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Parents of children with special needs have many fears, from concerns that their child’s prognosis isn’t good to worries about being able to fit in all required doctor and therapy visits. But there is one fear that isn’t like the rest — one fear that isn’t easily addressed with scientific knowledge or prescription medication. That fear is when to tell a child he has special needs.Whether or not to tell a child about his medical needs and history is not the issue. Rather, it’s a question of the perfect time to do this, and there are several factors contributing to parents’ anxiety about this necessary evil.
At what age might a child truly understand the idea of having a disability?
Shortly after we received our son’s diagnosis of hemiparesis and cerebral palsy following his stroke in utero, I began to worry about when we should plan to tell our son about his disabilities. My husband recalls always knowing he was adopted and being grateful that his parents never hid that from him, which made me feel as though telling our son early was best. The more I thought about it, though, the more I wondered whether he’d even understand what it was we were explaining to him. Consequently, I was left contemplating when that magic age might be.
As Ewing gets older, he is becoming more aware of the way his disability affects him. He’s entering an Angry and Defiant stage now, cursing his affected arm and leg in his labored speech when they won’t do what he wants them to do and openly refusing to abide by our suggestions that he use his right hand (to strengthen it) and keep his heel on the ground when he walks or stands (to keep it from tightening up and resulting in further limping or walking difficulties). We’re entering that life period where his limitations are becoming noticeable to him, and I’m just not sure when or how or even if sitting him down and discussing it should happen.
Will knowing he has a disability instill a sense of inferiority in a child?
The beautiful thing about children is they are so accepting of others and their differences when they are quite young. Unfortunately, as they age, differences become apparent, and not all children are equipped for being something other than normal. I worry that telling our son about his motor weakness and potential learning disabilities might make him overly self-conscious and self-debilitating. Conversely, I worry that not telling him might make him ill-prepared for answering his peers’ questions about why he is different.
Having already endured a year of preschool where it was painfully obvious to us that Ewing was behind his peers (both as a result of his younger age — he started just shy of his third birthday — and his disability), it’s only a matter of time before his classmates notice as well, especially given he is beginning junior kindergarten this year. I recently learned of a teenager in the high school where I work whose parents had not told him he has autism, and I was appalled at how they could keep from him knowledge that could both explain why he was different from his peers and prove somewhat comforting that it wasn’t because he was just “weird.” I don’t want to be that parent when it comes to my son, but I also don’t want to give him another reason to feel down about himself in the already challenging stage that is growing up.
Does knowing he has a disability give a child a safety net of excuses?
Not surprisingly, performing every day tasks like coloring and running and even communicating his needs and ideas is difficult for our son because the muscles on his right side don’t work as well as those on his left. While I thought having an explanation for this discrepancy might be helpful to our son as he battled the frustrations that come with the extra effort it takes to do simple things, I was also concerned that this explanation might turn into a safety net of excuses for him. Instead of pushing through his discomforts and failures with determination, I worry he’ll just chalk his difficulties up to having a disability and adopt an attitude of “I can’t,” two little words that are becoming more frequent aspects of his vocabulary as of late.
On the one hand, I see how being knowledgeable about one’s disability is an asset to the high school students in my classroom, for it allows them to be sufficient advocates for themselves and their needs. On the other hand, however, I’ve seen the reverse of this — students who use their disabilities as reasons not to have to do anything or, worse, students who believe their disabilities make them incapable, so why even try? There’s no way to predict how Ewing might personally internalize knowing about his disability, and a large part of how he reacts to it will depend on our parenting and expectations of him. Still, while I want to empower him by educating him about the nuances of his struggles, I also want to avoid providing him with a lifelong crutch upon which to hang his ever-increasing “I can’ts.”
I’d like to say I’ve discovered that perfect age of revelation, but I haven’t. I’m still struggling with when the right time to tell our son about his special needs might be. In the end, I suppose it depends largely on a child’s personality and ability to manage stress. So until the right moment presents itself, I will continue to watch my son grow and blossom. In the end, I suspect he’ll be the one to let me know when he’s ready. I just wish that time came with some sort of fair warning, you know?[/nextpage]