Annoying things people say about your ASD/ADHD dc's behavior...

[Tiramisu]

In terms of inappropriate behavior--not to derail--but I have a question. 

 

I know pee, poop, and fart talk isn't uncommon with kids but at times it has been out of control in our house, and in public. And I have all girls, besides dh. But now a certain dd who is old enough to know better is calling people penises and nipples in front of her younger sister and others. I know goofy is goofy but you would think by a certain age they would be aware of where certain things can be said, if at all. 

 

Is this a little off or is it just me? FWIW, I don't think I'm overly fussy about bodily functions compared to other people I know.

[Tiramisu]

FWIW, we got something similar from our neuropsych - he didn't want us to waste our money until the medical angle was handled (and, coming from a different part of the country, he is agreeable to pans/pandas).

 

On the treatment angle, it gets very complicated very fast.  IMO it isn't true that there are no treatments for viral causes, but what to do depends on so many things.  Controversy-wise, there's plenty to go around, but the general big picture of immune issues causing neuro and neuropsychiatric symptoms is very slowly becoming more accepted.  It depends on who you ask.  The original PANDAS diagnosis, which was too narrow at just strep, was spearheaded by Dr. Swedo at the National Institute for Mental Health.  I think her angle might still be a little narrow but at least she's trying, running trials, etc. (she's done a lot of the IVIg stuff)

 

I will see what I can find on the protocol and I'll PM you.  For a public service announcement, it's worth putting here that SSRIs can be a very tricky thing with PANS/PANDAS patients.  One study showed that there's double the risk of overreaction/mania, around 13% IIRC.  I will try to find the link...  The recommended approach to a trial of SSRIs is to start at a tenth of an ordinary dose.  (Personally, my main interest would be the neurogenesis angle from particular SSRIs.)

 

Yes, I heard that about SSRI's. It makes me extra-uneasy.

 

I'm supposed to be starting an AHDH med trial with another kid, but I'm waiting until dh can be home all day to try it for the first time. I'm a med wimp.

[wapiti]

In terms of inappropriate behavior--not to derail--but I have a question. 

 

I know pee, poop, and fart talk isn't uncommon with kids but at times it has been out of control in our house, and in public. And I have all girls, besides dh. But now a certain dd who is old enough to know better is calling people penises and nipples in front of her younger sister and others. I know goofy is goofy but you would think by a certain age they would be aware of where certain things can be said, if at all. 

 

Is this a little off or is it just me? FWIW, I don't think I'm overly fussy about bodily functions compared to other people I know.

 

I have read that in some cases this sort of thing can be a sort of OCD compulsion and/or a tic, i.e., they know it's inappropriate but are compelled to do it anyway.  I'd be explicit in your instruction on this topic and see whether that helps.

 

(sorry OhElizabeth, I don't mean to derail what has been an interesting thread!)

[Tiramisu]

Please don't stop this wonderful thread because of my rabbit trails. wapiti wisely moved to pm. :)

[Crimson Wife]

 

About the medical stuff, the doctor said that some people don't believe PANS (pediatric acute-onset neuropsychiatric syndrome) exists and if it does there's not treatment if it was triggered by a viral agent, which would be different if it were strep-induced. The treatment would be therapy and anti-anxiety/anti-depressants like SSRI's.

 

The bolded is a disputed statement. Dr. Michael Goldberg out of UCLA is one researcher studying what he calls Neuro-Immuno Dysfunction Syndrome: http://www.nids.net/

 

I read the "Myth of Autism" book and found it interesting even though my little one does not fit the NIDS profile.

 

[Lecka]

In my experience with ABA, they do have to manage your expectations.  

 

This is for two reasons, mainly.  

 

One, people will quit if they do not see progress they thought they would see.  They get disillusioned and go elsewhere.  They hear about another child who improved in a certain way and want that improvement.  

 

Two, they have to tell you sometimes that your child does not have foundational skills in place to allow them to have a goal (in a short-term way) that you want them to have.  Then they have to explain to you what the steps are to reach the longer-term goal and why you *are* working on it, as far as getting ready long-term, but they can't directly work on it b/c it is just not an appropriate goal.  

 

I also think -- I do not use splinter skills in a pejorative way.  I forget that it is used like "it is meaningless, it is some random high skill, but it doesn't matter."  I use it more like -- "it is really good, it is great, but it is part of a mix of highs and lows."  So I am more disagreeing with an idea that the level of the highest skill represents the child's "true potential" and then other lower skills must be brought up to that higher number.  

 

I think -- that can make sense with some *learning disorders* where you ARE kind-of told -- "you need to remediate and accommodate these learning differences so that your child is not held back unnecessarily."  

 

But that is where a *learning disorder* is not the same as autism.  It is the same if you take that huge holistic view of dyslexia where the strengths and weaknesses are fundamentally intertwined.  But if you are only looking at "teach the child to read" kinds of things, you are not necessarily taking the whole child into account, you can just focus on remediating the reading.  

 

But I think with Aspergers, the "mix of strengths and weaknesses are fundamentally intertwined" and I think it is a mistake to put the learning disorder/remediation view onto it, where you end up with 10 things that all look like "teach the child to read" and you are left looking for 10 Bartons, so that you can "do Barton" for everything.  But I do not think there is a Barton for everything, and so there is not the promise that I think is mostly a true promise with Barton, that if you do Barton, your child will read.  (I do know it is not going to work as well for everyone, but it works that way for so many.)  

 

Even Barton makes no promises for a child's handwriting.  We are just lucky that handwriting is not so important in the scheme of things, and typing is an option.  B/c we do still have a promise of improvement from maturity.  We do not have a promise for any improvement that would come from a therapy or from me doing something that would cause him to have better handwriting.  But that does not make anyone a failure, we can just move on with it, it is fine.  It DOESN'T make me fatalistic to say that.  I am not giving up.  I am just saying -- my son (older here) should continue to have every opportunity and I will do everything for him, but if I can't make him have better handwriting by an action I take, then how does it do me any good to think that this is a fault?  

 

I DO also think this is an intrinsic part of my son and part of what is good about him and makes him who he is.  Taking that big-picture dyslexia view.  B/c it is intricately bound up with all of those other things.  It is part of the package deal. 

 

To compare with my cousin -- there are people who don't want to take a holistic view.  They want to take the things about Aspergers that they like, and call that "where he should be, who he really is."  The other parts are viewed as "this is so inconvenient, this is so bothersome, this is keeping him from his true potential."  But if he didn't have Aspergers, he would be a different person.  He would not be as interesting.  He would not have his memory.  He would not have something interesting to add to any conversation.  He would not have his sense of humor.  So if I think that his entire personality is "all" Aspergers, which I do, based on thinking Aspergers is a holistic thing, then I will not try to divide things up.

 

Of course for therapy you have to identify and target weaknesses, and strengths, too.  If you are choosing what to work on, you have to take both into account.  But as a *parent* you can have a *parent* view of a child, where you do NOT have to look at your child through that light.  

 

Or, yeah, sometimes you need to look at your child through that light and think about things in the same way a therapist would.  

 

But just b/c it is good to look a things like that at certain times and for certain purposes, there is NO REASON to feel obligated to have that kind of view of your child all the time, when you are just a parent, when you are just living life.  You can just think about it when you are setting goals or thinking about your plan or how you will do things.  Then -- yeah, it is important, it is useful.  

 

But the rest of the time ----- you do not have to go around day-to-day thinking that way.  It is taking a clinical view and it is not the way to enjoy your child and get to know your child.  

 

Just b/c that is how you might talk about things when it is a formal setting with people who are SUPPOSED to be taking the clinical view as their job, does not mean "oh, this is a good way to be all the time."   

[PeterPan]

Lecka, I want to chew on that a bit more.  That's a really good point about the difference between therapist mode and Mom mode and giving ourselves permission to be in one or the other.  And I think you're right that it's therapist mode that says let's find another way to work on this, and Mom mode says you're ok as you are, I accept you.  As homeschoolers we end up needing to be both and to balance those.  And it's interesting to me how balanced therapists sometimes are.  Like when I was running something by the OT yesterday, she says that's ok, that might have been that other child's progress, but you're meeting YOUR CHILD right where he is.  I had only been thinking of it in terms of the end goal and my failure to help him, and as a therapist she had a more patient view of we meet them right where we are and we move forward.  

 

So even our therapist mode can get skewed and guilt-tripped in a way therapists wouldn't do to their clients, lol.

[AMJ]

FP, I hadn't thought of it that way.  You've given me a lot to chew on.  As a weird sort of question, does a grade adjustment slow down some of that, or is it more just that people see a certain size/age of child and just have expectations?

 

Did you have a pat phrase or a way you handled it?  

 

A lot of times it's the perceived age of the child.  I say perceived because people expect children to behave according to the age people think they are, and so often they are quite wrong about the child's age.

 

My eldest niece has always been large for her age and has a very round face.  She will likely be close to 6 feet tall, if not more, by the time she finishes growing.  Throughout her childhood people thought she was YEARS older than she was and would complain "sociably" to the side to me (whom they assumed was just another mom in the crowd) about her "inappropriately childish" behavior.  I would tell them that was my 5- or 6- or 7-year-old niece and point out that she was behaving the same as their own children of similar age.  People also assumed that she was fat (due to her size and round face).  I would point out her parents to them (both very tall people) and talk about whichever sport she was in at the moment.  (If the commenters had ever had a reason to touch her or shake her hand they would have quickly realized that all of that "fat" was muscle.)  My niece is now a very popular and curvaceous teen whom no one thinks of as fat anymore.

 

Keep calm, keep a straight but serious face, and call folks on their comments.  Most people will back down once confronted.  Do it calmly, logically, and objectively, and non-judgmentally point out their errors.  It leaves them no defense, and you don't come across as apologetic or defensive.

[AMJ]

 

  So we did opt out of social settings for awhile. I understand the desire to make sure your child gets what he needs.  I highly recommend working with trusted therapist to see that it happens. But also be aware that other kids are always going to do what you'd wish or expect. 

 

Opting out of social situations is quite valid.  Some kids just do better in pairs or smaller groups, for a wide variety of reasons.  Also, I have found that my kids' social skills advanced far more when they were around people of a wide variety of ages, and not so much when they were among kids only in their "age group".  Contrary to what some of my in-laws initially worried about when we switched to homeschooling my kids' socialization hasn't suffered.  I think it has improved.

[AMJ]

I hadn't really thought about it this way, but I've seen moms that are like you. I think I am getting there.

 

The hardest part was having an UNdiagnosed 2e kid, and then to get a spectrum diagnosis at age 9. Lots of years of people undermining my confidence. It was ugly. I was demoralized. I was often considered unfit or the source of the problem.

 

Anyway, I am more motivated to come across as confident--thanks.

 

I totally get it.  My eldest wasn't evaluated by a competent neuropsych until 5th grade, and by then she (and we) had been blamed for quite a lot.  Her diagnoses were eye-opening; some of them were completely unexpected, and the severity of them all completely floored us.  That was the last straw.  At the end of her 5th grade we started homeschooling.

[kbutton]

http://www.huffingtonpost.com/shawna-wingert/things-i-have-learned-since-my-son-was-diagnosed-with-autism_b_7691824.html?ncid=fcbklnkushpmg00000037

 

Saw this on FB today, and it seems like it goes with the general discussion.

[Junie]

This discussion has been very helpful.

 

I work in a special needs Sunday School class occasionally, and by the looks on parents' faces, I can tell that I have unintentionally crossed "a line" a time or two in how I worded something.  I'm generally not in the sn loop, so I don't always know the proper/best way to say things.  (btw, I would never, ever use the r word.)

 

I would love if someone would help me with this, but I don't know the right questions to ask.  

 

Most of the kids in the class are autistic.  One has Down's Syndrome.  One of the moms especially has been very helpful, but I don't get a chance to talk to her w/o her ds nearby, and I don't always know what is appropriate to ask when he is right there.  I don't know how much he understands about his own sn.

 

Anyway, I'm enjoying the discussion.  If I think of the questions that I want to ask, I'll start a new thread.  Thanks!

[PeterPan]

Junie, what I like best with people who work with my ds is when they smile with him.  That to me shows that you enjoy working with him, in spite of his quirks, oddities, interruptions, etc.  I DON'T like it when people come up to me and try to ask intelligent questions, because they have no clue.  Don't make suggestions, don't ask medical or prying questions.  How can I pray for you?  That's a good question.  Can I bring you a dinner this week or take you out for coffee so you can have a break?  Can my dd sit for you so you can get your hair cut?  Those are good questions.  

 

I love it when people smile with my son, because, well because I just do.  I would be worried if he weren't making them smile or they couldn't enjoy being with him.  I think when you smile and give love to someone's child like that you've given the parent a gift.

[Junie]

Junie, what I like best with people who work with my ds is when they smile with him.  That to me shows that you enjoy working with him, in spite of his quirks, oddities, interruptions, etc.  I DON'T like it when people come up to me and try to ask intelligent questions, because they have no clue.  Don't make suggestions, don't ask medical or prying questions.  How can I pray for you?  That's a good question.  Can I bring you a dinner this week or take you out for coffee so you can have a break?  Can my dd sit for you so you can get your hair cut?  Those are good questions.  

 

I love it when people smile with my son, because, well because I just do.  I would be worried if he weren't making them smile or they couldn't enjoy being with him.  I think when you smile and give love to someone's child like that you've given the parent a gift.

 

Thank you.  This is helpful.

 

I am not generally a smiley person (even with my own kids), so I will try to be more aware of this. (Even with my own kids.) :)

[kbutton]

You probably saw upthread that I am not always sure on the teacher end how to deal with this either, but I do try to mention things to parents (not just of SN kids), things i've noticed that are cute, funny, endearing, or just something tangible and intelligent that would connect with them. Johnny sure liked x today. Does he do that kind of activity at home? 

 

One mom I know whose SN kids are complicated but very interesting when you get to know them was totally stunned when I stopped her one day and told her that i like working with her kids. I told her I have a SN kid myself, and I didn't downplay that it can be hard to get to know the "real" kids in a group setting where we have to keep things moving, and they have their own way of doing things. Even in our church where those kids are loved, I could see the surprise all over her face. In addition, the kids have surrogate grandparents that are involved with them. They are often very willing to converse if I ask questions or make positive comments. I try to keep my observations outright positive or simply neutral, like the example with things i notice they like to do.