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#1 of 16 Old 04-03-2011, 07:32 AM - Thread Starter
 
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There was an old locked thread that was fantastic about how to help kids who fit this description. So thankful!  

 

Can I also please just get some support if I vent for a moment before I resume this challenging task of helping my babe?

 

I awaken in the middle of the night full of bad feelings that I keep to myself because I don't personally know anyone who can understand and also because I feel guilty worrying about myself when I need to buck up and just focus on helping my extreme form of Spirited child. I just feel so angry and alone- I see babies and they are aliens. I've NEVER met a baby as challenging, exhausting, life-draining as mine. But they must exist because the explosive child book exists. So to you moms w/ this challenge- do you ever feel like other people just don't get it? I mean, all my parent friends are from LLL and very peaceful parents and I learn a great deal from them. But that stuff just doesn't cut it for us- of course we parent this way and the sensitivity has helped us not make things collossally worse and led us to understandings of our unique package. But other moms just don't endure the sleep deprivation, the meltdowns that go on for HOURS, the intensity.

 

My child is 3. Still requires a parent to hold her at all moments during naps and nighttime sleep. Wakes up the instant you try to sneak away. Won't sleep any other way even tho we've tried every method ever suggested- gentle and later more harsh (not too harsh but further than we wanted to originally go due to desperation.) I am her pacifier- if I try and remove my nipple ashe always wakes up and it hurts me when she bites me in her sleep. I am awaken 25-100 times nightly. Other people just don't even comprehend this.

 

Other areas of life w/ her are of this intensity. I'm not enjoying parenting- it's way too exhausting. And this makes me so sad. And then people criticize that- well it makes me want to rip their heads off. If they had a child like this they wouldn't be so damned judgemental. I've been approached by other adults in public during a meldown w/ their wide variety of criticism (some as "advice") and it just makes me so angry. This child is so different from anything I ever see. 

 

I've been a hero, not a bad mom. That's the truth. And I'm so full of anger about the way I am treated, the murmurs of the judgemental people when we're in public. I'm supportive, gentle, loving, open mindd, empathetic. She just has this serious brain glitch that other people don't comprehend and I'm jealous of people with normal or even spirited kids and angry at judgemental people.

 

Anyone been there? Anyone else all alone w/ their "explosive" child? 

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#2 of 16 Old 04-03-2011, 11:26 AM
 
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I couldn't read this and not respond.

 

Our situation is not that bad, but I felt very alone this winter when it appeared that all the other kids happily congregated for Christmas activities and all our kid could do was disturb (and melt down, and explode!). It got so bad that the children's psychiatrist we saw seemed convinced she was looking at autistic spectrum disorder. For now, this has not been confirmed, and things are much better.

 

DS had a fixation with my hair, which he needed to use both as chew toy and transitional object, and we used to have real fights at night over his pulling, yanking, biting and chewing my hair (and constant grabbing it whenever my head came close to him which, when you think of how often you have to help a 4yo with snow pants, boots, seat belts etc is pretty often). He needed two hours to fall asleep at night and would wake up frequently, screaming about animals crawling or plants growing in his bed.

 

In our case, at the suggestion of the psych we actually were able to redirect his fixation from my hair with a reward scheme (backrubs at night, which magically helped for during the day, too). He now twirls and twists his own hair when nervous and on falling asleep and uses chew toys, which has helped our relationship immensely. He does understand now that a person cannot be a chew toy or fidget toy. The backrubs (and magnesium and fish oil supplements) make him fall asleep more easily. We are now planning to transfer him into his own room so his tossing and turning at night does not wake up DH so much, but aren't so sure of our plans yet. (Not wanting to boot DD out of the parental bedroom at the same time and the attending possible jealousy issues being a complicating factor). Sleep deprivation gets DH and me to a point where we end up more and more sick because it wreaks havoc with our immune systems. So something had to give. We shall also soon start therapy with an OT with a specialization in developmental counseling.

 

Are you getting professional help with your DD?


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#3 of 16 Old 04-03-2011, 12:01 PM
 
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I didn't have any negative people approach me during ds' melt downs, fortunately. Maybe it had to do with my "stone face", not sure; I wouldn't look upset, I'd just contain ds as best I could and leave as soon as I could. If I had known that ds had specific issues and someone approached me with an unhelpful look on their face, I would have said "you think you know what is going on, but you don't. When I need advice, I pay for it."

 

If you haven't tried it yet, I recommend time-released melatonin to help with her sleeping.


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#4 of 16 Old 04-03-2011, 12:24 PM
 
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I completely understand your feelings of frustration with others and the situation.  I have a son who is now 11 with Developmental Disabilities that we are still trying to fully understand since he doesn't fit the typical picture of many.  Your going to have to decide quite purposely that the most loving and well intended will not understand what you are going through and learn to smile at them and move on.  They are misguided and uninformed.  My son had "sleep issues" as well.  He is 11 and just beginning to go to bed on his own.  Routine is a huge component. Based on your childs interests and needs select a simple routine that you can stick with, geared to what works for your family.  The routine itself will help your child take the necessary internal steps of preparing themselves for what comes next.  The more they can anticipate what comes next the more the routine is a support to them.  Based on what you observe about your child try things that will replace the undesired activity and place them in your routine.  Perhaps choices can be given about what to chew on or suck on in the middle of the night, and place something between you so your child can't bite you.  Just a thought.

 

My 11 year old is just now taking himself to bed.  He has always needed help to relax and fall asleep.  I used to read, rub his back, and talk about what we were grateful for, I waited until he was fully asleep and left.  Is this recommended probably not, but it was what my son needed.  When it seemed possible we tried leaving before he was fully asleep, then when he was awake and now he is on his own.  I always assure him he can come into our room if he needs to.  He usually shows up at 3 or 4 am.  Is this the right way to do it?  What really matters is what works for your family. Always be looking for any time a child could manage on their own and give them the support and encouragement they need to do it themselves.  They are unique individuals with their own set of circumstances to deal with and some that we can't see and they can't tell us about.  Provide order in their environment, routine, and be consistent with your approach this will help your child to find his or her way.  Once you establish a routine stick to it.  Make sure your are speaking what you want, not what you don't around them, because they are good listeners and will follow what you say.  This takes practice.  I've learned to say he is getting so much better at....he is working on...pretty soon he will be....it's going to be great when you...I can't wait.  I don't know if this helps at all, but I just wanted you to know your not alone and your child needs the unique gifts that you have to offer.  I have found too, that having a third party counselor has been very valuable to both of us and finding an adult friend who really gets your child and can laugh with them (sometimes when I can't) and truly love them has been a giant gift.  I have found that if I can keep smiling others around me don't take it so seriously, and I can stay I can stay in my own truth.  

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#5 of 16 Old 04-03-2011, 02:03 PM
 
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I can identify! I really don't think most other people can understand... although I haven't experienced too much direct judgement, I've had all kinds of standard advice given to me that I just think to myself "if only it were so easy with this child...".

 

Some thoughts...

have you had an OT assessment for sensory processing?

have you had a sleep study or any kind of medical investigation of the sleep issues?

 

My youngest DS (who is actually not my most challenging...) had several issues impacting on his sleep which caused great difficulty falling asleep and resulted in wake-ups every 10-15 minutes for much of the night. He had significant sensory issues, restless leg syndrome due to low iron, and was likely not making enough melatonin. We gave him melatonin and iron for a while, and continued to address his sensory issues (which we had already been trying to do before the supplements started), and he is now the absolute best sleeper I could ever imagine - it is truly unbelievable!

 

My older DS has just undergone extensive psychological  testing to try to determine what is at the root of his explosive behaviors, and we will also have a telepsychiatry evaluation soon. We have tried so many strategies with minimal success, I really hope we will have more clarity for how to move forward soon.

 

I agree that it is so helpful to be able to hear/read others' experiences since it really can be so isolating in real life!

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#6 of 16 Old 04-03-2011, 05:42 PM - Thread Starter
 
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Awesome responses. I am not alone in the world HOORAY for internet!

 

I could try an OT.  I'm a little nervous about approaching any doctors about sleep issues although an evaluation by someone trusted would be great. I am reluctant to discuss this w/ our new doctor- the old pediatrician said we just needed to let her cry it out when I brought this up when she was 6 months old. Any ideas on that? Could I just try melatonin on my own? A multivitamin wouldn't hurt her either and might help if some of this is nutritional.

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#7 of 16 Old 04-03-2011, 09:03 PM
 
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I think you could try melatonin on your own - there are probably others here who have done that. I think we gave DS 1 mg when he was about 2 years old, but in all honesty I don't recall for sure now. The Dr. at the sleep clinic told us the appropriate dose and we also confirmed with our Pediatrician.

 

Re: approaching a doctor about sleep issues, I know it is hit and miss whether they will be at all helpful or take it seriously. Our family Dr kept saying "some babies are like that..." for a very long time. I finally got a referral to a Pediatrician (referral is required here) when he was showing signs of a language delay along with severely disrupted sleep, and I still had to push to get the referral. Luckily our Ped was wonderful and took it seriously from the start since the wakings were so frequent and impacting his development. She did a bunch of testing to rule out other underlying causes and then sent us to a sleep clinic - the sleep clinic also took it seriously. No one (aside from well meaning friends) ever told us to let him cry it out, but perhaps part of that is because he also had a history of crying unconsolably for hours on end (so you can imagine how effective that approach would be). I would hope that with a 3 year old they would look seriously for an underlying cause when her sleep is that poor, even if they do make some behavioral recommendations.

 

Definitely look into an OT to assess sensory processing - some simple strategies may make a big difference over time.

 

 

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#8 of 16 Old 04-04-2011, 06:58 AM
 
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Sleep clinics are awesome. Developmental peds can behelpful too.

 

I know this may sound odd, but if you need sleep help....ask for a Dev Ped that focuses on Visual Impairments. Most of our VI kids do not sleep well at night. We use Melatonin (sublingual and time release).

 

The first studies of using Melatonin were done in Montreal on Visually Impaired children.

 

Oh no, I completely forgot I was supposed to give someone the name of my time  release......if you are the person I was supposed to give it to, I'm sorry. I will look for the thread and reply.

 

 

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#9 of 16 Old 04-04-2011, 07:20 AM
 
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It's sort of buried in my long reply, so I'll just repeat the suggestion for a magnesium supplement for disturbed sleep. I hear magnesium citrate has the best bioavailability. I was lucky enough to find one with orange juice concentrate that DS likes and now asks for every night (no idea how much you'd give, we just divide an adult dose by three) and it helped a lot with calmer sleep, too. I read that others prefer epsom salt baths for magnesium but I have no idea how you'd ever know how much a child is actually absorbing through her skin.

 

I can imagine that having been told just to let her cry it out at 6 months has put you off mentioning sleep problems ever again, but at that point you were given a behaviour management suggestion that, while there are reasons most parents on this board including myself wouldn't touch it, has a proven record of working with typical older babies who have typical sleep problems. Your child is three and does not have a typical sleep problem. Push for a sleep clinic eval. There is no way anyone could enjoy parenting or, frankly, life, with the amount of sleep you're getting and I have a hunch that could go for your daughter too - she isn't sleeping well either, after all!


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#10 of 16 Old 04-07-2011, 09:35 PM
 
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This is so crazy!  I just searched "explosive child forum" and found this.  And it is current.  I feel so alone.  My 3 1/2 year old is SO hard and no one understands.  No one.  I feel so lucky to find this thread.  He still sleeps right next to me all night.  Would nurse all night if I let him.  I also have a 1 1/2 yo and it took the last 1 1/2 years to get to the point where he will actually wait until about 4am to ask to nurse.  So it can happen.  He still reaches out for my hair all night.

My main issue is during the day.  He is so inflexible, completely resistant to everything and barely eats.  I finally have got him to the point where he only nurses 3 times/day- still asks about 50 or more times a day though.  Every single time I tell him that the nursing session is over, he tries to hit/spit/scratch me.  He scratches his sister in the face if she takes something from him or does something in a way he doesn't like- this is daily.  He never wants to go anywhere anymore.  Yesterday when we got to the park he didn't want to get out of the car.  I am so tired of being a cheerleader.  I realize that its not all going to be "Mary Poppins," but it seems like there is more bad than good.  I am worn out.

I am starting to think it is a nutritional deficiency.  We are very conscious of eating healthy.  I was a vegetarian for 8 years prior to and during my pregnancy with him.  He was extremely colicky and inconsolable for the first 6 months of his life.  We had bouts of thrush and Candida overgrowth.  He seems to only want to eat starchy carbs or fruit.  Refuses to even try almost everything I make.  Has anyone else heard of or considered the GAPS diet?  I have heard really good things about it.  Has anyone else read The Explosive Child?  I think these may be good resources.  I am considering starting the GAPS, but need my emotional reservoir to be fuller before I start on that endeavor- it will be so many fights.  

I guess I don't have any advice to offer.  Just support.  It sounds like you are an amazingly dedicated Mama.  I admire your love for your baby and perseverance in searching for answers.

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#11 of 16 Old 04-13-2011, 07:00 PM
 
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I read The Explosive Child and it was a big disappointment.

 

The assumption is that you must be a mainstream parent who uses rewards and punishment, yells and argues with your kids regularly, etc. The "solutions" were the kind of gentle parenting that I've always used, is advocated both here on MDC and at LLL.

 

The only thing I got out of it was "wow, I can only imagine how much worse this would have been if I hadn't done gentle parenting from the start". 

 

 

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#12 of 16 Old 04-21-2011, 10:45 AM
 
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 i have never read this book, but it sounds like us. my family was stunned when they finally witnessed one of my son's tantrums at night. when we come to help him if he wakes up in the middle of the night, sometimes he will kick at your face, and try to claw you. i have been clocked by him several times at the grocery store as well during one of his tantrums. he is just 4. we thought maybe he had aspergers or something. i really don't know now. people just stare at us when we are out. not sure if they think i am too dumb to discipline my kid the way they think i should or just a bad mom.:(


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#13 of 16 Old 05-03-2011, 07:02 PM
 
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Mmm yes. I often times get "all they need is a swift kick in the *$$". Umm how about no. Never.

 

I'm reading the book. It helps. I can't say that I've always been the most dedicated GDer but I've stayed away from physical punishments always and TRY to be positive.

 

It does take some time and patience to implement Plan B. It can be a real issue as a single mama of 5, who has a house to keep and a full time job. Sometimes *I* am tapped out from the day and the last thing that I can cope with is a screaming, disrespectful, violent 8 and 5 yr old.

 

I'm at a complete loss when my 5 yr old flat out says "no" to me when I say it's time for quiet time in bed. Or that it's jammie time. 

 

It's challenging for sure. These are kids number 4 and 5. The first three were fine!! These guys are super spirited!!  

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#14 of 16 Old 08-21-2011, 07:40 AM - Thread Starter
 
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THANK YOU so much for all these replies. It prompted me to get her seen by an OT and our lives are transformed!!! She is so much happier and peaceful. So many things were sensory issues- I knew she needed us intensely but I didn't know how to help, and now I do!

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#15 of 16 Old 03-27-2014, 05:26 PM
 
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I am there and have been there for the past 8 years with my son. I understand truly. This post is from several years ago so I'm not sure how relevant this reply will be, let me know if you get this and are still needing to talk to someone who really understands because I am looking for the same. There is nothing more isolating and frustrating.

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#16 of 16 Old 03-28-2014, 04:54 AM - Thread Starter
 
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Hi everyone,

I started this thread years ago it seems, but I am so thankful to all of you for your interest and replies. Support of this nature is needed in our world! I have grown and changed alot since these old days, and here's how:

1. Back when things were bad and there was no guidance to be found in the realm of gentle parenting, I just muddled my way through. My husband and I spent loooong hours with this intense child. We never really did find a way to help her out of these crying screaming fits. I do think it is a brain problem. She is older now, and they happen less frequently, but they DO happen when she has certain viral illnesses- mono, flu, and some mysterious GI virus going around. FYI, this is also true of schizophrenics- viral illnesses worsen their disease.

2. I have concluded that environmental polllution is the major underlying cause of the brain disease. Maybe other things come into play- genetic makeup, immune function (another reason to wait on vaccines til they are older, folks). We no longer eat ANY chemicals in our food. We no longer clean our home or bodies with ANYTHING but natural substances. We bought her a woolen mattress and built her a bed of nontreated wood. I breastfed her as long as I could go (nearly to age 5). She wanted to occansionally still have breastmilk, but I was pretty done by then. This factor is IMPORTANT because there are live stem cells in breast milk that survive digestion. Also, there are bacteria in milk that shape the biome of the gut. The gut flora are extremely important in affecting our brain function. For more info, google GAPS diet and weston a price.

3. We tried our best to heal our marriage. This baby took a toll on us and we were hanging on by a thread. I basically just sort of became like a Buddhist in my mind so I could not focus on how angry I had become at my husband. That made me able to be calmer and somewhat happier (though not as happy as I would have been if he'd just loved me and been compassionate, but since that wasn't happening at that time, this was all i could do.) Now years later we are stitching up those wounds.

 

And she is BETTER. She is still autistic or whatever label you choose to slap on her (I personally know it is much more than that, but there is a brain damage component due to the crap in my body prenatally and the crap we breathe in everywhere...) but one can only tell it when she's been ill. The rest of the time she is well and very happy. She is a beautiful child. I healed myself spiritually, she healed simultaneously, and now my marriage is following suit. We have to get through it with love.

 

I hope this thread keeps going, because moms need LOVE, not judgement. These kids are a lesson to Earth, if we will listen. They absolutely need a clean environment and to be held for many hours while they cry in frustration and rage because their brains are misfiring and they can't make it stop. Heal their bodies and their guts, and hope for the best. An ativan every now and then or astragulus root or valerian tea, and earplugs to dampen the sound, can help mom keep sane too. You won't need herbal/chemical aid forever either, but they do feed off us and sense our energy.

 

LOVE to you all, and thank you in reverse for all these replies. It's a long dark road but I promise there is light on the other side.

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