"He's in control"

[crunchy_mommy]

I feel like I'm hearing this everywhere and it's really getting old.

Mostly it's books/blogs/etc. but even his OT was talking about how he runs the show & he's in control and all that.

It hurts, it really does.

Maybe I'm just too close to the situation to see it? Maybe he really is running the show???

I don't know... I just feel like I can see quite clearly that yes, sometimes he is fighting for control, but most of the time he is just scared and overwhelmed..

I can't get him to nap. Apparently it's because I'm not setting firm expectations. The way he cries when it's naptime is terrified. Laying down is uncomfortable for him. Sleep is uncomfortable for him. Everything bothers him.

I can't get him to even sit on the potty (he will pee standing but he won't poop since it requires sitting). Advice I read was that he thinks he's in control and I need to take control and blah blah blah but how do I explain that he just can't handle it, even if other 2.5yo's can???

He has some strange behaviors when he gets overwhelmed/overstimulated. But it's just that I'm not disciplining him properly, I'm not being consistent, and he thinks he can do whatever he wants.

I'm just feeling so frustrated, like no one understands my kid except me. I will be the first to admit I'm far from a perfect parent and I may never be 100% consistent with anything, but I don't feel like I'm doing it all so much worse than everyone around me! But the more I hear things the more I question myself and think I've just totally failed at all this.

I'm really trying my best and I put so much effort into it but people just don't get it.

[KimPM]

Yes, it's hard.
When he's in control of the things he can control, he feels better. That's why anyway. My DS is like this too.

He will always be in control of things that involve his own body - ie. pottying, feeding. The only way I got DS to go on the potty is to work with him and try to maneuver his control of the situation toward the potty - toward him wanting to do it. The more I pushed though, the more he pushed back and the less he wanted to do it. It's the same with feeding.

[cyclamen]

I would like to recommend a book called "Child of Mine" by Ellyn Satter.  That might sound weird as it's a book about feeding but she talks a lot about control and about what is the parents responsibility to control and what is the child's.  ONe thing she says alot is there is some things a parent should control (the situation - what, where and when food is served) and some things the child must control (in the case of feeding how much and whether to eat).

Anyhow, this book has been tremendously helpful for me in thinking about how I approach DD's physical needs - not just her eating.

I would guess that for instance, while you could set a boundary that between 1-2pm every day (or a rhythm.... after lunch and active play) he will be in his room and it will be dark and quiet to give him the opportunity to sleep...and maybe you will be there if that is what you have always done.... you can't make him sleep.  No one can, and it is unreasonable for anyone to expect you to make him sleep, because that's simply not how human beings work, last I checked.  As parents we do what we can, like the pp said, to make the situation amenable to what needs to happen.  I think that anyone who is expecting you to control something that is not yours to control is having an unhealthy expectation.

[Emmeline II]

My ds wouldn't nap or have quiet time by that age either; though we later figured out he was ADHD and he now uses melatonin to sleep.

My dd and all her girl cousins were fully potty trained by 2.5...for the boys it was closer to four. Ds did-not-care about being in diapers but they could no longer contain his output so we pushed potty training a bit at 3yo; had to bribe him with M&Ms and toy cars. It took about a month for #1 and another 3 months for #2. He wasn't dry at night until K and still has night time accidents 1-2 times a month.

[FarmerBeth]

Originally Posted by cyclamen 

I would like to recommend a book called "Child of Mine" by Ellyn Satter.  That might sound weird as it's a book about feeding but she talks a lot about control and about what is the parents responsibility to control and what is the child's.  ONe thing she says alot is there is some things a parent should control (the situation - what, where and when food is served) and some things the child must control (in the case of feeding how much and whether to eat).

Anyhow, this book has been tremendously helpful for me in thinking about how I approach DD's physical needs - not just her eating.

I would guess that for instance, while you could set a boundary that between 1-2pm every day (or a rhythm.... after lunch and active play) he will be in his room and it will be dark and quiet to give him the opportunity to sleep...and maybe you will be there if that is what you have always done.... you can't make him sleep.  No one can, and it is unreasonable for anyone to expect you to make him sleep, because that's simply not how human beings work, last I checked.  As parents we do what we can, like the pp said, to make the situation amenable to what needs to happen.  I think that anyone who is expecting you to control something that is not yours to control is having an unhealthy expectation.

I am in big agreement with the bolded.  I think that if we don't allow children some control over their own bodies, it can cause autonomy issues later.  I also think that some children have different needs (especially children with sensory issues) and all the consistency and control in the world will not change the behavior.  With DS1, I can remember how, completely against instinct, we tried the whole Ferber sleep method thing in desperation.  DS1 was keeping DD2 up when she desperately needed sleep and we were going crazy.  Despite being told it would work if we stuck it out, it did not work at all.  We ended up with a screaming, head banging, miserable toddler who would reached an inconsolable point where he couldn't soothe in the day.  Our doctor ended up recommending modifying the earlier co-sleeping situation because it was the only thing that worked.

Bowel holding behaviors are very common for kids on the spectrum or with ADHD.  It might be about control, but not necessarily that you are giving him too much control.  He could just be anxious and scared and holding on to the things he can control.  If you are being as consistent as you can be, and providing him with routine and structure, then that's really all you can do.  The rest is up to him.  You really shouldn't beat yourself up for having a higher needs child.  My DH, who was a stay at home Dad at the time, got this structure and control line all the time when DS1 was a preschooler, and it just makes me mad thinking back on it.  If more care had been put into looking at why we had a child with these difficulties instead of placing blame, then we may have found more appropriate help and treatment for our son, sooner.  I feel so grateful that we later found more constructive help.
 

[crunchy_mommy]

Originally Posted by FarmerBeth 

If more care had been put into looking at why we had a child with these difficulties instead of placing blame, then we may have found more appropriate help and treatment for our son, sooner. 

This is what I'm talking about!! And there isn't a ton of blame in real life, for the most part the people involved are very supportive, it's just the little comments that get to me. And the other things I read that I take way too personally.

And I guess this was more of a vent than anything else but I am open to advice on these issues... We do try to do a quiet time but DS associates the bedroom with sleep and cries hysterically the moment we get in the room, he just totally loses it and he never calms down and relaxes, he just escalates further. We tried starting with just 5 minutes of quiet time, with the goal to work up to more, but he can't handle even the first 5 seconds. He hates the dark, he hates the noise of the a/c and fans (it's 105F here, otherwise I'd turn them off!), he can't stand laying down, he can't deal with me being quiet. It's not a control thing and it's not a consistency thing and I don't sense that he'll ever get used to it -- he has only EVER been able to nap while nursing (latched on the entire time) and I just can't do that anymore so he just doesn't nap, even though he really needs one.

I'm not too worried about the potty training issue but it's just one more thing that everyone seems to think I'm doing wrong.

I can't make him eat or drink or sleep or poop or whatever and I do think I provide a lot of consistency, even though our way of doing things is different than others'... I'm hearing that I'm letting him run the show because he stays up 'til 11:30pm, but that was a carefully thought-out choice that ensures he gets the most sleep possible (he wakes at 10:30am) -- not just, Eh, he can do whatever he wants.... It works best for ALL of us... *sigh* I don't know if I'm really being judged or I just really judging myself. I guess I'm having a tough day (week? year???)

[FarmerBeth]

It's pretty easy to judge yourself, Mom guilt and all.  Really, with a pre-schooler you can go with whatever schedule works for the family, there's non school or anything forcing you to conform to anything, yet.  I had a lot of night shifts to deal with when the first two kids were little (and DH went to school to be a nurse when our youngest was little) so we sometimes liked the kids to stay up so that it would be quieter for the night shift parent to sleep while the little ones slept in.  It's whatever works.  I wish I had sage advice about the sleep, but our DS1 pretty much settled just because he got older and started to settle.  We went through the same thing with naps and just had to wait for him to outgrow the need.  We sometimes managed naps with the covered bike stroller (we had a two kid, meant to take up to 100lbs one that was very enclosed, so DS got movement but not so much stimulus as if he were in the open air), but it didn't always work and that was us and our son, it might not work for everyone.  We had a very set and predictable bed time routine, which started to get good results by about age 4 (wish I could say it was sooner, but it wasn't) and things got better from there, although until this year (he's 11 now) he'd fall apart if he didn't get the routine at bed (he had one for me and one for DH and was OK with that but the routine had to be the same for what he expected with each parent).  We had to just do our best and learn to except that some things would go differently than for "everyone else's" children because he was just a different child with different needs.

[loveangel]

Warning: Spoiler! (Click to show)

 

I recomend you the same book

[Emmeline II]

Originally Posted by crunchy_mommy 
This is what I'm talking about!! And there isn't a ton of blame in real life, for the most part the people involved are very supportive, it's just the little comments that get to me. And the other things I read that I take way too personally.

And I guess this was more of a vent than anything else but I am open to advice on these issues... We do try to do a quiet time but DS associates the bedroom with sleep and cries hysterically the moment we get in the room, he just totally loses it and he never calms down and relaxes, he just escalates further. We tried starting with just 5 minutes of quiet time, with the goal to work up to more, but he can't handle even the first 5 seconds. He hates the dark, he hates the noise of the a/c and fans (it's 105F here, otherwise I'd turn them off!), he can't stand laying down, he can't deal with me being quiet. It's not a control thing and it's not a consistency thing and I don't sense that he'll ever get used to it -- he has only EVER been able to nap while nursing (latched on the entire time) and I just can't do that anymore so he just doesn't nap, even though he really needs one.

I'm not too worried about the potty training issue but it's just one more thing that everyone seems to think I'm doing wrong.

Perhaps you should see an OT. It seems like he has some sensory issues going on and you could use some help figuring out ways to help him be more comfortable. Business that do OT (like this http://www.stoneoaktherapy.com/index.html) in house tend to have several types of equipment he can try.

On thing that ds' OT had us do was the brushing (it was a little white plastic soft bristle brush specifically for this, and joint compressions--we've totally slacked off this summer, but when ds was in school it really helped him calm down at a time of day where he tended to be hyper (long after his ADHD meds have worn off).

You could also try noise reduction ear phones or ear muffs -- the ear phones may feel too heavy or the ear muffs might not help enough but it's worth a try.

http://www.envirosafetyproducts.com/peltor-kid-earmuffs.html

A therapy swing could also be helpful for getting him to relax, and if it was installed in his room it may help break his firm bedroom/sleep association.

http://www.amazon.com/CHILLY-SWING-RELAXING-OCCUPATIONAL-THERAPY/dp/B001V6POUS

Here is a cheaper, net version http://www.amazon.com/eSpecialNeeds-com-Therapy-Net-Swing/dp/B003ZN7LBU/ref=pd_sbs_t_5

[crunchy_mommy]

We do have an OT come actually, I'm just not sure she knows exactly how to help him. It's only been a few months and a lot of the suggestions she gave were things that we'd already tried or things that would clearly not work for him. She seems big on helping him adapt to the environment, rather than sheltering him from it in any way (like I think she'd be against the noise-cancelling headphones). I'm not sure yet if she's just not going to be able to help him, or if she just needs to get to know him a little better before she can figure out things that would work for him.

I like the therapy swing idea, unfortunately our house is too small to fit something like that though... plus he just seems to hate sitting or laying down or reclining (unless he's on me & I'm reading book after book to him, that is!!) I can try the brushing, don't think he'll like it but it's worth a shot!

Every time I think I understand DS, he throws me for a loop, so it's hard to get anything to work. We have seen some improvement in social settings, which is great, but he's still tough to deal with at home, and unless we come up with novel ideas on a daily basis, he is just crazy.

[Thing1Thing2]

Hugs Crunchy Mommy - I don't have much advice, just wanted to encourage you. 

Don't be too rough on yourself. 

From the look of things, you're doing the best you can with the issues your DS has. And I believe you know more about your DS than anyone else.

There is some really good advice here, and I plan on picking up "Child of Mine" as well.

Feel better! 

eta: The not being able to lay down reminds me of my DS before I took him off of certain foods. It was caused by silent reflux. How has his diet been? 

[crunchy_mommy]

He is on a vegan diet, mostly gluten-free & soy-free as well. I hesitate to restrict his diet even further, even just to 'test out' the theory, and I can't seem to notice any correlation between what he eats and how he feels/acts. What foods contributed to your DS's reflux?? It's not something I'm ready to rule out but I'm not really sure on it either. But he definitely has hated lying down since birth -- and had very obvious reflux until he was about a year or so, though it didn't respond to traditional things like positioning and stuff so I'm not positive it was even 'reflux'... doctors always brushed me off... he has a really high tolerance for pain so I'm not sure if he could even tell me if anything was bothering him (and especially not if it's bothered him his whole life).

And thank you all for the encouragement & validation!

[Thing1Thing2]

Well, for starters, the gluten and dairy *completely* changes him. It started at birth.  I noticed when it was in my breastmilk he would be up all night screaming. 

When he learned to roll over, he would roll over and sit up like it was hurting him to lie down. I would keep putting him down and he would keep rolling over! He would scream and cry all night because he was so tired. He has been gluten and dairy free since then. Since he moved on to solids, there were a few times where I decided to let him eat them - to test it out and see if he had outgrown the sensitivity. Those few times were absolutely torturous for us as his sensory issues skyrocketed and he was extremely difficult to handle. And it took him weeks to detox from them.

He is also soy and corn free since a baby.  Lots of corn will give him bad reflux. And corn is in almost everything from vinegar to xanthan gum.  Soy - I will not let him have at all because I'm pretty sure he had an allergic reaction to it that landed him in the hospital when he was 1. 

My DS is much like yours, his reflux never got better with positioning.  I agree, it's so difficult to restrict the diet even further, but if you did decide to test anything I would try gluten or corn. Do you eat vegan and gluten/soy free as well? 

I don't want to make it sound like diet is the sure fire solution with your DS - as of course you know, every child is different. But it has helped us to bring the behavior to a less intense level. Hope you find your solution soon.

Edited by Thing1Thing2 - 7/23/11 at 5:19pm

[crunchy_mommy]

We did try a 100% soy-free gluten-free corn-free (vegan) diet for a few weeks but it made no difference at all so we backed off on it. I eat whatever he eats, pretty much, although he has a little more gluten than I do (I stay GF, suspected celiac, and am much more strict with my own diet)... I'm pretty sure if it's a diet thing, it's some obscure thing I'm not thinking of. Someone mentioned salicylates but it sounds like they are in EVERYTHING he eats so I'm pretty clueless how to go about removing them without starving the poor kid!! He didn't really eat anything until he was 14mos old so it would have to be something that affects him through my milk as well as directly, and it seems like we've already ruled out most of those things.

[Thing1Thing2]

Yah, if you didn't notice a difference at all then it's prob not food... and it's no fun to limit the diet.. just ask my DS!

[Piglet68]

I'm sorry you are going through this. I get so sick of how everybody blames the parents when a child has difficulties. It's like nobody wants to believe that maybe the kid is trying to communicate something - they don't even count, it's all about placing the blame on you. I so know where you are coming from because I've heard it all about my kids, especially my son. Now that we are closer to figuring out his issues (probably AS or autism) people are backing off because now I have an "excuse" for his behaviours. It frankly pisses me off that I need this: does every child need a label to be heard and understood? But that's another subject, lol. 

Anyways, I just wanted you to know that I have so been there and I'm sure many others on this board have as well. You know your child better than anybody, and you know in your heart what will feel right to you. Don't ever do anything that feels wrong no matter who tells you (experts, doctors, etc). Do the research, come to that place on your own if that's what happens, but don't be untrue to yourself because you know your child best. Parent the relationship, not the behaviour. Your child will need you to be a safe place that can be trusted to meet his needs as best you can.

I don't have any suggestions except this: things change. He's at an age where napping is still part of his life, but it won't be long before you are past that and things can change. Just read about all the sleep issues moms of "neurotypical" kids have on the other forums here! You are not alone, even if your son's issues are more extreme. It may take a while to figure out what works, and you may not find it before that need is outgrown and a new one appears. But believe in yourself - you are a Good Mother, you know your child best, you will do what is best for that child. Don't let anybody beat you down about that!! (big big hugs!!)

[LynnS6]

No, he feels completely out of control, which is why he's trying to control what he can. Really, though, you know something is up when the 'regular' things don't work with your child. Our son has very mild special needs and I was still completely amazed that the techniques from books actually did work when dd came along.

You're doing the best you can and your son will benefit from that eventually. It's just hard when the 'usual' stuff doesn't work for you child.

[LynnS6]

P.s. have you tried weighted blankets? For some sensory kids they can make a huge difference. I'd also be tempted to demand a referral to a gastrointestinal doc to check for reflux.

[Thing1Thing2]

ITA

I'm amazed at all the work that goes into my DS. It seems like other parents have it *so* much easier. What a relief to know that it's not due to "bad parenting", especially when you've tried everything to help your child.
 

Originally Posted by LynnS6 

No, he feels completely out of control, which is why he's trying to control what he can. Really, though, you know something is up when the 'regular' things don't work with your child. Our son has very mild special needs and I was still completely amazed that the techniques from books actually did work when dd came along.

You're doing the best you can and your son will benefit from that eventually. It's just hard when the 'usual' stuff doesn't work for you child.

[crunchy_mommy]

THANK YOU!! I feel like if one more person (or book, or article) says, "You just need to do X," or, "All toddlers like Y," or whatever that I am just going to lose it.

I have not tried a weighted blanket, but my attempts to mimic it haven't been successful so I don't think it would work for him. I did have marginal success this week with putting on books on CD for DS to listen to at 'quiet time' -- he still didn't nap but he did sit still & mostly quietly with me in the bedroom for about 15 minutes which is a huge improvement over screaming the whole time! Hoping we can work up to actually napping...

I don't know what's going on with him for the last 2 days but he is miserable again. So frustrating that I can't figure out what's setting him off & how to help him. ;(