appreciating the good weekend

It is rare that we have whole weekends that are free of major incidents. I think that the major weekend related struggle for M is simply the change of routine from our very scheduled weekdays.  This past weekend was one of those rare successes. Now, I am pretty sure that what I define as a successful day, other parents may feel like was a disaster.  Changing my expectations of successful parenting has helped to keep me sane.

My strategy this weekend (which also happens to be my mom’s primary parenting strategy) was to lead the kids through physically exhausting activities.  This is also was the key to success in training our overly energetic puppy 10 years ago.  This can sometimes backfire with M as if he is too tired, he can get exceptionally cranky.   This past weekend it worked.  We spent 3 hours at the indoor playground on Friday after daycare, we went to the natural history museum and ran through the gardens on Saturday morning.  On Sunday, we did our normal gymnastics class followed by a 3.5 mile (round trip) hike up to a waterfall.  M hiked nearly the entire time. M2 needed to be carried a little bit, but not even as much as I thought.

After our hike, they napped in the car a bit, but awoke as we pulled into our driveway.   M was a bit cranky as he normally is when he gets woken up.  He had a small meltdown but I ended up getting him settled on the couch watching the Minions movie.  Then the best thing happened, the boy who hates being touched curled up next to me and snuggled for a bit.  It was lovely. Then a few hours later, he ate a mostly normal dinner. This is also unusual. He is usually too dysregulated by the end of the day to eat much of anything besides cereal. Last night when I put him to bed and we talked about the day’s activities, we recounted all the fun we had, primarily our snake sightings i.e. rattlesnake and king snake. When said “I had a lot of fun with you today, M” he said “Fank you, mama!” and gave me the sweetest kiss.  It may not seem like much but he can be so oppositional that my expressions of love and affection are usually met with “NOOOOoooOOOOOOoo!” or just angry grunting.  It makes me feel hopeful for more days when we can find the right balance of activities for him to get him regulated.

Now, the weekend was far from perfect.  He had some obsessive moments.  He had trouble at the museum when he wanted to have his snack on the stairs near the fountain but I wasn’t understanding his vague attempt at describing where he wanted to sit.  He lost a favorite item somewhere and talked about it for 2 hours straight. He is still searching for a tiny plastic sword off a McDonald’s toy.  He woke up obsessed with it two days in a row.

Another parent at the museum gave me a judgy sidelong glance as I was trying to help M sort our his frustrations over the stair sitting.  I get it, to the outsider, my parenting strategies seem indulgent. I was trying to get him back to calm so that I could understand what he was trying to communicate.  He escalated to frustrated very quickly, as usual. My best defense against a full on meltdown is to be exceptionally compassionate and patient while he sorts out his feelings. In this case, we were blocking part of an uncrowded walkway and I was crouched down beside M, repeating, “I want to help, can you take some deep breaths?” as he scratched and bit me.  It was a bit of a scene.  But within 5 minutes, it was over, we were seated where he envisioned.  He was happily crunching on some chips. The reason I consider this a minor meltdown is because it was over in a few minutes, it didn’t ruin our day.  I didn’t lose it.  I didn’t have to drag him out of the museum. That parent’s judgements have stuck with me.  Its strange to think that in that moment when I felt very successful, someone else was considering me a failure.

 

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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.

 

 

 

 

 

 

 

 

 

 

looking on the bright side.

I haven’t felt the need to write on this blog in the last few weeks.  Mainly because things are going well for the most part.  M’s behaviors are improving.  And as a major improvement, he seems quite a bit happier.

M’s generally frustrated state is the one thing that I believe concerns me the most. I think that kids should generally be happy.  Yes, they have their psychological/developmental hurdles to overcome but those should be surrounded by times of genuine content.   I love when M is just joyous.  He can swing from happy to full meltdown and back over a short period of time.    I treasure the times when we spend hours just playing and laughing without incident.

Here are the improvements:

  1.  Sleep is better. Generally speaking, he is only waking once per night.  We’ve had a few nights where he has slept through the night.
  2. He is less aggressive. There were a few days last week where he had a few moments scratching and punching, but in general, things are good. So much better.
  3. M2 is less guarded around him and is interacting with him more.  Sometimes even playing together.  I think she is sensing how much less aggressive he is as well.
  4. Eating.  He is eating more.  Not well, but at least I see him getting more nourishment.
  5. I can be more relaxed and therefore he is more relaxed.
  6. He is wearing clothes with buttons and waistbands.  I didn’t realize before that his sensitivity to clothing comes at a much later stage in his dysregulation and he is fine with normal pants as long as all else is okay in his world.

Here are the things that I think are helping usher in the improvements:

  1.  M is drinking less milk.  I am almost certain that milk was causing us some trouble. I am about to put him through a battery of tests with a pediatric naturopath to check and see if there is anything else we should be avoiding.
  2. A more consistent schedule.  Neither of us has traveled recently, no major holidays, no major illnesses.
  3. I am constantly reflecting on “trying differently.” When something isn’t working, I give up faster to try something else.  For example, if it’s bedtime and he is just tossing and turning, I know more tossing and turning doesn’t seem to help so instead we go outside for some fresh air or swing in the therapy swing for a bit.
  4. Occupational Therapy (OT) has definitely taught me to take transitions much more slowly.  It really is the little things that keep him regulated.

Of course, my pessimism will take over and I start to think that we’ve had these honeymoon weeks and months before.  And always in the past, the behaviors have come back with a vengeance. I am trying to be positive and to keep enjoying the boy I have right now.

 

trying to help him be calm

I am sure that as I recount M’s history, I will retell our battle with regional center and the courts over getting M the help he needed. But, after two and half years, I finally got some help for him through Occupational Therapy (OT).

His insurance is paying for weekly therapy sessions and though I’ve only been to three sessions so far, I am learning so much and it is already paying off.  I want to rave about my new favorite thing.  His therapy swing.

Sleep is a struggle for M.  He has trouble going to sleep, staying asleep, and napping.  I remember crying over his crib when I was trying to work full time with no childcare when he just wouldn’t take a daytime nap so that I could get a few things accomplished utilizing both hands.  It was not long after that we put him in an in home daycare so that I could actually get some work done during the day.   But he didn’t sleep there either.  Every day when I picked him up, I’d asked about his nap.  His daycare provider would just shrug and shake his head, saying “maybe 20 minutes.”  I suppose I felt better knowing that childcare professionals couldn’t even get him to sleep during the day.

At night, he has trouble winding down AND the more tired he is, the more aggressive he is. His new OT mentioned something about the swing helping to bring him back to center after some much needed proprioceptive work. For now, this seems to be just what he needs at the end of the day.  At night time, I rock him in the swing for about 15 minutes, and he falls off to sleep easily after that.  While in the swing, he says “ooh, cozy!” During the day, when he is feeling overwhelmed, he asks to go to his swing.  This is a kid who doesn’t like to be touched. I think he is getting the feeling of a hug and the gentle motion of being rocked without the irritation of human contact.

I know that eventually, he may need more than this swing to help. For now, it is working.  He is sleeping better and it is less of a battle to get him into bed.