When your child knows how to get to you. WWYD? WDoYD?

[Petrichor]

So, DS has been figuring out how to get to us. Again. He used to have some way to annoy us, and we somehow figured out how to ignore him, and he stopped. 

 

I can't figure out how to ignore him this time. Or if there's something else I should do.

 

Background: he talks a lot. The endless talking about whatever he is fantasizing about is annoying, but he doesn't do it TO annoy me, and I try not to let him think it annoys me.

 

#1: Fart sounds and the related are about 1/3 of what he says. That's why I mentioned the endless talking. 1/3 of the time, it's just noise, especially rude noise, and it drives. me. nuts. I'll partake in the potty-talk with him for a bit, but it's like he doesn't know how to turn it off in public/after a bout of it. 

 

Actually, the talking wouldn't bother me so much if he was able to focus on what he was saying. It's not rare for the random noises to mix in with whatever else he is trying to tell me about.

 

#2: Rudeness, not just to me, but to others. Fart sounds, loud screaming sounds, etc.

 

#3: "I don't care" Maybe he says this because I tell him he needs to care? Usually said in response to "time to do x" or "don't hurt your sister/other person" or "we don't break grandma's x"[after he broke something.] I guess this is a major component of the rudeness thing, but it's a major part of the rudeness.

 

When we need to go somewhere, he refuses to go. I can't make plans for him or me or us anymore. I can't take him shopping. It's what he wants or nothing. I'm just so tired of it.

[Jean in Newcastle]

He's 8?  Is he NT?  This doesn't sound typical for his age.  If he's neurotypical then he needs to have boundaries on acceptable behavior.  Actually even if he isn't neurotypical he needs boundaries but how to teach those social skills will take longer and will need more scaffolding etc. 

 

As far as caring goes, a lot of kids use that line when they don't know how to fix the problem.  So model how to make an apology.  And require age-appropriate  restitution for Grandma's belongings.  (It may be a portion for a large ticket item.  Or he might have to do chores for x amount of time for a smaller item.) 

[Petrichor]

He's 8 and ADHD, but otherwise NT, as far as I'm aware. 

 

He's so much like how I was as a kid. 

 

If I was told to apologize, I couldn't do it, because I figured that the person would think less of me, my mistake would be real, and I would be officially at fault. If I was told to do something else, I didn't want to do it, because I didn't think of it first, and I wanted to be independent and original.

 

He seems to do the same thing. I try explaining to him that it's ok to apologize. It's good to apologize. The right thing to do is the right thing, it doesn't matter if it seems too late, still do the right thing. But it doesn't seem to stick. Maybe I just need to carry on, hoping the point will stick by adolescence? Is that what I'm supposed to do? Just keep on doing what I'm doing without any hint of success, and just hope that somehow he turns out to be a normal human, eventually, and just lock him away from everyone else in the meantime? [sorry, I'm a bit emotional right now. oh, also, I'm not shouting at you, I'm just shouting into the air.]

 

I do [try to] make him do the chores and apology note for damaging things. He usually refuses, and is punished until he does it. But sometimes, he decides he "doesn't care" about the punishment and learns to live without the thing that got taken away. 

 

 

 

Any tips on teaching certain social skills? Is there some sort of book of lessons or something? Because he does need that scaffolding, and I struggle to provide it. 

 

When he gets too out of hand, I tell him he's to stay next to me (like tomato staking) but he annoys me to the end of the earth to try to get away.

[HomeAgain]

I don't know that there is a right answer here.  Much of what you described would elicit a clear, "you're not ready to be part of a social situation right now.  Leave the room. When you are ready you may come back." and I would steer my kid out and up to his room.  And I would repeat at every.single.infraction until we got to a point where he understood the parameters and I could give a warning to stop the behavior rather than resorting to removing him.  In the case of a particular obstinate child I'd remove myself/those with me.  "No.  We will not allow ourselves to be treated that way." and I'd head out to a room with a door.

 

But that's my house and definitely NT kids.  Mostly.  My youngest is like living with the personality of Sheldon Cooper.  He understands cause and effect more than he understand emotional response.  For him, as long as there are clear-cut rules, he's fine.  It's if I get flexible that he has issues.  I can't say this is fine HERE, but not THERE.  Or set a time for silliness.  It has to be all or nothing.

 

[Innisfree]

Honestly, this sounds like an evaluation may be in order. You say he has ADHD. How did he get that diagnosis? Did he have a complete evaluation, or did a pediatrician give the diagnosis?

 

The business about not being able to leave to go do things used to be a *huge* problem with my dd12, who is on the spectrum. "I don't care" is a pretty familiar phrase here, too. The noises and talking sound like they might possibly be stimming or maybe tics. The lack of social awareness and appropriate limits is also concerning.

 

There certainly are social skills/social thinking materials available. You can look at Michelle Garcia Winner's publications online; she has a lot for his age group. But I'd also strongly recommend ABA if an evaluation turns up more than just ADHD.

 

I always worry a bit about suggesting an evaluation, because a diagnosis, or even just the possibility of one, can sound overwhelming. But he's the same great kid regardless. The diagnosis gives you tools to solve problems. At least, that has been our experience.

[PeterPan]

Socialthinking - Articles

 

Don't know who diagnosed him as ADHD, but you've got repetitive behaviors, non-compliance, and enough challenges that you ought to be screening for more. 

 

Here's the Social Communication Profiles article on Social Thinking.com ST is a big name place to look for materials and training. Around here, schools send their people for training. I've gone to a number of workshops. It will cross diagnoses, so you'll find him in there and find resources.

 

Yeah, update your evals. My ds does that stuff and he's on the spectrum. 

Edited November 8, 2017 by OhElizabeth

[Petrichor]

He hasn't been evaluated completely. He's seen a psych, but after months and $$$ I/we got less out of it than I/we had reading articles about parenting. 

 

ADHD has been diagnosed in the family (and I was diagnosed with it) and he matches the characteristics of it pretty well. 

[Petrichor]

How do you get an evaluation? Do you have to go through a pediatrician? I'd rather not, if I don't have to. 

[Jean in Newcastle]

Go to a neuro-psychologist for an evaluation.  Insurance might cover it. 

[Okra]

When you speak of inappropriate sounds in the middle of a regular conversation, that makes me think of tourettes.

 

Could the inappropriate sounds be verbal tics?

 

Sometimes the urge to tic is very great, maybe that's why he didn't care about appropriateness?

 

Just a thought.

[SparklyUnicorn]

 

 

He's so much like how I was as a kid. 

 

 

 

We get the children we deserve.

 

:lol: :lol:

 

Totally kidding, but sometimes my kids do stuff that annoys me and I think...oh damn I was the same way I guess pay back is a bee...

[Petrichor]

We get the children we deserve.

 

:lol: :lol:

 

Totally kidding, but sometimes my kids do stuff that annoys me and I think...oh damn I was the same way I guess pay back is a bee...

 

I know, right? My mother never fails to repeat that phrase...

[Petrichor]

When you speak of inappropriate sounds in the middle of a regular conversation, that makes me think of tourettes.

 

Could the inappropriate sounds be verbal tics?

 

Sometimes the urge to tic is very great, maybe that's why he didn't care about appropriateness?

 

Just a thought.

 

I don't think it's really like that. More like, he loses his train of thought, or wants something more exciting to do. 

 

But it's entirely possible, now that I'm thinking about it.

[ealp2009]

You might want to look into Collaborative problem solving. Look up the think kids website. The idea is that kids do well if they can and if they are not doing well then something is getting in their way. It may sound touchy feely but there are some kids that you can’t discipline/punish/ reward into good behavior and CPS is evidence based and can be used regardless of diagnosis.

 

 

Sent from my iPhone using Tapatalk

Edited November 8, 2017 by ealp2009

[hornblower]

To me this is an attachment problem. 

"There is little we can do with a child, however, that is not predisposed to attend to us, to look up to us, to depend upon us, to ask for help, to take the cues from us or to want to be good for us. These inclinations are not inherent in a child`s personality nor the result of skilled parenting. Rather, they are the fruit of a good working attachment to the parent. When the attachment is weak or lacking, these predispositions will be missing in a child. When this is the case, parents are rendered impotent and parenting becomes difficult, contrived and unnatural. Parental impotence is becoming a common affliction but rarely is it recognized for what it is. We are more likely to assume that we lack the necessary skill or that we have a difficult child. "

from http://neufeldinstitute.org/course/power-to-parent-i-the-vital-connection/

Work on your attachment. Quit punishing. Start attaching. An NT child that is well attached will still be naughty and misbehave (because they're kids!) but will fundamentally want to please and be with you. That link above takes you to Gordon Neufeld's website where you can buy books, take online courses or buy DVDs of course presentations. 

 

[bolt.]

I'm presuming that you haven't been a lax parent. Therefore I assume you have tried various strategies to try and make this stop -- like, you know, telling him to stop it, teaching him what to do instead, having consequences, and the rest of the basics.

 

If you've been trying, and you still have this behaviour, and if you are reading accurately that he is genuinely motivated by a desire to be annoying... I think you are being well advised to think through the ways he might be struggling neurologically and/or with attachment.

 

In that case, there are a lot of well-researched techniques that are not basic parenting. They are more like behaviour therapy. You can get a 'light' version of neurologically informed parenting from "no drama discipline" as a starting point. Beyond that, I think you should reach out for some professional tips and support.

[gardenmom5]

  we somehow figured out how to ignore him, and he stopped. 

 

 

 

Background: he talks a lot. The endless talking about whatever he is fantasizing about is annoying, but he doesn't do it TO annoy me, and I try not to let him think it annoys me.

 

#1: Fart sounds and the related are about 1/3 of what he says.

 

#2: Rudeness, not just to me, but to others. Fart sounds, loud screaming sounds, etc.

 

#3: "I don't care" Maybe he says this because I tell him he needs to care? Usually said in response to "time to do x" or "don't hurt your sister/other person" or "we don't break grandma's x"[after he broke something.] I guess this is a major component of the rudeness thing, but it's a major part of the rudeness.

 

When we need to go somewhere, he refuses to go. I can't make plans for him or me or us anymore. I can't take him shopping. It's what he wants or nothing. I'm just so tired of it.

 

how old is he? an adolescent perhaps?   is he your oldest?

I'd consider wearing earplugs.   (I did that with my mil once. she can so drone. the silence was glorious.)  when he has something worthwhile to say - he can let you know.   doesn't' matter if he's aware of it or not.  other people are. is he doing this in public?

 

#1 - he can do that in his room.    as soon as he starts - "you can do that in your room.  you can come out when you're done."  (if needed, I would start taking away privileges for the day to encourage him to go.)

 

#2 - zero tolerance.  rude is rude is rude.   (different story if he's with his adolescent buddies - they're likely doing it too.)

 

#3 - now I'm positive he's an adolescent.    telling him we don't break __after he's just done that, is like locking the barn door after the horse escaped. a bit late.  he needs to clean  it up, apologize to grandma, fix-it, etc.

 

when my kids would say "I dont' care".   my response was - I didn't ask if you cared.   you need to  ____./   - that is irrelevant, you need to ____.

 

telling them to 'care' is too nebulous for this age.  be specific about what action they need to take.

[Shellydon]

If he is neurotypical, he would lose everything he owns.  His room would have a bed and 4 changes of clothes.  Everyday that he demonstrated appropriate behavior, he could get one thing back.

 

That said, his behavior does NOT sound neurotypical to me and I'd have him evaluated.  I'd want someone to check for Autism, Social Pragmatic disorder and  Auditory Processing Disorder.

[Innisfree]

To me this is an attachment problem.

 

"There is little we can do with a child, however, that is not predisposed to attend to us, to look up to us, to depend upon us, to ask for help, to take the cues from us or to want to be good for us. These inclinations are not inherent in a child`s personality nor the result of skilled parenting. Rather, they are the fruit of a good working attachment to the parent. When the attachment is weak or lacking, these predispositions will be missing in a child. When this is the case, parents are rendered impotent and parenting becomes difficult, contrived and unnatural. Parental impotence is becoming a common affliction but rarely is it recognized for what it is. We are more likely to assume that we lack the necessary skill or that we have a difficult child. "

 

from http://neufeldinstitute.org/course/power-to-parent-i-the-vital-connection/

 

Work on your attachment. Quit punishing. Start attaching. An NT child that is well attached will still be naughty and misbehave (because they're kids!) but will fundamentally want to please and be with you. That link above takes you to Gordon Neufeld's website where you can buy books, take online courses or buy DVDs of course presentations.

 

 

 

Quoting because this is a good first step whether or not he's neurotypical.

[Innisfree]

He used to have some way to annoy us, and we somehow figured out how to ignore him, and he stopped

An ABA primer for you:

 

Behavior has a purpose. It could be to

1. Get something;

2. Escape something; or

3. Get attention.

 

Sounds like before, he wanted attention. If that is the purpose of the behavior, and you ignore him, eventually the behavior will stop (though it may temporarily increase first as he tries *really hard* to get that attention). (This may not be conscious for him.)

 

So, this time, you can try to figure out what that behavior gets him. Is it attention again (you play along with potty talk for a bit)? Or something else?

 

Give him a better way to satisfy that need. For example, guaranteed attention, doing something he likes and you don't mind, when he does xyz. And stack the decks to make sure that happens often. Keep it up (weeks/months), and see if the undesired behavior goes away.

 

But, if the noises are really a tic, this may not work. For stimming I'm not sure. This hasn't been one of our issues.

[TravelingChris]

Okay I have three ADHD kids, am ADHD myself, and none of us have or have had most of the behavior you are describing.  My one kid had a hard time with transitions but it wasn't as extreme as you seem to be describing.  I think I would have gone nuts with screaming/fart noises/etc.  My kids tended to talk to much but not in nonsense ways and not in screaming.  Because of that, I would suggest further evaluation like others have suggested.  A neuropsychologist is the person who can figure it out.

[PeterPan]

ADHD and ASD used to be exclusive diagnoses, ie. they didn't do both. Now they do both. So nobody is disputing that you have ADHD or that your dh does or that your ds does. We're just saying you need to get some in-home observation and enough people seeing the behaviors that you can get more detailed forms filled out and get it figured out. There are quite a few questionaires they use for autism, the new social communication disorder, ODD, etc. that can tease apart things. GARS is ok, but there are some much longer ones that are really good. (ADI-R, BASC, Vineland, etc.)

 

Neuropsych may or may not be good. Autism/ODD/SCD really can be its own separate thing with another 6+ hours of evals just on that one question. When a neuropsych (removing my not nice words for them, because I have some not nice words) or any psych reduces it to impressions or one outdated form or blows you off, then you don't get answers.

 

Like I went into the first neuropsych with my ds saying why does he fly his arms like a bird, why does he recite paragraphs from books, why does he walk on his toes, why does he... and the (again, removing my really not nice words about donkeys) goes "because he can." Idiot. And the guy ran an outdated GARS not even keyed to the then current DSM and blew us off. Within the next year multiple, multiple people then agreed it was autism.

 

Your easiest move right now, if you can get funding or a referral, is to a behaviorist, a BCBA. That's what finally helped us, because we got the person in the home and let her have enough time observing him, in his native environment, where he was just being himself. 

 

The other thing that can happen, and I'll just be straight, is if one or both of the parents themselves miss things, then they're not going to be very helpful at marking behaviors. There have been studies on this, and it's what happened with us. My dh does not miss things socially, and HE was the one that filled out forms showing enough that ds scored as having autism. *I* can't see that much. Those behaviors just don't raise my eyebrows, don't get noticed by me, don't register the same to me. Again, that's why bringing in people into our home really helped. Then I had somebody trained to look at behavior who could work with him enough to say what was going on, really basing it on lots of hours, not just cursory impressions. And she was able to learn enough actually to start HELPING us. She said things on the very first day that started helping us. 

 

Also I've gone to a lot of the trainings, any that come to our area. Social Thinking, Zones of Reg, this stuff is really good, really worth your money.

 

Edited November 9, 2017 by OhElizabeth

[PeterPan]

Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism)

 

This is a terrific book.

[gardenmom5]

If he is neurotypical, he would lose everything he owns.  His room would have a bed and 4 changes of clothes.  Everyday that he demonstrated appropriate behavior, he could get one thing back.

 

That said, his behavior does NOT sound neurotypical to me and I'd have him evaluated.  I'd want someone to check for Autism, Social Pragmatic disorder and  Auditory Processing Disorder.

 

testing would NOT be with your pediatrician.    (I attended a lecture by a doctor who runs an ADHD clinic.  the only kids they see, have been referred to them after having been diagnosed ADHD by their ped. . . he said fully HALF!   aren't.)

 

My youngest is ASD  (with touches of ocd, add, and odd.).  He also has CAPD.  And has been treated for visual development  lags.   (developmental pediatric OD.)

for the former - it was a battery of multidiscipline tests at the child development center attached to the medical school.  the children's hospital also has one.  that included   PTs, OTs,   (a waste of time and money for their audiologist.),  SLPs, and pscyhs. the whole mutliperson  team for each field being led by a developmental ped.

 

testing for auditory processing disorder generally wont' even begin until seven at the *earliest*.    MUST be done by a qualified audiologist.   they *have* to cooperate. My son was nine, and it was a real struggle for him.  testing is over two days. The first time was an hour and a half. His hearing was thoroughly tested to rule out any organic hearing problem.     Only then, are the second series of tests done to determine how the brain is processing sound.  this was a hard test, and really stressed  him.   again - he was nine.

there are three kinds of CAPD.  they each have different causes and effects.   there is a lot of overlap between capd, asd, adhd, etc.

 

 

if he's doing stuff specifically for attention - start giving him extra attention when he's doing what you want him to be doing, or at least stuff to which you do not object.   make an extra effort if you must.

 

 

eta: he's made huge progress with a ND who works exclusively with these disorders. 

He has done therapy for the CAPD with an audiologist - until it got so hard he utterly refused to cooperate.

He is now also seeing a pediatric neurologist that specializes  in this area.

Edited November 9, 2017 by gardenmom5

[Petrichor]

Please be kind, because I don't think I can handle anything more right now.

 

I took DS to the ped, in the hopes that they could give me a referral for a dev ped, and that could lead to neuropsych testing.

 

The ped tried multiple times to steer me away from a path that leads to neuropsych testing. Because they know I wouldn't want to medicate. But I would like to know what is going on. 

 

Also, apparently, uttering the word "autism," as a possibility in a list of other things, in an effort to explain my concerns is forbidden and can summon the disorder to appear, akin to naming "he-who-must-not-be-named." 

 

Ped thinks he's totally normal/NT 8yo. Assumes I'm just doing it wrong. But it shouldn't be like walking on eggshells. I don't think NT 8yos have tantrums 5 times a day when the parents are actively trying to avoid tantrums.

 

Ped referred us to a psychologist for an evaluation. I'm not sure if it would be any different than the last time we tried a psych. Last time, I was concerned about a new behavior he was exhibiting, where he would threaten to kill me/dad when upset with us/tantruming. I was worried he might be serious/want to follow through on the threat, but it's been 3 years and he hasn't. And a month or 2 of weekly visits to the therapist (3 yrs ago) was less helpful than what I had already been doing in reading parenting articles online. And $$$.

 

Does it technically, for insurance, count as a referral if they just write down a phone number and told me to call? They didn't give any paperwork. Does that mean I could have just called the therapist to set up an appointment in the first place? I mean, I don't really want to go through them again.

 

To make it worse, DS presents as completely normal around other people. Unless he's tantruming. He's good at having silent "tantrums" if there are people around. He can turn his norm of falling on the floor and kicking to standing still as a statue, refusing to budge, and pinching me if there are people around that he doesn't know well. I feel like I'm going insane. Like I'm just imagining something is there.

 

We had to leave a weekly activity early (my class, other kids also come sometimes) yesterday because he was refusing to do his schoolwork, and trying to make the baby cry so I would give her my phone, so he could get phone/game time that day and not need to do his schoolwork. We started going to this class a couple of months ago. 

 

And I'm incredibly emotional now because, apparently, all of the problems I'm having are because I'm just a horrible mother and I'm doing it wrong. So obviously, I have no purpose and should just quit.

[Innisfree]

(((Dust))).

 

This is not because you are doing anything wrong.

 

I'm going to go back and reread the thread, then will be back. But I know the crazy feeling, and wanted to give you a hug right away.

[Aura]

First, you are not a horrible mother!  :grouphug:  You are not "doing it wrong." Does a "doing it right" parent exist, anyway? Aren't we all struggling to figure out how to best help our own children in all their variety?

 

Second, to me, this does not sound NT. Your ped. doesn't live with you. Trust your gut. Ask around and find a good psychologist to go to. Talk to them about insurance. I've found they are very understanding that most people need every penny they earn and don't have room for extra bills, necessary or not, and generally will work as much as they can. (They have bills, too.)

 

:grouphug:  :grouphug:  :grouphug:

 

Please be kind, because I don't think I can handle anything more right now.

 

I took DS to the ped, in the hopes that they could give me a referral for a dev ped, and that could lead to neuropsych testing.

 

The ped tried multiple times to steer me away from a path that leads to neuropsych testing. Because they know I wouldn't want to medicate. But I would like to know what is going on. 

 

Also, apparently, uttering the word "autism," as a possibility in a list of other things, in an effort to explain my concerns is forbidden and can summon the disorder to appear, akin to naming "he-who-must-not-be-named." 

 

Ped thinks he's totally normal/NT 8yo. Assumes I'm just doing it wrong. But it shouldn't be like walking on eggshells. I don't think NT 8yos have tantrums 5 times a day when the parents are actively trying to avoid tantrums.

 

Ped referred us to a psychologist for an evaluation. I'm not sure if it would be any different than the last time we tried a psych. Last time, I was concerned about a new behavior he was exhibiting, where he would threaten to kill me/dad when upset with us/tantruming. I was worried he might be serious/want to follow through on the threat, but it's been 3 years and he hasn't. And a month or 2 of weekly visits to the therapist (3 yrs ago) was less helpful than what I had already been doing in reading parenting articles online. And $$$.

 

Does it technically, for insurance, count as a referral if they just write down a phone number and told me to call? They didn't give any paperwork. Does that mean I could have just called the therapist to set up an appointment in the first place? I mean, I don't really want to go through them again.

 

To make it worse, DS presents as completely normal around other people. Unless he's tantruming. He's good at having silent "tantrums" if there are people around. He can turn his norm of falling on the floor and kicking to standing still as a statue, refusing to budge, and pinching me if there are people around that he doesn't know well. I feel like I'm going insane. Like I'm just imagining something is there.

 

We had to leave a weekly activity early (my class, other kids also come sometimes) yesterday because he was refusing to do his schoolwork, and trying to make the baby cry so I would give her my phone, so he could get phone/game time that day and not need to do his schoolwork. We started going to this class a couple of months ago. 

 

And I'm incredibly emotional now because, apparently, all of the problems I'm having are because I'm just a horrible mother and I'm doing it wrong. So obviously, I have no purpose and should just quit.

 

[happi duck]

Many (hugs)

[PeterPan]

Even the ped is agreeing you need help, sounds like, so that part st least is positive!! Take a deep breath, slow down, and think through what you need and what you can make happen.

 

You could call your insurance and ask them straight up what they cover. Sometimes there are nuances like covering AFHD but not SLDs, etc. talk it through with them. You don't need the ped's permission to get evals. You need funding to make them happen and it's your insurance that says what their hoops are and what they'll cover.

 

You might consider looking for behaviorists in your area. That way you could get some in home observation.

 

Does he gave sensory issues? Language issues? An autism clinic can do a multi-factor eval. OT eval for retained reflexes and sensory. My ds' behavior was NIGHT AND DAY when we got his reflexes integrated. Huge improvement.

 

Don't go to some random clinical psych. Doesn't have to be s neuropsychologist, your ped is correct on that. Take the time to find a clinical psychologist who sees a lot of autism. Don't rush on this.

 

You might want to pay for the behaviorist yourself if insurance won't cover it.

 

You'll get it figured out. Find out your funding and take your time. This is not the stage to rush.

[PeterPan]

Ped referral Is for insurance coverage. The psych, behaviorist, OT, none of them care about your peds opinion. ;)

Edited December 13, 2017 by PeterPan

[Lecka]

Your pediatrician is horrible!  Can you get a new one? 

 

I don't think you got the referral you need, I think you need a different referral! 

 

 

Edited December 13, 2017 by Lecka

[gardenmom5]

ok.  my suggestion is make an appointment yourself.  there is a whole battery of tests across multiple disciplines to diagnose.  if you have a child dev center, go there.  make an appointment - get on the wait list, even if you need a referral.   that's what I had to do.

 

I literally had to fire my ped of 25 years because of how we were treated.  I also found a ND who specializes in developmental disorders in children (she treats).  she was shocked at things my ped said to me, and how we were treated at his very last appointment.  (he insisted he was normal, but wouldn't examine him because he wouldn't stand on the scale.  he was terrified of the scale!)

 

 

eta:  - if you must have a referral- demand one for the child' dev center.  usually associated with medical schools or pediatric hospitals.

they will include slp, pscyh, pt, ot, etc. for testing.  there can be wait lists, just call to make sure they dont' forget about you.

I also started him with a ND - and the results have been a miracle.   he's now 12, and we have started him with a ped. neuro - she starts seeing more about this age as teen hormones start to kick in and complicating things.

Edited December 13, 2017 by gardenmom5

[Aura]

Maybe you could try talking to your pediatrician over the phone (might have to leave a message for him to call you). Tell him you didn't feel comfortable covering some things in front of your ds, but... and go over everything you're outlining in this thread. All the different things. All the different times. Tell him you KNOW all this combined is not NT and you NEED a referral. He should give you one. If he doesn't at that point, I'd fire him and find someone else. (If that's possible--I know insurance stuff sucks sometimes.)

 

ETA: Just thinking if you find a way to get him to go ahead with a referral, it'd save time in trying to find another ped and then getting a new patient appointment and then getting the referral. You could still fire him.

Edited December 13, 2017 by Aura

[ILiveInFlipFlops]

Oh mama  :grouphug:  :grouphug:  :grouphug:

 

My first suggestion may seem really simplistic, but have you looked at what he's eating? Our first 6 years with my youngest were...difficult. By the end I thought I was really dealing with some kind of mental illness, and I sort of started mentally preparing myself for her to live with us as an adult so I could care for her. I didn't see how she would ever function in the real world. She never threatened to kill us, but she did talk about killing herself or wanting to die. In short, we took food dyes out of her diet (including sneaky "caramel coloring," which I found even in "healthy" foods like high-fiber, whole grain bread), and she was a different child. Her personality is still strong, but she's able to control herself and direct her energy in much more positive ways. She's happy and cheerful and functional. You may have already tried this, but really look carefully. For us, even though I would have told you we ate an all-natural, mostly organic diet, my mother would bring things in once a week that I considered treats, or I'd allow her the lollipop from the bank, or we'd have chicken nuggets out one time, or she'd be sick and I would give her children's medicine, or we'd have Chinese food at a family gathering...even three small exposures a week would be enough to keep her wound up all day, every day. 

 

If you're positive that that's not it:

 

Do you actually need a referral to go to a psych? Check with your insurance. If you do, find yourself a new freaking pediatrician, because the first one is completely dropping the ball here. I'm so angry over what he told you! Horrifying.

 

In looking for a neuropsych, consider that you may want to go outside insurance. My experience with the evals we recently did was that because they took insurance, they only did the testing insurance paid for. The things I'm looking for didn't necessarily fit under those categories. I didn't realize until later that the evals they did were totally incomplete, and now I need to start the process all over again. I try really hard not to go outside our insurance when possible, but this is one area where I regret not looking for the BEST option, even if I had to put it on a credit card, because it was a huge waste of time (and some money too). 

 

Absolutely push your ped. Don't give up. Something is wrong, and you need to find out now what it is. And I know you said you don't want to medicate, but don't underestimate the value of a calm child and a functioning household. Kids with issues can have a very negative impact on the whole family. I didn't realize how badly my youngest's first 6 years affected her older sister until years later :( And the affected child isn't happy living that way either. It may be that you can get him to a stable place and start building good life habits that will help him later when things start to change again (hormones, changes in school environment, etc.)

 

I'm so sorry this has been so difficult. I hope you can get to someone who can help you and your little guy very soon. 

Edited December 13, 2017 by ILiveInFlipFlops

[eternalsummer]

Your pediatrician is just one guy.  He might know a lot about respiratory illnesses and not very much about non-NT kids, or he might know a lot about non-NT kids who present in some ways but not ones who present in other ways.  He's not God.  I haven't had this exact problem but I know how frustrating it is to have someone in a position of relative authority (or at least whom we grant authority in some area, by virtue of being trained in that area) tell you that you're just doing it all wrong.

 

If you've already done most of the suggestions in this thread  - revisited attachment issues, made these behaviors absolutely non-negotiably unacceptable, stood your ground consistently for some time, etc. - and you are still having these same problems, I think following PeterPan's suggestions are in order.  

 

I'm sorry you're having such a hard time with your DS.  I don't know what the cause is, or what the solution is, but I believe you that it is almost unbearable to live with this interaction right now.  Reading about it makes me shudder in sympathy.

[eternalsummer]

And I'm with you on not medicating.  It's not an option I'm willing to consider either, for DS9 who has some ADHD characteristics (and had more in the past, to the point of being really non-functional in a school setting).  But holy moly, that doesn't mean there aren't ways to help your son acclimate to the social requirements of the civilized world!  And it certainly doesn't mean that finding out why he has the issues he does won't give you insight into the non-pharmaceutical ways to help him.  Jeez.

 

That's like saying, well, I know you won't take prescription opioids long-term, so I'm not going to check to see why you're having chronic pain, since you won't use this one method of alleviating it.

[Aura]

I remember many times my oldest exhibited non-NT behavior, except at the time, I didn't know it was not typical! I thought I was the one messing up. There were many times I'd be in tears.

 

 

I knew my ds was ADHD. I never had a diagnosis but I knew it. It's the major reason we pulled him out of regular school started homeschooling at 1st grade. And I was right. (He finally got an official diagnosis when he started a B&M school in the eleventh grade.) BUT I didn't have a good understanding of that or how to deal with it. I learned, but little guy had to put up with my learning curve.

 

Also, there were other things that I wish I'd understood were not ADHD but not NT either. For instance, he wasn't being rebellious because he didn't want to wear jeans. He genuinely had issues with the rough texture. He wasn't being rude when covering his ears at the Christmas concert or when the preacher got real loud. The sound was truly something that hurt his ears! Poor guy.

 

 

I say this so you know you're not alone. Give yourself a hug. You're doing the best you can. Just keep going. Listen to others who've BTDT, especially when things start being repeated by multiple people. (I really wish I had done more of that!) You're going to get through this.

 

 

[scrapbookbuzz]

First of all,  :grouphug: !!! And you are by no means a horrible mother, nor are you going crazy! Your pediatrician does not live with you and your son. Trust the observations of the Hive and know that what you've described is not normal behavior for a neuro-typical child your son's age. Your son needs help and we will do all we can to help you find it.

 

To answer your question, no, the pediatrician just writing a name and number on a piece of paper and handing it over to you does not count as an official referral - to the insurance company. So you may want to ask your  health insurance company if you actually need to get one from the Dr. to take your ds to a neuropsych.

 

From my own perspective, there is so much more going on here than ADHD. I thought of Tourette's, as well, when reading about the random noises, especially as they interrupt his speech. And the fact that you said a year or so ago, he would throw tantrums and speak threats of killing to you and your dh - my dear, sweet, overtaxed mama, that is not normal behavior for any child. 

We will all be praying you find some decent, affordable, productive help for your son, and your family, soon!

[lavender's green]

I just read a book called Boundaries With Kids, by Cloud and Townsend. It addresses a lot of these issues. They go to great pains to assure you that their information is scripture-friendly, which some people may find off-putting, but they give good, sound advice.

[Innisfree]

Okay, my memory is refreshed now.

 

First, I'm sending your ped a virtual scowl. He is not serving you well. You might look into alternatives.

 

More importantly, the people saying to do your research before choosing someone for an evaluator are correct. With that in mind...

 

Evaluating for autism will not create autism, whatever the idiot ped said. With this set of behaviors, you do need to at least have a competent evaluator run the tests for autism, among other tests. So one way to find that evaluator is to call a local autism society or parents' group and see if they have recommendations for a good person. Another possibility is just to google "neuropsychologist" and your city or state name. Get a list and do some research: look at their websites, call and talk to them, explain the situation and see what they say. Try to get a sense of their experience.

 

And, yes, talk to your insurance company and find out what they'll cover.

 

In our area, I don't think I could get a BCBA in without having a diagnosis first, but I know that's not the case universally. So, yes, you could call around and ask about ABA in your area. That would give you a trained observer, in your house, seeing what you are seeing, which could be very valuable in diagnosis. And, if you get an autism diagnosis, you will very likely be told to get ABA anyway.

 

So much of what you've written resonates with me: the kid who could behave beautifully in public but melted down at home, the kid who vented frustration with surreptitious aggression, the feeling of being overwhelmed by it all. Please know that these kids can do so much better with proper support. The improvement we've seen is phenomenal.

 

You are doing the right thing by asking the hard questions. Try to give yourself some grace and take care of yourself as you keep on going.

[Mbelle]

My experience is similar to poster above about food reactions.  I found out our ds is severely reactive to dairy.  He gets tics, aggressive, anxious etc..  I had a full eval done on him, but it turns out is was the dairy.  At Halloween I discoverd that food dye causes a similar but milder reaction in ds so we eliminate that too.  I'm about to have him tested for other food allergies.  The behavior change was quite dramatic after week off of all dairy.  I will likely have ds evaluated again in a few years because they did say they saw signs of of ADHD but he's too young to diagnose at 5yo.

[Jean in Newcastle]

While I definitely think that you need to seek an evaluation, please be open to other possible diagnoses than autism. The self awareness and purposefulness. present in his silent tantrums does not sound at all like an Aspie or ASD meltdown. But obviously it is happening and is distressing and needs to be addressed.

 

 

Sent from my iPhone using Tapatalk

[amy g.]

I’m going to echo what previous posters have said. You need competent medical help, but what you are describing sounds much more like my kid with food sensitivities that my kid with Autism.

 

I’ll always be thankful to the hive for the day that I posted saying I was really afraid that she would have to be institutionalized at some point.

 

Veteran poster after poster replied, “Nah, those rages sound just like a food reaction.â€

Edited December 13, 2017 by amy g.

[ILiveInFlipFlops]

I’m going to echo what previous posters have said. You need competent medical help, but what you are describing sounds much more like my kid with food sensitivities that my kid with Autism.

 

I’ll always be thankful to the hive for the day that I posted saying I was really afraid that she would have to be institutionalized at some point.

 

Veteran poster after poster replied, “Nah, those rages sound just like a food reaction.â€

 

It was here that the light bulb went on for me as well. Someone posted an article about some governing body finally officially recognizing that Red 40 caused behavioral problems in children, and something just clicked. I was able to think about what DD had consumed in the past week and finally recognized that the children's Advil and the "fruit" snacks that my mom brought over were not as benign as I thought. Turns out that the yellows were the biggest demons though, sweet fancy moses! I don't know why I just couldn't make the connection sooner, even though I'd heard the discussion. So many years lost to so much struggle :(

[amy g.]

It was here that the light bulb went on for me as well. Someone posted an article about some governing body finally officially recognizing that Red 40 caused behavioral problems in children, and something just clicked. I was able to think about what DD had consumed in the past week and finally recognized that the children's Advil and the "fruit" snacks that my mom brought over were not as benign as I thought. Turns out that the yellows were the biggest demons though, sweet fancy moses! I don't know why I just couldn't make the connection sooner, even though I'd heard the discussion. So many years lost to so much struggle :(

My daughter saw a gallon bottle of red dye in the store yesterday. She said, “For me, that would be death in a bottle.â€

 

I was lucky that mine was still a toddler when we figured it out, but unlucky to have a toddler who raged and talked about wanting to get hit by a car and begging us to hurt her.â€

 

It was terrifying. My oldest noticed that it always happened when she ate pepperoni pizza. Turns out they put red food coloring in it.

 

Mine also has celiac so that complicates things. We just cook everything from scratch and she is a delightful agreeable, responsible, helpful kid.

[Petrichor]

And I'm with you on not medicating.  It's not an option I'm willing to consider either, for DS9 who has some ADHD characteristics (and had more in the past, to the point of being really non-functional in a school setting).  But holy moly, that doesn't mean there aren't ways to help your son acclimate to the social requirements of the civilized world!  And it certainly doesn't mean that finding out why he has the issues he does won't give you insight into the non-pharmaceutical ways to help him.  Jeez.

 

That's like saying, well, I know you won't take prescription opioids long-term, so I'm not going to check to see why you're having chronic pain, since you won't use this one method of alleviating it.

 

oops, missed this quote when I submitted this the first time.

 

I was going to say, in response to your second paragraph, they didn't even ask if I was interested in medicating. She said "Well, since you come to this clinic, I assume you don't want to medicate so you probably don't want a neuropsych." Which is true, I'd prefer not to medicate, but like you said, that doesn't mean I don't need to figure out what's wrong. 

 

Maybe, ya know, I need the opioids because I've got a nail in my foot, but we wont know until we look, right?

 

 

I remember many times my oldest exhibited non-NT behavior, except at the time, I didn't know it was not typical! I thought I was the one messing up. There were many times I'd be in tears.

 

 

I knew my ds was ADHD. I never had a diagnosis but I knew it. It's the major reason we pulled him out of regular school started homeschooling at 1st grade. And I was right. (He finally got an official diagnosis when he started a B&M school in the eleventh grade.) BUT I didn't have a good understanding of that or how to deal with it. I learned, but little guy had to put up with my learning curve.

 

Also, there were other things that I wish I'd understood were not ADHD but not NT either. For instance, he wasn't being rebellious because he didn't want to wear jeans. He genuinely had issues with the rough texture. He wasn't being rude when covering his ears at the Christmas concert or when the preacher got real loud. The sound was truly something that hurt his ears! Poor guy.

 

 

I say this so you know you're not alone. Give yourself a hug. You're doing the best you can. Just keep going. Listen to others who've BTDT, especially when things start being repeated by multiple people. (I really wish I had done more of that!) You're going to get through this.

 

He does have a weird, what we consider a rude and unnecessary reaction to loud sounds. Comparable to what you said regarding the preacher getting loud. Not talking about sudden loud sounds. And he doesn't have a problem when HE is the one making the loud sounds :/

 

Question being, is that a symptom for something?

 

I used to know "everything," and now I'm just lost. One of my biggest hurdles is that I don't know where to look.

 

While I definitely think that you need to seek an evaluation, please be open to other possible diagnoses than autism. The self awareness and purposefulness. present in his silent tantrums does not sound at all like an Aspie or ASD meltdown. But obviously it is happening and is distressing and needs to be addressed.

 

 

Sent from my iPhone using Tapatalk

Thanks. Yes, I'm open to anything, I just want to know how to help him, and the rest of us! 

 

Okay, my memory is refreshed now.

 

First, I'm sending your ped a virtual scowl. He is not serving you well. You might look into alternatives.

 

More importantly, the people saying to do your research before choosing someone for an evaluator are correct. With that in mind...

 

Evaluating for autism will not create autism, whatever the idiot ped said. With this set of behaviors, you do need to at least have a competent evaluator run the tests for autism, among other tests. So one way to find that evaluator is to call a local autism society or parents' group and see if they have recommendations for a good person. Another possibility is just to google "neuropsychologist" and your city or state name. Get a list and do some research: look at their websites, call and talk to them, explain the situation and see what they say. Try to get a sense of their experience.

 

And, yes, talk to your insurance company and find out what they'll cover.

 

In our area, I don't think I could get a BCBA in without having a diagnosis first, but I know that's not the case universally. So, yes, you could call around and ask about ABA in your area. That would give you a trained observer, in your house, seeing what you are seeing, which could be very valuable in diagnosis. And, if you get an autism diagnosis, you will very likely be told to get ABA anyway.

 

So much of what you've written resonates with me: the kid who could behave beautifully in public but melted down at home, the kid who vented frustration with surreptitious aggression, the feeling of being overwhelmed by it all. Please know that these kids can do so much better with proper support. The improvement we've seen is phenomenal.

 

You are doing the right thing by asking the hard questions. Try to give yourself some grace and take care of yourself as you keep on going.

 

This was a new ped who works/is being trained by the old ped. The old ped seemed to agree with the new one though. I agree, they aren't the best. I've been wanting to take DS somewhere else for a while, but I've not gotten to it yet. 

 

I have trouble figuring out what I would say to the insurance company. Maybe because I'm not quite sure what I'm looking for? Or maybe that I don't know the terminology for it?

 

One of the lines the ped started with was "well, if sending him to school is out of the question..." because sending him to school will fix the behavior issues when he refuses to do his homework? Or decides he doesn't want to go to school? Or go to sleep? Or brush his teeth? Or when he's home every day for summer break? Because the teacher will work with him one on one better than I do to try to help him figure out what he is feeling and why he is feeling that way and to help him act like a rational human being?

 

 

I’m going to echo what previous posters have said. You need competent medical help, but what you are describing sounds much more like my kid with food sensitivities that my kid with Autism.

 

I’ll always be thankful to the hive for the day that I posted saying I was really afraid that she would have to be institutionalized at some point.

 

Veteran poster after poster replied, “Nah, those rages sound just like a food reaction.â€

 

Is there someone I can go to to figure out if he has food sensitivities decisively?

 

There are certain foods that I've been able to link with behavior. But I don't have the time or energy to experiment with every food he eats individually. :/ I do try to stick to natural/organic versions of prepared foods, and I read ingredient lists to avoid weird/synthesized/chemical ingredients.

 

Sugary cereal or cookies in the morning, or bagels (the main white-flour product we buy) sets him up for a very bad day of refusals and meltdowns. We don't buy bagels anymore.

 

For a while coffee, even coffee that had a lot of milk and sugar in it, seemed to be helping him get done with schoolwork within the allotted time. I stopped making him drink it after a few months because he was resisting it and his behavior seemed to be better in early afternoon time period that we do school. He still had meltdowns during other parts of the day though, including every time it was time to leave one of the grandparents' houses. And yes, I give him warnings before it is time to leave. When I say "gotta go in 30 (or 10, or 5) minutes" he'll say "ok" and then I give him a one minute warning, he says "ok" and then I say "ok time to go now" and he has a meltdown. Almost every single time.

 

 

ETA: response to first quote

Edited December 13, 2017 by Dust

[amy g.]

Other people might be able to help with diet elimination ideas more than me, because my kids react to so many different things that we have to be pretty restrictive. I don’t think that is common.

 

We started with the entire family doing a Whole 30. That helped us pinpoint which food groups caused a reaction when we started adding more in.

 

One of my children has high blood sugar and one has very low. Neither one can eat cereal or regular pancakes (I make pancakes with almond flour and they eat them with butter instead of syrup)

 

Our family is completely grain and sugar free. Even so, things slip by. Yesterday, Dd had a horrible stomach ache. Sure enough, I had brewed her a cup of tea that afternoon and didn’t notice the “natural flavors†listed on the bag.

 

Again, I don’t think most people have to be this careful. I have friends who have had great success with the Feingold Diet.

 

That might be a good place to start.

 

Hugs, and good luck to you. I’m hoping you get great results and a happy kid and family without needing to resort to medication.

Edited December 13, 2017 by amy g.

[Petrichor]

And thank you everyone for the kind words. I was suddenly very emotional after yesterday's ped visit.

[StephanieZ]

"Farts belong in the bathroom."

 

When my kids got out of hand around those ages with farting, burping, or other grossness, I enforced the "farts belong in the bathroom" rule. 

 

In your situation, I'd send him to a bathroom for 5 minutes every time you hear a fart or loud gross burp or any other fart-ish noise. Get a cheap, simple 5 minute timer of some sort and keep it in the closest bathroom. Put a few educational reading items in there (Kids magazines, etc, ideally, as they're "disposable" just in case.) Nothing else entertaining would be permitted in the bathroom. Just the reading rack of pre-selected Mom-approved educational reading. He can sit in there and either fart or go potty or read, whatever, but he stays until he's been in there 5 minutes. 

 

If you have limited bathrooms available and/or don't like the idea of banishing him to a bathroom, then you can banish him to his bedroom or a stair step or wherever. I just like the bathroom idea since I tell my kids that's where farts belong. 

 

 

A thing I said often was "Do you need to poop?! Did you crap your pants?! Are you sure? Never trust a fart!! You might crap your pants!" -- things along that line are just embarrassing enough for my kids to not like to hear it from me. Since I frequently said things like that when I heard a fart, it discouraged them from doing it in my presence. 

 

(Clearly, I'm talking about 8 year olds who've been potty trained for many years . . . My advice doesn't apply to young kids who are still potty training!)

 

[Scarlett]

"Farts belong in the bathroom."

 

When my kids got out of hand around those ages with farting, burping, or other grossness, I enforced the "farts belong in the bathroom" rule. 

 

In your situation, I'd send him to a bathroom for 5 minutes every time you hear a fart or loud gross burp or any other fart-ish noise. Get a cheap, simple 5 minute timer of some sort and keep it in the closest bathroom. Put a few educational reading items in there (Kids magazines, etc, ideally, as they're "disposable" just in case.) Nothing else entertaining would be permitted in the bathroom. Just the reading rack of pre-selected Mom-approved educational reading. He can sit in there and either fart or go potty or read, whatever, but he stays until he's been in there 5 minutes. 

 

If you have limited bathrooms available and/or don't like the idea of banishing him to a bathroom, then you can banish him to his bedroom or a stair step or wherever. I just like the bathroom idea since I tell my kids that's where farts belong. 

 

 

A thing I said often was "Do you need to poop?! Did you crap your pants?! Are you sure? Never trust a fart!! You might crap your pants!" -- things along that line are just embarrassing enough for my kids to not like to hear it from me. Since I frequently said things like that when I heard a fart, it discouraged them from doing it in my presence. 

 

(Clearly, I'm talking about 8 year olds who've been potty trained for many years . . . My advice doesn't apply to young kids who are still potty training!)

 

 

Ok, I am following along and this thread is a serious topic and I really feel for you Dust, but I gotta tell you I literally LOL when I read the bolded.