One of my all-time favorite movies is The Lord of the Rings, which tells the tale of a simple Hobbit, Frodo Baggins, who is burdened with the unenviable task of destroying the One Ring, a force of great destructive power in Middle Earth. Frodo is accompanied on his journey by eight companions who become the Fellowship of the Ring, to help him accomplish his task. Together, the Fellowship endure numerous hardships, relying on each other for support and encouragement to ultimately triumph in their pursuit.
It was this image of fellowship that struck me recently while attending a support group for fathers of special needs children. Here on
Staten Island, this group meets once a month, sponsored by a local parent advocacy organization, Parent-to-Parent. I’ve attended meetings of this father’s group sporadically over the years, but will usually attend when my wife Sandra reminds me. The meeting is usually held at a local diner – the organizers believing, rightly, that fathers will turn out in greater numbers if there’s food involved. For this most recent meeting, we had a fairly large turn-out with about 15 fathers attending. Some were familiar faces who I’d met before, others were newcomers, yet all shared the common bond of having children with special needs.
After ordering our meals – we had our priorities, after all – we went around the tables (considerately arranged around a circle, King Arthur-style) introducing ourselves and telling a bit about our children: their ages, disabilities, schooling, and any particular issues we were facing. The moderator has an adult child in his late 20s with cerebral palsy, who had lately been struggling with numerous infections. Given his condition, he was particularly susceptible to them and had been hospitalized quite frequently. The assembled Dads were all quite concerned, asking questions about his course of treatment, medications, and overall welfare.
As each father shared his part, whether a struggle with behavioral issues or difficulties finding appropriate therapists, our assembled fellowship responded with keen interest. You see, we’d all been there before – with our own battles with well-meaning but often inept school administrators, or with children whose behavioral issues were driving us to the brink of despair. Sometimes, helpful suggestions were offered. Other times, we provided simple affirmation that someone in our group had been in precisely the same situation. Whether the feedback provided solutions was secondary – the very fact that a gathering of men had the opportunity to unburden themselves among fellows who innately understood their difficulties, that was what made our group special.
For most of us, there was a certain catharsis in being able to just speak aloud the difficulties we faced. Maybe someone knew something about the drug their child was just prescribed? Perhaps another knew of a speech therapist that might have some hours available for a new child? Was anyone else struggling in their marriage? The last concern was a too frequent refrain. Raising a special needs child can be one of the most taxing challenges to a marriage. It is a well-known statistic that parents of special needs kids are more prone to divorce. Some of us were already there, or headed in that direction. Others were still married, but in different phases of acceptance about our children’s disabilities. A few of us, myself included, thankfully, had spouses who saw eye-to-eye with us on most matters concerning our kids.
One particular father who shared his parenting struggles sounded so much like my own. His daughter was a bit younger than mine, but suffered a form of similarly severe developmental disability. Her behavior was out of control, with frequent non-compliant outbursts where she could not be physically moved. By what he’d described, his wife was having difficulty coming to terms with her daughter’s condition, though he fully realized how severe it was and how progressively hard raising her would be. He mentioned remembering a father who had explored residential schooling as an option, and was seriously considering it for his child.
As it turns out, that father was me. I responded to his comment by affirming that I was, in fact, the dad he was thinking of. I went on to describe what a difference enrolling
in the Center for Discovery had made for her. The moderator of our group, a social worker himself, attested to the benefits of a complete therapeutic environment which the Center provides. I felt for him, thinking “there but for the grace of God go I”. My daughter sounded just like his – tempermental outbursts, self-injurous, unable to make academic progress due to behavioral issues. I hoped to offer him some encouragement, as we all did, that there was indeed reason for optimism. Eden
After the meeting, I stuck around a bit to speak with him, and offered to talk with him more about the Center and our decision to have
attend a residential school. I even suggested his wife might talk to mine, since she’s a licensed social worker who does service coordination for special needs kids. Most of all, I just wanted him to know he wasn’t alone. I think that was something we all took away from our meeting, the sense that, despite our individual difficulties, we could spend a few hours in good fellowship knowing we were all doing the best for our kids. We were the lucky ones, who had the sense enough to seek out companions for our journey. I hope we continue to find more fellowship along the way. Eden