State: Illinois
Country: USA
Member since: Mar 18, 2008
Last logged in: Oct 21, 2008
Hello. My name is Stephanie and I'm the mom of two great kids. My daughter is 21 and NT, and my son is 10 and has high functioning autism. I'm the wife of a wonderful, loving man for 20 years and he's the best Daddy in the world!!
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Robbiesmom's Compositions
by Robbiesmom on 06.19.08 - public - 107 visits
I have a problem. My mom and I were talking last night, and the subject of respite care came up. She asked me why is it so hard to find a respite caregiver? I told her that it takes alot of time, and effort to find someone because of the trust issues, and Robbie doesn't always "click" with someone right off.
So she asked me if Robbie does okay at school with his teacher, aide, etc. then what's the problem? I didn't say anything, but I thought to myself, "I can't believe you asked this!" I just told her what the problem is! My mother has never taken the time to educate herself about autism in general or about Robbie's autism. She relies on what I share with her. I guess she figures that since Robbie is our child, it's our deal, not hers. I never thought I'd see such a closed-minded side of my mother! She never seemed to have a problem with babysitting Robbie before his diagnosis, but since then, she just seems so nervous about dealing with Rob. I think she's afraid of him going into "Meltdown Mode" and she can't handle it. I don't know what goes through Mom's mind, but from where me and my Husband stand, it looks like she sees Robbie as something to fear. Like how people used to react when we told them about Rob's autism and they weren't familiar with him. We used to get all kinds of reactions like, surprise, sadness, and yes, fear. It just really upsets me that Robbie's own grandmother can't find a way to accept his autism. Right now, I'm feeling so confused on how I feel about my mom. I love her, but if this is how she sees things, then I don't think Robbie needs to have her in his life. This sweet little guy doesn't deserve her ignorance and neither do we as his parents. If anyone has any suggestions on how to deal with this, I would certainly welcome them! Thanks!
Comments(6)
shannonj
Posted on Fri, 20 Jun 2008
I'm sorry....that is tough, because if we need anyone to understand our kid's needs, it is family.
Robbiesmom
Posted on Fri, 20 Jun 2008
Thanks for the input! I've had some time to mull things over. I know cutting ties is not a wise decision, but I have tried many times to talk with my mom, and it's like talking to a brick wall. I don't mean any disrespect toward Mom, but it seems to me that if she is insecure, then the best thing would be for her to open up to me about them. I don't see this happening any time soon. Right now, the hurt is too fresh, and talking with Mom is not an option. I forgot to mention that Rob is the youngest grandchild, and not only is there autism in our family, but other mental issues, too. Namely depression. My feeling is that part of the reason Mom has so many insecurities about Rob is that he is not on any meds. I'm not saying meds are a bad thing, far from it! I'm a firm believer if the meds help then please use them!! My husband and I just don't feel that Robbie needs meds, and our pediatrician agrees. I have to wonder if Mom would feel differently if Robbie was on meds. Maybe she would be more accepting, who knows?
Anamcara
Posted on Thu, 19 Jun 2008
One thing more to keep in mind...What your mother was taught or heard about what autism was when she was growing up. Remember, it has not been that long ago where anyone suffering from autism was basically written off and institutionalized. It was considered to be something to be feared, spoken about in whispers, or never acknowledged. Depending on your mother's age, all of that imagery still plays in the back of her mind and preys on her insecurities. If she has never taken the time to educate herself regarding all of the new information out there, and relies on you and what you share with her to do the job, then it sounds like education is in order as the first step in helping her find a way to contribute. For us, that was allowing my parents to read my son's evaluations and understand just how and where his deficits are and how severely affected his behavior is by those unseen deficits. That was a wake-up call for them, and a turning point in understanding it wasn't just permissive parenting or a tantruming child.
Jake9068
Posted on Thu, 19 Jun 2008
I agree with noaholiviaian. It could very well be her own insecurities. Maybe she is afraid of doing something "wrong". Maybe she is afraid of hurting her Grandchild. Maybe she thinks respite workers are trained (lol) and that a child with ASD needs a trained caregiving. I also have the problem of understanding some of the decisions made by people with low functioning ASD. It is because their ASD experience is entirely different than mine. I wouldn't cut family ties because of a lack of understanding. It appears that she cares enough to ask.
minnakay
Posted on Thu, 19 Jun 2008
She is missing out. I tell my husband the same thing about his parents who have no time for Will. It is their loss!!
noaholiviaian
Posted on Thu, 19 Jun 2008
Well, if your own MOTHER is scared to take care of Robbie, she should be able to understand why any old person might not be a reasonable choice. I don't think it has anything to do with her acceptance of Autism, but instead her own insecurities. Don't cut her out simply because she doesn't understand. I'm not sure I would understand if I didn't have a child on the spectrum. Even now, I find I struggle sometimes with understanding how parents of the lower functioning kids make their choices and decisions because I don't live it (my son is high functioning). I still have to stop myself from thinking they shoud 'just do this' or 'don't do that' because it worked for me. Talk to your mom. Let her know you are disappointed with her behavior/fear of Robbie and you'd love to have her become comfortable with her grandchild. Ask her what YOU can do to help her. It is worth a try. I've dealt with this issue, so I get how frustrated you are! Mine is my husband's step-mother, so the family ties aren't as strong and we didn't make much of an effort. I feel bad about that.
