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Discussion Starter · #1 ·
We talk a lot here about how having a child with SN requires us to give up so many of our crunchy ideals. And I'm wondering, now, if GD is one of those things we have to give up.<br><br>
Grace has GERD and has thrown up pretty much constantly since she was born until she had a nissen fundo in January. Thankfully that ended the vomiting. And, for the first time, we can see inside of her mouth without her completely clenching her teeth. I know it might seem ridiculous, but we've just never been able to fight her hard enough to be able to see inside her mouth without her throwing up. But now we can.<br><br>
Anyhow, we've discovered that her teeth are almost black - likely from the acid and the "neglect" and the massive amounts of antibiotics. SO, we've decided to start brushing them. And you'd think we were torturing her.<br><br>
I'm used to torturing her, to her screaming in pain or agony or fury. I HAVE to do horrible things like give her breathing treatments, change her trach (until last month), clean/rotate her mickey button, oh, and change her diaper. I have to hold her down, probably hurting her, when nurses change her IVs, take her blood pressure, her temperature, her ears.<br><br>
And now I'm wondering just what she understands. How much am I supposed to hold her accountable (I don't even know if that's the right word) for her occasional hitting, throwing and other 'misbehaviors' - mostly mild, really? Her therapists complain about compliance, and I just don't know how much more I can push her.<br><br>
How do y'all establish boundaries, 'rules' or whatever when you're not completely sure that your little one understands? How do you cope with people who think you spoil your child because they aren't always 'following instructions' or whatever?<br><br>
In the end, how do you mix your GD ethos with the facts of SN life????
 

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We do what works -- sometimes it looks like perfect little GD world, and a lot of times it doesn't.<br><br>
Dd doesn't always get the concept of natural consequences, mostly because a lot of them, to her, aren't natural. She can't see people's faces to register disappointment or anger or whatever, and voices can sometimes be misleading. She also doesn't always have appropriate reactions to situations -- getting yelled at often results in her laughing or giggling, which makes people very angry, and then the cycle gets worse. We have had to have LOTS of talks with the school about finding appropriate discipline techniques that take her needs into account.<br><br>
I don't hold dd accountable for yelling, or twisting away during painful or uncomfortable procedures. I never have, and I won't, even though people often expect that she should have learned how to "be a good girl". I do hold her accountable when I know she is deliberately hitting or pushing during playtime, or when she yells at people because she hasn't gotten her way.
 

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Discussion Starter · #3 ·
Oh I totally agree about not trying to make her react differently to anything that makes her uncomfortable or that might be painful. I just hold her (restrain her) as gently as I can, all the while telling her how brave she is and how much I love her. And she ALWAYS recovers so quickly, never seems to 'hold a grudge' which is almost sad to me.<br><br>
I guess what I'm worried about is that I do so much forcing of necessary things, that I just, often, cannot provide anymore restrictions on her behavior, which, I guess, has led, a bit, to her being somewhat 'spoiled' - HA HA! As if! How do y'all balance trying to help your child to behave in ways that are 'socially acceptable' while 1) giving them some 'time off' from all the imposed structure that is just part of keeping them alive, and 2) understanding that they might not understand what you're trying to say in the way of 'don't throw/hit'?
 

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We really struggled with this, too. DS1 had many medical issues stemming from prematurity, and was trached, on O2, tube fed, etc. for nearly three years, with many hospitalizations for pneumonias or surgeries. He is also very dev. delayed, autistic and completely non-verbal. He has many symptoms of PTSD as a result of his medical history and it has been very difficult to find a way to set reasonable expectations while taking into account his emotional and cognitive needs and limitations, if that makes sense. Basically, at this point (he will be 7 this summer) I try to avoid "triggers" that might set him off, warn medical personnel of what to expect so we can ward off any serious injuries (to him or them) from his "fight or flight" response to procedures and medical settings, which are thankfully few and far between now that he is older and healthier, and do not allow physical aggression under any circumstances - he is restrained as much as necessary during blood draws or other procedures, gently but firmly, and any aggression in other settings results in time out. I don't know that he understands time out so much as he is able to calm down and regroup much easier if he is by himself for a few minutes. I let him holler or protest vocally as much as he wants, but hitting/kicking, etc. is his preferred response now to any frustrating or fearful situation and that is what I don't allow. I am hoping to find a way to help him work through this better verbally or through play but he's not able to do that yet due to his language delays. It's very hard, especially I imagine for him.<br><br>
I'd love to hear how others have handled this!
 

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My son doesn't have any medical issues that necessitate me taking what could be construed as "un-GD" measures with him for the sake of his health and welfare. He does however have significant behavioral and self-regulatory problems that are very, very hard to manage. We've just begun using timeouts to help him regain control of himself, and I do hold him in my lap and restrain him for that one minute of time. Either that or I have to seclude him in his room, because he hits and kicks his baby brother. He's almost 3, but has delayed language skills, so while he can yell and scream that he's not going to do what I've requested, I can't use any type of verbal bargaining or conversation to reach him when he's tantruming. There are often bedtimes when I dress him against his will, brush his teeth while he's telling me to stop and let him get down and play, and I'll even put him in bed while he's telling me "put me back on the floor I want to play with my books".<br><br>
I as the parent know what he needs, and his delayed developmental skills prevent us from having age-appropriate dealings in so many areas. Like the most previous poster - I can allow him to yell and scream and verbalize, but I cannot allow him to hit and kick and injur his brothers, which he does if I don't step in and restrain or move him physically. It's also very difficult for his brothers to spend the entire day (literally at times) listening to Mark scream and whine and tantrum. They deserve some peaceful time in their home, and if that means holding Mark on my lap forcefully for 90 seconds while he regains his composure, then I'll do it without regret. I do what's necessary and most appropriate for my family and my children. My sn child needs a slightly different type of parenting than I'd use with him otherwise, and I'm more than willing to provide that for him. As his parent, it's my job to parent him in the way best for him.
 

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Discussion Starter · #6 ·
I don't even know if Grace understands time out - mostly because she was abandoned as a baby, and now is an only child, so time alone for her is no big deal.<br><br>
I guess I'm bumping to see if anyone uses other means (I have no problem with time out, she just doesn't seem to be affected by it).
 

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I think it's also very important to take into account your child's developmental age. Mark is still about 10 months delayed overall, so that puts him at 23 months, not 33. That's a huge difference, and it impacts how I'm able to discipline him, relate to him, etc. For timeouts, I sit with him and they only last 1 minute. Even though HE has age-appropriate expressive language, his receptive is far behind, so I use simple phrases like "no touch" or "gentle hands" to help guide his actions.<br><br>
I think developmental age is key, as is taking into account any sensory issues your child might have.
 

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Just a few thoughts that you may have already tried ...<br><br>
I would try not to worry too much about what others think - we have definitely been through that and every time I strayed from my own "gut feelings" on how best to handle a situation I wished I had stayed true to myself later on. One thought as to how to handle "misbehavior" is to ignore it - not sure if you have tried that yet or not. If you ignore (completely) undesireable behaviors and make sure to pay lots of attention to positive ones, do the negative behaviors start to diminish? I guess it would depend on what her goal is with the misbehaviors. Is it to escape therapy? Is there another approach her therapists could take that would eliminate the "non-compliance" and make her more receptive and willing to engage? Since behavior is primarily communication, have they been able to determine what she is trying to communicate?<br><br>
WRT the teethbrushing - we have been through all of the fighting, mouth-clamping, twisting, slapping, etc. to avoid teethbrushing with our oldest. I did used to have to almost sit on him to get his teeth cleaned. He has a severe oral aversion and just started eating orally about nine months ago, shortly before his 6th birthday. It has improved, but he will not open his mouth for anyone still - he'll let the toothbrush in his mouth but close his lips around it. Dentist trips are a nightmare. With that one, I just decided that to have rotton teeth/gums down the road was not going to help at all with his sensory/oral aversion issues and would only serve to make him miserable and sick so we just did what we had to do to get his teeth brushed. Nobody liked it, especially not him, but I just didn't feel it was one I could let go. It's hard to decide sometimes when to push and when to give slack - never an easy answer with kids with traumatic histories, medical or environmental. (We are also dealing with some attachment type issues I think - DS1 is adopted through the foster care system and had little to no family support through his first 18 months, which were spent in hospitals. His being non-verbal makes things pretty tough to sort out.) I'm a long way from finding all the answers in our case so I'm always interested in hearing about experiences from other families.
 
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