Developing a thick-skin | Autism PDD
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The Panic sets in....
I know how it feels to lose yourself in the steps you take each day.
There's so much to do that noone knows how it drains your strength
away. Every breath you take seems a little faster than it was the day
before. The panic gets set and noone can help. They don't know what
your tears are for. You watch so close and look for signs that he
understands the words you say. Each glimmer of hope is erased it seems
the more you watch him play. The next day you watch and wonder if he
really spoke at all. And question the days when you could have sworn he
bounced that bouncy ball. When he looked into your eyes and laughed,
when he ate everything in sight. When he seemed to know the "I love
you's," and the stories you'd tell each night. Why do all the things
the doctors "know" Strike a nerve every time you breathe? And why does
it make so much sense to you when noone else wants to believe? You feel
that panic come in and wonder what's left for him outside? He's been in
there for so so long despite some things you might have tried. Will he
find the words that are in his heart so he can say the "I love you's?"
Will he retell the stories you have told? Will he do all of this for
you? The panic is there to let you know, his future is in your hands.
You have been given this very special gift that only you can
understand. You've been trusted with a puzzle piece. You have to make
it fit. Few of us know the picture in the end but we all will dream of
it. November 2003 Tami Wilken written for a very close friend who also
has a beautiful boy with autism.
Oh yes, we go through this from time to time... Even today, Julian (5) was doing so well with the dentist, but he couldn't understand the concept of keeping the bitewing xray film in his mouth. He already has oral issues...So finally she gave up and when she walked away, he laughed. Mind you, our kids laugh inapropiately at times and this was one of them. Even though she knew full well he is autistic, she marched herself right back to him and began to tell him in a stern voice that next time he had no choice, he had to get xrays and he could laugh this time but next time, etc... I just calmy looked at her and said, "He really has no clue what you're talking about." She then realized what she had done and excused herself from the room. She looked a bit anxious after that. LOL All I can say is sometimes, ya just gotta tell the person to "F OFF"! LOL Not all the time, though. Just when it's that particular person's turn for a swift kick in the patooty! Anyway, YOU know what's best for YOUR child, and others simply do not. I had one friend, whom I thought was a good friend, tell me I was just making up these illnesses to get money. What a ho.
luv,
Rachelle
Hi,
I'm new to this forum, and new to the autism diagnosis. This is only the 2nd post I've read, and I feel so close to this problem!! My son is 8, and has been labeled ADHD "with capital letters" since he was 5, Asperger's 2 months ago, and now, high functioning autism. Very few people understand! I used to feel every critisism, and had the impression that every odd behavior was my fault as a parent. I let other parents' smug ignorance get to me. I basically gave them permission to insult my capacity to care for my child! Ignorance! When parents have easy kids, they think their answers are all anyone would ever require. They are compelled to share them when we vent, even though our kids are anything but easy.
I know now that only we have the true sense of our son. I wish I had just kept some of my concerns to myself a few years back, or had been extremely selective in whom I chose to share them. When I shared my worries with my ignorant friends, they went into auto-pilot fix-it mode, and just started spouting the standard discipline garbage they thought I needed to hear. It was definately not what I needed!! I just needed someone to hear me, and to realize that we were in a deep situation, not a simple behavioral problem. I wish I would have told them to shut up (!), or just said, "whooooa there. I don't need pat advice... this is a diagnosed developmental problem I'm sharing... not simple naughtiness" and that I knew what I was doing. You know what you're doing too!! If they become offended, move on. A friend who wants to learn and understand what is happening is the best gift you will ever receive.
This is, without a doubt, the highest calling of my life, and the hardest thing I've ever done. It isn't about ordinary parenting. It is more than those who can parent by ignorance will ever comprehend.
I've posted about this before and I have seen other similiar posts lately but I am still struggling with not letting other people's comments about dd and her treatment and/or diagnosis get to me.
She's only very recently been dxed so we're having to tell a lot of people for the first time and am getting a variety of reactions - none of them particularly helpful or comforting. I know that before this I myself would have no idea how to respond to someone telling me there kid has been dx with pdd, especially a "mild" "high functioning" one so I can understand the part where they don't really know what to say and let that go. But, I am also getting unsolicited advice, told what to do, told that "I'm seeing things that aren't there", interfered with, told I'm doing something "wrong" and on and on.
I know none of it really matters as I know in my gut that dd is in good hands with her ST and neuro, I am having her further evaluated to see what other services she might need and I am reading all those books out there to better inform myself about this mysterious spectrum and how to best reach/teach the kids caught in its grip. In other words, I do trust myself and my gut - but at the same time I am ALWAYS feeling the pressure and questioning myself because if I'm wrong it could be so detrimental and devastating to dd's development. I constantly feel like I am carrying the weight of my daughter's development and future on my shoulders - and really in the end, all these crucial decisions about what to do and what to try are ultimately ours and our guts' to make. How can we not doubt or fear? All these comments just tap into that insecurity and fear and make me worry that I am somehow failing dd.
I guess it then galls me to have somebody who hasn't a clue what it's like to live with this everyday, let alone understand the nature of the disorder itself, tell me what I'm doing "wrong." I'd like to think if it was a constructive comment I could incorporate it or try it out, but they mostly seem critical. And maybe that's just me.
I'm a very thin-skinned person to begin with but I can see that I better toughen up quick to people's unwanted opinions, suggestions, etc. and not take it all so to heart so that I can keep my energy and focus for my dd and the people who CAN help her. I was just wondering generally if you all went through this toughening up phase and if so, HOW? Or, if you were already impervious to other's opinions, as my DH is, how do you get that way???? Thanks - I really needed to vent with those who UNDERSTAND!!
I don't think you are a 'thinskinned' person. Even those w/ the thickest skins still feel hurt when others try to tell you another method of parenting or that the doctors could be wrong about your child...even when their intentions for giving the advice is good. I know that in the early stages after you learn your child is special and unique, it can be devestating. However, you never focus on what they can't do, but what they can do. Celebrate their achievements, not their failures. Tell this to those you are giving you the advice. I suspect they are in a state of denial and the diagnosis has not settled in yet. It took my parents and ILs weeks before they could accept that my daughter was autistic. My sister still does not believe it and is waiting for the ADOS results which should come this week. I have had around 12 people who specialize in providing assistance and therapy to children on the spectrum and they all have said she definately autistic, if not falling on the spectrum.
It has taken me months to get to where I am emotionally - accepting my daughter's diagnosis and doing everything in my power to provide her w/ various interventions so she can grow to be the best person she will ever be. And then to have my father in-law question whether my daughter is autistic because he was comparing her to another autistic child who was not as high functioning as my daughter. FIL still to this days soes not 'understand' ASD. There is nothing I can do but keep providing him info and hope it hits him like a ton of bricks.
I am rambling...sorry. I know it does hurt. Just do your best to keep your chin up and provide everyone around you with as much information as possible. Maybe the parents on this board can provide you with a could of books or sources that you can give to your family to make them understand Autism and everything that comes with it. Education is the key to get your family off your back and to improve how they interact w/ your child. To this day, I still have to show my family how they need to interact with my daughter so she doesn't go balistic on them.
Also, you will find that over time, you will grow a thicker skin as you learn more about your child's condition and different ways to help her. You become her most strongest advocate. This is so important when it comes to the quality of services, assitance and education she will receive. Don't worry, it will come naturally...it just takes time.
I hope everyone's responses help you feel better. Good luck. We are here for support if you need us!
"because if I'm wrong it could be so detrimental and devastating to dd's development. I constantly feel like I am carrying the weight of my daughter's development and future on my shoulders - and really in the end, all these crucial decisions about what to do and what to try are ultimately ours and our guts' to make. How can we not doubt or fear? All these comments just tap into that insecurity and fear and make me worry that I am somehow failing dd."
We all make mistakes with our children, but if you sit down and think logically you know that you are doing everything right for your daughter that you know to do right now. With hindsight, all parents look back and think "Hmm, I probably should have done that a little differently." But, kids still turn out okay. Also, decisions you are making are not set in stone. There are going to be things you'll try that don't work, then you change them. Your daughter will not be damaged by that. You are a good mother, and you are obviously trying to do everything you can to help your little girl with her developmental needs.
As far as other people go, I think you just have to know that you are doing the right thing, and I would just tell people about the diagnosis on a "need to know" basis. If most people can't tell anything's wrong than I just wouldn't tell them. Talk to people that will be supportive, these will mostly be parents of other ASD children, look for a support group in your area. Also, a few of your current friends and family will be supportive, figure out who those people are, and talk to them about your daughter, but not with the others. Don't put yourself through unnecessary stress.
When people tell you you're doing something wrong, or give you crazy advice, just say "Thank you for your concern.", and remind yourself that you are doing the right thing.
ahh, discipline. Everyone knows the RIGHT way to discipline YOUR kids! LOL Take a look at THIER KIDS, and SEE how things REALLY ARE! LOL My inlaws are like that. People at work, etc... Sometimes I just want to scream at them, "LOOK AT YOUR FRIGGIN' BRATZ! DO NOT ATTEMPT TO TELL ME HOW TO MANAGE MY KIDS UNTIL YOU MANAGE YOUR OWN!!" But I don't. HEEHEE I just think it and hope they can read minds. Sometimes I think that works better. People can read my face and see what I'm thinking...LOL
Hope all is well!
Rachelle
Thank you so much for posting this thread...We recently got our initial diagnosis and for the most part are getting lots of support. However from the people we need the most support from - our immediate family who live here, we are not.
At first I thought they were just going through the process, a little denial, but unfortunately it's not that simple... My mom and step dad keep telling me how the dr is wrong and I'm exaggerating the problem. It really isn't that bad, etc. They also have warned me not to tell anyone b/c they are afraid people will label my ds. They don't want us to tell the church where he is registered for preschool for the upcoming year (not sure if will attend now, depends on what the dr says) about the diagnosis. I really think they just don't want any of their "friends" to know something is "wrong" with their grandson. It hurts me so much. Honestly they act as if they are ashamed of him, and that if we just ignore the problem it will go away. They are already treating him differently. They keep trying to prove to me he is "normal".
And then there are those people who say "he seems so normal" maybe "you're just overreacting". What do they know?
The way I see it is no harm can come from getting my ds help. If there is a problem we will fix it, or at least do the best we can for him to be able to live peacefully. What harm comes from running tests and finding ways to make life for your child better.
People are truly ignorant at times, especially when it comes to pdd's I've found. The most awful thing I've had to come to terms with is that I realized perhaps in the past I was just as critical and perhaps even as insensitive as other people. However, I didn't say it to them, I had the same thoughts they had.
I have no advice on how to thicken one's skin, I can only say that you know you are doing your best and looking out for your child's best interest and really that's all you can do.
(((HUGS)))
Christie
Hi Sallys,
OK, I have an older Brother who has ALWAYS picked on us siblings whether we're younger or not...He's loving, don't get me wrong, but he just thinks he's funny when he does this...anyway he's also extremely intellegent, which I am not. Anyway, when we talk about my Son (who is HFA), my Brother always has some kind of smart allec remark about how HE'D handle him (our Son) or if I'm having trouble with the school (which has been rare), how HE'D handle THEM. He always makes me feel inferior. BUT I've gotten to where I can just let it slide off my back, like rain on a duck....I guess I'm just really not worried (anymore) about WHAT he thinks. I KNOW I'm doing the best for my Son.
Good Luck with your "thick skin".....................Try not to let "them" bother you..............
God Bless you & your Family & keep you all safe!
LINDA...aka Tony'sMom...aka MWN64
I understand. It is easy to start to 2nd guess yourself, even if you know the other person has no clue what's going on. My BIL (bless his heart) loves my kids to death. But he just doesn't have a clue about the spectrum. Of course ds is not dx'd yet, but that doesn't mean I agree w/ being cruel in my discipline regardless. BIL says I need to be more firm, that ds knows what NO means and purposely ignores us, and that he needs more spankings. He says if he was ds's dad he would beat his little behind more for his own good. Now of course he says this w/ caring for my son and would never take it into his own hands no matter how he feels. I normally just let these comments go by, but recently I started to wonder if maybe he was right. Maybe I was just letting ds get away w/ things. So I tried being more firm and even gave ds a couple butt swats when he was acting up yesterday (omg he was having such a TERRIBLE day yesterday and just acted up constantly). Boy did that NOT work...it made him worse. Now of course BIL would just say it's because he's used to getting his way, but that made me decide to forget listening to others. More discipline was not going to stop him from acting up, at least not the kind that BIL was talking about. It's not like I don't say "no" to ds or put him in his crib for punishments and what not. I do discipline him, but honestly not much works. Not like w/ dd. Power to you sally!
Amber
Yes I agree Nelle. When I thought maybe BIL was right and I let him get away w/ too much and tried the spanking, boy did it end up going the wrong direction to meltdown! I do agree w/ you there it is not going to work for him, autistic or not. I will try other non physical forms of discipline thank you.
Amber
This is a really hard issue. Especially when it comes to people we have held in high regard or love dearly. I finally quit going to parenting classes, reading about NT kids, and decided to hell with 'them' tapes. When i began to feel more confident about my own knowledge base, it became easier to ignore or avoid those people that were not encouraging.
Recently, my mom noted how far my son had come. I agreed, and she sad that I had worked really hard and that she hoped another relative would stay in touch wit me about her little one with the same diagnosis. i really needed that affirmation and embraced it.
i know that you will find your footing as well. This forum is a tremendous help in that regard. You are not alone.
Welcome Bugmanmom and Sunny, Very interesting comments hope to hear more from you both. Sunny how old is your daughter? And what is her Dx? Amber I wondered to with the spanking advice but Takoda doesn't understand enough not to think someone is just out to cause him pain. I would trust your instincts in the future not someones ignorant but wellmeaning advice. After witnessing Takoda's dad trying spankings and they just put Takoda in a total meltdown I would never recommend them for autistic children. Nelle
i have had to develop a very thick skin since my daughter's dx. in the
beginning, it was real tough and i was oversensitive to everything
regarding my daughters disability. we had to go through so many doctors
and specialists just to get the dx. after we finally got it, my "best
friend" (at the time) had the NERVE to tell me that there was nothing
wrong with my daughter, i'm making up excuses just for attention, and
that i should get a second opinion!! so i told her "after already
seeing a physician, neurologist, psychologist, and autism specialist,
you think i need ANOTHER doctor to evaluate her? do YOU want to find
that doctor for me? and if that doctor says she's fine, should i
disregard what ALL THE OTHER DOCTORS diagnosed her with?!?" we havent
really spoken since that day.
another time, right after my daughter's dx, we had an incident
involving my niece. she's only a year older than my daughter, and both
were real young at the time. my niece stole a book from my daughter,
and since my daughter couldnt verbally protest, she acted out
physically and kicked my niece. of course, my brother and SIL went on a
ranting spree about how i cannot control my child and she's just a
brat. i was like "WHO STOLE THE BOOK FROM WHO?! and you call MY kid a
brat?!" this ended up being a very physical fight between my brother
and me. he was another one of those "experts" who didnt believe
anything was wrong with my child and that i was just a bad mother. he
has lived with me on and off for the last few years, so now he knows
differently and completely supports me emotionally. he is very
protective and concerned for my daughter.
now whenever somebody makes a comment about my child's behavior, i just
say "you think you can do better with her? ok, take her for a few
hours. i could use the break. you can see what i deal with every day.
let me know what you think when i get back!!" it usually shuts them up
real quick. 
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