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.
17 comments:
I'm sorry you felt hurt. I guess it just goes to show that you never really know what someone is going through until you're there yourself...walking in those shoes. It would have been nice for her to ask for your help in the beginning and it's a shame she didn't.
I agree with the other comment that she probably didn't realize what you were going through until she experienced it herself.
You have been immersed in it for years and have a far different perspective. Those of us who aren't around, or all that familiar with, Autism won't know how to react or support.
It's not a lack of compassion, it's a lack of understanding and knowledge.
I still don't think you're a B*, lol, as I'm sure frustration has mounted, but it sounds to me as though she was seeking insight. Perhaps it was insensitive of her to not take an interest in the past but I think she's understanding better now.
Unless you are put into a position where you have to walk in another person's shoes you rarely think about what they're going through or have to endure.
She's there now and I'm sure she will need to seek your advice and guidance in the future.
I've done that too.
I'm guessing that she doesn't even read your blog to keep up with what's going on in your life. ;)
I have issues with my brother and try to take it one conversation at a time, one day at a time. If I look back and let feelings accumulate, it hurts. I also try to expect nothing from him, then I won't be disappointed when I get nothing.
Please don't be hard on yourself! You've been through alot and deserve some loving attention and support.
As Mom to 3, Stepmom to 3, my husband and I take on our parenting challenges seriously-my stepson 9 has Aspbergers...my sister doesn't miss an opportunity to correct my parenting.
She has 1 child who is 17.
No, she doesn't read my blog. I asked her if she has ever been on my site and she said she was too busy.
I hope things go better at the next family gathering. I can understand how your feeling. I don't have brothers or sisters but I don't have parents that put their two cents in.
My son is learning disabled and only my cousin took an interest in him and did things with him like take him to the movies.
My 2 brothers ,,, naahhh no way !
His dad left when he was a baby.
Just because they are related doesn't mean you will get any sympathy or understanding.
That's what friends are for or
a group of parents in the same boat.
I collect and post links to free information and programs that may be helpful to dyslexics.
Free audio books ,speech to text programs etc. I test them out before I post them. I was listening to a professional read Huckleberry Finn the other day (it has been about 40 years or so since I read it) and I was thinking that the experience was perhaps better than when I read it way back when. The dialects worked in the audio format really well, and what an imagination Tom Sawyer had. There is a reason that classics are classics.
The link to the different links is http://dyslexiaglasses.com/links.html
Anyone can show links to stuff you have to pay for, Free stuff for dyslexics is a little harder to find.
I sell See Right Dyslexia Glasses for visual dyslexics( about 10% `of dyslexics) so the links to free stuff is for the 90 % of dyslexics without visual problems.
I totally know where you're coming from Tammy, I get so frustrated with people who you know aren't making any effort to listen or understand what you're going through. I seem to be repeating myself to them all the time. As was said earlier - people really do have no idea until they've walked in your shoes.
What an honest post for you to write, I really hope things feel better for you next time you meet.
Thinking of you
Sarah xxx
I'm sorry you went through this, but this is what happens.
You're living autism every day, she didn't.
Until it's your own child that is dealing with something, it's all theory and hear say.
When people are confronted with something that's not completely the norm in their children, they're overfloded with all sorts of feelings. Turning to the right person for help is not what happens as a natural impulse, certainly not when you've never fully understood what others experience in their daily life.
You're hurt because she never acknowledged how difficult your life was, you're hurt because she didn't see you as the big source of support at that moment, and you're hurt because the family hierarchy that you feel is not respected by her.
With people who make me feel I'm lectured I always tell myself they're thinking aloud.
Funny thing is, most of the time they are. In a way they need confirmation from outside and they don't get it the way they can deal with it, so they talk aloud and that helps them.
With 4 kids on the spectrum and 2 dyslectic I know what goes on in my life. I've never had any understanding of the family.
They consider bringing the car to the garage a problem... well... in a way it makes me feel OK with my life. At least I'm living it very intense at an existential level.
I feel sorry for both you and your sister that you both feel isolated towards each other in your troubles.
Maybe enter my give-away to have some very small fun moment?
I agree with past commenters. It was probably hard for her to understand what you are going through. I have worked with special needs kids so I did training to work with them. But I would no way be prepared if it were MY own child. Even if it were my niece or nephew. I would have done the research and learned about it at that time though. I would want to be a help to my sister or brother. It's just sad that she didn't realize that sooner.
This is the first time I've seen your blog. A friend emailed the link to me. It's very nice.
I have a young son with ASD. I think you did great, personally! Those are legitimate feelings and questions. I was asked in a questionaire if my son's autism had put a strain on family relations. I didn't know how to answer that because it's not the disorder causing the problem, it's a combination of THEIR apathy or ignorance. I just couldn't blame the autism for that. It may be *about* his condition, but that's not what the real problem is.
I'm sorry & do may possibly understand a bit of what you went through. I got a lot of that from a couple of folks in particular (who I don't see much anymore; whew). But the rest of the family isn't much interested & don't ask, although if they read something they are sure to clip it to "educate" me lol.
She may have just been unloading her newfound knowledge, but I can understand the frustration. Perhaps you could tell her you're willing to offer any advice or help if she needs it in future ;-).
Hi Tammy
I'm so sorry you've been through that. It does happen. People discover something with their child then go deeply into the analysis then proceed to lecture another person who already has been there and knows what it is. My family perhaps are different in that respect. ASD is genetic in my family so each one of us can share our concerns and challenges we have had with our children. Work through it, chin up and a hug to you and your wonderful family. So sorry I haven't been over until now.
Love and hugs
Liz
Some people always think that what they are going through is much more important than what someone else is going through. Maybe your sister doesn't even realize she is selfish or that she hasn't acknowledged you and your struggles in life. It's not an excuse, just an observation. It still hurts, and I'm sorry you had to endure it.
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