Topic for more severe ASD | Autism PDD
Holly ... you did not offend ... and my kiddo is probably alot like your friends. He is quiet and easy going ... and in some ways having a child that is obviously autistic IS easier. There is no question about what services he gets or his placement.
And he has made progress. Just 9 months ago, he said every color was blue, and now he is naming his colors again. This was something he had at around 2 and then lost, and now its back. He's also making eye contact with me, and he wasn't doing that before.
It's an idea ... I put it out there to see if anyone would be interested.
Well, no - don't get rid of this thread! I think it's important to discuss this stuff. It's how we grow as a board. I (and I know others as well) feel like I'm always walking a very fine line here. I really do usually think about what I post because I know that complaining about ds asking me the same thing over and over might seem trite to someone whose child doesn't speak for instance.
Remember, I used to be a social worker and I'm all about making the peace! And trying to work on the group dynamic too
Really, I love this board - it often helps me keep my sanity. Especially when I'm in a new community and know almost no one who has a child with autism yet (well, I know two and am hopefully meeting more tomorrow evening at a support group!). So, you guys have been a saving grace for me since I have no one else to vent to. I try really hard to not vent a whole lot to dh as we need to talk about other things besides autism! Of course I vent some - but as you all can probably tell - I have a LOT more to say!
Anyway, I hope we can figure something out. I just feel bad that anything I have said might have made someone sad or angry or hopeless. Not my intent at all. But, I think we all learn from each other and I hope I have helped SOMEONE with any of my posts. I know you all have helped me a lot.
Okay, getting off soapbox now...
As a mom with a son of a lot of issues, and not potty trained, and not verbal, please don't change this forum. I love hearing everyone's experiences. Whoever said once you've seen one child affected with autism, you've seen them all, is so right. I feel like I know your families and it never makes me feel bad. My son may be more affected and not HFA, but I have a dh and other family to help. Sometimes I wonder how you single parents do it! We all have our ups and downs, and I like feeling like one big family. I feel like I am sometimes separated from the world enough, please don't separate us! JMHO[QUOTE=NYMommyof3]I'm thinking ...and I'm suggesting this to the other mods, that we set aside another forum for children with moderate to severe ASD.
I'd be glad to moderate that forum.
I've got to be honest. I get frustrated and sad at times when I read all these success stories knowing that my son is so much more disabled then others. He is 5 1/2, in pullups, no bowel control, cannot read, write and cannot recognize letters or numbers. He may be MR as well.
I left the board for a while because I was sad and frustrated with no one understanding what I was going through. But I know there are parents here with children as effected as mine is, and I'd like a place for us to meet and talk.
Any thoughts?
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I understand and share the sadness and frustration you feel at times. It's human nature to "compare" our children and to hope they will develop/reach milestones within a similar timeframe. I find myself looking for the ages and diagnoses of the children all the time to see if Cooper is doing what other "just turned 4 year olds" are are doing.
This doesn't mean I don't celebrate the success stories, I do. As a matter of fact, I go looking for them. It gives me hope that maybe one day....
Irecognise characteristics/ behaviors in both my kids that I see in members and their children here regardless of where they are on the spectrum. I personally find it hard to put a dividing line between moderat to severe. Im not sure I would find a forum for more severe asd helpful just confusing really. I think we all have something to share. I have always accepted that people have differnt strengths and skills so someones triumphs dont make me sad- perhaps it down to where we are in grieving or coping? I don't know. LizSo my feelings have been hurt...big whoop. I either get over it or I don't. Please, no one should feel like they have to censor themselves from sharing their own experiences. You cannot control how someone is going to react to thing things you post, but that isn't your problem, in all honesty.
Like others have mentioned, I like reading about the success stories...they give me hope. The fact that it sometimes catches me wrong isn't anyone's fault, and the possibilty that someone's feelings are hurt shouldn't keep you from posting about these things.
Fact is, my son is more delayed than others. Other kiddos have their strengths. Jason has strengths that others do not. *shrug*
I don't think this should be reason for anyone to quit posting here, that's all.
[QUOTE=kristys]Trying to think out of the box a bit...
Is there possibly another way to organize the forum? Not just mild/moderate/servere? Could we possibly play off the triad of symptoms and have separate threads for:
Communication
Social
Repetive Behaviors Stims
As well as maybe a thread for Life Skills (this would include toileting, self-help, bathing, etc.)
We could also leave a General Parenting topic as well.
I'm ok however we do it. I tend to use the "Active Threads" option at the top so I see what's going on in all categories in 1 view.
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*blinks*
That's why you get paid the big bucks, kristys! LOL. That's a really good suggestion, I think. It might help eliminate some confusion. I see a lot of posts starting with "I'm not sure this is the right place for this..."
I think that might help clear that up, too.
I really like Kristys suggestion too.My own personal thoughts: As I raised my first 4 kids, I had certain expectations of general milestones that could be talked about with friends, teachers, etc. While they all had distinct personality differences, there are those "basic" skills that we watch for and compare to other kids. (Right or wrong, just how it is)
With autism, I would like to be able to say, Ethan at 3.8 is blah blah blah, and have others answer, yes, that sounds like how my son was and now, at age 5, he is blah blah blah. I would expect that with for instance diabetes, I could ask about symptoms of too high blood sugar and I would expect to get many of the same answers and the same remedies.
As GTTO reminded me, while people with autism, just like any other category of people, have many things in common, their are no definitive timelines, expectations or milestones. The concept of a whole different way of thinking, feeling is so hard for me to grasp. I am still trying to really understand all the sensory issues and how they might feel. And I try as hard as I can. Oh, how I wish I could trade places with Ethan so I could see what he sees, hear what he hears, feels how he feels. This is by far the most frustrating thing for me. It has been 1 1/2 since our first diagnosis and I still feel so ignorant.
I know there are no guarantees ever and I would have never guessed in my 20's that I would be where I am at now. I just know that for me, I am looking for someone to say "this is how it will be" and I guess I already know that no one can tell me that. At least I know that here, there are many others who understand. So I guess we are all in the boat together.
[QUOTE=kristys]
I tend to use the "Active Threads" option at the top so I see what's going on in all categories in 1 view.
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Me too.
Mods! whatever changes you are going to make, please do not remove "Active Topics"! I always use it and look at all the new threads whatever category they have been put under.
Daddy
Most people look at my daughter and think she is a NT 5 year old who is a complete brat. I have to remind even family that yes, she is bright and verbal, but her autism affects social and behavioral aspects of her life. I would say she is high functioning in alot of areas and severe behaviorally.
We would probably all wander to a severe forum for certain reasons. If our children were high functioning in all aspects of their life, then they probably wouldn't be ASD.
Snoopywoman and others, Please, I hope I haven't offended you. I honestly have never had bad feelings about anything others have posted. We all have one very important thing in common. I was just expressing my personal frustration and at times feelings of helplessness of not knowing what's next for Ethan. This post was never intended to make anyone feel offended about anything. It was just a suggestion. Mods go ahead and get rid of it.
I would just like to reiterate that I am deeply sorry if I offended anyone at all. My son has autism - plain and simple. My struggles are different than a lot of you, similar to some. I feel terrible that I have made anyone feel bad reading my posts. Perhaps it is just time for me to take a break for a little while - dh has been complaining about my "computer time" anyway...
Again, I am very sincerely sorry to anyone I made feel bad or offended...
I too usually only check the parents forum and the hangout section when I have the time. Although my son is NOW regarded as high functioning (school district labelled him severe 9 months ago), he still has some "severe" behaviors even though he's made great progress with ABA and biomed.
Every time I clean up an exploding poo, I think, "NYMommy does this everyday....I am not alone." I'm actually impartial about setting up another forum....I say go with the majority, but I'd hate to miss out on your experiences.
Trying to think out of the box a bit...
Is there possibly another way to organize the forum? Not just mild/moderate/servere? Could we possibly play off the triad of symptoms and have separate threads for:
Communication
Social
Repetive Behaviors Stims
As well as maybe a thread for Life Skills (this would include toileting, self-help, bathing, etc.)
We could also leave a General Parenting topic as well.
I'm ok however we do it. I tend to use the "Active Threads" option at the top so I see what's going on in all categories in 1 view.
[QUOTE=mom of twins]Every time I clean up an exploding poo, I think, "NYMommy does this everyday....I am not alone." .
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ROTFLMAO! I know it really isn't "funny" ... per se ... but I did have to laugh thinking how poo and me have such a connection ... LOL!
I am ALL FOR having a separate thread for our Moderate to Severe children with autism. I think it would be wonderful, and of course the others would still have access to it to read or glean if they so desire.
Count me in, my almost 8 year old still in diapers, still has to have us wash his hands and face and brush his teeth - is in this category -
There is already a successes/updates thread. Maybe that could be moved higher up in the order (by this thread and the Edu thread.) I think that that would help others to better notice it, and hopefully mods would be willing/able to move success stories/posts to that, and people would be more comfortable posting here... I sit on the fence with this topic. I have one child at the more severe end of the spectrum and one on the mild end. It was reading the posts about ya'lls milder end of the spectrum kids, that I began to see the red flags in Jacob. If I was mainly posting in a forum about the more profoundly affected...which my oldest son is....I might have missed those threads and missed signs in Jacob. I have limited time, and most of it is spent in the Parents forum or the hangout with friends forum. I check out the others, but not to the extent I do these two forums.my son is mild to moderate not severe but we are just starting out on kanes journey, i really love reading about everyones success, it gives me hope that kane will reach his milestones eventually! I think all our kids are so different and have strengths in different areas it would be hard to know who belongs where. Sharlet is dx mod-sev but she knows numbers. However I feel sad when I see how much further other kids are with motor skills and physical abilities. Or I know Sharlet is much more severe than most with anxiety and phobias. I get sad when I just hear about kids bathing because Sharlet hasn't had a good wash in 3 months. So I know Sharlet is mod-sev in some areas but ahead in some academic areas. She also knows her shapes and colours but has no functional speech and often can't name things she knows and suffers constant regression. so would I fit into the mod-sev board despite her skills even though that is her dx? Do you know what I mean?Edited to add that I think i would kinda feel like I didn't belong anywhere if there was a separate board because Sharlet is not mild, not severe, not high functioning, not PDD, not AS.....
Because any singular issue seems to be able to pertain to any sort of autistic child regardless of who has classified them.
For instance, on this thread have been listed:
* nonverbal
* eats pec pictures
* has never sat in a chair.
* He is 5 1/2, in pullups, no bowel control
* cannot read, write and cannot recognize letters or numbers
* (can't) play with toys
* (can't) use language for any other function but to ask for a food item
Any one of those things (and often several) can exist in a child who is labeled "mild" or "high functioning", many can even exist in a child who is labeled "Asperger's". (This isn't hypothetical, I'm basing it off of people I've known.)
And similarly, debating things like mainstreaming isn't just for children labeled "high functioning" either, there's nothing about it that's specific to only one type of child. More of that depends upon the district and its policies, as well as the philosophy of the parents, etc, than on what kind of child you have. And when I read about how only "high functioning" children want friends, I know that one is wrong, it's just that if you're likely to be able to show whether you want friends or not, you're more likely to be labeled high-functioning. Don't assume obliviousness or lack of desire from the appearance (to a non-autistic person anyway) of disinterest. Same with lack of ability to read, etc. It can simply be lack of ability to demonstrate knowledge.
For myself, I've never been able to learn enough from books or websites that concentrated only on what they saw as one "part" of the autistic spectrum, because the ones that are supposedly only about "HFA" leave out important aspects of my life, and so do the ones that are supposedly only about "LFA". People like me, and parents of people like me, or even my brother (whose official label is AS but who many of the above things applied to nonetheless), wouldn't have anyplace to go if the board was split up like that. (This is one reason I have trouble in believing the designations. I've known too many exceptions, and too many of us for whom designating us one or the other is like chopping us into pieces and telling us which pieces we're allowed to refer to.)
My father is autistic and he is none of those things. One of the most devoted and loving mothers I've ever met (you can see the love between her and her child, it's so tangible) is not only autistic but was considered severely so for a lot of her life (she became pregnant through institutional rape and surprised everyone by being a good mother). I have many online and offline friends and acquaintances in the autism community who are both autistic and very involved and loving parents, many of them having more ability to relate to their autistic children because they are autistic. (My father being autistic is even one reason I wasn't diagnosed so long, I was considered "just like my dad" in a lot of ways. On his side of the family, being like this is not considered pathological for the most part.)
We are caring parents to our NT children as well
I would like to think that if a separate board was set up that any parent could post on it if there was an issue that affected their child.
I'm not sure that having a separate thread would be encouraging to a new parent who may be seeking support or info. Those first few months after dx can be sooo stressful and to have to make a decission as to how *severe* or *mild* your child is before posting may discourage a parent from finding support - I know I would never have, I am extremely shy on-line. It has taken me a year to feel comfortable posting a success story (Campout Success) and I did fret that a parent might feel sad after choosing to compare their child to mine.
I wonder how the moderator's would be able to monitor such a site - would they be te one's deciding which child is *severe/mod* or *mild*? What would be the criteria to post on such topics? Can you imagine having your post moved from the mild site to the severe site or the other way around?
I don't think a separate site would add to this forum and I think I would find less support rather than more by separating issues into mild versus severe .JMHO
mama to Sam 8yrs PDD NOS OCD ODD PPD and Alex 2yrs
GTTO:I absolutly love the way you put things, I beleive im good at typing (actually far better at typing then speaking, if anyone in this board were to talk to me, tho im quite fluint, cant truly express verybally my thoughts like typing) but you absolutly write exatcly what im thinking, but better. To designate somone as LFA, MFA or HFA is pointless cause everybody is different, everybody has different issues. I recently saw a movie of me made in 1987 (4 years old) and althought I was quite advanced and seemed smart, watching the movie for me was very hard cause I stuck out like a sour thumb (to the point that my parents in that movie rolled their eyes and shook their heads, tho everyone liked me). I truly hope nobody really saw thru me, i worked hard to appear as normal as can be IRL and if that is lost I fear so wont my ability to be self sufficent and survive in the modern world.
BLAH BLAH BLAH... sorry, i go off on tangents, especally cause I slept a total of 6 hrs in 3 days (very terrible sleeping problems the result of a night life + working 3rd shift). Anywho. Im glad me and you kinda see the world similarly, and that we can really make a difference on a board like this by giving hope, advice and our experience and letting the parents make better decisions to help their kids succeed in the modern world. That being said...
I am sorry, I know sometimes I (as a 25 year old adult) post mu successes (and failures sometimes) on here, and I did not realize so many felt this way and perhpase did not want to hear my success stories while their child lagged behind. I do use this board as sort of an outlet, perhapse even conveying information on here that I never could to anybody face to face (even my parents sometimes). But, moreso, when I see a post that very closly resembled me at some particular time, I like to throw out my opinion, or at least experience, in the hopes others can maby make better desisions, or plan ahead, or whatever. My very loving parents did alot of good things (in the 80's and 90's, when little and growing up, without what we have now days...) and some not so good things, which will echo life long for me. I want others to hear about that so their children can do even better then I did, and I did well... enough...
I sure hope everyone here keeps posting on the parents forum (and others) but will, if the general population on a board for mod to severly effected want, to stay away and post on other boards.
Perhaps more specificity in the thread title & first two sentences would help in the general parents folder? Instead of wasting the x number of spaces with "Can any body tell me what they did for....", it could have a title like: Poor Letter Recognition in Kindergarten....or something.
People who have been down that road & seen ideas to help their then 5 year olds progress academically could offer specific help from personal experience. People whose children could read books at age 4 could pop in for a word of support or brainstorm ideas, but with sensitivity to your feelings.
Feelings do get hurt on this board, but it is through pure accident or misunderstanding or typing our thoughts out too quickly. I think maybe if we all try to put our thread starters in context, the responders know where we are coming from.
On a tangent, GTTO, once again your words comfort me. I think my son Cole could be a wonderful dad and husband one day, if that's in his cards, but as parents? The stuff the docs tell some of us about expectations for our kids' futures is just goofy and depressing. Gypsy palm-reading. Thanks for sharing real world experiences.
Oh, and Woodsman - no! We want grown up input as much as you guys can stand to tell us about your lives, how you felt growing up, etc!
Its just that if a parent is feeling despondent over a certain issue that you cannot seem to help your child with (and you know it is something they really need or want to achieve). Let's pretend it is releasing an object, like a ball, voluntarily.
Then, another meaning-to-be-helpful parent - who has no idea your child is having trouble in that one spot - chimes in and says - amazingly, our little 2 year old Pierre could sink a 3 point shot on the basketball court while blindfolded and with one arm behind his back. Somebody else is stunned that their Melody is not alone, and writes in to say that she could do the same thing, but at age 7 months and with both arms tied behind her back.
Well, the original poster feels even worse because of the accidental comparison of children. The original poster is comparing them in his or her head, not Pierre and Melody's parents. Instead of getting helpful ideas and support, you feel sad.
You, a grown NBA star would be very welcome to write in about how releasing an object was not a problem for you, but such and such task was. "And here I am today doing fine."
ohhh ok, cool! I was not sure if I was part of the problem or not. Indeed, I cant place myself in their shoes, as I am not a parent, but someday aspire to be, and would definatly feel awful as well if something similar were to occure and I saw my child lagging behind.I never thought about this issue, its very good we bring it up now!Donny's mom ... excellent suggestion! I like that idea as well about a board for dual diagnoses.. And for all the grandmas - if you get any help from what we say, as far as I'm concerned you are more than welcome here! And I'm sure we will gain from your advice as well!
well almost non verbal he learnt some new words this weekend!
[QUOTE=Kanesmum]
well almost non verbal he learnt some new words this weekend!
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Fantastic!
Mona, you fit in nicely. I am a grandma. Have been raising my grandkids for many years. We have moms and dads, aunts, grandparents, teachers and therapists, autistic adults and probably some that I am missing. Thats one of the great things about this board. Lots of caring people.Hi everyone
Just a point of view from a Grandma. I value the advice, oppions and sucess stories from each and everyone!! I would miss all of you if you divided up this message board. Devin is Mod-Sev with sensory intergration disfuction. Some things will help him but some won't, But I am willing to try everything and anything suggested just incase. Who knows... something that helped a child with HFA, just might help a child with Mod- Sev Autism.
I don't really fit on a message board for PARENTS of autistic children, being a Grandma, but I am here thanks to all your kindness
Mona , Grandma to Devin 3yrs ASD / SID
We all know that ASD affect all our children differently.....I'm going to paraphrase from another parent forum I belong to.....YAMV ( Your Autism May Vary) Well....duh.... but how we SEE our situation also varies.....I hope I don't offend and upset Holly, but I have to say, based on these quotes below, I am surprised when you say your son is high fuctioning.....because my FOR ME my daughter's behaviors are what "define" her as " low " fuctioning and her behaviors aren't as scary as what you wrote here........
[QUOTE=Holly_WA]
My son is so high functioning--I feel alone.
my son can beat up our psychologist at 6yo for over an hour---and needing to be restrained, face down on cement for 30 min to calm(2 people to hold him)
The worst is when you get the crap beat out of you and choked while driving down I-5 when your little boy is only 5yo!
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So, you see, I think that we are all in the SAME boat.....yes, there are probably different sections of the boat that may be more desirable to be in.....but let's face it.....we'd all be pretty happy if we never boarded the boat at all !!!
This board does move VERY fast, and sadly posts can get lost and dropped down pages within the same day, so someone who needs help may never get it.
Different & specialized sections are great....but sometimes too many is overwhelming and the general population will just keep coming back to the main page where they know everyone checks in.
I'm very grateful I found this site, I too have days that I am bummed out that my daughter's progress isn't where I want it to be, but that is just my reality that I need to come to terms with on my own. I would NEVER EVER want a proud mom to feel she couldn't shout her good news from the rooftops and I'm confident that no one else feels that way, either, so no holding back any of you Proud Mamas !!
My son, like Allegra's Sharlet, and many other kiddos, is a mixed bag. If wewere to divide the board up by level of severity, he wouldn't fit anywhere. I
actually really like the board the way it is now, personally.
There is one other forum area I'd like to see, although I don't know if it will
happen: I'd love to see a section for parents of kiddos with dual diagnosis. I
know there are quite a few of us on here who have kiddos on the spectrum,
who's condition is complicated by a mental illness, or conditions like
epilepsy or genetic disorders. That brings a whole new dynamic into things
- different meds, different treatments, different approaches. A whole new
set of stigma, a whole new set of challenges in daily living...
JMOI still say that mild, mod, severe no matter what certain issues or deficits can be mild or severe in each kid so having a severe forum could make some people feel like they don't belong anywhere. Thats why I think Kristy's idea was great. Have forums for each characteristic social, communication, behaviors and motor. I'd be up for that.
[QUOTE=Allegra]I still say that mild, mod, severe no matter what certain issues or deficits can be mild or severe in each kid so having a severe forum could make some people feel like they don't belong anywhere. Thats why I think Kristy's idea was great. Have forums for each characteristic social, communication, behaviors and motor. I'd be up for that. [/QUOTE]
I agree with this! the forums for each characteristic would be great! my son had not to bad social skills now but he is non verbal, stuggles with his fine motor skills and his understanding of the world is really bad but he is mild/moderate autism but only in that catogory cause his social isnt as bad as some!
I'm thinking ...and I'm suggesting this to the other mods, that we set aside another forum for children with moderate to severe ASD.
I'd be glad to moderate that forum.
I've got to be honest. I get frustrated and sad at times when I read all these success stories knowing that my son is so much more disabled then others. He is 5 1/2, in pullups, no bowel control, cannot read, write and cannot recognize letters or numbers. He may be MR as well.
I left the board for a while because I was sad and frustrated with no one understanding what I was going through. But I know there are parents here with children as effected as mine is, and I'd like a place for us to meet and talk.
Any thoughts?
I know it's very difficult to hear how much further ahead some children are. My son is moderate in severity. He is also not potty trained, cannot write, read, play with toys, or use language for any other function but to ask for a food item (although I realize that is significant). He does, however, have a smile that can melt anyone's heart, and he can be a bit of a flirt
.On another note, I think that everyone on this board, tries to be very helpful, even though they have kids who are high functioning. I think they do understand more than we think they do, because they deal with a lot of the same issues that we do, just in a different level. I came to realize this through a "social skills" program that my son attends. There are children with varying degrees of ASD there, and they are seperated into 3 groups, Low, moderate, and high functioning. Anyway, just being around the parents of the high functioning kids, I learned that they have issues that are so hard to deal with. For example, their children are academically sound enough to be partially mainstreamed, but they have such difficulty in forming friendships. The moms I talk to are just heartbroken. My son doesn't have any friends, and doesn't seek them out. He doesn't seem like he's "missing" that, either, KWIM? He's content by himself, while the HF kids want friends so badly, but just can't seem to get it right. It's heartbreaking, really.
I know exactly what you are going through, NYmommy...(I am also in NY).
Although my son is making progress, he has SUCH a long way to go. I find myself wondering, will he read, write, speak in conversations, be treated with kindness by strangers, have friends? I try to pick up on the small victories, because there are many. Just this week at Target, he picked up a football, and has actually ENJOYED throwing it up in the air. He jumps up and down with excitement. It made me so happy.
I would definitely sign in to another thread, although I have been very comfortable in the general thread.
nakama
I second Kristy word by word...
Daddy
I didn't mean that I wanted my child to be severe---it was more of a selfish statement for my our ease. Wondering if it would be easier with a child who is more severe. (I have a friend with a severe child and he seems so quiet and easy-going)
Sorry if I offended anyone--that was not my intention. I was making a statement --an example. Of course I don't wish my son was more severe!! I wish he didn't have this at all!!
What's worse than having an ASD child?---Having an ASD husband!! In other words--I get ZERO support. I'm on my own! I'm stressed and overwhelmed. I know everyone else is also.
It just --ah heck. Never mind. I'm sorry. I should've just let it go, since I know you didn't mean it the way it came across. NY and VCuddy...you ladies are inspiring to me. I hope if you do get your section of the board, you don't mind if I drop in from time to time. Even though your children are more affected, you still have advice that is often helpful to eveyone here. Peace. NYMommy, I sometimes feel guity when I post about the success my son is having. It's such a fine line because we all compare - we're human. I worry sometimes that some of my "success posts" will make others feel sad if their child isn't doing the same things. At the same time, I want to show some hope for folks with wee ones who are just starting out on their autism journey. Sending mega ((((HUGS)))) I feel sort of sad by some of the success stories, too. Even just with the day-to-day with other kiddos my son's age that are just light-years ahead of my own lil guy. That sad, I also LIKE the success stories, because they give me hope that one day, maybe Jase can be one of those kids, too. :) Don't feel guilty, please, kristys...you should feel proud of your C...he seems to have come a long way. So has Shelley's Sarah, and a few others (those are the first that come to mind though). Speaking only for myself, I have to deal with the fact that Jase is moderately/severely affected in the real world, too, so why should the forum be any different? :) We're a supportive bunch, by and large, and that's more than we can say for the real world anyway. I do understand your feelings, though, Mommy, since I share them sometimes. I would sign up also for another thread. I also get depressed when reading how well other children on the spectrum are doing. I think it is wonderful they are doing so well..I really do...but my son is not. The advice I have gotten here is good, everyone seems to understand, but that said there are issues that the moderate to severe have, and it is hard to go thru..God I am not trying to put down anyone, I guess I should just say I would sign up for it..Let me know. I have felt the way you do also---but the other way around. My son is so high functioning--I feel alone. He still has issues. I've even wondered if it would be easier to have a child with severe autism. Yeh--more therapies then what we have----but just the fact my son can beat up our psychologist at 6yo for over an hour---and needing to be restrained, face down on cement for 30 min to calm(2 people to hold him)--just about wears me out!! And when it's happening several times a day, it may be totally different from a severely autistic child(I don't know). The worst is when you get the crap beat out of you and choked while driving down I-5 when your little boy is only 5yo! I think everyone thinks like this at times. We still love our kids to death and would never trade them for the world! But ALL of us have different issues with our children and we are human and wonder what life would be like "if" our child wasn't this way---or more severe or less severe.... Maybe instead there ought to be a "mild" spot where those parents can talk about faciliating social stuff, debating the mainstreaming, etc. I wonder where parents would go if you have a more conversational kid that stims something fierce and has meltdowns? Or a kid like mine that can read and speak, but converses horribly, can't pay attention, and still wears diapers? I'm happy with whatever is decided. Just wanted to point out that at least with the PDD NOS moniker, our kids can be all over the place as far as their abilities. Good luck. Well, it might be easier in terms of getting services to have a child that is more severe. I haven't had to fight either my son's doctors or the school district at any step so far, and am getting the things he needs. I wish I could afford more stuff privately, though. I think it's difficult thing sometimes, no matter what "end" of the spectrum your child is on, true. But still...wishing your child were more severe? I know you didn't mean anything by it, but that's the sort of thing that rubs me wrong. :( deleted deleted because I had remembered something incorrectly, which made my comment irrelevent. [QUOTE=Allegra]Hi Evie, I wasn't directing that comment at you, just noticing a common undertone in a lot of threads and posts lately that seems to be doing so. no hard feelings at all. Fair enough. None here, either. Thanks for explaining. deleted. We are not grandparents but are old enough to be - our son is 8 and we are in our late 40's. Still vote for new boards for the mod/sev children (like ours), or for the dual dx (our son has 5 dx) -- I don't know moderngnome, some of these ducks can be a bit quackers
I hope he's feeling alright now. Deleted Evie, That is why I deleted my post saying when ds started identifying numbers and letters. Your point is well-taken - I just tend to jump in on any posts that trigger something for me and I will try to not do that anymore. This has obviously become a very divisive issue. I really, sincerely hope you don't leave this board because of it. There is another board I occasionally go to where you have to ask permission first before joining (it's been so long I can't remember if you have to do that here as well). But, the moderators send a thing of rules and guidelines to follow when you get accepted. Perhaps that could just be an automatic thing here - where when someone is "accepted" that when they send the automatic acceptance that a list of guidleines comes along? And if people are not posting according to guidlines, the mods could put up a friendly reminder not naming names? And if the offender (like me) does it again - maybe a gentle PM could remind? Of course this is a lot more work for the moderators, I understand. I just don't want people to leave the board because of my stupid behavior. I know others have done this "bragging" stuff as well - but I was the one who did it in this post. Evie, you've been great and I'd hate to lose you here. Please consider staying and I PROMISE I will do my best to do better!
my son was dx's has a son wih mod-severe autism. She has done it all
ABA/diet /Biomed. He is 15 and in high School this year. She has given me
the most invaluable advice and information. I can not thank her enough.
My son has progressed so much because of her willingness to share what
she has learned. That being said comparisons are hard. I too want her son to
progress and look forward to what ever he accomplishes. I know he works
so hard for these things. Please note that we do care and do listen to the
things which affects all the children of this board. Believe me, life is hard
enough when you are nt. I really do wish there was something, a magic
intervention which equally helps all our children. I just want to share that
although I dont post enough, I really do care, and I am so sorry if my posts
has ever made you feel bad. I would never want that to happen.
Though those of you with success stories - please keep them coming - I love the hope you all offer too though I do totally empathize with you NYmom
My .02 Sometimes when you start a question thread, "Any ideas on how to get your child to ...." Some of the answers are not relevant because your child is nonverbal, eats pec pictures, has never sat in a chair. etc etc... While I have ONLY felt really great vibes, genuine and caring people all trying to help one another, I feel stupid replying to the thread that my child doesn't.... Kind of for the same reason that a higher functioning parent might not want to offend others. I don't want to make it seem like a who's worse off contest. It is impossible, at least for me, to keep track of "where" all our kids are at right now. So for that reason, another thread might be a good thing. On the other hand, I think Leanne said it well that even when divided into high, mod and severe categories, the differences are astounding. So, maybe not. Oh I can't make any decisions, have the cold from hell. See what the other mods think. By the way, I love hearing success stories and new accomplishments. Group hug. Push post, or not push post or not................. Badgers Rule !!!And I also wanted to add that when I read about any of y'all's kids accomplishing something - now matter how small it may seem in the strict sense of things - I really celebrate it
Though I still agree with having a new folder
pertaining to more severely affected kids. Everyone needs to find the
support they need here!
That said, I would still like everyone to congregate on the parent's board.
I would hate to miss out on wisdom and advice from all of you!!!!
My son is high functioning, but i have gotten such wonderful support and
advice and warmth here from parents of kids all over the spectrum!
There is such a huge intersection of behaviors and issues we all deal with.
And Kristy, I don't think you should ever feel guilty about sharing. None
of our children need apoplgizing for. They are who they are.
And those of you who feel you are struggling with some different issues,
and need more support--I think it's great that you spoke up!! Everyone
affected by autism deserves to feel welcome here!
well, I assumed that if someone asks what age??? that they are asking what age???
I honestly am only just realizing how much of a problem people have with all this. Frankly I'm wondering where it has come from because it seems to have suddenly become all about comparing our kids??? I'm kinda stunned by all this actually.
[/QUOTE]
Mommy to Abby Grace 3yrs old PDD/NOS
Evie, I'm sorry you feel you need to leave the board. I have seen some of the posting behavior you're describing - and I think we need to remember that we don't have the benefit of tone or facial expressions as people are posting.
I imagine that would help in many, many cases of misunderstanding. (((((Hugs)))))) - I try to be a sensitive poster - and censor myself...
Allegra - I agree... I'm saddened by this thread. I try not to compare Bug (though, I guess it is natural, as a parent, to want to do so). Though, when someone asks for advice - I agree - you're not always going to get the answer you want - people are going to share their opinions...
I see both sides. Perhaps a moderate/low functioning board would be a good idea. That way, if a parent is feeling sensitive that day, she (or he) does not have to face posts like, "My kids played soccer today - and it really went great!" or whatever (using one of MY examples, not anyone elses).
That said - it makes me feel sad and a bit sensitive to posting here. Frankly, those of us with Higher functioning kiddos still struggle - even if it isn't in the same way. We already don't belong exactly in the NT world - but we struggle and try it regularly - just in case (for example, we took our kids to the zoo a few weeks ago - my Bug freaked out in the petting zoo - just started screaming, "I want to go home! I want to go home!" over and over, while my daughters were fascinated by the ducks and goats and would have stayed all day... So, we're in the petting zoo with one four year old that is having his own Autism Field Day - and two three year olds that desperately want to pet something). Yes, I know how lucky I am that he is higher functioning - but no, he is not NT. What kid doesn't like a petting zoo???
We already face critics everywhere we go - I have family members (my own MIL!) that don't believe Bug's diagnosis. We are criticized for "labeling" our kids. We are made to feel they are just spoiled and badly behaved - and that we suck as parents. We don't really fit in at Birthday parties or play dates (if our child is lucky enough to get invited). Now we're being told we don't fit in here, either. Even though we carry the label - people with moderate/low functioning kids don't feel we belong.
So, that leaves us hanging out with no support. Great, Bug learned his letters when he was 18 months - but he has never made a friend or been invited to a play date. He failed out of NT preschool. He may be the highest functioning kid in his special ed class - but he can't attend typical preschool. So, we're just on our own. Hovering between both worlds, without acceptance in either place.
Maybe separate boards is a good idea.
I read everyone's post. They all make sense. I to compare even though Abby is considered High functioning. There are a multitude of symtoms in Abby that seem moderate some days but maybe a little more severe other days. I vote that it stays the way it is because who knows what path any of our children will go. Nothing is for sure.
It must be hard sometimes to hear the accomplishments of other children but it is for all of us in different ways. I for one want to hear everybody's story.
Mommy to Abby Grace 3yrs old PDD/NOS
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