RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays

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momsparky
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01 Aug 2015, 2:10 pm

HisMom wrote:
BUT... BUT, when the blessed day that he discovers his voice comes around, and the blessed moment he actually uses that voice dawns, all discipline and limits (with the exception of any that will endanger his life & safety and those of others around him) will go out the door. And they will stay gone for as long as it takes him to become a fluent and fluid speaker. That's me and my priorities.


I don't think we are in disagreement: this is basically what I was trying to say.



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01 Aug 2015, 9:17 pm

Thanks, I appreciate the feedback.

Sometimes I feel like my non-verbal son gets the short end of the stick because my younger son requires an ridiculously high level of supervision and he's really loud and invades everyone's space and breaks their stuff CONSTANTLY. (He's also a sweet boy and has good traits of course). Then lately he's been actually requesting stuff and I feel like I've been treating him better in a way than my older son since he is non-verbal (and probably always will be). I try to avoid that, but I've been feeling really guilty about it lately. I don't want to "punish" my older son for being non-verbal. But of course at the same time, I do want to reward my younger son for speaking...

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But if he wants ice cream for dinner, or to wear socks on his hands, or to listen to the same annoying song over and over; stuff like that - I think the benefit of helping him understand cause and effect is more important, right? I think the rules about limits that we'd set for verbal or NT kids don't really apply unless there are health or safety issues, or it's a boundary that causes distress to someone else (like, if whatever it is keeps you up all night for most nights: at some point you have to look out for your own needs.)

He actually already does wear socks on his hands! ;)

This makes sense but it's hard to gauge in the moment. I've been feeling really bad lately in general which is adding to my problem here a lot. Realistically, right now I should be jumping for joy and delighted- I don't know what's wrong with me. I have constant headaches and feel extremely overwhelmed, depressed, tired, and mostly guilty. No real reason except maybe sleep-deprivation. But that's making it hard for me to judge and I feel soooooo guilty all the time. I think ordinarily (/in the past? ...hopefully not) I have an easier time handling it.

For instance: So last night he was up at around 1am (he doesn't really sleep and requires supervision-that's why I'm sleep deprived, but that's just how it is). He said "cookie" and we didn't have any so I told him that and he said "Pour the flour in a bowl!" (LOL) and I realised he wanted to BAKE cookies. So we did bake cookies. On one hand, I was already awake anyway, so it didn't matter... but on the other hand, I do want him to sleep and I feel like this sort of sends the wrong message regarding sleep. Normally I try to make night-tme really boring, in hopes that he'll think "maybe I should sleep like everyone else on this plant does". I guess speech is more important than his bad sleeping habits right now since his sleeping habits are less likely to change than his speech. But at the time, it was a dilemma for me.

E.g. affecting my other son: Yesterday he wanted to vacuum, which my older son HATES. I normally do not vacuum when my older son is home because it distresses him. I said no to this one because I knew my older son would go into a self-injuring tizzy...but then I felt guilty about my younger's son speech. I would have felt guilty either way... but maybe I should have just sent him out into the back yard so my younger son could vacuum??????? I don't know! Ugh

Sorry this is so long.


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HisMom
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01 Aug 2015, 10:21 pm

WelcomeToHolland wrote:
Thanks, I appreciate the feedback.

Sometimes I feel like my non-verbal son gets the short end of the stick because my younger son requires an ridiculously high level of supervision and he's really loud and invades everyone's space and breaks their stuff CONSTANTLY. (He's also a sweet boy and has good traits of course). Then lately he's been actually requesting stuff and I feel like I've been treating him better in a way than my older son since he is non-verbal (and probably always will be). I try to avoid that, but I've been feeling really guilty about it lately. I don't want to "punish" my older son for being non-verbal. But of course at the same time, I do want to reward my younger son for speaking...


From one severely sleep deprived Mum to another - you are overthinking this way too much.

It appears that you believe that you spend a lot more time with the little one (because of the level of supervision he needs) than with the older one, and now that his speech is emerging, you feel that you are bending over backwards to cater to him, because you want to encourage him to talk more -- which is, somehow, in your opinion, "unfair" to your older son !

I don't look at it like that at all. Every child is different with different needs, and it is just a normal part of good parenting to sometimes give more attention to one kid than to his or her siblings. If your younger son needs more supervision, then he needs more supervision, and trying to "play fair" will result in a safety issue for him. It is not as if you have embarked on a lifelong mission to purposefully play favourites, and to neglect one of your children in favour of the other, for no reason at all.



WelcomeToHolland wrote:

This makes sense but it's hard to gauge in the moment. I've been feeling really bad lately in general which is adding to my problem here a lot. Realistically, right now I should be jumping for joy and delighted- I don't know what's wrong with me. I have constant headaches and feel extremely overwhelmed, depressed, tired, and mostly guilty. No real reason except maybe sleep-deprivation. But that's making it hard for me to judge and I feel soooooo guilty all the time. I think ordinarily (/in the past? ...hopefully not) I have an easier time handling it.


That's the migraines, the lack of sleep and the depression talking. Welcome to the wonderful world of autism parenting. Seriously, though, I am sitting here, having survived on 4 hours of sleep a night all week - if that - and a constant supply of migraine medication. Today has been a life saver for me as the husband took the kids to visit a friend and gave me the option of catching up on some zzzzzz. I strongly suggest that you take a deep breath, make arrangements for someone to take the kids for the weekend, and get caught up on sleep. That should clear your thinking and make you feel less tired and less hard on yourself. Once you are well rested, and feeling less overwhelmed, you will be congratulating yourself and whooping for joy, because GREAT things are starting to happen for your son, and it's party time !

WelcomeToHolland wrote:
Again, you need your sleep. But his emerging speech

E.g. affecting my other son: Yesterday he wanted to vacuum, which my older son HATES. I normally do not vacuum when my older son is home because it distresses him. I said no to this one because I knew my older son would go into a self-injuring tizzy...but then I felt guilty about my younger's son speech. I would have felt guilty either way... but maybe I should have just sent him out into the back yard so my younger son could vacuum??????? I don't know! Ugh


Yes, you should have, and you WOULD have, had you been less tired and more yourself.

Don't be so hard on yourself. You are doing the best you can, under the circumstances, and you are bound to take a few mis-steps. It's OK. Just make sure to get enough rest and to stay focused on the things that really matter, in the here and now. That would be your son's emerging speech. NOTHING ELSE matters now except that. You are not being a mean or a partial parent, you are just setting your priorities right.

Good luck !


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momsparky
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02 Aug 2015, 8:30 am

FYI, there is a program out there called "sibshops" just for the siblings of kids with disabilities - https://www.siblingsupport.org/ Sometimes just knowing other kids are dealing with it can be helpful.



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02 Aug 2015, 1:44 pm

HisMom wrote:
WelcomeToHolland wrote:
Thanks, I appreciate the feedback.

Sometimes I feel like my non-verbal son gets the short end of the stick because my younger son requires an ridiculously high level of supervision [...]I try to avoid that, but I've been feeling really guilty about it lately. I don't want to "punish" my older son for being non-verbal. But of course at the same time, I do want to reward my younger son for speaking...


It appears that you believe that you spend a lot more time with the little one (because of the level of supervision he needs) than with the older one, and now that his speech is emerging, you feel that you are bending over backwards to cater to him, because you want to encourage him to talk more -- which is, somehow, in your opinion, "unfair" to your older son !

I don't look at it like that at all. Every child is different with different needs, and it is just a normal part of good parenting to sometimes give more attention to one kid than to his or her siblings. If your younger son needs more supervision, then he needs more supervision, and trying to "play fair" will result in a safety issue for him. It is not as if you have embarked on a lifelong mission to purposefully play favourites, and to neglect one of your children in favour of the other, for no reason at all.


Right, but my older son has a lot of very serious deficits and problems which I NEED to deal with too...they're just easier to ignore. Since he has no ability to communicate, it's easy for me to ignore him since he's not communicating. But obviously the fact that he doesn't communicate is not something to ignore- it's just easier to ignore. Basically I'm not sure that I'm paying more attention to my younger son because he needs more- but rather because I can't ignore him due to the type of problems he has. Anyway... I decided yesterday that im going to spend this coming week prioritizing speech and then next week, since my younger son is in a drama camp (which will be good for his speech), I'll find a goal to focus on my older son. Hopefully I'll feel better about that. Thanks for the wishes of good luck. ETA: and I'm planning to try not to worry about undermining previous goals (eg sleeping) for the time being. We can deal with those again later I think (I hope).

Side note regarding migraine medication: i got a really expensive prescription migraine medication last year which I used only once due to the fact that it made it hard for me to stay awake. I looked at the box yesterday and they've already expired! What a waste of money though...jeez.


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04 Aug 2015, 8:52 pm

Oh, I hate it when expensive meds expire.

My insurance pays for my Rx migraine medication, but the local pharmacy now has a bunch of restrictions around it and getting it filled is pure drama.

They refuse to ship it out to me and force me to come into the pharmacy to pick it up. I have to go there myself, and show my picture id - my husband or a friend can no longer pick it up for me ! And, whilst there, I can't just show my id, get the stuff and leave -- I have to sit through the pharmacist's stern and boring lectures on sticking to my dosage, how to keep it out of the reach of children, how to "safely" dispose of any extra / unused medication (like that's ever going to happen) past it's expiry date... blah blah blah ! !

The sheer rigmarole surrounding the filling of that Rx alone triggers a migraine in me ! UGH.

Anyway, hope you're feeling better. And hope you are hearing a lot more speech now ! :)


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24 Sep 2015, 9:18 pm

Haven't posted in her in yonks!
My son was recently diagnosed through EEG with unusual brain waves plus seizure like spikes. He will also experience a seizure when he is running a fever.
So we have started on Lamotrigin AKA Lamactal for the seizures but the pediatrician is also hopeful that perhaps it will help him to function better for want of a better term. Focus, less stimming perhaps. The utopia is perhaps development of some language (such is the outrageous and wanton dreaming of some parents of Autistic kids).

I read contradictory things about results of functioning on Lamotrigin though e.g.
viewtopic.php?t=254474

I guess though it is a very individualised area, and we will have to wait and see what happens. I'm not counting on anything but I do hold some little hope.



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25 Sep 2015, 2:05 am

nostromo wrote:
Haven't posted in her in yonks!
My son was recently diagnosed through EEG with unusual brain waves plus seizure like spikes. He will also experience a seizure when he is running a fever.
So we have started on Lamotrigin AKA Lamactal for the seizures but the pediatrician is also hopeful that perhaps it will help him to function better for want of a better term. Focus, less stimming perhaps. The utopia is perhaps development of some language (such is the outrageous and wanton dreaming of some parents of Autistic kids).

I read contradictory things about results of functioning on Lamotrigin though e.g.
viewtopic.php?t=254474

I guess though it is a very individualised area, and we will have to wait and see what happens. I'm not counting on anything but I do hold some little hope.

Hi Nostromo, sorry to hear about your son's seizures

I read that anti-seizure medication does also improve mood in children with ASD. A promising avenue at the moment is medical marijuana which has had dramatic results in reducing severe seizures.

I'm certainly not an expert in this area and hope other parents might share their experiences as seizures and ASD are reported to be comorbid in many children.



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25 Sep 2015, 10:24 am

Just recently, as we're tweaking my meds, did a short trial of Lamictal myself - the small dose used as an anti-anxiety/antidepressant. It unfortunately amped up my fibromyalgia, so it didn't work well for me - but I can see where this drug may be a good choice for kids on the spectrum, especially those who have seizures or seizure-ish things like migraines. In other words, go ahead and be hopeful: it may help with anxiety in addition to seizures...and sometimes anxiety is an issue with developing language.

Just found this website that I think is a TERRIFIC resource for medication information: http://www.crazymeds.us/pmwiki/pmwiki.php/Main/HomePage



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27 Sep 2015, 4:36 am

Yeah interesting site, just read up some things about Lamotrigine on there.
Not very happy about the potential side effects I read about. Cest la vie.



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17 Oct 2015, 1:36 am

*Knock knock* ??

Hey guys, please check out "The Spectacular Bond" by Dr. Marion Blank. It was highly recommended to me by another parent a couple of weeks ago, and I have since read it from end to end. I think it is a great book and it explains why a reward based system of teaching skills and appropriate behaviours is not always the right way to go. She does not necessarily mention "ABA" by name, but it's quite obvious that she is referring to the practice of applied behaviourism when she gives examples. I really like this book and wanted to share it with you here. The book also outlines some great skills and behaviors to teach and how to teach them, the non-ABA way :)

Plus, this thread periodically needs wake-up calls :)

How's your daughter doing now, CyberDad ?

Anyone else watching SL vs WI ? WI getting more and more pathetic with each passing day - logged a nice follow-on at Galle, way (NOT) to go Windies :(


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17 Oct 2015, 6:07 am

HisMom wrote:
*Knock knock* ??

Hey guys, please check out "The Spectacular Bond" by Dr. Marion Blank. It was highly recommended to me by another parent a couple of weeks ago, and I have since read it from end to end. I think it is a great book and it explains why a reward based system of teaching skills and appropriate behaviours is not always the right way to go. She does not necessarily mention "ABA" by name, but it's quite obvious that she is referring to the practice of applied behaviourism when she gives examples. I really like this book and wanted to share it with you here. The book also outlines some great skills and behaviors to teach and how to teach them, the non-ABA way :)

Plus, this thread periodically needs wake-up calls :)

How's your daughter doing now, CyberDad ?

Anyone else watching SL vs WI ? WI getting more and more pathetic with each passing day - logged a nice follow-on at Galle, way (NOT) to go Windies :(


Hi HisMom.

I've lost touch with the cricket I'm afraid, Australia's Ashes tour still a sore spot...

There's an interesting paper on WP which suggest that ABA type repetitious therapy actually stifles children's creativity and curiosity (among other things).
http://www.disabilityscoop.com/2015/10/ ... ism/20869/



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17 Oct 2015, 11:45 am

Maybe I am misunderstanding the paper but inflexibility / rigidity in thought and action is a hallmark of autism, so it is not surprising that the individuals with autism struggled when consistent patterns suddenly changed ? I don't know how that would apply to current teaching methods, esp as some prudent therapists do vary their lessons by teaching in different locations, different materials etc.

But Dr. Blank's book focusses more on her methods of teaching learning to learn behaviours such as "attending quietly", learning to control stims in public etc, from the perspective of a developmental paychologist, as opposed to the approach of a behaviourist. Her book is worth a read, IMO.

Don't lose heart over the Ashes, although I agree that your boys didn't travel 6000 miles to make friends. They were there to win the Ashes :). Quite frankly, cricket is my sanity saver. The goings-on at Galle have kept my mind off serious problems that I am avoiding facing (for as long as possible).

How is your daughter doing ??


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That one may smile, and smile, and be a villain.
At least I'm sure it may be so in "Denmark".

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17 Oct 2015, 2:23 pm

I think there is a strong element of truth in the papers findings about repetition, but I wonder if it has occurred to them that the repitition of stimming might have the same effect as a repetitive ABA drill? My son spends a lot more time stimming than doing ABA.



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17 Oct 2015, 6:35 pm

Sri Lanka won by an innings and 6 runs. The Windies seem to go into every test series determine to log at least ONE innings defeat per series. :(

Herath is the spawn of the Devil himself. Although, I should very glad when a spinner - and not a fast bowler - takes all the glory, for a change.


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That one may smile, and smile, and be a villain.
At least I'm sure it may be so in "Denmark".

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cyberdad
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18 Oct 2015, 3:49 am

HisMom wrote:
Maybe I am misunderstanding the paper but inflexibility / rigidity in thought and action is a hallmark of autism, so it is not surprising that the individuals with autism struggled when consistent patterns suddenly changed ?


Yes that's true. But I long suspected that repetitive therapy has some bad side effects but I guess it depends on the child and some children can still benefit from this type of therapy

HisMom wrote:
Don't lose heart over the Ashes, although I agree that your boys didn't travel 6000 miles to make friends. They were there to win the Ashes :). Quite frankly, cricket is my sanity saver. The goings-on at Galle have kept my mind off serious problems that I am avoiding facing (for as long as possible).

Yes, eventually we all have to bite the bullet. I only wish there were more teams that are competitive. At the moment it's really only Australia with the UK and South Africa occasionally producing good form.

HisMom wrote:
How is your daughter doing ??

She had her piano concert and did quite well. Played a Gershwin tune.
She's also become quite obsessed with building lego. It's strange because she used to ignore lego when she was younger. It illustrates the fact that sometimes if you expose your child to something they may not like it at first but down the track they are familiar with the activity and perhaps it clicks...(that's a lego joke so please pardon the pun)