Significant
Tanya Savko | Saturday, December 19, 2009 at 3:14PM “sig·nif·i·cant, adj. : of a noticeably or measurably large amount”
– Merriam-Webster’s Dictionary
My son, age 15, is in a major transitional year, having begun high school three months ago. He has a new case manager and new teachers who are all still getting to know him, his strengths, and his needs. He has a full load of classes and a couple of self-chosen extra-curricular activities, including being on the school’s wrestling team, which he dreamed of doing for many years. I am, of course, very proud that he achieved that, and of everything he’s accomplished. He has come so far from his non-verbal, sensory-agony days.
And fortunately, I like his new case manager. She quickly assessed my son’s needs and has worked hard to meet them. I am very appreciative of her work and her attention to my son. She recently emailed me to go over a few issues, including how to help him participate more during wrestling practice. Among other things, she wrote, “[The coach] does not have a lot of experience with students with significant disabilities.”
And it hit me hard. That phrase – “significant disabilities” – is heavy. It was, of course, not meant in a negative way. But it smacks a parent in the face. It’s a harsh reality check, even twelve years post-diagnosis. That phrase takes my recent hopes for a possible semi-independent adulthood for my son and dashes them to pieces. It takes me back to square one, when he was three years old and we received a diagnosis of classic autism, and again at age five, with a different doctor and two years of intensive therapy under our belts - same diagnosis. My head reeled again as it did so long ago. Significant disabilities, even at age 15, even after all the work he’s done, all the years of continuous therapy, all the parental heartache. “Significant” must be somewhere in between “moderate” and “severe.” And “significant disabilities” do not induce much hope.
Days pass. I have been walking around in a melancholy haze caused by two seemingly innocuous words. They are truthful, after all. I realize that his case manager sees a 15-year-old who needs constant one-on-one assistance in all of his classes, two periods a day in the resource room for help with in-class work and assignments, daily pull-outs from his mainstream classes, ongoing social skills and speech therapy, daily medication for his behavior, curriculum modification, and various other accommodations. I can’t deny that all of that does, indeed, point to “significant disabilities,” just as how his needs when he was first diagnosed pointed to the same.
I know that my son’s case manager meant no harm in what she wrote; she merely stated a fact, and I certainly don’t hold it against her. But she doesn’t know his history. What she doesn’t see is a 15-year-old who, despite great delays and difficulty in learning to talk and filter severe sensory issues, despite enduring years of bullying, among countless other challenges, has always gone to great lengths to learn to work with his autism and to function as well as he does. He always tries. He wants to live his best life as much as I want him to. I find that significant too.
“sig·nif·i·cant, adj. : having meaning, important”
– Merriam-Webster’s Dictionary
Tanya writes TeenAutism.
Reader Comments (17)
Tanya, on reading that line "significant disabilities" I was stunned.
Reflecting on the content, does this not depending on the case workers scale. It can also mean "important in effect or meaning" also nothing to do with his intelligence. Nevertheless, you cannot ignore that Nigel is making amazing steps in the right direction, just take advantage of all this extra help you and he can, because believe me if you knew what help my son is getting in comparison you'd realise how lucky you are in this moment in time.
Quite often these 'professional comments' are really not for our eyes. My friends were told their daughter was backward and would not amount to much, just too slow in learning her teacher quoted, funny, she graduated two years ago from University with a B.A. Thankfully her mother kept positive and ploughing forward and up.
Words can hit us in ways their speakers never intended...
I wonder if you could have subsituted the word "noticeable" in the original statement and kept the meaning similar to what the case manager had in mind, at least in terms of the hapless coach!
Significance is what we make of it.
Thanks for this reflection on your magnificent son and the significance of his ongoing journey.
It's such a delicate edge we balance on with our children, isn't it? The unintended sting of one person's words can be enough to topple us from our perch. They can, equally, give us the lift we need to regain perspective. I wonder, if you were to share Nigel's history with the case manager, would she still see "significant disability" or would it be tempered through the lense of parental love and pride? Regardless, Nigel is still Nigel and he's remarkable. And THAT is significant, too. :-)
What is "insignificant"? Nothing. Beautiful post.
To me it looks like Nigel has made SIGNIFICANT progress due to your hard work with him. Nigel has worked hard for his goals too. And that is SIGNIFICANT! You have seen Nigel progress and you know how far he has come. Try not to take to heart comments that teachers make that dont know all Nigels history. You have seen him come a long way so you know that he will keep progressing. Nigel will go far.
The words cut like a knife, but they're seldom intended to. The coach has no training in working with kids with special needs, period. To him - and to the case manager if she doesn't have a child with special needs - those words are complete innocuous. Nigel, however, continues to be wonderful, significant, Nigel. And he learned it from you, mom!
Ouch, Tanya. I have moments like that burned into my psyche, and though they hurt, I find that I eventually am grateful for the reality checks they provide me. Denial is such a comfortable refuge, sometimes, but it's never a good place for me.
This post really, really spoke to me. I sometimes wonder if I live in a constant state of denial, because I concentrate so hard on how much progress my autistic son has made, how great he's doing in school, how wonderful and caring his teachers and therapists are. His psychiatrist (who is great and we've chosen him because we like him very much) once made the offhand comment, "Well, you know, he'll never be like other kids, but blah, blah, blah," and it had me in a similar state of melancholy for a while. Cognizant of the fact that what I see is different from what others see.
Words, they can pack a punch. Beautiful post, and I've loved reading about your son,
oh, ditto leightongirl ... yes
I find it very significant. As generous as you're being about the comment, I still think the person could use some heightened awareness.
Ow.
It's easier to focus on the steps forward than to face the mountain ahead. Keep your eyes on the trail. It may take some of us longer to get there, but you and Nigel are well on your way.
Wow! I think I'd feel the same way. You're right, he's made significant progress! And I understand your continued concern. But you have so much to be proud of. Go Nigel!
I understand the the power of the word; the smack in the face, the kick to the gut.
But. Significant is in the eye of the beholder. I never think of Nigel as having significant disabilities. Never. I think of him as having significant -- endless -- possibilities.
Kids with physical disabilities are more familiar. Their disabilities and supports are physical, and often, standardized; ramp, wheelchair, etc. What our kids require is something completely different and always individualized. For us, it is second nature, but for many others, it is significant.
Give this one some time. I think the impact will ameliorate.
Everyone, thank you for your understanding and support.
Anonymom - "significant possibilities" - Perfect! I can't thank you enough for that!
i'm with anonymom: significant possibilities. yes!
i think that comment speaks more to her concern and fear than it has to do with nigel. she's afraid. and so she frames it in terms of HIS disabilities rather than look at what her view of him brings up in her.
And that is the difference between the well meaning case worker and you. She is trained to see his so called "shortcomings."
You see Nigel for ALL he is.
Poor woman. She has a significant visual disablity.
Oh how I can relate to this wonderfully written post! Whenever I read about Nigel I am amazed and filled with hope. He is significant to me.
Love "he wants to live his best life" We want that for our children and it is so significant when they want it for themselves as well.