"I guess you get used it to it after a while. But- just think if one of our children had leukemia there would an outpouring of sympathy, support and understanding. That makes me mad sometimes!"
I have often thought the same thing myself! There have been very few people, other than other parents of kids with autism, who have come close to understanding what it is like to have a kid with autism. And that includes family members.
I really think it's because people just have very little understanding of what autism even is, they just don't know how to relate to it, and makes it hard for them to empathize, or even sympathize. I just don't expect much from other people any more.
Sallys,
I have to agree with Joe's Mom here. I think it can be just plain old human error that she forgot that you were on the phone. Also her lack in response may be due to the fact that she was aware of all the evaluations etc and was familiar and maybe expected for you to get some form of diagnosis. Also she may react to the way you are or have been in the past. For instance...if you have EVER come across as super strong, mom that doesn't want any sympathy from anyone etc.....she would remember that and not react. I know that there are times where I probably show different emotions about my son to my sister....some days i am super strong mom and others I feel so weak and want someone to say it will all be ok. I would let this one blow over. A lot of times especially when we first get that final diagnosis we are very changing in our reactions and feelings for a while. Right now i'm sure that you want everyone to say the exact right thing for what ever emotion you may be feeling...(I know i did anyway)....but I learned that you can't have those expectations of people. Take care,
Karrie
okay, I hear what you're saying. Thanks for the honest feedback!I know what you mean. When I told my Friend ( we've known each other since we were 5) that DS had autism- she replied "He seemed okay to me" Okay , she lives across the country and has only seen him once for a few hours when he was 15 months old. Then I went on the explain how hard things have been : I've had to cut back to part time, coordinate ABA and other therapies. Her only reply was "Well, it seems like you've got things under control. He's going to be fine." I'm not sure why she down-played everything. Maybe that's what she thought I wanted. Mostly it was probably that she didn't know what Autism was and she was uncomfortable with it all.I just had to post about this very strange experience I had telling a friend about my dd's newly dxed pdd-nos. I wasn't really planning on telling people or making some big announcement, more just doing it on a need to know basis. I need time for it to sink in and process it and live with it for awhile before I start sharing it with others and all their questions, disbelief, etc. I hate that feeling of having to justify the dx (i had a lot of experience with people's reactions to things lately while going through some fertility issues, I know they mean well but can say some really thoughtless or ignorant things that really hurt, especially because you are already vulnerable and sensitive about it all).
But I did tell a friend yesterday because she's been with me through this from my first vague wonderings almost a year ago to this most recent 3 or 4 months of intense worry and evaluation process. Now when I say "with me" I just mean she's been more or less in the loop as we don't talk very much and see each other even less. But we're still good friend that go back 14 years or so.
The weird thing is that her first grader is having "issues" and lots of trouble in school and has always been "difficult" and we talk about that (him) a lot and what to do and how to cope. We also felt like we both know what it means to have a child who requires "more" even though they're different ages/issues. She came to me upset when the school was trying to say her son has asperger's. I did research for her, got info from parents with asperger's, and got her a book and basically helped her through it (his psych said no, it wasn't) - this was a few months before I started really really wondering about my own dd.
So, that's a little background to kind of paint the picture that this is someone who would have a little taste of what it's like to be in my shoes, wondering what's wrong with dd. I told her the dx, she asked a lot of questions (which always makes me feel defensive, like I have to justify, but I know is just people meaning well) and it was fine but right in the middle of it (telling her about dd's dx!!!), she put me on hold to take another call..........and never came back!!!
I waited, waited, waited. Then, I called her back (I was a little worried about what might have come up) and she answered and said, I kid you not, "Oh, I forgot! I got distracted by this and that and this and that. I was here making dinner and thinking about you and I just thought we were all done talking (I was mid-sentence when SHE got another call). I guess it was just mommy mush!" I was so flabbergasted I blurted out "I was in the middle of telling you my kid has autism! What do you mean you forgot???" She never apologized or explained, just said she "forgot". After that obviously I didn't want talk about it with her and we talked about some other stuff for awhile and then dd pulled the curtain rod and curtains out of the wall (GOD BLESS HER) so I have get off the phone!!!!! She just said, "next time we talk, we'll have to plan to pick a date to get together". Nothing else of comfort or even just acknowledgement. Oh and she also asked if the doc said it was because of the antiepileptic medication I have to take (and had to take throughout pregnancy and breastfeeding). I know it was just a question, but it made me feel like I was getting blamed.
I know from past experiences (with fertility) it's going to be tough talking to some people about this, but I never expected it from her. I helped HER through an autisim "scare" with her son!!!!!!!! I guess I'm just wondering if this is a typical reaction? I can see where people wouldn't know what to say, but to actually forget they're talking to you? Is pdd really THAT scary and taboo????
My best friend has been with me through all this and great. She just agrees with where ever I'm at and supports me emotionally so I do have that. I know my family's reactions will be less than stellar in that then that is ALL they will see about dd (and this I know because my 16 year old neice has asperger's). It breaks my heart to think of people shying away or being afraid of dd because of pdd-nos. The neuro told me that the hardest part would be watching how the other kids pick up on her not being "normal" and pick on her, he said it's brutal and it's going to kill me (which was a really nice, understanding, supportive thing for a doctor be telling the parent!!). I told him it already happens in preschool. She gets laughed at and made fun of (but then there are also those really sweet kids who befriend her. There are always good people -kids and adults).
But I didn't expect it to really happen among the adults too or to me for being a parent of a kid with pdd. I mean she didn't laugh at me, but it sure felt like I was being shunned. It's not CONTAGIOUS for crying out loud!! Am I overreacting to one bad reaction? What has been your general reception and reaction when you "go public"? Do you even need to with HF, mild pdd-nos? Does the label of pdd then come to define your child in everyone's eyes. I can't stand that idea.
Thanks for listening!
Sallys I have to say that while I agree with you that it might have been nice for her to ask you how you felt about getting this diagnosis and what were your plans etc...be carefull what you expect from people..This whole experience has been a real eye opener for me with regards to people's reactioons, they come in all shapes, sizes, and strangeness! Some people say the darndest things and some dont know what to say at all. I dont have an official DX yet but still when I talk about him or people ask me why he is behaving this way or that, I sometimes get taken by surprise. Also, I keep forgetting people on the call waiting thing ALL THE TIME. I have become very distracted and forgetful this past year. Granted what you were telling her was important but it has happened to me. Cheer up sweetie, we are all here for you and dont worry about her reaction too much..just roll with the punches...My parents think there is nothing wrong with him and he's just a little behind which really frustrates me because it's like they think I'm over-reacting. My in-laws are another story. They are from Greece, used to live in a village and rode donkeys and everything. Their way of thinking is just odd to me sometimes, like they were against me getting an epidural when I gave birth because I had to "feel the pain" in order to truly love my child. Well, my ds was born with neurological defects and they act like it was something that I did wrong. I'm sure if I came to them with a ASD dx, they would possibly be embarrassed of him, and would probably just write him off like he's not worth talking to or playing with. Actually, they treat him that way now as they brag about their "really smart" nephew they just vistited in Greece who is the same age as my ds. Grrrrr. I find myself resenting a child that I don't even know. It doesn't matter if I bring up all the things Noah CAN do, like READ, all they can focus on are the things he CAN'T do. I find myself thinking "can this kid from Greece READ and SPELL and COUNT and COUNT BACKWARDS? I don't think so". It's a shame that we have to put up with this ignorance.
Sally,
My experiences are unbelievable, i had a psychiatrist tell me my son was labeled autistic because of me, that i didn't spend enough time with him, told me to quit my job and college and attend to him. I had alot of family members ignore my son when hes in the room, my own family staring at him like hes an alien, I learn how to ignore everyone, i do was best for my son, everyone wants to be quick to critize meanwhile they not in your situation. They don't know what is like to take care of a 6 yr old nonverbal autistic boy. I ignore everyone if they don't like what my son is doing and have the nerves to say something, i start wishing he acts up even more
Cari I can relate to all your comments ! My family still don't believe my 3 yr. old is autistic they tell me he's nothing like matthew (my 8 yr. old autistic son) They will play , interact with my 3 yr. old and totally ignore my 8 yr. old. Over the 4th we have a family get together every year well this year i made sure matthew stood out (did everything with him) just so my family would see he is a kid just like any other kid !!! They only have to say is kris we don't know how you do it !! I'm so sick of hearing that !!! If they would only help me or babysit once in awhile or even sit down and read a book to my children they would know how tuff it really is then they would not ask How do you do it? THanks for leting me vent !! Hey all been eavesdroping for a while . my little one is 4 and dx by his psychiatrist as pdd, add and odd. talk about a mouthful. before he was dx and before his first daycare expulsion a parent whose name and face I don't know actually got in my son's face because he pushed her daughter and told him to, "keep his hands to himself" the only upshot to that event is that the "teacher" intercede and told the parent she was out of line. He is sooo much better now with his preschool with an IEP and meds. I am so happy he is in a good school system with caring TEACHERS. mikki Mikki, Welcome to the board!! I have a 3 year old with PDD-NOS. So glad to hear that your son is in preschool now with an IEP. I'm sure that it is a relief now that he is with educators that understand and are able to help. My son will be starting preschool in Aug and even though I am nervous about him being gone all day for 5 days a week, I know that he needs it and am excited to see the progress he can make in a structured setting. Take care...Hope to hear more from you soon. Karrie Hi Sally's I have a friend who thinks that my son who has a dx of PDD_NOS with autistic features, is fine and does not have a developmental disorder at all......very frustrating....... She used to ask me the same questions over and over again when we would get together with our kids. It was really getting on my nerves, so the last time that we got together I told her that I wont discuss it with him around because he might get upset and she finally dropped the issueafter a few more questions about him getting upset about things. Ang ((((Sally)))) I think we all have probably dealt w/ that kind of response...and no matter how much it really is human nature...it still sucks! LOL...it just does...I know that I would be a very sympathetic ear, and I would have been that way and have been that way even before my son was dx...but not everyone is and having a child w/ ASD you find that out fast...its sad... BUT BUT BUT there are also soooo many wonderful, understanding people that you will meet too and that helps me feel sane and comforted...I have little by little kind of grown apart from those uninterested or horrified friends because, really we have grown apart, my son as pdd/nos and their children do not...we are invited to bday parties and its obvious he different and people get uncomfortable and I will not have my guy pitied or shunned so I stay away....I have a few....well actually many wonderful people in my life now that not only understand but want to get involved in my childs life...get right in his face and talk to him when we visit not just pat his head because he doens't look at them...they tell me "he just counted to ten for me!" with as much excitement as I would have and you know what hon...those are the friends I want in my life. I'm not blaming people for not knowing what to say or how to act...like, "he's 4 and STILL not potty trained?" grrr, but you have to laugh they have no clue LOL...yup, I wanna say, beat that! LOL You are right this is the place to be for sure! I love this board...I wish we could just move right into our own little community...couldn't ask for better neighbors LOL... take care! Ali I also feel really confused by the reactions of some of my relatives. They do try to downplay it. I don't know why. Maybe it's a form of denial and they can't handle the idea. I almost get the feeling that they don't want to invest the energy. My daughter was diagnosed with PDD-NOS over a year ago and has improved a lot in eye contact, in interacting with people, and with her use of language. People who haven't seen her for a while suddenly see a great change, and they they conclude that all this time I have been exaggerating her difficulties, that she would have improved with just regular schooling, even without therapy. I also feel that I have to justify the diagnosis. It's very irritating that while I have to struggle to manage with her tantrums, language problems, feeding problems, sleep problems, etc., at the same time some relatives tell me that those problems really don't exist, that they're not that bad and I am exaggerating them (for attention, or something, which would be a hideously evil thing to do), that "all kids do that," or that I am even responsible for them. I'm sorry for your friend's weird reaction, sallys. Maybe it was a momentary awkwardness, and if you give her more opportunities, she'll figure out how to show her concern. It might be harder for her to deal with your situation than it was for you to deal with her potential one. People have different strengths, and show them in different ways and at different rates. I hope this wasn't too rambly. Thanks for the opportunity to vent. Living in the same community and being neighbors.................... Can you imagine? Instead of when our kid tantrums and everyone stares and people make bnasty comments and call the cops because it happens during the night or social services because they think we are abusive............. SUPPORT ............ neighbors walk out and offer to help or to take the other kids so you can focus and deal And actually having neighbors who UNDERSTAND and CARE - wow - that would be something I understand the feeling of other people, and friends. They know what your child has, but dont really get it. They do not know the hard work we have to do with our children on a daily basis. But I must say, it does not bother me to the point were I get upset. I do what I have to do to make my child better, and what anyone else thinks is their doing. My energy is limited, and the best advice I can give any mother is " Stay focused on what is important, your child" Does it really matter what a friend or stranger may think, at the end of the day we all have are issues to deal with. If you have a friend that is really there for you thats great, but if not, then seek and you will find, there are alot of orginization out there, and of course right here. We are all here for each other which is a great support system. My ds hasn't been dx'd yet. But when I talk about any concerns, probs, or worries most people I know downplay it like I'm being overly concerned about nothing. My BIL who is living w/ us is great. He loves my dd and ds to death, but he is among the rest of dh's fam and some of mine that think Aiden is "just fine." He's just behind or shy or being a normal little silly boy or whatever. They can't see the strange things somehow. BIL even thinks I am spoiling him and ds just needs some good discipline and spankings. Now ds is not severe or obvious. So I can understand how many may not see it. And he does have eye contact and is social w/ certain people and even many adults. He even tends to like approaching strange men. The other day he actually was trying to interact w/ one of his little 3 1/2 yr old cousins who came over. She didn't want much to do with him though so he went on and ignored her the rest of the time, but I was amazed that he even went up to her and was babbling at her and getting right up in her face, almost uncomfortably close. It was like he was trying to inspect her face lol. Anyway, I guess what I'm getting at is sometimes they do seem quite normal. Even my ds seems ok to me many times which confuses me and I'm the one who understands his issues. So it makes me understand how others can doubt or not "get it." But it is hard when they say confusing or hurtful things to you. I would just say that she was dx'd by a professional in the field of this disorder and if they want more info to contact him (for close family). Don't waste too much time on those that just want to make this harder for you by justifying it all. I think it's great you know what you are working w/ now and can relax it that respect. Good luck. Amber I'm new but I too have had some very odd responses. Some family members have acted almost like I was looking for a problem with Nate, which is very frustrating. I've gotten the "he seems so normal!" response to which I reply "Well, he is. It just depends on your definition of the word 'normal'." I do a bit of public speaking and during the whole diagnosis period I had a speaking engagement about having passion as a mother. I did share that we were going through this process which I don't think was a big mistake because people need to know that asd is all around us. Many people were great about it. Some, however, were not and continue to be strange. If I should happen to run into them they want the low-down. I spoke in very generalized terms, they want the nitty gritty details. I almost feel like some sort of science experiment to them, very uncomfortable. I've also turned down a speaking opportunity since then and it was immediately assumed that it was because of Nate, which it wasn't. Then I just got pity which I abhor because they don't know what they're talking about. Then I accepted an opportunity which will involve travel for July and, what do you know, I got condemnation. How could I possibly leave my son??? Well, this is our life, this is what I do and I know that he will be okay, I think I'm sane enough still to handle these decisions... Though I suppose sanity is a matter of definition too, lol. Sometimes people are very uncomfortable with the diagnosis, don't know what to say and just plain ol' say the wrong thing. For a long time, way before diagnosis, I adopted this philosophy: I am responsible for the words that I say and the manner in which I say them. I am not responsible for the manner in which you choose to receive them. I wish more people would think about their end of responsibility before they comment on my son. And I suppose I should think more about my end of it, being responsible for the manner in which I receive their words. That can be the harder end of the deal sometimes.
Anyway, b/c my DH was unable to attend, my mother came. Later
that day she told me that "the dr is wrong" and that my ds will be fine
after his speech therapy and his speech is only delayed b/c he has
tubes in his ears from ear infections. Then my step dad told me
"the dr is wrong" that our son is fine and that they have never seen
any abnormal behavior. Mind you my step dad's only experience w/
children is my children, he never raised "kids" so how would he know
what is "normal"? After much convincing, citing examples, and
justifying my mom now says she should have seen the signs and that it
all makes sense. My mom seems to be on the same roller coaster of
emotions that we are. My step dad is still in the dark.
My DH's family is of the mindset for any issue if you just ignore it
and don't talk about it, it will all just go away. We have only
told my MIL and her reaction was "oh, ok keep us informed..." She
honestly reacted the same way she would if we said he had a cold.
Fortunately though we have several great people in our lives who will
be a great support group. Two friends of mine are speech
therapists. They are pulling together information for me and told
me if I have any questions about anything to call them. One said
to me "oh I had no idea you were going through all this. If there
is anything I can do let me know." It was truly just the
"perfect" thing to say. A friend of mine is a special ed teacher
her best friend's son has pdd-nos. She called her friend, and
then the friend called me. From across the country a complete
stranger called me to talk to me about what's going on. She's
pulling her resources together for me. My dad works w/ children's
services (in a different state) but has some experience w/ it and was
very supportive. My step mom said "I have a feeling when this is
all over and done with we will all be much more educated. I know
we will get through this. Whatever we can do let us know."
Again, the "perfect" words! My DH's stepmom's best friend runs a
school for children w/ "special needs". She's going to call her
today and get as much information as she can and then get back w/
us.
I'm the president of my MOMS Club. I told a few of my closest
friends and they have all volunteered to help watch my other 2 children
while I'm at appts and offered support in whatever other way we could
use. They told me if I need to just get away or go out to call
b/c us moms need to take care of ourselves too!
We told our son's Godfather yesterday at church. I told him how
we just have so many different emotions and that we just aren't ready
to tell anyone in that circle of friends. He said "I don't blame
you. Most people when you say autism think 'Rain Man' and that
people just aren't educated." We talked about how there is a
whole range across the spectrum and how some people are very mild and
others more severe, and that we won't know where our son is until we do
further tests. He then went on to say he can't imagine how hard
it must be and that whatever they can do just let us know.
I know we are very very fortunate for the support group we have so
far. Finding you all is another blessing for us! We're very
careful who we have told thus far and we've told all that we are going
to tell at this point. Luckily we have a very great support group
in all that we have told. I hope in time those who have not
reacted favorably will come around. In the meantime I'm just
thankful for a referral to get the dx and that we are going to get
help. DS is only 2.5 so from what I've been told we're lucky to
get the referral so early.
Thanks for listening. I already feel so welcome from you all!
Christie
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