trying to categorize and analyze the meltdown

So after many weeks of really good sleep, last night was ROUGH.  In fact, M woke up around 11pm having a BIG meltdown. This was like the meltdowns he used to have as a young toddler in which he wants everything and nothing at the same time.  Except now he has words. It sounded like high pitched screaming combined with phrases like, “gimme some spaaaaace!”, “don’t leave me!”, “I need my Bubbie (blanket)!”, “I don’t like Bubbie!”, “I need agua!”, “I don’t like agua!”, etc. and those phrases are spoken in rapid fire succession. It is nonsensical and I feel helpless for how to help him.

My mathematician side needs/likes to categorize meltdowns. I pretty much use the same scale as hurricane categorizations.  This one was a  category 4, but mostly because of the length – 2 hours ish. It was only a 3 in severity. We’ve never had a category 5, I am saving that for a really special situation. Plus, then I can still say, “it could be worse.”

The scary thing was that we aren’t even in hurricane season.  I mean we’ve had a little rain here and there and an occasional afternoon thunderstorm and definitely some overall cloudy days.  This caught us totally off guard.  I should have seen this coming, and from what I can guess is the cause, it was my fault.   There was really just too much change this week.  A special event at school. I was away this past weekend. And the icing on the cake: we went out on Wednesday night and left the kids with a babysitter. They had a great time with the sitter but M was slightly off schedule.  Yesterday (Thursday), he was in a very rough mood, literally running into walls, me and M2 just to blow off a little steam.   He gets this look on his face and I know it’s in everyone’s best interest to stay out of his way. That’s pretty much what I did last night. I didn’t work very hard to help him release the tension in a productive way. I cooked a meal for dinner that was a gamble whether he would eat or not.  I lost.  I should have probably had him do some sensory work.  It’s easy to think back and give a list of “should haves.” He went to bed hungry, irritable and overly tired.  3 hours later, he was up screaming and totally dyregulated.

I did try some new methods for helping to bring M out of the meltdown. I had some success with this.  One of the techniques I learned at Dr. Chasnoff’s seminar a few weeks ago was to ask questions that activate the other parts of the brain during that “fight or flight” meltdown phase.  It definitely seemed to help.  I think I need to keep practicing this technique because a few of the questions that I asked seemed to send him reeling but overall successful.

I am thankful that this doesn’t happen as often as it did in the past and I am hopeful that we all get a good night’s rest tonight.

Trying to get some SLEEP part 2.

For a little background on our sleep troubles, see this post.

Melatonin is my new hero.  We have had 2 whole weeks of restful, full nights of sleep.  “We” meaning, me, G, and both M and M2. Maybe it is still too soon to call.  After all, in the past we have had random months of success.  However, none of these past sleep successes were as directly related to a change.  We started giving M a 1/2 mg of melatonin a half hour before bedtime. He goes to sleep  easily and sleeps through the night 10 to 11 hours.  He wakes up happy.  He still naps well at daycare, he doesn’t get as grumpy in the afternoons.  On some nights, he wakes up to pee but then just falls back asleep easily.  Usually without our help.  We just hear his little pitter patter back and forth to his potty.  He has woken a few nights in the middle of the night and called out for us but he usually falls back asleep quickly without a meltdown or any form of distress.  Seriously, it seems like a miracle.

Better sleep is leading to better days, and a much happier household around here.

Of course, this miracle does not come with “no strings attached.”  A quick google search for melatonin and children will bring up tons of articles that say, don’t give it to kids, or take it yourself. Some of the headlines:

Researchers warn doctors, parents not to give melatonin drug to control sleep problems in children

Three reasons melatonin is bad for you

However, I am never content to just let the internet interpret “research” for me with clickbait. I understand the underlying concerning principle, that you are giving your child hormone therapy.  The general recommendation before starting melatonin is to find the underlying cause of the sleep problems.  Hmmmm.   I think the underlying cause is that my son’s brain chemistry is a bit off, or more likely way off. We haven’t had a sleep study done, but I can tell you with nearly 100% certainty that my sensory sensitive child couldn’t give an accurate result of a normal night’s sleep attached to monitors and sensors in an unfamiliar environment. My best guess is that he has a melatonin deficiency or a problem with processing melatonin. The problem in general with research is that if it is done on a neurotypical population, it is hard to relate to a kid with significant changes in brain structure.

After hearing Dr. Ira Chasnoff speak a few weeks ago, I understand so much more about the structure of the brain.  He talked a lot about the damaging effects of alcohol on the Corpus Callosum. Sitting right under the Corpus Callosum is the pineal gland.  The pineal gland is the little guy responsible for making all the melatonin.   Just the proximity makes me think that chances are that M has some pineal gland abnormalities.  Any one looking for a research topic on FASD? Let’s measure some pineal gland volume by MRI and relate it to sleep issues.  These HAVE to be related.

We already have a bedtime routine,  limit “white light” before bedtime, use white noise, diffuse lavender or other calming oils, etc. Everything that has been recommended, I try. Nothing has worked as well as a small dose of melatonin.

Here’s where things stand.  I feel compelled to quit the melatonin.  It’s been two weeks of glorious sleep.  I wonder if now his sleep patterns are once again regulated. Probably not, as the melatonin certainly can’t fix underlying structural brain problems.  But before I give up my miracle, I want to know what is known.  Do the risks really outweigh the benefits?  The risks from not getting enough sleep seem far worse in my mind.  Here’s a literature review for what I found during a quick search:

Long-term follow-up of melatonin treatment in children with ADHD and chronic sleep onset insomnia.

This study was done on kids with ADHD who were having sleep onset issues. From the abstract:

Long-term melatonin treatment was judged to be effective against sleep onset problems in 88% of the cases. Improvement of behaviour and mood was reported in 71% and 61% respectively. We conclude that melatonin remains an effective therapy on the long term for the treatment of CSOI in children with ADHD and has no safety concerns regarding serious adverse events or treatment related co-morbidity. 

Melatonin for sleep disturbance in children with neurodevelopmental disorders: prospective observational naturalistic study

This study says, yes, Melatonin works for kids with neurodevelopmental disorders.  It is not a placebo effect.

The Safety of Melatonin in Humans

Summary:  Melatonin is safe for adults.   However, kids and adolescents have not been studied. It doesn’t say it is harmful, it just says we should probably research it.

I didn’t find anything about the risks but the problem seems to be lack of research.  I remain hesitant about administering the melatonin but also not willing to give it up just yet.

 

 

 

 

 

 

 

 

 

 

trying not to cry.

One of the hardest things for me to reconcile about raising kids with a trauma background, is that they need me and I need to work. In particular, I need to get to work on time in the mornings. This morning is entirely my fault today that things didn’t go well.  I hit snooze and then I turned the alarm off the second time it went off.  I got out of bed at 7:30. I normally leave the house at 7:45. But everyone slept in this morning after a relatively good night sleep and I was not about to give up a precious few moments of sleep after so many terrible nights in a row.  At least that is how I felt when my alarm went off at 6am.  I know better.   I know that my morning goes 100 times better when I get myself ready before the kids get up and then give them plenty of time to transition between steps in the morning.  In any case, I seemed to just make a ton of mistakes this morning.

G handed M an old iPhone at some point as I was getting myself and M2 dressed.   I was already disgruntled when I got out of the shower and found that happening.   However, I used it as a distraction to get him dressed quickly.   We were ready to walk out the door by 8:15.   Already a half hour late, but not too terrible.  Despite the fact that I told M twice that we were almost ready to go and he would need to leave the iPhone home.  That got lost in the shuffle out the door and the iPhone ended up in the car with him.  About 30 seconds in the drive he started screaming because he needed help with the game he was playing.  That proceeded to just escalate through the whole drive to school.   At some point he threw the iPhone at my head.  At least I didn’t have to pry it from his hands.   He was then upset that he didn’t have the phone and already in full blown meltdown mode. We pulled in to school I got M2 out of the car. She always takes her shoes and socks off in the car and it takes me a minute to put them back on. M is screaming that the buckle on his carseat is “hurting him”  I reach over and unbuckle but then he rages about not wanting to get out and not wanting to go to school.   At this point, I am still reacting calmly.   I get M2’s socks and shoes on and get her out of her seat and walk over to get him out on his side of the car.   When I open the car seat he just says “no, leave me!”  I reshut the door.   He is already unbuckled so he climbs into the drivers seat.  I go to the driver’s seat to get him out open in and he punches me in the face, hard.   At that point, the calm left. I grabbed  him around the waist while holding M2 and M’s blankie in my other arm. I marched to the front door of daycare crossing the drive but M2 has an amazing ability to go completely limp so that she is like holding on to a jellyfish and can just squeeze her way out of my grasp.  She was falling from my arms just as we finished crossing the street.  I let her climb the stairs alone but she was dawdling and I yelled at her to “hurry up!”  Normally I am not in the habit of yelling commands at my children, but I knew that I would lose the wrestling match with M any minute.  As I got through the door, needing one hand to open the door and one arm to hold M, he wriggled free.   His classroom is directly next to the front door.  I brought M2 into that classroom quickly where she went and started playing with the kitchen set peacefully.  In the meantime, M ran back out the front door back towards the parking lot and two staff members ran to retrieve him.  The whole time I was dragging him inside, he was screaming. “Stop hurting me!”  and “You are being too rough with my body!” I sit with him for a few minutes out in the lobby but then realize it is not helping and I should just get him settled into his classroom.  When I bring him into his class and start distracting him with toys, he grabs a toy from another kid and then hits him within 30 seconds of me putting him down to play.   He gets settled in relatively quickly, still saying “Stay, don’t leave!” every few seconds.   He refused my hugs and I left.

Now, back in my office, I am just too distraught to work at the moment. I cried for a minute in the car before I walked in.  I stopped and got some ice for my eye at the coffee shop below my office, hoping that punch doesn’t cause swelling or bruising. I can still feel the anger in his tiny fist as I type this.  My other eye has a significant set of scratched on it from where he scratched my eyes because he was frustrated trying to get to sleep. My face seems to always wear the marks of his frustration.

I am hoping this post will help me settle in to my day. It definitely gives me a minute to reflect, perhaps this is the little “me time” that I can allow.   I am now an hour late in starting my work for the day.   Which just means I will skip lunch to finish what I need to do.  Either that or work after hours.  Actually, both.  I usually need to do both.   I can’t help but feel like, if I didn’t have to work, these kinds of struggles wouldn’t exist in my day.  There would be no hustle out the door. There would be time to transition without someone else’s clock imposing deadlines on my day.   There would be the allowance to sleep that extra hour when the nights have been so rough.

 

trying to get some SLEEP.

 

It is estimated that 85% of kids with FASD have sleep problems (Chen et al., 2012).   Luckily in my house, we are currently at a rate of 50%.  The problem is that, while M2 sleeps like a champ, M’s sleep is horrendous.   Now, I have been complaining about his sleep since he was an itsybitsy baby.  I don’t think anyone at that point took my complaints seriously.  Ah, a new mom complaining that her kid doesn’t sleep enough, sounds serious, right?! Except since the very beginning, M had trouble sleeping. Well, not the very beginning.  In his first few days with us, he slept all the time.  In fact, we were told to wake him to eat.  He would sleep through night if we let him.  Shortly after that, he started vomiting all night long, and he was diagnosed with pyloric stenosis.   We haven’t had a good night sleep since.

As a newborn, he only slept a total of 11-12 hours a day.  And not much has changed, he maybe sleeps 12 hours total in a day now which is within the normal range for a toddler.  The only difference is that he was happy on his 11-12 hours of sleep when he was an infant.  Imagine a 6 month old that we couldn’t get him to nap, he was almost always awake from 7am – 8pm. Happy as a clam, playing and babbling on. People would always comment on how “alert” he was.  I just wanted him to take a freaking nap so I could get a few things done during the day.  I spent hours and hours reading books on how to get kids to sleep.  Sleep lady, “no cry sleep”, etc.  Some of it lead to temporary fixes, but none of it really has fixed our problem.  We don’t have trouble getting him to go to sleep at night.  It is the staying asleep that is the problem. We are often up 2 or 3 times a night with him.  Nearly every night.

The books will tell you, you are creating a crutch when you help your child fall asleep.  They need to be able to wake up in the night and just put themselves back to sleep.  Even though our bedtime routine works like a charm, I thought that maybe that is the problem.  We are influencing the environment too much and he needs to figure out how to sleep without any help.  I will admit, that in desperation, we tried a “cry-it-out” method.  You know, the ones where you go in and soothe the baby every 10 minutes until they fall asleep.  They tell you it may take a few hours the first night, but then it will get better.  Our first night, it took 8 hours and then we gave up.   It was 5am.  I had to at least get a few hours sleep before the next night.   I gave up around hour 5 on night 2 and then we were done with “cry-it-out.”  Obviously, this method works for neurotypical children with no sleep issues.   I think M just felt abandoned and he has almost zero ability to “self-soothe.”  He needs me and G as his external brain for sleep transitions.

I can tell you that when we first expressed our concerns about his night waking, people often suggested it was night terrors.  This is because from about 10-18 months, when M woke up in the middle of the night, he would scream and claw at himself and his clothes seemingly totally unconnected to us or anything concrete.   If we tried to pick him up, he would claw at me, struggle in my arms, try and climb to the top of my head by grasping and pulling himself upward.   The sight of it was disturbing.  This was not a child waking in the night asking for a bottle or to be rocked.  He was distressed.   That phase subsided for the most part, mostly because of language development. It was truly the first stage of his sleep disturbances.

Right now our bedtime routine, is dinner, bath, books, bed with his blankie, a cup of milk (I know, I know, teeth…) & white noise.  Most nights, it goes well.  He quickly drifts off to sleep.  We’ve recently added the “Rabbit Who Wants to Fall Asleep” audiobook to our routine over Christmas when dysregulation hit a peak.   Now, it seems to be very soothing to the kiddos as they drift off.

Currently we deal with a few major sleep disturbing issues: night-terrors, the night diaper conundrum, and god-forbid, some outside noise wakes him up.   The night-terrors are the best of the scenarios. They really only bother us.  I run out of bed to hear him struggling with some unknown terror for a few minutes and then he settles back into regular sleep.  I lose sleep, but he does not.  Really, best case scenario in our world.

Then there is the night diaper conundrum. We potty trained about a month ago.  Mainly because, diapering had become such a struggle.  M did not want to wear a diaper.  If I could distract him, I could usually change him with little to no trouble.  But if I had to interrupt him, even with careful transitions, he would get so distraught it would become a wrestling match. The scratching and punching got to be too much and potty training was on my agenda for my Winter break from school. Potty training was a breeze.  He was excited that there was a diaper alternative.  But now, he doesn’t want to wear a diaper at night.  Not only is it a struggle to get a pull-up on him, he will usually just take it off sometime in the night.   He doesn’t currently have the impulse control to not take it off.  Typical with FASD, rewards do not work. There is an obvious natural consequence, i.e. waking up wet, and of course that doesn’t help.  He doesn’t understand consequences either.   So now, he either wakes up because he has to pee (last night that was a 2 hour ordeal because now he is tired, awake, and alert enough to not be able to return to sleep = meltdown) or he wakes up in a wet bed distraught that he peed the bed and is now awake = meltdown.  I am still trying to find a solution.  Maybe he will get used to the pullups but more likely, he will just learn to stay dry at night as a function of age.

We live in a city, by choice. Many of our neighbors in our diverse urban neighborhood love fireworks. Christmas, New Years, Halloween, really any holiday, is a cause to celebrate with fireworks for hours at a time in our area. Drives the dogs nuts and wakes the kids up. Yes, fireworks are illegal in our area.  It doesn’t stop people.   The city bus stops 100 ft from our house with its squealing breaks runs every 10 minutes until 1am and then starts up again at 5 am.   The police, firemen, helicopters, etc. all permeate the quiet of our hilly urban surroundings.  There is no end to the noises that may wake M up.  This is by far the worst.  When he is roused from deep sleep, it is like unleashing an animal.  At least now he talks rather than just wailing and pummeling us.   Now its, “leave me alone!” “don’t leave me!” “I can’t!” “pick me up!” “no, you are hurting me!”   This can last for hours.   We use white noise, but only so much works when sirens go wailing by.

Then there are the times when we have no idea what wakes him.   Sometimes, he falls back asleep peacefully in minutes comforted by only our presence. More often, it is a struggle.  With the sensory issues, M is often wanting us to comfort him but unable to be held, “stop hurting me!” or sung to, “you are too loud!” or rocked, “Whoawhoawhoa!”

Of course, I can’t just let this be our pattern. I don’t think any pediatrician would put a 2 year old on sleep meds nor do I want to go there just yet.   I’ve been warned about melatonin. But this kid needs help sleeping.   I need sleep.  G needs sleep.  Our current brainstorms for solutions include building an enclosure for his bed to block out more light and sound, working harder at coming up with solutions to the night time pee problem, and keeping a record of his sleep patterns so that maybe when we write it down there is an obvious solution.

 

Chen, M. L., Olson, H. C., Picciano, J. F., Starr, J. R., & Owens, J. (2012). Sleep Problems in Children with Fetal Alcohol Spectrum Disorders. Journal of Clinical Sleep Medicine : JCSM : Official Publication of the American Academy of Sleep Medicine, 8(4), 421–429. http://doi.org/10.5664/jcsm.2038