspective. But most of all, let’s not hesitate to celebrate the fruits of the Holy Spirit that we see alive in each other.
Source: Special Needs Parenting- Key Ministry
