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angelgarden
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08 Oct 2012, 7:31 am

My parents have been fairly supportive since we told them about our son's diagnosis. But it does seem to help that we live a couple continents away and they don't see us on a day to day basis for judgement! I have been very proud of my mom for doing lots of reading up on ASD's and for sending me well-meant links/articles, etc.

My son getting diagnosed was actually followed by my nephew--who is SOOO much like my son--getting assessed as well, and also receiving an ASD diagnosis. So, lots of support there, which is nice.

The MIL--and any of the in-law family doesn't know. Don't really look forward to their reaction. Guessing it would be denial/permissive parenting / crazy ASD trend accusations. I'm not telling them . . . and I am guessing it may not come out for awhile, not until we have any kind of extended visit.

One of my brothers was accepting but ignorant, "That's so Cool. So, he's a genius then?" Hmmmm . . .

Haven't told many friends. The few that know have been affirming and haven't questioned it. A few silent ones may think we are crazy. The ones that don't know . . . well, I'm not worried about what they want to think if/when they hear. I'm not going to lose sleep over opinions. The friends who support and stick around are the ones worth spending my time thinking about.

Personally, I am glad we live so far away from 'most' of the family. The only family I really wish we did live close to is my brother & his family since they also have one on the spectrum. Or my other two brothers who are in general awesome supportive uncles.



lady_katie
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08 Oct 2012, 3:02 pm

Thanks for all of the responses, I'm so glad to hear that people generally feel that distance from unsupportive relatives is helpful (since we want to move far far away from ours for many reasons).

My sister in law *tried* to be supportive last night, in a back handed sort of way. In so many words she said, "I'm sorry that you guys are feeling so alone and without support,, I probably came off like I thought that you were over reacting before, but the truth is that while I do feel that your over reacting, I do support you getting everyone assessed because then you can know for sure that you are over reacting and put your minds at ease". (paraphrased)

Yep, that pretty much pushed me from feeling like I desperately want support from friends and family to feeling like I am far better off without them!



whirlingmind
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08 Oct 2012, 4:25 pm

lady_katie wrote:
My husband and I along with our toddler are all in the process of being assessed and diagnosed. This is a very difficult and overwhelming time for us, so we naturally turned to our friends and family for support. Instead of meeting us with open arms, they've responded with hostility. My sisters in law haven't spoken to me in months (after patronizing us with false information about chromosomes and genetics), their mother compared it to the 'over-diagnosis of ADD' and said something about not believing in western medicine, and everyone else stuck their heads in the sand. My closest friend also stopped talking to me months ago. However, my own mother, who is so crazy that I don't want her involved at all, cannot seem to butt out, despite the fact that I asked her over and over again for some space. I'm 99% positive that she's trying to weasel her way into our house so that she can try to cast the devils out of us. That's really the last thing I need right now.

So, we've found ourselves completely alone, and I honestly don't know which feels worse - the stress of what we're dealing with, or knowing that we've been abandoned by our loved ones in our time of need.


Just wanted to let you know that I totally understand how you feel. Myself and my two daughters are also in the same situation as you starting assessments. Dealing with the stress of that, coupled with my youngest daughter's awful behaviour has pushed me to the brink. It is an awful time.


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DX AS & both daughters on the autistic spectrum


lady_katie
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08 Oct 2012, 5:22 pm

whirlingmind wrote:

Just wanted to let you know that I totally understand how you feel. Myself and my two daughters are also in the same situation as you starting assessments. Dealing with the stress of that, coupled with my youngest daughter's awful behaviour has pushed me to the brink. It is an awful time.


Thanks, me too! It got so bad that I put my son in daycare for 4 hours a day. We absolutely cannot afford to pay for daycare so I'm doing everything that I can to make a buck here and there because it's the only thing that will give me a "break" (more like a change of pace) and allow me to [sort of] function enough to make thought out decisions about how to handle things. There are just no good options and I feel like I'm constantly choosing between "bad" and "worse".



kalor
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08 Oct 2012, 6:20 pm

The immediate response we got from one side of the family was "Well, it's not from OUR side of the family!"
The response from the other side was "Oh" (return to watching sport on TV).

I have a couple of stories I tell to help teachers and family "get it", and I keep pointing out our son's perspective. After enough instances (and a period, naturally, of believing I'm making excuses), people start to see that there are others that think differently than they do.

That child is not being rebellious in class and disrupting the writing lesson by writing gibberish, he's trying his hardest to "make up your own words" like you said.
When the karate teacher steps back saying "okay, we're going to step back and block..." and one kid in the whole dojo doesn't step back with the rest, it's because the teacher said We're GOING to step back. Everyone else inferred from the movement that we now ARE stepping back. That's a non-verbal cue.

After about two years of this, one side of the family (the side we actually see) saw that it wasn't our parenting, it was a neurological difference. After another year or so, they started to see how the implications of that placed a huge strain our every aspect of our lives. Just now they're starting to step up and help us. It can happen.



spectrummom
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08 Oct 2012, 7:27 pm

So sorry this is happening. Would be bad enough for this to happen with your family, but your best friend too? Geeesh

We also have some closes relatives that don't accept the diagnosis. I find it very perplexing and stressful, but my husband points out that it doesn't really matter what they think. They're his parents so I follow his lead, but I do avoid the topic with them. They have expressed many times that they think our doctor diagnosed just to get the follow up visits and he MUST be getting kickbacks from the OT. They've also blamed "the way we relate to him" for his "psychological problems." Some people say that it will take them time to adjust to the info and learn about ASD, but its been 6 years -- exactly how long is this going to take LOL?

My husband thinks this will not interfere with their ability to be loving grandparents, but I liken it to telling someone, "I like you, but I don't like that you're a woman (or man) so I'm going to pretend you're a man (or woman) and treat you as if you are." Lucky for us they live about 1,000 miles away and we only talk to them once a week.