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.
Make no mistake. When my daughter Carly is in the room, Love comes to life there. You, too, are raising children who are bringing love to life in their world. You, yourself, are doing it too.
When your son or daughter with special needs is actively engaged in the life of your community or church, people get a chance to see strength in what the world calls weak. (1 Corinthians 1:26-29)
When your family’s most recent health crisis demands a broader support system, others get to be “Jesus with skin on” for you. And they get to feel what it’s like to have the Holy Spirit flow through them for the sake of others. (Matthew 25:35-45)
When your family sacrificially and obediently cares for each other, you put the Gospel on display. (Galatians 6:2, John 13:34-35, Ephesians 4:32, Hebrews 10:24).
Today I am praying with far less concern about the specifics of Carly’s future. I’m praying more about the bigger picture. I’m trusting God for the details of her future career and relationships, while asking Him to show me places where she can love and be loved. I am not unconcerned about her “professional development,” but focused more on a season of exploring the ways and places where she experiences fullness of life and where she puts the love of God on display through her present and natural interests and abilities.
I’m enjoying a sense of freedom as her caregiver in thinking and praying in this new way. And I think Carly is enjoying the freedom too. She is exploring her world with her eyes and heart wide open to the possibilities and the Holy Spirit’s leading. We’re released from the agendas of IEP goals and obligatory accommodations.
There are a lot of good things we can raise our kids to be: great competitors. Soccer players. Football quarterbacks. Lacrosse goalies. Great artists. Songwriters, woodworkers and seamstresses. Great professionals like accountants, doctors, attorneys, chefs and caretakers. Visionaries, servant-hearted leaders and more. But when are we old, there will always be one thing we need more than any of those things:
We will need people who will bring love to life around us.
Lord, show me how to nurture the fruit of Your Spirit in each of my children and guide them into a life of opportunities where, most of all, they can be givers and receivers of Your light, truth and love.
Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.
