Estelle says: I have been caring for our special needs son since his birth three years ago. He is the fourth child in the family. I had quit work after our second child was born. I handle the extra work needed to provide for this child. I have the older children participate in their brother’s care, believing they will learn compassion and care through their efforts.
I now feel an emotional distance emerging between my husband and me since this son’s birth. While Bart is very helpful with our three older children, he does not seem to want to enter into this son’s care. In fact, I sometimes observe Bart ignoring our son and increasingly ignoring me. The brightness of our marriage has seemed to dim with the additional stress of caring for this child. I do not mind the work, but I feel emotionally drained without the participation and support from Bart that I need.
Bart says: I truly love our newest son, but inside, I am upset that he is not “right.” I just cannot get beyond the fact that this son will never run or play sports like his older brother. I watch my wife, daughters and other son take care of our 3 year old, but I cannot participate in his care because it hurts too much. I am not sure why I withdraw from Estelle, maybe because I feel guilty. We used to have such a fun family and now it seems like a dark cloud has settled over our family life. Facing the loss of a “normal” son sometimes seems too much to bear.
What do they do?
Most hospitals offer support groups for parents of “special” children. Support groups are also offered by different agencies to address specific special needs. Many of these same groups offer help to parents like Bart, who is having difficulty accepting his son’s “imperfection.” Often, special needs children will bring a tremendous amount of joy to a family, in addition to the extra work. These children are no “mistake.”
Many times while caring for such children, the adult is able to expand on his or her ability to listen, discern, and provide what so-called “normal” children do not demand. One father, whose son had drowned in their pool and was left with multiple problems, related to us that his son made him reach deep down into himself to find out how to communicate with a child who lost mobility, sight, understanding and only had hearing left.
Bart needs to confront the fact that his son is special and will require a special touch by all members of their family. Once Bart accepts the imperfection of his son, and asks for God’s help in this care, he will be able to move forward.
“Whoever receives one child such as this in my name, receives me, and whoever receives me, receives not me but the one who sent me” (Mark 9:37).
The road will be long, with plenty of bumps, but with each peculiarity of each child, parents grow and expand their ability to accept and to help that child succeed at whatever level God has intended for his creation.
Estelle and Bart must talk to each other and to talk to God concerning how they feel about this special child. Whether through a counselor, a friend or perhaps a priest with whom they can honestly share their feelings, it is necessary that Estelle and Bart work through his fear over the challenges presented by this special child.
“You, Lord, give light to my lamp; my God brightens the darkness about me” (Psalm 18:29).