Hi everyone,
Though I am still very much in the 'why me' /'I hate it all'/ 'i just want out' stage, a teeny tiny part of me wants to attempt to see things differently ...
My big question - should I make a formal announcement of the diagnosis to the zillion ppl I call friends when maybe 5 of them really know what's been bothering me the last couple of months?? Does anyone have to know? Would my dd be looked upon as the child noone wants to have over afraid that her tantrums are 'bad nfluence' on their children? What happens when she tunes out in a public place ? Do I need to make it know that she has a condition?
I am not ashamed - am DEFINETELY saddenned , feel like all my aspirations/hopes/dreams just crubmled but am in no way ashamed of my dd..she is still the little cupckae she always was ( and she was always a bit annoying!!! - the diagnosis didn't make her any more or less of what she already was to me.
Also now that I am "trying" to think clearly, I rem'ber the neuro said 'PDD' to me but the prescription he wrote up so that we would get therapy started reads 'autism'.. i know its all on the spectrum.. but ???
How old is she?
I would definitely give it time ... ME, who tells anyone who calls -- and then busts into tears! Cannot take my own advice, mutter, mutter.
But I would take into consideration individuals' ages, and attitudes, and how THEIR reaction might affect YOU, at this point post-dx. I have struggled with that, as well.
OTOH, it can be somewhat cathartic to tell people.
I am a blabber mouth!
As for my friends kids, I have explained autism to a few of the older girls we see alot. They are all sweethearts and want to help Morgan have fun when we are around them. Some of the kids in my girl scout troop hav asked about DD's odd behavoirs and I have told them that sometimes DD has a hard time understanding what is going on and needs a little extra help. They are all ages 6&7, and very sweet kids. I think it helps teach them tolerance, empathy, etc.
Making it known about your childs special needs in public is totally up to you and what situation you are in. I don't tell people unless something happens. If DD is trying to talk to someone and they have no clue what she is saying, I just say your a silly girl and we go on our way. If she is having a meltdown, and people are looking, I will explain she has autism, please move away from us while we leave. I have also had people make rude comments to us because DD is meowing at people, or growling, etc when they are too close, try to touch her, etc. I tell them her disability is not physical, its an incurable nuerological disease, would you treat a child in a wheel chair the same way? That usually takes care of the problem. If someone tries to joke with her, she gets upset. She only see's things in black and white, no grey in between. Recently a cashier at the grocery made a silly joke, he was trying to be a nice guy. DD got really upset. I explained she is autistic and doesn't understand joking or sarcasm. He was very sweet and now when we go through his line he smiles and talks to her about school, the weather, what we are buying, etc. Its nice when people make the extra effort. So do what feels ok with you. Sorry for the long post, I tend to talk alot on this subject, lol.
Everyone here is amazing. Please feel free to share, we can certianly relate!
How, when and if you tell people is a very personal decision. I don't think anyone HAS to know anything.
Here's one approach to think about. If, over the past few months your worry over your daugher has caused your own behavior to change in a way that might be misinterpreted by your friends and impact your friendships, then you might want to send out an email to the tone of "hey, I know I haven't been myself lately and I want to apologize if I've been pretty moody. I recently found out my daughter has autism and it's been a difficult time for me. I am confident that things are going to be fine for us, but I just want to apologize if I indavertently hurt anyone's feelings." For other folks, I'd just deal with it if it comes up. For example, I went to 2 birthday parties with C and spent the entire time chatting with other moms and C's autism never came up. He was acting like all of the other kids so there was no need. At a 3rd party, C became very disregulated and some of these well meaning moms tried to approach him with the soft "it's ok honey" mommy voice, which is NOT the approach to use with C when he is in meltdown mode. After I asked a few folks to step away and to please not talk to him, dragged him off over my shoulder to a quiet place, got him calm, and then rejoined the mom group, I then chose to explain that C has autism. They were all suprised, but very understanding and asked good questions. I have never felt ostracised because of it. I'm almost embarressed now because I feel the other moms go out of their way to treat C extra nice, and they get more upset than normal if one of their kids behaves badly to C.
One thing I do think is important is that anyone who is going to have any responsiblitiy for your child at any time needs to know, even if you are there. Anytime I sign C up for a class/sport (gymnastics, t-ball, etc.) I have a letter modify that explains about C, his autism, and how his autism might impact his participation in this particular activity and I give it to the teacher/coach either beforehand or on the 1st day. If C is going to go to another child's house for a playdate, I make sure the other child's parents are aware of his autism. When I drop him at the child care area of my health club, I give a letter to whoever is working that day. I've found the response to this to be universally positive. No one has ever shied away from C because of it. I get told all the time that they wish more parents would be upfront about things like this.
As I said at the beginning, it's a very personal decision and you have to do what feels right for you. Best wishes and good luck!
I wouldn't make an announcement, unless you feel that it would bring you more support of the right kind or if you want to spread the word about autism in general (both legitimate desires).
It's okay to share the diagnosis on a need-to-know basis. Like, you wouldn't announce to the world that your child has allergies, just mention it when you're visiting someone who has a cat.
It took me about a year to come to terms with the diagnosis, and I felt tired a lot. The diagnosis did, however, help me understand my son a lot better, and learn to manage his behavior better. Life does get better. Hang in there.
Rita,
I think it's kinda soon to be dealing with how others around you will take the news. You have just learned of this yourself, and are still in the phase of coping with the shock of it all. For right now just deal with the people closest to you and the ones that have been most understanding BEFORE the diagnosis. A true friend accepts you (and your children) no matter what, and welcome you with open arms if you needed help. Now with that in mind, I would give it a few weeks, then weed out the ones you don't feel you owe an explaination. My mother was the first person I told. We cried on the phone together, and then she picked me up from the doctors office. The word got around quickly, and over time the rest of the gang found out. Still to this day I have a hard time telling strangers that my child is autistic. Many don't even know what it means.
[QUOTE=HopeMommy1981]
What i mean to say is, you should tell all of them because at the end you will find out who your REAL friends are, and they will be more precious to you than you may have thought before.
[/QUOTE]
As I was reading the posts and thinking of how I would respond I came across this quote...My thought was...Tell your family and close friends if and when you feel comfortable, and then you will have the opportunity to educate them! You will quickly learn who your true friends are...
I am constantly taking the opportunity to teach people about autism through my son's presence, actions, or lack thereof. for the most part I have received caring and compassionate responses from many people who are genuinely interested.
Regarding an ASD child's privacy, I'm more concerned of people NOT knowing enough, especially family and close trustworthy friends...What if something happens to me? Knowledge is power and is more important to me than my son's privacy, within reason of course.
I told everyone I knew and more lol. I was suprised how well everyone took it. The support I get is great. I did get some he looks OK to me , but I took it as if they were trying to make me feel better. I think it helped me to get it all out.I told ppl my family and freinds. gotta get ready for the oh she doesnt look like she has autism. She isn't like the movie rainman, oh I am so sorry for you loss Like she is dead, she will grow out of it, are you sure? she will be ok don't worry ect ect. My neibhor still doesn'tget it at all. I know she means well, but she has no clue. And then somedays I just don't want to hear it from ppl. but I wish you luck and I do feel better telling ppl and family. Makes it easer to leave when we need to...HopeMommy, that is one of the biggest transformations for me that has come out of M's diagnosis. Well said.I immediately told my family (sisters, parents, etc) that we though Jaden was autistic and were planning to take her to be evaluated. After diagnosis, I immediately told them what happened.
Others, casual friends and such, i told as we ran into them...
I don't hide it--it's what our life is now--and we need all the help we can get! You never know who has resources to help you when yuo tell.
I had a tight-knit group of friends and family who traveled down the assessment journey with us. It was a long journey for us--2 years on and off. Within that group even a smaller group knew about the actual day that DH and I were going in to get the results of the end-all-be-all assessment, the one at the University of Washington. That small group of people got an email with the news asking for privacy and space and that I didn't want to talk about it until I was ready. Others, however, have been told on an as-needed basis. Kristy's example of the birthday party is a really good example of how I choose to share M's label when appropriate (I'm thinking of T-Ball--an explanation was pretty much mandatory). I should mention that M is very high-functioning and typically blends in with children on the surface, so I haven't found it necessary to broadcast it. If I had a child moderately or severely affected, I would probably tend to be more of a blabber mouth.My thought, give it time to sink in. I just found out about my son on march 19 and have only told the friends that are around him frequently. Most have been very kind and a few were like, no he doens't. He's pretty mild. Actually my friends have been more inquistive than the family. They have been pretty ignorant. My mil actually said I should put him in a corn crib to play outside, which is like a hugh cage they put corn in to dry out, like some cagged animal. She's even a teacher. go figure. You'll know when and who to tell when that time comes. Just play it by ear and hang in there.
Here's a sneaky way of sharing the information with people that you might regularly e-mail. Since April is Autism Awareness Month, I added a little signature to my e-mail format that goes onto the bottom of every note I originate. I pasted it in below.
My son is mildly impacted compared to many others, but I know I've been a whiney pain in the neck to my friends. I'm signing all my notes like this for the month of April. Because I don't want people to "freak out" and feel hopeless for us, I listed the names of famous people who are reputed to have Aspergers or PDD-NOS...just to encourage them to help my son and be patient with me. If people feel like they are being asked to help in some vague way, I believe they buy in. Just an idea.
April is Autism Awareness Month - Can you guess who may have it?
James Taylor, Keanu Reeves, Bill Gates, Bobby Fischer, Bob Dylan, Woody Allen, Andy Warhol, Alfred Hitchcock, Howard Hughes, John Denver, Vincent Van Gogh, Mark Twain, Henry Thoreau, Friedrich Nietzsche, Isaac Newton, Wolfgang Mozart, Wasily Kandinski, Frank Kafka, Henry Ford, Albert Einstein, Thomas Edison, Emily Dickinson, Alexander Graham Bell, Ludwig van Beethoven, Jane Austen
The answer is all the above! Autism is a spectrum, mild to severe.
It is often the patience and help from friends & family, plus the determination of the individual that makes all the difference. We thank you!
Hang in there - I just want to warn you that your relationshapes with people are probably going to change a lot. I found that after my DS's diagnosis I am a LOT less judgemental of others and this changed my relationships with my friends who I had never realized were so shallow before. For example, my friends fretting over the fact that their children only got so and so place in the beauty pageant or stressing about things that suddenly seemed really unimportant to me - I would want to scream at them about what stress REALLY is... It just changes a lot of stuff too - seeing their "golden boys" and hearing all their stories about them scoring the winning goals and this and that.
i actually got a good piece of advice here. I tend to blabber...I told who I thought could give me support, or could understand teh complexities of my sons dx(pdd-nos).
that being said--a mom here said to be cautious--that if you blab to everyone-you take away your childs right to decide who knows and who doesnt. As he/she gets older--they may want more privacy-and if you tell all to everyone-you have erased that [possiblity.
it hasnt stopped me from telling-but it does make me think 2ce before opening my mouth.
I think Kristy had great suggestion of e-mail to explain your reasons of possible moodiness and pre-occupation.
I found that it comes out in every day stuff anyways.....
Autism is a whole different category than Down syndrome ( my daughter has both ) the down syndrome is VISIBLE....easily recongnizable....but Autism hides and no one can know or guess