Secrets

18 Jun

from HerWord.com, June 17, 2008

Secrets and HushesI ran into an old friend at a local grocery a few months back. We knew each other when our kids were very small. Her child was in a mainstreamed class in Alphonse’s school. We had the same hours in school then, even as our children were in vastly different circumstances. While Alphonse was a nonverbal toddler who required one-on-one teaching, her son, Q, was a bright, active, young boy with emerging, but very comprehensible, language.

Every morning, as the moms and nannies sat down for the long wait, she and I would seek our favorite corner of the lounge. Armed with our cross-stitching sets, books, and other paraphernalia to while away the long hours of waiting, we would often break the monotony of stitching with idle talk. In one of those long hours, she told me that their families — his and hers — do not know that Q was diagnosed with autism.

I’ve always been very upfront about Alphonse’s condition. The day he was diagnosed, I called everyone in our families and told them about it. My family (my parents and siblings) huddled around us as we all cried that very first day. My husband and I stayed on the phone for hours talking to my in-laws, trying our best to hold in the sobs that tore at our chests all day. And so, disclosure has never been a problem. There’ll be no cloak-and-dagger stuff with autism for us; truth to tell, my big mouth probably wouldn’t hold it in so well.

It was her husband’s idea, she said, to keep it in and hope that in a few years, no one will ever know he was “once autistic.” With his language blossoming rapidly in the year of speech therapy and his different preoccupations less persistent and less rigid, he was improving by leaps and bounds daily. But the secret weighed heavily with her, as relatives would often ask her about her son. Stumped for the truth, she would make up all kinds of excuses for Q’s current activities. She would create alibis for their time with the therapists, reinvent her descriptions of activities to include “normal”-sounding days, and keep her son out of their relatives’ scrutiny to hide the truth.

I did not wish to come between husband and wife, but I tried to convince her that hiding things will not make it any easier for their family. And despite many discussions of this theme till the day school ended, I was never able to change her mind. Before the year came to a close, she announced that Q had been accepted to an exclusive private school, where no one ever knew and would ever know that he is, or was, autistic. Then we said goodbye and I forgot all about her until the day she recognized me in the checkout lane of the grocery store.

I was very happy to run into her. We exchanged pleasantries and made small talk about our unfinished cross-stitched projects (she still has one from the late nineties, I have two). When I asked her about Q, however, a pained expression fleeted ever so quickly on her face. Then she laughed aloud, as if to cover up her embarrassment, and changed the topic. Later I saw her glance a few times over her shoulder to look in on a man and a much older couple. I pretended not to notice and we proceeded to talk about banal things while the checkout lane moved slowly. By the time she said goodbye, she whispered in my ear as she gave me a soft buss on the cheek. “They don’t know.”

Q must be 15 or 16 by now, and I wonder, in all those years, what they told him about himself. I really hope that he is as “indistinguishable” from his peers as they prayed he would be. It would be such a torment to wonder who and what and why he is the way he is without ever knowing the truth. To be “different” and not know why. To feel lost and not have any answers.

I used to think that people like my friend were rare in the world community of autism, the exceptions to the rule. I have met many fierce advocates of our children. And yes, we are a vociferous, vocal lot. And so, to run into more like her is deeply disturbing, yet at the same time, also heart-wrenching with grief. This takes our fight back to the days when the hush-hush mentality was the norm, when skeletons were hidden in the closet, and when prejudice ruled the day. Our only hope is that we can make our tooth-and-nail fight for our children’s rights more public and more open as the days pass by.

But just recently, in another part of the world, the same question popped up: to tell or not to tell. In a Dear Abby syndicated column for the Arizona Republic on June 9), a family member posits this very same question.

~0~

Child’s autism kept secret
June 9, 2008 12:00 AM

Dear Abby:

I have a beautiful 3-year-old niece I’ll call “Serena.” She is my brother “Simon’s” daughter. Serena is mildly autistic but has made amazing progress. We’re optimistic that she’ll be indistinguishable in a few years.

The problem is, Simon doesn’t want our parents to know about Serena’s condition. Simon thinks they would be judgmental toward him and would gossip about matters he would prefer be kept private. He might be right. But because he is keeping them in the dark, his relationship with them has deteriorated.

Simon has threatened that if I tell our parents about Serena’s autism, he’ll never speak to me again. Should I stay out of it or intervene? Is this kind of situation typical with families who have children with special needs?

Uncle With a Secret

Dear Uncle:

When a family member is diagnosed with a mental-health disorder, some families “circle the wagons” to hide it. While it’s regrettable, this is the path your brother has chosen. Not knowing your parents’ level of sophistication, I’m guessing he may be right about them and that he prefers to allow them into his daughter’s life only after her problem has become “indistinguishable in a few years.”

If you value your relationship with Simon, do not reveal his secret.

~0~

I have a mind to tell Dear Abby a thing or two, because in this day and age, I feel that “hiding in the shadows” is no longer an option. And while I may have some misgivings about labeling autism as purely a mental health disorder (which is deceptive and misleading, to say the least, although this term is still somewhat acceptable in light of its use in medical circles), I will have to pass on this issue for another time.

There is one central concern here, and this is the father’s acceptance of his child’s condition. That he feels he must hide is particularly revealing of his attitude towards his own child. That he takes on and uses his own biased judgment to predict others’ behavior towards this, that he decides for others what they feel or think or do without benefit of the doubt, is deplorable.

If I were Uncle With A Secret, I will encourage the father to come out in the open. Is he ashamed of the diagnosis? If so, then he must know, that autism is nothing shameful or disgraceful. Is it really just a case of wanting to protect his child from public judgment? Then, he must know, too, that in a world such as ours, we will never ever escape this, so why even bother to run from it? Face it squarely; celebrate your children’s strengths and never wallow in their weaknesses. And then, if this were a case of uncaring, unloving, petty, selfish, ignorant relatives, (of which I have had plenty of experience), then sever all ties with them and disavow them, but do not hide your child and his/her autism to please or appease anyone.Hiding in shadows

Autism should never be a secret, and in this case, if she were my niece, I will surely sit down with the grandparents and tell, regardless of the consequences of my relationship with my sibling. With love and support, children grow up believing in themselves. No child will ever thrive in the shadows; every one needs light and love to bloom and grow. And in the event that the grandparents are too ignorant to appreciate the blessing before them, then it is their loss, not mine, not the father’s, and certainly not the child’s.

Autism may have its heartbreaking moments, and this is true for all of us who live with it every single day of our lives. But it is also a landscape of learning, of exploration, and of wonder. It need not be a diagnosis of devastation. What it can be is what you and your family make of it. With love, acceptance, and faith, nothing is impossible.

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10 Responses to “Secrets”

  1. manggy June 18, 2008 at 12:56 pm #

    I agree with you to an extent regarding the attitude we must take when one of our loved ones has autism. It’s only when we face the truth that personal growth, acceptance, and we get to recognize the miracles that manifest themselves daily.

    However, I also agree with Abby (er, of Dear Abby). Relationships are a fragile thing. Because the father lives in (okay, I won’t call it ignorance so as not to be judgmental…) uh, fear and shame, it’s not fair to throw him into the pool and force him to swim. He needs to fully understand the situation and understand his child first (a shame, then, that he does not, or thinks that others cannot). It may not be something that should be a secret, but it is also his life and he is entitled to keep whatever he wants secret. Maybe if he reads something like this, he would reconsider, we can only hope.

    Imagine if one of your friends were closeted except to you, whom he feels he trusts, but since you love him as he is, you decide to “out” him to his whole family without consulting him, confident in the fact that they should and WILL love him and accept him as you do! Ha ha ha. Anyway, pahaba ng pahaba na itong comment ko. Hope all is still sunny on your side of the street despite these rains!

    Thank you for that very insightful comment; I like that it made me think. 🙂 And yes, I agree with you that we need to give each other time to grow and learn to accept. The thing is, I’ve never really understood why people feel ashamed of autism or any disability, of socioeconomic issues (I’ve met people who had their school bus drivers drop them off at someone else’s house just so their classmates would not think low of them for being poor), of gender issues. For me, as long as something remains hidden, it can never be allowed to blossom into its full potential. I would rather that that person learns to celebrate who he/she is, for all his/her marvels and difficulties, than pretend to be someone or something else. Then again, this is just me… ~♥Kittymama

  2. manggy June 18, 2008 at 12:58 pm #

    Typo: “It’s only when we face the truth that personal growth and acceptance can take place, and we get to recognize the miracles that manifest themselves daily.

    Heh heh, sorry 🙂

    I also like that you write in white heat, hehe. 🙂 When we feel so strongly about certain issues, our fingers tend to lag behind our minds. Thank you again for that wonderful comment. I’m really glad we can disagree on some points, and yet learn from each other. God bless! ~♥Kittymama

  3. leira June 18, 2008 at 1:13 pm #

    i was just talking about this situation to Philbert yesterday. His parents and sibblings knows about Joshwa’s autism pero parang ayaw nila ipasabi sa mga kamag anak my MIL (mother in law) is still in Denial.Sabi ko kay Philbert walang nakakahiya sa pagkakaron ni Joshwa sa Autism kasi di natin kasalanan lalong di kasalanan ni Joshwa so why do we have to hide in fear and embarassment. Mas nakakahiya if napabayaan sya..

    Yes, absolutely. Sometimes, our “shame” is so misplaced. 😦 ~♥Kittymama

  4. awalkabout June 18, 2008 at 1:22 pm #

    This made me think a lot. I know my in-laws have granddaughters that live very nearby who do not have “issues,” and they do many things with these children and welcome them into the house. Our children live farther away, but they are limited to one two week visit in the summer. No holiday visits or school vacation, though we’ve offered to transport them. She always sends them things, of course, for Christmas and birthdays. She’s a “good” grandmother.

    But somehow, whether she knew the name of their issue or not, I don’t think is what matters. The behaviors are what they are. She says she can’t handle them. Maybe knowing there is a diagnosis makes her more compassionate during those two weeks. Let’s hope so.

    I know what you mean. Our other relatives (for the sake of peace, I’m not naming them or whose side they are from) chose not to have a relationship with our son out of fear or out of embarrasment. They would send token gifts every now and then but would refuse to have anything to do with him- they can’t handle him too. The diagnosis was really but a name for what Alphonse goes through every single day of his life, and knowing it has not made them more compassionate or more involved. I won’t pretend to know what it feels like to have autism, but at the very least, I am not going to hide it from others lest my son thinks I am ashamed of him. On the contrary, knowing how hard he tries every day makes me prouder. ~♥Kittymama

  5. odette June 20, 2008 at 4:42 am #

    i think for some families who prefer to hide the real condition of a family member with autism, is still on the denial stage where they refuse to believe the truth, where the opinion of others are much more important than their own concern for the well-being of said family. and that would only hurt all of them in the process.
    i have a nephew with autism, Gab. he’s the sweetest little toddler, very good looking, and everybody loves him all the more. he’s our sweet little angel and showered with extra care. if my cousin preferred to keep silent about it, she would have deprived Gab all the loving and acceptance he so needs.
    hooray for parents like you, standing proud and tall, speaking loud and clear – anything for your child.

    Is he the same Gabriel whose picture graced one of your posts? He is beautiful! 🙂
    I had chills when I read about Gab, because through this blog, I find more and more people linked by their love for a family member with autism. Hooray too for aunts like you who love these beautiful children like your own! :-)~♥Kittymama

  6. julie June 20, 2008 at 7:16 am #

    One can’t keep having an autism a secret. In one way or another, people notices the difference, however subtle these may be. Or maybe I am just saying this because I am used to seeing them.

    About keeping secrets but in another way, I keep secrets too. Secrets told to me by my students, their crushes, what happened with their friends and even their thoughts and dreams. They tell me these things but I have to keep these a secret from their moms. Most of the time, I do. Sometimes I don’t, when the things they tell is are disturbing, I have to tell their moms but I do it discreetly lest they lose their trust in me and not confide anymore.

    I hope they don’t get to read this 😀

  7. hyprsts June 20, 2008 at 9:30 am #

    One very insightful and friend told me that our kids were brought on this earth as they are to teach us how to be happy no matter what the conditions are…. People choose to deny themselves even more of the happiness that they can learn from acceptance and unconditional love.

    Why do we keep secrets? We fear the people might love us less if they found out about it…..People who keep secrets deny themselves to be seen as they truly are. Letting others determine if they are “good enough” to be loved and accepted. Sad….

    As for Julie, ithey’re not your secrets anyway. 😀 You’re just in on the circle.

  8. Jennifer June 20, 2008 at 12:56 pm #

    How appropriate that I stumbled upon your blog today (through Fragie What!?) My boys have Fragile X Syndrome which includes autistic characteristics. One of my brothers has a daughter (12 years old) who, because of distance, I see maybe every other year. Each time I see her, it’s so obvious that she has autistic type characteristics, but they have never said a word about it!! Yes, she may be high functioning, but did they think we didn’t notice when she was flapping a little when she got excited and the mom gently put her hands on her arms and said quietly, “Stop,” or her extreme reaction of fear when she saw our mild-mannered little dog, or the fact that she talks in a monotone voice, and that her social interactions are a bit awkward? They homeschool their 4 children; I think it may be a matter of they don’t want to put a label on their child, and probably like the person you described, they hope that she will get to a point where it’s not obvious. It seems crazy. Fragile X is a genetic condition, and it’s possible that she is affected by it, maybe not. It leaves a sour taste in my mouth concerning my relationship with my brother. It wouldn’t hurt the relationships in the family if he were to talk about it with family members.

  9. odette June 24, 2008 at 5:22 am #

    yes, he’s Gabriel, the picture i posted on my blog! 🙂
    he’s a beautiful mixture of different races, some dutch blood, filipino, and chinese. my cousin had a gallstone operation when she was 5 months pregnant, so all the medications could have affected Gab.

  10. caryn July 26, 2008 at 5:42 am #

    hey, i agree completely. i guess there are just some people who don’t see it that way…

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