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Discussion Starter · #1 ·
I know I just need to stop talking to people, but I think I need to just get this out. It would be nice if someone can commiserate.<br><br>
My son is nearly 2 and has been recently diagnosed PDD-NOS. I'm still sorting through all of the social nuances, like when he acts up do I just tell people he's ASD, or do I make excuses for him and pretend he's A-OK. So I've been discussing this with some online friends, how I don't know what to say when other moms start staring at ds, and I give some examples. I know they mean well, but they have said that I'm just feeling insecure in my parenting and that other moms aren't really staring at us because his behavior is normal for a toddler. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/dizzy.gif" style="border:0px solid;" title="Dizzy">: I know they can't get it. They've never seen the behavior, so they can't know that while the examples I give sound typical, it just isn't. I think that for the time being I need to stick to special needs or autism boards when I talk about my son. I know these moms are really trying, but they just don't know what day to day life is like, and I'm feeling frustrated.<br><br>
Are any of you members of community support groups? I originally turned down the offer of a community support group, but now I am thinking that it might be a good idea. I'm trying to maneuver through getting services for my son, and dealing with him in social situations, and I guess I need to talk to my oldest because she keeps asking me why he acts like that. And I just don't know what to say. I was feeling so positive when we got the diagnosis because everyone was so optimistic about his prognosis, but today I'm really feeling frustrated, angry and a bit down.
 

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I had similar frustrations when my kids were first diagnosed. Even my IRL friends just didn't get it. They were trying to be helpful but they were not and I was at a particularly sensitive time in my life. Soon after I moved cross country and when I did I found that all the new friends I surrounded myself with also had SN children. I just couldn't relate at that time to people who had typical children. I did join support groups and community type things in my area as well as joined ASD online groups.<br><br>
It is only in the last couple years that I have begun to make friends again with people who don't have SN kids. My best friends still do but I am in a place now where it is easier to have friends who are not SN moms.<br><br>
As for strangers staring, I have autism cards and I look at it as an opportunity to raise autism awareness. I treat them in the same manner I do at home and that I would want others to treat him. That it is ok that they is different. If they are melting down I try to help them through it through calming strategies.<br><br>
I don't have time to talk to the onlookers if there is a melt down, but I can hand out a quick card if neccessary and my phone number as well as some websites are on my cards.
 

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I don't discuss Andrew much anymore with any of my IRL or other board friends. It feels lonely sometimes. I don't know of any community groups here. And for a while hearing them talk about struggles with their kiddos made me crazy too (she won't eat broccoli...ok and my kid won't eat anything; or just what i saw as drivel about clothes and toys and what have you stuff when I was dealing with such major things). That has faded in time.<br>
I guess I would say to you that the feelings after diagnosis (and for me for quite a while after) can be intense. For some people it is a grieving process and I went through every stage some more than once. You will get to a more even keel. It just takes a while and it is still fresh for you. The first time I talked to someone in real life who also had an autistic child I bawled the entire time pretty much. I had felt so alone. I found support online after that though (and cried when people responded to my posts and understood...).<br>
You'll get to the point where this is all more stable for you. It just takes time for it to sink in and settle.
 

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Discussion Starter · #4 ·
Renee, the cards are a good idea. I'm very torn between just being upfront about it, so my kids both don't think this is something shameful to hide, or keeping it quiet because I don't want people to label my son and treat him badly.<br><br>
Rachelle, I know what you mean about hearing about other mom's struggles with their normal kids. Going to some of these boards has gotten to be very painful for me because of just what you said, plus reading about things their children are doing that my son may not do for a very long time. These women have been very nice to me, and I consider them friends, but I feel like I'm misunderstood and an outsider now.<br><br>
Thank you both for your perspectives. I'm glad that I'm not alone in feeling a disconnect with moms of typical kids, and I think I will try to branch out and make friends with other SN moms. It's probably best. At least then I won't get the "Oh, but he's so cute." Or "Look, he smiles!" Uhhh, yeah, I sorta knew that already...
 

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I'm sorry that you are feeling so alone right now. I have had those similar experiences too. People when we're out looking appalled at ds1 throwing a fit. Looking at me like I'm crazy for talking calmly and quietly to him while still trying to wrangel the other two into doing something so I can deal with ds1. I know if someone ever says something nasty to me, I'm going to lose it. So hopefully, they won't. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"><br><br>
For a long time my mother didn't and still doesn't to a degree recognise that ds1 had problems above and beyond a particularly hyper child. No matter what we would tell her, she'd 'but' us. THen when he is really acting up, like he has the last few times we have visited my parents, she looks at me and says, "you really need to get that under control. Especially before he becomes a teenager." I barely am able to walk out of the room and scream, "no mom, I love it. I encourage him to act this way. See my great big smile from loving it so much. Yes, those are tears of joy running down my face." <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/banghead.gif" style="border:0px solid;" title="banghead"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/banghead.gif" style="border:0px solid;" title="banghead"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/banghead.gif" style="border:0px solid;" title="banghead"> I don't think she realises that things are a bit more intense.<br><br>
Thankfully, my middle sister is a special ed teacher and will play interference for me a lot. She is my rock and gives me such wonderful advice. It's funny, because we picked her to be ds1's God mother before we even knew about any of this. And then there is MDC! That has been a life line to sanity. Everyone here has been so supportive and helpful without the judgement I get from others. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/loveeyes.gif" style="border:0px solid;" title="Loveeyes">:<br><br>
I am going to look into community support system too, as soon as we get into this counciling. I think the councilor will probably know of some groups. It's nice not to have to walk on tiptoes around all the other people out there. They either get the, 'oh, you're exaggerating.' to the 'oh how horrible." comments. sigh!<br><br>
Many <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/grouphug.gif" style="border:0px solid;" title="grouphug">
 

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I have the cards. I've only used them once, but having them with me makes me feel "safer," kwim?<br><br>
I am a member of my local autism society chapter, and have networked with several special needs moms in my area through this board, the autism society, and where my son gets treatment.<br><br>
It's sort of hard at first, you're floundering around with this diagnosis and people are making stupid comments, and you just feel....lost. I would highly recommend you go to your local autism society chapter meeting, it can help. I will warn you though, the first meeting I attended I had a near panic attack. Not because anything bad happened, but because it was just so surreal at first, to sit there and listen to these parents and realize that I DID belong there, I wasn't just a sympathetic observer. I was "one of them."<br><br>
Use the internet to find people in your area, go to your local autism society, and when your ds starts therapy, ask his therapists about any other moms looking to connect.
 

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I'm new to the diagnosis too, and hoping to find a real-life community of moms. So far I haven't met anyone other than online -- I'm so eager to, though, that I practically accosted this woman after ds's occupational therapy yesterday. There was a sweet little boy just my son's age with seemingly similar issues, and I saw the mom coming in as I was leaving. I was so eager to meet someone, I just kind of threw myself at her and started talking a mile-a-minute, she kind of backed away slowly <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"> and afterwards I was <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/duh.gif" style="border:0px solid;" title="duh"> and pretty embarrassed! I won't be surprised if she turns and walks in the opposite direction next time she sees me. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/redface.gif" style="border:0px solid;" title="Embarrassment"> I'm trying to get into some of the meetings and so forth that they offer around here, but for the time being everything seems filled up with mile-long waiting lists, so it's frustrating.<br><br>
Anyway, I think it's just so true that, right now, I really want to talk to people who understand -- so I really get where you're coming from!
 

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We were always upfront to dd about what was going with ds. I think the more you can tell your other dc, the less shame there will be... not that there should be any anyway. When you consider that there is 1 asd person for every 144, you know there are alot out there. As "problems" <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/duck.gif" style="border:0px solid;" title="Duck">: go, this one sure comes with alot of blessings. These are some really cool kids! I think that if you do join a group it might be neat to see how parents and kids are when they get older. There is so much to learn from those that have been there, done that.
 

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How do you get them diagnosed past ADHD? My dss is 9 and I feel like I have the problem when I stand in front of the counsolor and say "no, you need to look further". We are trying to get an official diagnosis both so that his mother will recognize that there is a problem and so that we can all learn to help him live as less stressful a life as possible. He is the discription on Asburgers (minus one thing and mild on another) It sounded like most of yours were diagnosed at a young age. That probably would have helped here, but even at 6 the Dr said, " Hes just a little on the slower side, just won't be a star athlete thats all" Three years later, we have finally gotten him to where most of his independant functioning would remind you of a 6 year old.<br><br>
Anyway, I am just looking for some sugjestions on how to get them to look past the old ADHD copout.
 

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Discussion Starter · #10 ·
I don't have any suggestions for you, moonbeam, I'm sorry. We started this with my son's 18 month well baby check. His Dr asked some questions about his speech development, and a couple of things I said raised some flags with her, mostly how he had been saying words and following commands, and then just stopped. So we got referred to a developmental pediatrician and a speech pathologist. The Speech people we have seen have all been very adamant that he is not ASD. The Developmentalist was not so black and white. At the first visit he said that one or two things about my son concerned him, but he thought he'd probably be fine. So we got ST for him, and a follow-up appointment in 3 months. In the meantime, I started noticing some odd things he would do, and I kept a list. When we went in for his follow-up appointment it was clear to the Developmentalist that he was on the spectrum. He meets 5 of the 6 criteria, so he is technically PDD-NOS, but he said in his report that we may notice more signs after the age of 2, so I worry about getting a full autism diagnosis. We'll just have to see.<br><br>
Anyway, the only thing I can really offer to you is that maybe instead of seeing counselors, he should be seen by a developmentalist? The push for ADHD is so strong these days. I am already hearing it about my 4 year old in her preschool. Yes, she is more hyperactive than the other kids, but it does not impair her ability to focus enough to learn. It just annoys her teachers that she won't sit still during circle time, so BFD, KWIM? Some kids truely need that diagnosis, and we need to focus on them, not children who are typical, but high energy. It's obviously a hot button issue for me, lol. If it wasn't for my ds needing my time right now, I would still be homeschooling her.<br><br>
This thread has helped me a ton, so I am very appreciative of all of your insights. I have decided to keep my thoughts and discussions about my son to other moms of SN kids, just to save me the heart-ache. It is going to impair my relationship with the moms on this board that I was talking about (we're a pretty small close knit AP group), but I can't help it. They don't understand and I don't want to cause friction. I really like and respect these women, so I will keep our friendship working as well as I can, and to me that means keeping my ds's "quirks" out of the conversation. I am also going to join an autism parents support group, and I'm going to treat myself to a new diaperbag and wallet, just because. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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My son is very high needs and we will be going to an OT sometime soon when we are able to get an appt. But, I do know how you feel. I get the "look" as well by other moms or other people alot. My son will just go into a tantrum at the store and it will last for 30 mins and I cant carry him out so I take him to an isle were I hope no one will come and let him go through the motions to get it done..<br>
Or when his paper is folded up at a party and he cant touch the paper since its "scrunched up".<br><br>
What helps me is to talk about the looks I get and whatever happend with my son that I am having a hard time dealing with. It just nice to get it out in the air. Make sense.. Im sure all the mamas on here wont mind if you do!<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/winky.gif" style="border:0px solid;" title="Wink"><br><br>
Hugs.
 

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<div>Originally Posted by <strong>teasdone</strong> <a href="/community/forum/post/7234472"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">... I saw the mom coming in as I was leaving. I was so eager to meet someone, I just kind of threw myself at her and started talking a mile-a-minute, she kind of backed away slowly...</div>
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Ha! Boy, I hear that. We are so desperate for someone to identify with and for someone to really understand. Then we scare them back into the bushes. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/orngtongue.gif" style="border:0px solid;" title="Stick Out Tongue">
 

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Just wanted to comiserate a bit. It seems like every time I describe Michael's behavior to my mother she comes back with a, "that's normal," response and it drives me crazy. It's hard enough dealing with it as it is sometimes, I don't need someone feeding my second-guessing, I'd just like some validation for once.
 

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I'm new to this forum. I must admit I've been avoiding it - like somehow that will make the Asperger's diagnosis disappear. DS #1 was diagnosed in Sept. '06 and I still grieve on a daily basis.<br><br>
So many of your posts ring true for me, too. My husband just doesn't "buy it". He says temper tantrums are normal - DS is just like any other 3 yo. My father says we just need to be more strict. Force him to nap, force him to behave, force him to eat, etc. (btw, my father has a raging case of Asperger's).<br><br>
My friends have been so kind and supportive, especially since getting the diagnosis. I was afraid to tell anyone - but it ended up being such a relief. At least they sort of understand when my son has hit, barely talked, made horrible faces. They no longer look at me like I must be abusing my child or that I'm the worst mother ever.<br><br>
My biggest challenge now is keeping DH on board with our gluten free/casein free diet & many supplements. DS has blossomed into a new child entirely! Then DH takes him to McDonald's for chicken nuggets and french fries. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">: We start all over again...<br><br>
I'm sure this gets better over time. There are days when I'm just so damn pissed that my son is stuck with ASD and yet, it really could be worse. I used to see this woman who practices colorpuncture (like acupuncture w/ lights) and she said we choose our families. Seemed like an odd thing to say, but honestly, I will do WHATEVER it takes to make my son well. It's nice to think that maybe he chose me to be his mother because he knew I was up for the job!<br><br>
Thanks for listening. So nice to know I'm not alone! I rarely visit MDC anymore because it's too painful.
 

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<a href="http://www.autism.org.sg/public_html/html/articles/grandparents_marnews2003.pdf" target="_blank">http://www.autism.org.sg/public_html...arnews2003.pdf</a><br>
I found this last night as a rousource for grandparents to hear about Apsergers.<br><br>
I like you mothering SN board people <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"> my only other community is a parents support group at the Y. that's good too. And there are lots of seminars in my area.<br><br>
Moonbeam, a common psychologist wouldn't really have the skills to diagnose spectrum disorders. even if they were willing, their lack of experience ought to make you skeptical of their opinion. Find a developmental pediatrician who specializes in this stuff, and then you'll get a trustworthy explanation!
 

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<div>Originally Posted by <strong>Serenity Now</strong> <a href="/community/forum/post/7233125"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Renee, the cards are a good idea. I'm very torn between just being upfront about it, so my kids both don't think this is something shameful to hide, or keeping it quiet because I don't want people to label my son and treat him badly.<br></div>
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This is definitely a concern, but I think the only way to help others not treat our kids as just a label or badly is to teach them about autism and help them understand who are kids are as people and that they are children first.<br><br>
Our children are not going to be not autistic because we don't talk about it. They are either going to be labeled "autistic" or they will be labelled something else less nice like "naughty" "bad" "weird" and I could go on.<br><br>
In my siggie is something I strongly believe. "To not speak of autism is to make it something unspeakable". I don't want the kids to feel like that elephant inthe room or that something about them is bad or unspeakable just like you said.<br><br>
It isn't easy to talk to other people about it. Particularly the many people who are not understanding, but I do think it is part of my job as an autism mom to educate them so my kids have a better world to live in.
 

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Where do you get these cards? I would like to have them in my arsenal! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"> And how and when do you decide to give them to people?
 

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I did not read all the responses, so this may not be helpful.<br>
But let me see if I understand this correctly--you post on line with other moms and they tell you he's fine, and then in real-life you don't have a support group that you are involved with?<br>
If that is the case, I can tell--I've been there! When dd was born, I was an active member of an on-line group (all 'normal'--sorry, hate that word, but need a term that we all have some recognition with)--tell me almost the very same things you are hearing.<br>
Then I got involved with a IRL mom group (again, all 'normal' babies) and that wasn't helpful at all.<br>
The best place for me was a group on line that was designed specifically for tube fed babies (I can't tell you how many thousands and thousands and thousands of times I heard--she'll eat when she is hungry--no baby would ever starve to death--UGH!!!!!!!!!!!!!!!!) and then I felt at peace.<br>
And peace is what you really need to surround yourself with when coping and dealing and coming to terms with all that we have to go through. It's essential to OUR well-being and mental health.<br>
Instead burning up my mental energy trying "to prove" myself to these people (seriously, think about how insane it is to try to prove to someone that your baby is NOT 'normal'--makes your head spin, doesn't it?? <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"> ); I finally had to give up and disconnect. It was hard because I thought in some twisted way that I was getting support from these people. But I really was NOT.<br>
So, I slowly slowly found my way to like-minded people who understood, and then the energy once burned trying to prove myself went into better things like IMproving myself and the life of my dd.<br>
Hang in there. It is so hard to adjust to all of this.<br>
DD no longer is tube fed and has very severe SID, but yeah, she LOOKS like any other normal kid...but only eats hotdogs and noodles and drinks ONLY water. LOL! But she's here!<br>
And if this post is not helpful at all--just ignore me, but know that there ARE people who DO get it. And that's important.
 

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My dss's teacher just started adding handwriting in on grading spelling tests. I always feel so bad for him because since starting third grade the spelling words lost their patterns and now just are related to a topic so he was alteady spending his an hour and a half every night trying to write the words enough times to spell them right on test day, now its the words, and cursive writing. I think this is one place a diagnosis would help. It just takes so much work from all of us for things to happen with him. I could go on and on and on about our daily struggles because I never have anyone to talk to that understands. I also get the response of " all kids do that". In the last year we have finnaly been able to get him to take a shower without standing in the tub crying for 10min to a half hour. We hope he is cleaning himself without dh sitting in and telling him how and what to wash. The things we go through daily makes me want to make th dr that did the behavioral analysiss on him 2 1/2 years ago just come and sit with us for dinner when he dosn't remember that he loves meetloaf, of sloppy joes, or frenchfries. Or when we had to decide that he has to finnish his vegitables before he got anything else on his plate because he goes to his moms house and doesn't get vegitables at all and forgets that he likes some. Altho I do think its funny when he forgets that he thinks kidney and navy beans are dry and says that he really likes them. i think the biggest thing I need to do is just say some prayers, and keep my cool, and stay persistant and have faith that the persistance will pay off in the end and before he sets off on his own in the world he will be able to have a routine set that will allow him to function. Because what I can see happening now would be that he would get a good paying job, (selling tires and rims no doubt because that is the thing he can tell you EVERYTHING about) finding his own apartment, and being really excited about it, and then the first time he is there alone standing there and just crying because he forgot what he needs to do. I guess we still have 9 years to work with him though. He is like a 3 or 4 year old in most of those things now (this was observed by professionals too) and that has advanced from abeing like a 2yo in the last 3 years so I think with persistance we can get there. I jsut wish we had support to do it right.
 

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moonbeam-<br>
I just wanted to say on the spelling words, we had a really hard time at the begining of the year, because ds has very poor small motor skills. We spoke to his teachers, because his IEP says to reduce writing tasks, so instead of having him write his words, he can use letter tiles, or do the tests orally. It can be really overwhelming for a kid that has problems writing to actually learn the words that way, because they're so focused on making the letters look right, that they don't have the time to actually sound out the words.
 
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