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12/31/2010 11:29 AM

Trying to be a better Aunt

Peglet
Peglet  
Posts: 335
Member

Hi. My name is Peggy. I'm one of the group leaders over on the Crohn's disease group. I've come here today because I have a nephew with autism. He is fairly low on the grid as I understand it. But the truth is, I don't really understand it at all.

My nephew, Thomas, is almost eight. I'm on the east coast and he's on the west so I don't get to see him very often. When I do go for a visit I find that it takes me a couple of days to warm up to him. I find myself being scared to do something to "set him off". I will sit back and get a feel for the routines before trying to insert myself. I don't want to be like that. I know he can sense that I am uncomfortable. I overheard him telling his mother that I was spending all my time with his sister. That about broke my heart. I wasn't doing it intentionally. His sister is a typical little three year old social butterfly. She will come up to you and ask you to play or read a book. Thomas can be difficult because he wants to be in charge always, choose all the activities, and make all the rules. He has a difficult time switching modes. Once he has something in his head he just can't let it go. Food is a major obscession for him. He would eat non stop if allowed. I worry about him a lot. I was a tubby little kid and know what it is like to be teased about it. Now add socially awkward on top of that and it's a tough road. There haven't been any issues yet but the older kids get the meaner they can be.

Thomas also used to be a "flapper". He doesn't do it so much anymore but he used to get a small piece of paper and spend an hour running around the yard with it... flapping it and talking to it. I think it was the same as if I spent an hour pulling weeds in the garden. He found flapping to be a tension release.

His speach and vocabulary are great. He struggles a lot with hand eye coordination. Throwing a ball, tieing his shoes, and writing his letters are all challenging for him.

Ok, this is getting longer than I intended it to be. Sorry about that. What I want to hear from all of you parents is how can I be a better Aunt? I want to support my sister but she is on the opposite side of the country. I can listen to her concerns but I find myself not knowing what to say. Having a cronic condition myself, I know what a pain it can be to have people give suggestions when they have no idea what they are talking about or what I'm going through. Well now I'm the one who has no idea what I'm talking about or what my sister is going through with Thomas. Please teach me. Vent to me all the frustrations you have with the people around you who just don't get it.

I did find this blog to be very helpful in my quest for a better understanding. http://momnos.blogspot.com/2010/03/on-being-hair-dryer-kid- in-toaster.html

and

http://momnos.blogspot.com/2010_03_01_archive.html

Post edited by: Peglet, at: 12/31/2010 11:39 AM

Post edited by: Peglet, at: 12/31/2010 11:58 AM

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12/31/2010 01:36 PM
metalynn

Hi Peggy. My name is Shannon and I have 9 year old with Asperger's (high functioning).

I think it's pretty awesome that you nephew is able to verbalize that he does wish to have contact with you as well. I would suggest talking to your sister on how she feels you should approach him. She would know him best. Not interacting with him would definately feel uncomforable to anyone so by not interacting that could be more of a reason to set him off.

His "flapping", which is stimming, is a stress relief. A way to ground himself.

Hand-eye coorindation - definately yes. Something that is a struggle for most. Is he doing any type of Physical Therapy and/or Occupational Therapy?

Basically, without going on any further, he fits right in with alot of our kiddos we talk about on the board. Is your sister on MDJunction now or would she be open to joining. Also, please feel free to stay in our group to find out more information or ask questions. One of us are usually around.

And regarding talking to your sister, I know personally, it's just nice to have an empathetic ear to listen to me when I have the energy to talk. I don't always want or need feedback unless I ask directly for it - mostly it's just support.

Take care and thanks for taking the time to write.


01/09/2011 02:57 PM
pride4190
pride4190  
Posts: 6
New Member

I would be happy to give you my input...I know that when I was a kid, I found it hard to not be in charge since i wanted to be the center of attention. I wanted to choose all the activities and at times, I would get mad or pissed off if someone tried to get in my way of that. but the best way to handle that is teach him that there are other people and that his time needs to be divided between him and his sister. i think therapy would do wonders for him with some of the skills you mentioned that he needs work on. Dont worry about setting him off becuz theres never going to be a time when you know exactly when he'll be set off. For me, it was random and still is. the people who know me dont know when i will get angry over something becuz its at different times during different days or over different things. you need to show him that you can be there for him and your not afraid of him. i know some of my friends who are lower functioning autistics get off on the fact that people are intimidated by them and it makes them feel powerful. i think its the worst thing that an autistic can have is power. ive developed alot through my friends helping me and supporting me as well as counselors, therapists, and psychologists. also, maybe play a stimulating game that he likes with him like sensory things or hide and seek. for people with autism, they like being on the go and doing things. not necessarily with big crowds of people like at malls, but even outside in the backyard playing tag or maybe gardening? Sensory objects are a big motivating factor. We like touching different textures and things like that. i hope i helped a little. sometimes i can get off topic or ramble on...sorry if i did

01/14/2011 01:21 PM
BevAFB
 
Posts: 55
Member

Hey Peggy!

Glad to meet you. About your nephew's eating, I wouldn't worry too much about that one. Alot of autistic kiddoes won't eat much of anything, they can get so picky that it's scary, because its really hard to keep them balanced nutritionally. As long as he's willing to eat and to try things,he's probably pretty average for a growing boy his age. My last nutrition teacher was constantly reminding us that it is a good thing for those who are growing to be in a "positive nutritional balance," by which she meant that it's okay for growing little guys to be a little on the heavy side. Also,he has plenty of time to learn moderation, so don't rush to conform him to our food-conscious culture just yet. Hope this helps.

Bev.

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