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What has been the most unexpected thing about parenting a child with autism?

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What has been the most unexpected thing about parenting a child with autism?

by on Jun. 27, 2013 at 11:26 AM
Replies (31-36):
angeliabell
by Member on Jul. 1, 2013 at 8:37 AM
I've experienced similar support. From neighbors, therapists, teachers, friends, co-workers, and customers we regularly see shopping at Walmart. We live in a small town so I'm sure that has a lot to do with it. I'm not so sure we'd get the same support and generosity in the city.


Quoting Basherte:

The most unexpected thing for my family is all the support we have been given. Freely, and openly. (I don't mean financial support, but moral support)

I would have never guessed that so many people would understand what we are going through, or that the ones that didn't understand or barely ever heard of autism, would actually ask questions about it, then every time they see us, would ask how things are going. Then actually listen to us.

It started with early intervention. Of course they are paid to do that stuff, but you still find people that have attitudes. We didn't have a single person that had an attitude.  His preschool is amazing. He had one teacher when he started and now has another teacher. The first one retired.  He transitioned with that really well.

We don't have transportation. We can take a bus to the city, but there is no transportation for around where we live. The teacher from the preschool  came to our house to meet my son and to have me sign paperwork. Then when she was retiring, her and the new teacher came to our house for an IEP meeting, so that my son could meet the new teacher. Within minutes of meeting the new teacher, my son was initiating interaction with the new teacher. I was so proud. The new teacher (John) bent at his knees to get down to my son's level and interacted with him. My son was smiling, giggling, and having a lot of fun.  They were here at our house for about 45 minutes. It was amazing.

The neighbors ask about him and talk to him often. Even the people at the gas station ask about our son. Talk to him when he's there, and know when to physically back off as well. They are learning his cues as well.

It was unexpected that our son would receive this much understanding, this much positive attention.

We are very lucky.


lady_katie
by Silver Member on Jul. 1, 2013 at 8:58 AM

Being diagnosed with it myself! I'm STILL getting over that shock. If someone were to tell me two years ago that this would be my life, I would have told them that they simply MUST have the wrong family because I don't have autism. 

The second most unexpected thing was the lack of support. I still cannot wrap my head around how many people have walked out on us. 

Quoting Cafe Steph:

What has been the most unexpected thing about parenting a child with autism?


Basherte
by Silver Member on Jul. 1, 2013 at 9:00 AM

I live in a small town as well, but have had the same with businesses and people in the city when we go there to shop as well.


Quoting angeliabell:

I've experienced similar support. From neighbors, therapists, teachers, friends, co-workers, and customers we regularly see shopping at Walmart. We live in a small town so I'm sure that has a lot to do with it. I'm not so sure we'd get the same support and generosity in the city.


Quoting Basherte:

The most unexpected thing for my family is all the support we have been given. Freely, and openly. (I don't mean financial support, but moral support)

I would have never guessed that so many people would understand what we are going through, or that the ones that didn't understand or barely ever heard of autism, would actually ask questions about it, then every time they see us, would ask how things are going. Then actually listen to us.

It started with early intervention. Of course they are paid to do that stuff, but you still find people that have attitudes. We didn't have a single person that had an attitude.  His preschool is amazing. He had one teacher when he started and now has another teacher. The first one retired.  He transitioned with that really well.

We don't have transportation. We can take a bus to the city, but there is no transportation for around where we live. The teacher from the preschool  came to our house to meet my son and to have me sign paperwork. Then when she was retiring, her and the new teacher came to our house for an IEP meeting, so that my son could meet the new teacher. Within minutes of meeting the new teacher, my son was initiating interaction with the new teacher. I was so proud. The new teacher (John) bent at his knees to get down to my son's level and interacted with him. My son was smiling, giggling, and having a lot of fun.  They were here at our house for about 45 minutes. It was amazing.

The neighbors ask about him and talk to him often. Even the people at the gas station ask about our son. Talk to him when he's there, and know when to physically back off as well. They are learning his cues as well.

It was unexpected that our son would receive this much understanding, this much positive attention.

We are very lucky.



CafeMom Tickers
lady-J-Rock
by Bronze Member on Jul. 1, 2013 at 9:29 AM

How many people are educated about Autism and want to be helpful. There are many different support groups for parents, kids, young adults and adults who either are autistic or care for someone who is. It doesn't matter where on the spectrum you are. There's a support group for you. Some even offer respite care. They're run by differagencies. 

3guys4me
by Member on Jul. 1, 2013 at 9:29 AM
The most unexpected thing for me is how many "autism experts" there are out there just chomping at the bit to tell me what I should be doing. Seriously. From the Walmart cashier sending my 5 year old into a major meltdown with her 3 minute monologue on how he is too old for pull-ups (which turned into a script for him to repeat when he's feeling frustrated) to the lady at the school department telling me he's "not autistic enough" to require testing before school starts, to the lady at dunkin donuts who talked loudly to her coworkers about how "spoiled" he is, and how badly in need of a spanking because he had a meltdown when she gave him a donut without sprinkles the one time he was able to conquer his fears and order a "white frosted donut WITH sprinkles" all by himself. And even my own mom who loves him dearly, but spends time researching the ways I must have given him autism (vaccinations, ultrasounds, cell phones, microwave use while pregnant) instead of researching the way his brain works, or how to best interact with him. To my own friends who think its just as easy for me to leave him with a babysitter as it is for them and their nt kids. And that when I back out of plans or have to trade nights off with dh that were just using autism as a convenient excuse.
Cubanmom84
by on Jul. 1, 2013 at 10:09 AM

The most unexpected thing, i guess is the fact that no one else understands like you do. A lot of family members treat it like he is "mentally disabled" instead of an autistic person, who can hear, understand and comprehend what your saying... they don't get it.. no one researches, no one looks anything up, they just say "oh he looks "normal" or "he seems fine to me" or stupid shit like "why does he do that" and no one seems to educate themselves, so I have repeat myself over and over and over again, and I start looking like a bitch lol

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