Wednesday, April 17, 2013

Are there things worth keeping from our children?

A dear friend of mine popped up in an instant message on Facebook last week. In the past few years, our lives have walked paths all too similar in so many ways. There aren't many people who know the ugly details about things that have gone down in my life, but she does. I get the sense that sometimes she tells me more than she tells most people too.

We've helped each other through a lot lately. Deaths of both of our fathers, struggles with other family members, coping with too many things life threw at us in too short a period of time. We've helped each other through navigating our kids through whatever is going on with them, whatever they were diagnosed with, with seeking help when we know we need it, with forgiving ourselves for our sensed failures as mothers.

We've reassured one another that we're doing the best we can. That there is nothing wrong with asking for help. That we are doing the right thing for them, even if it's hard for us to confront it. That it's okay to be frustrated.

Then she asked me to write about something.

She asked me if she was doing the right thing by not telling her sons what they are diagnosed with.

She asked me if she was lying to her kids.

She asked me if that was wrong.
One of her children has autism, another has ad/hd.

My immediate gut reaction was that only she, as their mother, could know the answer to her questions. She knows them better than anyone else does. She knows and understands her situation and theirs far more than anyone else could ever imagine to. Anyone sitting on the outside would be unqualified to tell her whether what she is doing is right or not.

I have been open with my children about their conditions. In many ways, it was a choice that wasn't mine to make. They know when they are struggling in school, they know when they are frustrated, they know when they are suddenly seeing more doctors and talking to more grown ups. They are older, more aware. Our pediatrician was very open with my kids as well, wanting to make sure that everyone was on the same page.

I completely understand the reasons my friend has never told her sons. They were both very young when diagnosed, much younger than my children, too young to have really understood it. At this point, it's just part of who they are and there is nothing new about it. She doesn't want them to feel limited by those conditions. She doesn't want them to be judged by other people. She doesn't want them to feel discouraged because of it, or to use it as a crutch or an excuse for not doing their best. She doesn't want them to think they are different, she doesn't want them to feel like they are different, so she just doesn't tell them. And you know what?

They are thriving.

Like I told her, at some point they will find out, even if she isn't the one to ever tell them. At some point, they will realize that the medications aren't vitamins. At some point, they will figure it out when they get older. She knows this, but wants to protect them for as long as she can.

It's hard to find fault with a mother wanting to protect her children.

She wants to protect them because she is an good mom. She isn't like so many parents, living in denial of their children's conditions, pretending things are all fine, refusing to seek help for them. I can't even begin to tell you how many people I see like that. People who want so badly to believe that everything is fine, or that it's just a phase, or that it's just this classroom environment, or that it's just what he ate yesterday, or that she's just tired. Parents who refuse to open their eyes to the fact that something is going on. People who may not want to admit that whatever is going on with their kids might be the same thing that is going on with them.

God knows that I had a hard time seeing that with my own kids. Those apples don't fall far from the trees, and we don't just pass on our positive genes to them. We pass on our struggles too. Seeking help for them often means admitting there is something going on with us as well.

She hasn't avoided that. She hasn't told herself that everything is okay. She knows it's not just a phase. She has always been proactive in seeking treatment for them, in finding the best school settings for them, in seeking therapy, in using medication when necessary to help them.

The amount of effort this woman puts into her kids is nothing short of amazing, it really is. I've told her more than once that these boys are lucky to have her as their mama.

The most we can ever do as parents is our best. Sometimes that means that we make decisions like the one she has.

I honor her choice, I support her and I am proud to call her my friend.


  1. No one can judge any one else's decisions or choices unless you have walked in their shoes. If she is doing what she can to help seek treatment for her children, than I can support her in her choice to keep it from them.

    I wouldn't do it. But I'm not her, my children are not hers, and I have never walked in her shoes.

    The only thing I would fear, is when they do find out, if it is from someone else, will they be angry with her for keeping it from them, accuse her of lying to them?

    -The Insomniac's Dream

    1. I know that she struggles with what might happen when they do find out. As a parent it's easy to say that we were trying to protect them, but as the child, they may not be so accepting of that reason.

    2. She sounds like an amazing mother and I'm sure she is doing everything she possibly can to help her kids - she must love them more than she ever thought possible. As the mother of an Autistic (and amazing) child, I can say that when my daughter found out that there really was a reason she had been struggling and frustrated for so many years, she was relieved, Truth be told, we all were. There was a real reason. It wasn't just her being difficult, or me not being patient enough. There was a real reason for the daily struggles that Autism brings, and will always bring. But from that moment forward, we all knew what we were dealing with and she knew how to explain herself when things got really confusing. Of course every parent has to choose what works for them... My 2 cents.

  2. with a Dx like this no... and it's up to the parents for a reason. No, health professional can tell a minor anything that the parents dont want the child to know - there are some situations though that I would absolutely have a problem with the parents withholding, (e.g. communicable diseases, HIV or AIDS specifically) NOW wait... I have good reason and a good example of why, so give me a second.
    If a child has been given a Dx of something that can be harmful to others, they need to know as early as possible how to limit exposure to others. When my son was a freshman in H.S. there was a very pretty girl, we will call her Sally. Sally REALLY liked boys, I got a call from a CDC official that "I might want to take my son to the doctor for STD testing, and I might also want to include the HIV test" after I got back up off the floor, and picked up the phone again (I was at work mind you) all I could manage to say for a moment was WHAT??? - I didnt know what to think, my head was reeling my son was 15... not yet sexually active and had a GF who's mom I was friends with, what in the heck where they talking about. As I asked them questions, the response I got most often was "I'm sorry, we aren't at liberty to divulge that information" WHAT??? you call me telling me to get a panel of tests on my son for God knows what for reason's you cant share with me??
    I call our doctor, he has me bring my son in that afternoon, the whole way there, Im asking my son what this could be about, he looks lost, I can see him racking his brain, was there a contamination issue in gym class??? IDK. We were open in our conversations about sex, not graphic mind you, but open... doctor decided it would be a good idea to show my son (with my permission) some very graphic (and DISGUSTING) pictures of "members" with STD's, just to drive the point of "safe sex" home. Long story short (yeah I know too late) his tests came back clean, but we would have to repeat in 6 weeks to be sure (also clean, thank God)
    Now, comes the point in the story where I start going BALLISTIC on the school. The Principal, who was anything BUT my "pal" at the time, and I went round and round and round - through other avenues, because I am like a DOG WITH A BONE, I found out that there was this girl, Sally, in school who through no fault of her own was HIV+, she had been born with it, BUT she was VERY promiscuous and THAT IS her fault! The school knows she's HIV+ but of course they can't share that information (and I'm not saying they should) but there have been numerous complaints that no one knows about, parents or students because this girl, likes to "hook up" however she can with boys at school! Thank goodness with my son it was just a bit of *kissing*, but she didn't tell him she was HIV+, she endangered his life (dramatic? hell yeah!) Shame on my son for kissing another girl when he had a gf, but wow, shame on Sally!
    I was pissed at the school, I didn't know what the answer was, but I knew having 1000 students in danger because she was not responsible with her illness was sure NOT IT! At the end of the day, (I did not make my fight public, but I did threaten the Principal with doing so) she was taken out of school and home-schooled.
    So yes, in many cases, when it can affect others, I think children should be told as early as possible, and given whatever help, physical, mental, psychological, spiritual, they can get. It's never fair to endanger masses (I LOVE the way the show Army Wives has dealt with a young boy being HIV+ - it's ideal!)

    Sorry, this turned out to be much longer than I thought it would.

  3. How relevant is the diagnosis? I mean, does knowing the name given to their individual challenges change anything?

    If she is the mom you say she is, then she's already doing everything she can to help them be the best people they can be. While it may be necessary to advise teachers and other direct contacts of the diagnoses, why do the boys themselves need to know? When they are older and start asking questions, you give them age-appropriate information; you answer their questions honestly.

    Every parent has to do what's right for their family in their situation. If they're thriving, she's obviously doing the right things. If they're angry when they do find out, give them this speech:

    "Why does it matter? You are the same person right now that you were before you found out that you have been diagnosed with something. You will continue to be you, and nobody is prouder of you than me. I didn't tell you because it never came up. We're already doing everything we need to do to take care of it."

    It's not a lie. It's not even a lie by omission. It's just a part of who her children are, and she's focused on the whole kid, not the individual pieces. Ifsn't that exactly how it's supposed to be?

  4. First off let me say that it's awesome that the two of you are friends. I sure miss that connection these days.
    Secondly, she is the ONLY one that can make that choice and honestly, I'd be on her side of the fence in that decision.
    Our son is nearly 4 and I can't say that when his cognitive ability to understand ASD/SPD/or the battery of other dx he's being evaluated for came about, that we would tell him.
    We also want him to thrive... he is thriving. If her kids are thriving, what more is there??


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