Do Family And Friends Accept It

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Pook
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26 Jan 2011, 6:53 pm

I am having problems with family especially accepting that our kid has meltdowns and some behavioral issues. I guess it shouldn't be suprising as dh could barely admit it to himself until lately that her behavior can be crazy when she gets wound up for whatever reason that sparked the meltdown. It seems they feel that I am blowing the behavior out of proportion sometimes and it is only child behavior and no big deal. But my sister did recently say to me that we need to be better able to manage these meltdowns or they will continue or instensify.

I love that they don't want to label our kid, but sometimes it borders on denial. And standing up for her when she is in trouble only creates more problems for us. How do you other parents handle this???



CarSeatMommaTo2
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26 Jan 2011, 8:48 pm

Pook, I completely feel your pain. My family has it in their head that if we could just get our 4 year old talking, then he'd be a "normal" kid. They don't get it, they don't want to get it. My inlaws are embarrassed every time I mention the word "Autism".

I can't tell you the answer, but I can tell you you're not alone in this feeling. I constantly battle with my family.

(((((Hugs))))))



Peko
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26 Jan 2011, 9:52 pm

Unfortunately, from what I can tell you just have to deal with denial :(


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aann
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28 Jan 2011, 7:19 am

I think it takes time for most to accept the diagnosis enough to want to learn about it and then be more helpful than not. I say, take care of yourself. On balance, spend more time with people (even here!) who are more accepting and understanding than w/ relatives who are in denial. Then give them time to observe what you are up against. You will also need to model proper approaches to your child so that the relatives can learn from you. If the relatives are decent people, they should come around and be supportive.

In our case, we always knew something was up with our son but were waiting for the "right time" to get him checked out. Meanwhile, my son's worst behaviors came out when he was with our families. I had to endure the confusing and negative comments and do the best I could. Once he was diagnosed and I learned a few things, I sent out an email as to what my son was experiencing and what would be helpful and what would not. Worked well for me. If you feel you need to stay away from the AS label, I used the term "highly sensitive" for quite a while. I still do.

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bookworm285
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30 Jan 2011, 3:17 pm

My parents never admitted/realized that my children have ASD issues. Now they're 18 and 21, and overall ok. But at a young age, the worst tantrums would be at my parents house. What made it worse was that we were a military family and only got to spend a week out of a year there, if that.

It was a horrible experience. My parents solution was to "spank them more" I tried, didn't work!

If I had to do it all over again, I would have blamed it on "sensory issues" which my parents would have accepted.



Countess
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31 Jan 2011, 10:24 pm

I prepare my family beforehand with a list of his triggers and how he may or may not react, along with the disclaimer "sometimes we just have to let him fall apart". This worked well for us, but I also mentioned that I knew that many of the things I did with my son were not age appropriate and/or were things he should be capable of and that I really wasn't interested in hearing about it. People just have to trust that I know what I am doing.

NEVER defend your child in front of other adults but in rare circumstances. If someone hits your kid (or something similar), by all means rip their heads off with the child present. Not for something like this. The best way to correct behavior issues is with a unified front. Along that vein, I would ask family to refrain from saying anything critical about what she's doing until she is not present. That's my 2 cents anyway.



spectrummom
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03 Feb 2011, 11:10 am

Yes, this is my biggest issue with my in-laws. In general, they are loving and supportive but when it comes to DS they are all denial. At first we thought it was because they were so "old school" that they thought autism meant a kid sitting in the corner banging his head against the wall. However, it's been 4 years now (he's 7, diagnosed at 3) and there's been plenty of time to learn and accept. DS now does fine with them but for a while it was really rough every time we saw them. They blamed his behavior on "how his parents relate to him" (and didn't understand why I found that offensive) and anger issues requiring a child psychologist and talk therapy. Yeah, for a kid with speech problems, sounds like a good idea :lol:

Lucky for us, DS is very borderline and many people who aren't around kids alot do not detect his issues. Also, he tends to do far better with adults than with peers, typical spectrum stuff. So it's really easy for them to ignore stuff and say we are blowing it out of proportion, all kids do that, etc. They even went so far as to tell us that our experts (multiple drs, therapists, etc) told us he has ASD so we would keep going appointments and therefore improve their businesses. FIL was a Dr. before he retired -- I wonder if he ran his busines that way? The most frustrating thing to me is that when he makes progress in speech or OT they say it's because he's older and more mature than he was and totally discount all the work we put in to therapies.

I've come to the point where I just don't go there with them. I've tried explaining, sending articles, referring to our specialists, etc, and I just get no where. So I avoid the topic when I can and leave the room if I must. If questioned directly, I gloss it over which I'm sure strenthgens their skepticism but I can no longer put myself out there to be knocked down by their denial. I wish they would make an effort and try to support us, but everyone else in his family (and mine) does, so ulitmately it would be great for DH to have that support.

Good luck. A good therapist (for me) has helped a lot.



TheKingsRaven
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04 Feb 2011, 9:26 am

My family accepted my dx since before I was old enough to realise there was such a thing as AS. It might have helped that I'm the second generation in my family: My Uncle has a sevear case, he can't even speak, I'm a mild case myself.



azurecrayon
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04 Feb 2011, 11:13 am

in regards to our youngest, we are seeing general acceptance for the autism diagnosis, but then denial about certain aspects. things like the school social worker questioning us about the methods we've tried to use to potty train him, and suggesting things that totally dont work for autistic children. or him not being allowed to sleep over at his aunts house because he isnt potty trained and she cant deal with diapers. the potty training aspect seems to be the biggest issue, people expect because he is very verbal and highly intelligent, that he should be potty trained, and dont accept that those things can co-exist in one body.

my SO has had 2 appts and has 1 more to go with the neuropsych, and then he will have his official diagnosis. i am seeing even more denial in regards to him. he has classic autism too, and severe social anxiety. this greatly impacts his ability to get and maintain employment. he has been doing some part time cleaning work for my sister the past few years, and she has taken some of the projects he was doing away from him because of what we now understand are deficits from the autism, and yet she has commented to me that he should be able to "go out and get a job." due to having survived to 39 undiagnosed and having a family and being an obviously intelligent man, these deficits he has arent seen as "real". he has learned to mask them so well, people just dont believe the deficits exist.

some people just wont accept it, thats the way they are. there are those that i dont even mention the word autism to, such as my co-worker who believes my sons autism is caused by lax parenting, and that my SO is just lazy. if we just disciplined our son more, he wouldnt have these autistic behaviors. these people arent even worth talking to about it.


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partner to: D - 40 yrs med dx classic autism
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K - 6 yrs med/school dx classic autism
C - 8 yrs NT
N - 15 yrs school dx AS


missykrissy
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04 Feb 2011, 9:11 pm

while my family accepts my children's diagnosis' they don't necessarily accept the children. i have 2 on the spectrum and 1 in the process of being diagnosed with something, possibly AS or ADHD along with a baby. we have been told by some that we are more than welcome to visit providing we don't bring 'them'. others will welcome all but my 5yo who tends to meltdown and destroy things reliably at other peoples houses. my mother kicked us out last time we went to visit because the 5yo annoyed her too much, apparently my 11yo old is whiny and my 4yo doesn't listen while the baby apparently hates everyone but me. so basically yes, they accept that there are problems but at the same time chose to step away from the problems and disconnect instead of being a support..



DW_a_mom
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05 Feb 2011, 1:53 pm

I think I've been really lucky with my family, but even then it wasn't an instant, "oh, wow, now I see what you are saying!" They were just tactful enough to keep most of it to themselves, but I could tell they didn't really believe it. So, I planted the seed and quietly noted what to do or how certain concepts applied when it was appropriate to do so, and spent a lot of time saying "I'm not sure that applies but I'll think about it" when they would come up with ideas or make suggestions. Over time, as they saw things improve in our family because of this new information, and perhaps did their own reading and talking, they seemed to absorb it. Now I'm hearing them all talking about which parts of themselves may be AS genes since it runs in families! People truly do need to absorb information in their own time and their own way.


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y-pod
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09 Feb 2011, 8:08 pm

I think our family and friends pretend to understand, because they're all well educated, nice people who don't want to appear narrow-minded. Deep down they probably still think we should just use more discipline. I don't think they really understand. If we talk about autism for more than a minute their eyes start to look unfocused. :D That's OK for me. I don't expect them to really understand unless they really want to. Pretending to be nice is good enough.



aurea
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12 Feb 2011, 3:17 pm

My 12 year old son got his asperger's dx when he was 8, my niece's son who is a year younger got his pdd-nos dx when he was a toddler. So for a few years half my family would compare the two boys, and I would constantly hear what myniece was doing with my great nephew and how I should do that with my son, and what a great mother she was because he is advancing and is no longer doing what I'm telling them my kid is now doing. Frustrating big time!! ! The other half of my family dealt with it by denying it to start with, I was told that's "normal", just tell him to "pull his head in" , so not helpful. It has taken the last few years for both halves of my small family to come to terms with it and now be supportive. They are no where near as supportive as I would like, but they are now better than I expected. :) It helped that the half of my family that were in denial (my oldest sister) has a younger child, and as her child has grown and matured socially and emotionally at a normal rate he has become a good friend to my son (5 years his senior) Both boys are in a lot of ways now at the same level, all though the younger one is socially much more advanced. My sister actually said to me a while back, "what are we going to do when Jake out grows James?" Jake is my 7 year old nephew James is my 12 year old son. Thank goodness this hasn't happened yet, I'm not sure that it will ever be a big problem either. Jake seams to get James and is very protective of him and gets that he needs time out, gets that he struggles in crowds, gets that he likes to talk computers etc etc. My nephew wanted 2 parties for his birthday, one at a noisy play center with his school friends and one at home with just him and James, he was so worried that James wouldn't cope at the play center with all the other kids, but he really wanted to share his birthday with him. :)
Jake actually told my sister that he wanted Aspergers to because it makes you good at games and computers. :)



Pook
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21 Feb 2011, 10:31 am

Aurea that is so sweet he was so considerate of your son that he wanted a second birthday party for just the 2 of the. :D You should be proud of both of them.

Whew today my kid had a meltdown this morning getting ready for school. Dh and I are ready to take the door off the hinges last nite for all the slamming ect she has done for years. And at 5 consequences need to match the actions. When they do that it is so draining and time consuming and it's difficult to hold on to your anger as here is this little halfpint telling you such and such and controling the situation. I want to look more into some behavorial techniques I've been told about.

Hats off to the parents here that have more then one child and or hold down jobs to boot. Ya'll deserve a medal. How do you do it and remain sane:lol:

Btw I'm sorry your brother is going through that as I do myself. I have a degree, but have never worked a job that paid more then a pittance per hour. Dh and my family would say do xxx, but thankfully they've finally given up as they see that it is my decision not too eventhough we could definetly use the money. No one knows what another goes through till they face the situation and struggles themselves so I realise most people probably look at me like she's lazy ect. But they know nothing of how much it takes for me to only socialize the little I do as I wasn't born with the skills and neurological wiring that NTs were given. NTs most of socializing comes naturally, but for some of us it is hard exhausting work just to maintain status quo the best we can.