Parenting A Disabled Child (Part 2 of 3): Working Through The Challenges of Your Child’s Special Needs
Because we lived overseas, our daughter wasn’t diagnosed with cerebral palsy until she was 14 months old. Once she was diagnosed and the shock wore off (we had several weeks to process the diagnosis), we started a regimen of aggressive therapy. Not knowing the severity of her limitations, there were distant plans of returning to the jungle in 6 months to a year.
As time played itself out, there was no returning to the jungle. Our beautiful, innocent daughter was hampered by this monster called cerebral palsy.
While most of those affected by cerebral palsy have a speech impairment, Kelsie was talking in full, clear sentences by the age of 2. She took her first steps in a walker at the age of 4. We slowly grew in our understanding of what it meant to accommodate her needs.
We raised her in the same manner as my son. There were no excuses for her behavior. If she was selfish or disrespectful, she was punished. To treat a child as “less than” is both demeaning and limiting. We had high standards for both of our children. Though Kelsie’s disability slowed her down in a number of areas, that didn’t mean that wasn’t held accountable for doing her best.
One struggle we have noticed that parents of cognitively disabled kids experience is trying to decipher where the line is drawn between rebellious behavior and behavior effected or enhanced by the disability? This can be a difficult line to draw, but it wasn’t for us. Kelsie was not cognitively impaired. In fact, she was quite bright.
When she was 6, she got her first wheelchair. People were then less inclined to invite us over for a meal.
In fourth grade, the girls at school gathered in groups and cliques. Kelsie’s limited mobility kept her from connecting with others, and few reached out to her. This was certainly a tough time. Fortunately, we were well connected with our church, and Kelsie enjoyed the events and people there. Our church was an incredible blessing in so many ways.
Connecting with others is difficult for someone in a wheelchair. They can’t easily navigate across a room to say Hi. A high percentage of the time, the situation mandates that people come over to say Hi and engage her in conversation. That was difficult for Kelsie growing up, and frankly its still quite difficult. Limited mobility limits relationship, and Kelsie is a relational young lady. As parents, we do our best to assist her in attending gatherings, and we greatly appreciate those who recognize this difficulty in mobility and make the effort to reach out to her.
Kelsie’s diagnosis changed much more than we initially imagined for our lives. My dreams and role as a bush pilot in Papua were supplanted by a desk job in the mission headquarters in Philadelphia. This was not a place I ever envisioned working. Dreams of raising our kids in another culture where they would experience so much from others were gone. Even the idea of going camping isn’t too feasible with a wheelchair. And we ached for the many things our daughter would miss out on due to her limitations. Disability stinks.
In these situations, what did we do? We got help.
We got Kelsie the therapy she needed to grow, and we reached out to several disability groups that ministered to the whole family. We knew we couldn’t do it alone.
Kelsie was able to connect with other disabled kids at a camp, and she reached out and ministered to a number of them. At another camp, groups ministered to our son (often referred to as a “glass child” since people looked past him and fawned over his disabled sister in a wheelchair). The greatest blessing was attending a camp sponsored by Joni and Friends (begun by quadriplegic Joni Eareckson Tada) which are all over the US every summer. In a broken world, we finally felt normal. (Currently, the Joni and Friends retreat in Murrieta is looking for help for a week in July. Click here for more info)