I’ve Had It

mom of an autistic child Let me give you a little background first. My sister is a director for a swim camp in FL. She has never truly understood what I go through with my son. She has never really understood what my son is going through.

She is up here visiting and is staying at my parents house with her family. We had a discussion about a conference she went to recently. She heard a lecture about teaching children with autism how to swim. She went on and on about how you have to adjust teaching methods for children with autism because the spectrum is so big and you have to adjust for each child.

I held my tongue. She wasn’t saying anything that I didn’t already know. I wanted to scream at her that I am a mom of an autistic child and know all of this. I didn’t. I just sat there and took it.

Later, she started talking about her daughter, my niece. She told me that they believe she is dyslexic and will be tested when they go back home. She went on to say how her little girl is doing good, that children with a problem tend to adapt or compensate for their disability. She was lecturing me about disabilities. She was educating me about how children cope with one. She was explaining things to ME!

I snapped. I’m sorry, I know that I should have been more sympathetic, but I had heard enough. I told her she was “preaching to the choir.” She responded “I know, but this is all new to me and I am just learning about it.” My son is ten years old and autistic. Her nephew! Why is she just learning about child with disabilities now?  

I am sympathetic for what she and my niece are going through, but at the time I was just fed up. Visiting with my family is stressful, but I do it because we all really do love each other. My children enjoy being around their extended family. My son had a really good time yesterday, as did my daughter. If they weren’t, I may have packed everyone up and left early. Believe me, I considered it. In the end, I let it go and tried to enjoy what was left of the day.

You may read this and think I am a terrible person because I lashed out at my sister. That’s ok. I’m human and there are times when I just can’t help but be bitchy. Maybe, if she had called me and said “I think my daughter is dyslexic and could use your help?” or anything that remotely acknowledged that I have been where she is, I would have been sympathet. Instead, I get the news and then a lecture. Yes, dyslexia is extremely different then autism, but I know what is is like to discover that your child has a disability. You would think that I would have been the first person that she contacted when she found out. I suppose that I should also admit that I just wish we were close enough and that she respected me enough to turn to me. As the older sister, she has always treated me as the baby sister that she has to educate. Given our current ages, I want her to realize what she is doing and stop. I will be seeing her again on Saturday. There is going to be a big family get together and I hope things go better.

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0 thoughts on “I’ve Had It

  • August 14, 2009 at 10:43 pm
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    It’s hard to really understand labels.  If you make too much of them then it sounds like you’re trying to box the kid in and are convinced that the kid has little to no future and just deserves pity.  So for many people who don’t really understand b/c they don’t see the kids day in day out, it’s easier to basically forget, ignore, and assume that labels don’t mean much.  (I’m not even talking about those who think that labels are just excuses.)  It’s also hard to admit that there are real problems.  Your sister was probably half in denial.  Chalk it up to a mix of ignorance, overconfidence, it-couldn’t-happen-to-my-family, it’s-not-really-as-bad-as-she-says, and what not.

    Your sister has evidently not really heard, seen, or understood a lot of what you have been going through.  It’s no wonder that you were frustrated with her and couldn’t hold it in any longer.  She’s been your older sister all your life and she doesn’t expect you to have insights she doesn’t.  That’s just plain stupid, but sadly people in families always develop some tunnel vision — when my mother was about 70 her mother sometimes treated her like a little kid.  Not surprisingly my mother got frustrated and angry.  It’s not easy, but try to lighten up.  Try laughing the next time she says something really stupid.  She may end up seeing your point and laughing with you.  At least I hope so.  Hopefully she starts to listen with more attentiveness, understanding, and concern to you. 

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  • August 14, 2009 at 5:19 pm
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    @ElliottStrange@xanga – Well, since I’m sure you’ve got a couple of bucks riding on how you’re right, as usual, I’m going to give your little ego a rub and reply.

    Your arrogance is thoroughly disturbing. You can learn something from everyone, whether they be two weeks old or dead for two hundred. People are responsible for their children and their children alone? That attitude is the reason children get abducted and abused. That attitude is the reason we have serial killers and rapists. We all need to look out for children period, if they are our own, or not. You think a serial killer is born overnight? It’s years and years of development–of them being left to think the way they do, without anyone noticing and attempting to help or correct the situation. Teachers are afraid to get involved. Friends are too concerend with themselves. Other family members feel it’s “Not their place” because of the attitude YOU have just described. It is you who cannot be taught, quite obviously. I hope that one day you learn to flush your image of a perfect “Let’s all pretend to be enlightened” reality down the toilet.

    It takes a village to raise a child.

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  • August 14, 2009 at 1:42 am
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  • August 13, 2009 at 11:10 pm
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    @RaeChan77@xanga – Your broad misconceptions are quaint, if unoriginal and unsurprising. We alone are responsible for our offspring and others for theirs respectively.
    It is up to us to be conscious of and to properly interpret the intentions of those around us when they are not made clear, rather than simply blowing off steam because we are too inept or too lazy to do so.

    However, there is nothing I can learn from you and nothing I can teach you that will stick – and thus no reason to attempt discussion with you further. Respond if you wish… people seem to have this thing about last words.
    Can’t promise I’ll notice though.

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  • August 13, 2009 at 4:03 pm
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    @ElliottStrange@xanga – Bull. That’s not overly sensitive. Nor is it a volatile reaction. Mothers protect their children. They are defensive of their children. And when someone who is supposed to be the aunt to your child blantantly exposes that they have not been paying a lick of attention to them for the ten plus years they have been alive, you get frustrated. When they go on to preach to you about everything you’ve been trying to plead with them to understand for your child’s entire life, you get pissed. When they continue on to say you have no idea how difficult it is, you rip their head off, smile, and walk away a happy woman.

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  • August 13, 2009 at 4:00 pm
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    @.@ Ugh, honey, don’t even BEGIN to think you are the only one that would have had that reaction. My sister is the exact same way, and does the exact same thing, but on an hourly basis. You can tell her about your day all you want–she doesn’t listen, because she’s too busy planning what she’s going to tell you. You can complain/ask for help all you want–she wants you to deal with her problems instead. You can tell her mom said we have to do the dishes–she’s not ready yet, but twenty minutes later, she’s ready to tell you that you forgot mom said we have to do the dishes. Constant, non-stop, varying degrees of annoyingness…and then she comes home, and complains that this one kid at school annoys her. And the reasons for that, which she will list with much exagerration, is a list of everything she does on a daily basis. -_- I can tell her “Yeah. I know the feeling.” But again..she doesn’t hear me, because she’s too busy fuming over having met herself.

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  • August 13, 2009 at 3:08 pm
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    I empathize and sympathize with the author.My younger child has ADHD with co-morbid LD. I receive incredible amounts of unsolicited advice and judgmental statements from friends and relatives who think it is a discipline problem. One in particular knows ‘everything about children’, even though she, herself, is childless. With all the other pressure that life offers, maybe the author has the right to be a little frustrated with her own sister!

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  • August 13, 2009 at 4:09 am
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    Overly sensitive and volatile reaction, hints at personal insecurities yet to be resolved.
    Further diagnostic would require more evidence.

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  • August 13, 2009 at 1:20 am
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    It doesn’t seem to me, from what you described, that she was trying to educate you – it looked more like she was just repeating to you what she knows. One excellent way to learn things well is to “teach” them, and in this case, maybe she is just kind of antsy about the situation and is trying to share her information. Of course, you could take her aside and say in a friendly way that “hello, I’ve been going through a similar situation for the past several years! I was hoping you were paying more attention!” and then also add that now that she is starting to understand, maybe you two can have more discussions about the topic and even help each other deal with the difficult times (and share the joys, too).

    Anyway, I’m sure she doesn’t mean to make you feel like you are being preached to, and at this point it looks like you both need a little more attentiveness to what the other is going through.

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  • August 13, 2009 at 12:54 am
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    I think that while she should maybe not be expected to know, she could have asked instead of acting as though you did not already knows these things. As you are in the situation you are, she should be seeking your advice instead of trying to educate you.

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  • August 12, 2009 at 10:30 pm
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    Things will get better.  You just have to sit back and gradually coax her GENTLY into the idea that she is in the place that you once were and she is learning about disabilities!!

    Be happy that your sister wants to learn about the disabilities that both of these children have.  My mom and my sister NEVER accepted my deafness or my disabilities.  Talking about any sort of disability in the home that I grew up in..was inheard of!!  Thank God,..your son and the little girl will not grow up under such a cloud!!

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  • August 12, 2009 at 10:00 pm
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    I think sometimes people need to repeat information aloud when they are afraid. She was probably just worried about her daughter. Maybe she just needed to go over all the information she knew and she needed to do it with someone she trusts. you.

    Sometimes people need to feel like they are in control… even if they might not be. I don’t know. I’m just speculating.

    good luck with everything.

    <3

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  • August 12, 2009 at 8:51 pm
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    I will stray from the popular opinion and say that I agree with the author on this one.  Family is family.  Family should at least learn the basics and take some interest in what is happening with their fellow family members.  We are such a “me” society that now we can’t even turn to our siblings or parents for support and understanding.

    When I found out that my niece was going to be born with severe physical deformities to her extremities, I wanted to know everything I could and how I might be able to help.  Which is a hell of a lot more than I ever got when everyone found out that my son had autism.  My aunts and uncles do not even greet him at holiday gatherings.  Nobody ever asks about him.  When I try to talk to my mom about my fears of what might happen when I am too old or sick or when I die…she gives a vague…”someone will step in”.  Funny how “someone” is supposed to step in when no one even takes the time to get to know him or his ASD.

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  • August 12, 2009 at 7:03 pm
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    I agree with freetheleafcutterants.  Your sister didn’t mean any harm and I am sure she loves her nephew to death, and she is aware of his disabilities.  However, it is different when it is your own child.  I understand it is frustrating to listen to things that you already know, but for her it ws new b/c now she has to directly deal with the problem.  She wasn’t trying to ignore what you knew or act like she knows more than you know.

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  • August 12, 2009 at 5:51 pm
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    I have a disabled child.  And I agree with freetheleaf’s comment above.  I am touched and thrilled when a family member or friend takes the time (and it is a lot of time) to learn about autism/asperger’s… but it would not be fair for me to expect it and/or get angry about family not reading up.  It’s a lot of stuff… it’s overwhelming and scary when it is your own child… that’s a lot to expect from people who are not directly affected.

    That said, I empathize with your frustration.  It’s lonely out here, and very difficult to help others to understand what you are going through/have gone through.

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  • August 12, 2009 at 5:28 pm
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    If YOUR child is the one with autism, why should SHE be expected to be an expert on children with disabilities? I was diagnosed with Asperger’s syndrome 15 years ago, and I still wouldn’t expect my relatives to know all about it. Lighten up, man. I’m sure it’s stressful to learn that your child has a disability, and it probably eased her stress a little to tell you the things she was learning about it.

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  • August 12, 2009 at 5:23 pm
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    It’s interesting that people with no children (or in this case younger children) always have parenting advice to hand out to those with more experience.

    I find a lot of women with no children at all like to advise me on how to raise my own all the time.  With two children, my sister in law (who only has one and my neice is younger then my own daughter)  LOVES to chew me out about my parenting skills.

    ONE of my better examples:

    MY NEICE:  Absolutely has to have 4 glasses with every meal… One water, one chocolate milk (she won’t touch white), one koolaid, and one fruit juice.

    MY DAUGHTER:  Drinks whatever she was given with her meal.  There are no other options.

    And yet, my Sister in Law LOVES to Dole out the parenting advice and tell me what a bad mother I am for not giving more options.

    I am sorry, my mother gave me no options.  This was for dinner, eat or starve was a common phrase.  And we always ate.

    (Yes I realize this does not apply to the disability part of your post.  Only the parenting.  I don’t have to deal with Autism here I just love your posts.  They sometimes just help me through my own ordeals indirectly)

    Amberley

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