If I had a dollar for every time I heard the words, "Oh, I could never do what you do" or the incredulous, "How do you do it?" my husband and I could go on a sweet vacation. (Oh wait no, we couldn’t because getting a babysitter for our kids is next to impossible... mainly because of that one.) And then there are the opposing comments from within the disability community, "all parenting is hard" and "there are no guarantees when it comes to baby-making."
Both of those messages are simplistic and dismissive toward the plight of a parent of a difficult child.
Let me make it clear that Kimani is not hard to raise because she has Down syndrome, she is hard because she is hard. My other two girls with Down syndrome are not hard to raise. Yes, people with disabilities might bring with them some complications that make your life less simple, less easy but in most cases the disability itself is not the ticket into the "hard to raise" club. And many, many children without an identified diagnosis or any label make it into the club by the time they are teenagers.
To you who
To those who say that all parenting is hard. Yeah, it is. I have five other kids ranging from age 20 to age 3, and I know that there is work, heartache, and stress involved in raising children. But you need to understand, there is hard work and then there is HARD. So please stop silencing those who have situations you thankfully cannot even dream of. I know I am not supposed to spoil the narrative or god-forbid reinforce incorrect and outdated stereotypes and hopefully this post is not. (You read the part about this not being an issue limited to a specific disability or even disabilities in general, right?)
What makes a child hard to raise? I suppose each case is unique and complicated. It is like the perfect storm. And in that way, it is true that you never can be sure if your reproductive efforts will take you there.
(Hey snarkers, did TUC really let her kid pull her other kid’s hair while she took pictures? For the record Kimani was being verbally directed to cease and desist by her father who was 2 seconds away from rescuing Autumn.)
What are the characteristics of a hard to raise child? Well, now I only have mine to go by but I would say that if your child:
-- is not responsive to the usual (ok and even unusual) behavior reinforcers;
-- has no empathy toward others;
-- shows little or no affection;
-- is aggressive or violent toward themselves and/or others;
he or she is probably hard to raise.
I’m not just whining "Oh woe is me" or venting. I am telling you this for a reason. It is important that we allow parents of difficult to raise children to talk about it. We can’t keep telling them to STFU because they are somehow hurting the message. That message is still valid. This is not about Kimani. Kimani is fine. She is happy and she has all her needs met, and from her perspective life is as good as it gets. She deserves that. It is not her fault that she is hard to raise and she is in no way punished for it.
We the parents are the ones who are punished for it. If we are honest, and step off of the pedestal, we are judged as bad parents. If we keep up the facade that our child is mostly like your child, and that we have it all under control, we suffer from an indescribable loneliness and constant guilt.
But I am done with all of that crap because I am an awesome mother to a child who is really hard to raise.
14 comments:
I resonate with this post, and am glad you wrote it. Kimani and Evie could really do some damage I suspect.
I have a Kimani. Except that her name is Johanna. She's smart, funny, beautiful and affectionate. She's also a bit maniacal at times! She's also one of 3 sisters in our home with Ds, and has 6 older brothers. Out of the 9 kids, none have been as difficult, perplexing, frustrating, and sometimes embarrassing as Johanna. She can be a handful! Then catch you off guard with her absolute sweetness. Of all my kids I don't think any of them love me more fiercely than she does.
Oh I hear ya! But I have never tried to hide the fact that mine is hard to raise. The trouble is that people don;t see it until they spend a considerable amount of time with her. BUT, every time, and I mean EVERY time some one spends enough time with us to really see her in full bloom they say "wow, now I know what you mean. I don;t know how you do it." That comment both helps me feel justified and makes me angry. So do people think I am just whining about my kid when I say "she is really hard to raise"???? I guess they do.
I've had two of these. I rarely mentioned problems with them because I got the old "I told you if you adopted older kids from overseas you'd have problems!!" but eventually I did ask for help, then I was condemned, judged, and turned against. Can't win. Thankfully, both of those difficult ones are grown and gone now and the two easy ones are still left at home. It's hard to talk about having difficult kids, cause those who have none just don't get it.
Hi, I am so glad you wrote this..because there are kids that are hard to raise. I am one of five kids and one of my sisters constantly brutalized our youngest sister. My parent went through therapy and all sorts of interventions with her but she had to mature and grow out of this phase. It also turned out she has some sort of bowel disease and always had stomach pains. I know this is quite obvious, but could there be any underlying medical issues causing Kimani to communicate in a way that harmful to herself and others?
Thank you for sharing that. It is possible that Kimani has tummy trouble or some other physical thing here and there going on to make her grumpy. We are trying to track her and see what the triggers are. For now it seems like she does it when she is mad about something, jealous of attention, or just feeling impulsive. When she is impulsive, she bursts out with this crazy devilish laugh (and it is super hard not to laugh with her) when she is grabbing someone's hair (or plate, or coffee). She is mainly non-verbal and we are working really hard to give her ways to communicate (signs, PECs, manipulatives) but it still must be so hard to not be able to say what you want to. And I would imagine she is quite jealous of Autumn who went from being a non-verbal baby to a chattering toddler right before her very eyes.
Amen. One of our typical kids is hard to.raise. Add in the fact that he has two seperate households trying to correct issues that.come up and having sometimes radically different ideas on how to do so and basically its a.nightmare that we.never can wake up from full of problems that never truly go away or get resolved..
Thank you for writing so clearly and thoughtfully about a topic that is hard to explain. We can all identify a little bit, even if our children don't meet those criteria. What you are talking about is clearly a different animal though, as you stated very impactfully and gracefully.
This one rubbed me the wrong way; probably because I wrote a post the other day about my difficult child. The point I was trying to get across in mine was that having a kid with Ds wasn't what was making my life harder and that my challenge came from our "perfect" oldest son. I wanted people to get that Ds, Autism, or whatever, some kids are easier than others. The diagnoses don't necessarily tell the whole picture. I think you are saying the same thing, sort of, but we are coming from different sides. I wanted people to know that they were not guaranteed an easy journey just because their kid was born "perfect", "healthy" or whatever. I hope you get what I am saying. Just wanted to let you know how I felt, so I wasn't stewing over it. I do tend to take things personally. It's something I am working on. :)
Amy, I think we are saying the same thing. A child can be very hard to raise and Ds, or any other diagnosis has nothing really to do with it. And as you say, some kids are easier to raise than the average and that too is not based on anything reliable... it just is. Right now Autumn is my easiest by far and she has Ds. My three typical kids were all harder than her at this age, so there is no telling how it will go. Thank you for sharing your thoughts on it.
I've been behind on my reading. Maybe I'm one of those who made you feel silenced. For the record, I don't disagree with single thing you said. Because you didn't lay blame. If Kimani is hard to raise, she's hard to raise. You're not trying to parse it out as a "Down syndrome thing" or any one "thing". You're not taking your experience and generalizing it to an entire group of people. That's what bothers me. I don't want someone taking their experience and making it about "us".
Anyways. I 100% agree with you that you deserve a place to be honest. I just wish everyone were as thoughtful as you with their words.
I hear you, TUC. I guess sometimes (most of the time) I feel I'm damned if I do and damned if I don't. When I talk about how "typical" my life is, I'm accused of sugar coating. When I talk about something being hard, I am accused of hurting the "cause". I think the best way to help our kids and our families is to live the most authentic lives we can, warts, beauty and all. <3
I stopped reading when I got to you asking if those of us who say we couldn't do what you do would murder a child. Why try to incite those of us (yes, myself included) who truly know we could not raise a Down's Syndrome child? Just because we know our limits doesn't mean we're all murderers! In fact, if someone knows they couldn't raise a Down's Syndrome child, so they adopted them out, that would be because they acknowledged they weren't up to the task and cared enough to find the child a home where someone was better suited. This seems to me a much better option than resorting to mistreatment, or as you suggested, murder. So, why lump them together? I understand you're angry and tired of being judged, but why turn around and judge others?
Anon,
Down syndrome is not the reason Kimani is tough to raise (you got to that part of the post), so my question has nothing to do with if you can raise a kid with Ds or not, and I am certainly not judging abortion if that is what you think I meant. I am seriously wondering what people mean when they say that about a child that is already here. What do you do with a child that is already five years old and, if I understand them correctly, is "too difficult to raise" in their opinion. It just seems bizarre to me that they never consider what the alternatives are. And yes, adopting out a child you can't handle is certainly the best choice, although I am certain it would be heartbreaking for any parent that had to make that decision. I lumped the options together because they are all painful, not because I thought they are equal in appropriateness. Thank you for pointing it out to me how it looks; I appreciate your perspective.
Post a Comment
Go ahead, say it.