trying to help defeat the witch

One of my best friends is a fantastic dream interpreter.  Through her analysis, she has taught me to look for some deeper meaning into some of our subconscious dream induced thoughts.  I do think it is helpful to reflect upon those dreams that stick with you. Sometimes I don’t even know I am anxious about something until I have a string of anxiety dreams. Reflecting on those in my waking hours can help me to identify and deal with those sources of anxiety.

I always ask my kids when they wake up, “did you have sweet dreams?”  It is really just a informal welcome back to the world of being awake and much less of an inquiry.  Recently, M has been telling me about the dreams that he remembers upon waking.  Recently he told me he had a dream that he and “Bubbie” went on a date.  Bubbie is his beloved blanket, the two of them are practically inseparable.  He is the object that we did a 45 minute detour to pick up on a recent trip out of town because I don’t know what M would do without Bubbie to snuggle with at night. I don’t think he really understands what a date is but I think a “Bubbie date” is pretty darn cute and it represents the magic and innocence of childhood in a way that I absolutely don’t want to forget.

Over the weekend, when I asked him about his dreams, he said, ‘I had a dream that I was in my room fighting an evil witch, and you came in my room and told me to “calm my body.”‘ Oy.  That one threw me for a loop.  The way in which he recounted the dream communicated how unhelpful it was for me to come in while he was defeating forces of evil and tell him to calm his body.   Evil witches have been a fear thing for both kiddos since this past Halloween. The Disney witches have only added to this image M has of witches being a sly enemy.  It is not surprising that he had a bad dream about a witch. It was however, very insightful for me to know how unhelpful it is to him when I tell him to calm his body.  Even his subconscious knows that telling someone to be calm, when they are already trying to fight off the bad feelings of dysregulation, is USELESS.  When M starts to get dysregulated, it is like a reflex for me to tell him “YOU need to calm your body.”

Thankfully, this dream stuck with him and now it has stuck with me.  Next time I start telling him to “calm his body,”  I am going to stop myself and instead of talking, I will  fight the witch with him.  We know lots of calming techniques  and none of those involve telling him to calm down.

Here’s a great source of calming techniques aimed at the preschool age crowd if you are searching: http://connectability.ca/2010/09/23/calming-strategies-to-use-with-children/

 

 

 

 

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Trying out T-Ball

One of the attributes of kids with FASD is that they struggle with learning from (unnatural) consequences.  Time-outs and loss of privileges don’t tend to change behavior. This is because most of the time, kids with FASD aren’t in control of the behavior the parent/educator is trying to change (impulse control issues, sensory processing issues, etc.).  But what can be said about the neurotypical parent of the FASD kid who can’t learn from her mistakes?!  Because we are signing M up for T-Ball! After being kicked out of gymnastics and dance because he couldn’t handle it, I am going to send him to try yet another sport/extracurricular activity (C’mon, ma, haven’t you learned your lesson yet?). See this post and this one for more details.

Here’s the thing, the kid loves baseball.  Neither G or I likes the sport at all.  It must be in his genes somewhere because it is not something he learned at home. I actually have horrid memories of spending hours and hours of my childhood bored to tears while my brothers played and practiced. The only good thing I remember about little league was the candy and sno-cones at the concession stand. I, myself, am not even a smidge athletically inclined so I never played.  I still can’t catch a ball baseball-sized because of my lack of depth perception.  Despite my dislike of little league, I do like to support M’s interests.

We drive by Dodgers stadium almost everyday, usually twice a day. The shortcut to preschool goes right past the gates.  M talks quite a bit about someday being a Dodger.  He even has a cheer that he has written for his future fans to yell while he is at bat. M and M2 will chant the cheer as we drive past the stadium and I love the hope in this future dream.   We have a tee and bats and balls at home that we play and practice with often.

I know my boy pretty well and I already know where he will struggle.  He most likely will do a good job waiting his turn to bat and also will do a good job playing the field.   He has a good attention span and as long as the other kids are doing a good job waiting their turn, he will follow the lead of his peers.   Here’s the part that makes me nervous, can M handle being tagged “out”?  Probably not, if we don’t prepare him. I can already see the scenario in my head.  M as an angry boy refusing the “out”, probably kicking and hitting those in his way and then running away refusing to ever step foot on a field again. Our original plan was to role play getting tagged out and practice going through the actions of how we act when we get tagged out.  AND we would do this over and over and over again.   We asked M2’s therapist about this, he is an expert in preschool FASD techniques. He suggested that before we even try to practice, he needs to understand the rules of baseball.  He also suggested that we get some books to prepare him for what to expect in the game.  I went to Amazon and picked these out:

Froggy Plays T-ball

The Berenstain Bears Play T-Ball

The Littlest Leaguer

So here’s our plan:

  1.  Start reading the books at home. Paying particular attention to the parts of the game that might be hard for him.
  2. Watch some T-Ball videos on YouTube so that he can see what kids are supposed to do when they get tagged out.
  3. Practice in the park as a family, giving him a script to use when he gets tagged out.  (First we will model the behavior.)
  4. If all goes well, we will send him to T-Ball practice and see how it goes.

I am also ready, this time, to call it quits if it is not going well.  This amount of planning and preparing are just parts of being a parent of a kid with special needs. We can’t just expect that things will go well.  They won’t.  We need to set our kid up for success. If we’ve tried our best and things don’t go well, it is also our job to make sure that it is not causing M to feel like a failure.  This is why step 4 is so important.  If he can’t do it while we are practicing, then he probably can’t do it when he is on the field.  We will sacrifice the $40 sign up and try again when he is a bit older.

M, at 2 years old, first time swinging a bat.

 

 

 

 

 

 

trying to adjust my expectations

I go long stretches where I forget that M is significantly different than other kids.  I’ve mentioned this before, but people will often tell me that his issues are normal toddler/preschooler behavior. He is also SMART and quite a sweet and empathetic little guy. It is easy to forget that I need to take great care in choosing my words and actions when parenting M. When I have things managed well, this is absolutely true. Our behavior issues fall within the range of normal. But I often fall back into bad routines where I expect too much, change too many things in our environment and demand way too much of M. Then there is often fall out.

In the past two weeks, we have been kicked out of both dance class and Mommy & me gymnastics. We had a long stretch of success at gymnastics because we were taking a class meant for 18 – 30 month olds and M was already a year older than the oldest other child.  M2 was the second oldest. I definitely was starting to feel a little unwelcome coming from the other parents and I talked to the Coach about moving them up to the next level (meant for 2 – 2.5 year olds) and she said M wasn’t ready because he couldn’t sit still or follow directions. Okay, this is true. He can’t. Not in that scenario. She did say however, that she felt that M2 was ready.

This week, I made the mistake of taking them to a make-up session for a session we missed while camping.  Well, those babies in that class were all between 18 and 24 months. The stars were misaligned, I got there at 9:10 thinking the class was at 9:15, it was at 9:30.  That meant we had to wait a full 20 minutes for class to start.  In addition, the little snack store was closed so we couldn’t do our usual routine of getting a crunchy snack to calm nerves (this is a common OT trick).  I keep asking myself, why didn’t I just walk out then, before class started and before things were going worse. I knew things weren’t going well.  I threatened M that he needed to take some deep breaths and calm his body. I could see him tense his muscles and hold a grimace on his face.  I mentioned that his “engine was running too high“* and asked him what we could do to calm it.  BUT, we should have left.  I know better.  There is no coming back from that kind of overstimulation/dysregulation. Class started and within minutes, he wanted to use the rings and some little toddler was waiting patiently to use them while his mom helped out. I moved him away before he had a chance to push the kid off the platform and instead he shrieked and screamed and then punched me in the face.   Three coaches ran from their respective groups and stood by as he screamed and flailed in my arms.   We walked away and one of the coaches ran up to me and said, “this really isn’t working out.  We think its best if you don’t return to class. M is really too old for this class, anyway.” I got home to an email saying we had been “withdrawn” from our usual class.

For dance class, this happened as well just a couple weeks ago. I wrote about not fitting into dance a while back so that seemed inevitable.  The teacher was a bad fit for M.  She was the stressy/anxious type and that tends to be his worst match.   She send a kind but firm email saying we were not welcome to attend any more classes. Saying, “I’ve found that the energy has channeled itself into something beyond my skills.” I agree with her assessment of the situation. But I really wonder that why, since I knew it wasn’t working, did I push it?

I was super sad yesterday feeling a bit defeated.  We had a rough few days around the house, too.  I was giving way too many “time-ins” and not in a “hey, we need a break together” kind of way but in a very punitive way.  That’s the thing, about FASD.  It is so much less about the way the child is acting and so much more about the way people around them are acting. If I want M’s behavior to change, I have to change the way I do things.  As we in say in the FASD parenting world, you have to think “neurobehaviorally”.  This basically means adjusting the environment for success. It also means not punishing/disciplining children for things that they can’t do.  For instance, M really struggles with impulse control. It is not my job to punish him when he hits but instead to avoid putting him into situations that allow him to act on those impulses.

I cannot expect him to behave in a overstimulating environment.  That’s unfair, he can’t.

My FASD parenting support group had some great suggestions and good support.  It turns out group lessons are a really hard thing for many/most of our kids.  They reminded me to adjust my expectations and to look for classes for kids with special needs or just to do private lessons.

 

*The Alert Program is one of the proven intervention for helping Executive Functioning for FASD.   It has also been shown to actually help grow frontal gray matter in the brain to practice these skills.

Nash, Kelly Jennifer. Improving Executive Functioning in Children with Fetal Alcohol Spectrum Disorders Using the Alert Program for Self Regulation®. Diss. University of Toronto, 2012.

Soh, Debra W., et al. “Self-regulation therapy increases frontal gray matter in children with fetal alcohol spectrum disorder: evaluation by voxel-based morphometry.” Frontiers in human neuroscience 9 (2015): 108.

 

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.”

http://www.whitehoskinscook.com/img/~www.whitehoskinscook.com/pictures/blog/hurricane-categories.gif

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.

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.

 

trying to understand the stigma

“Foolish, drunken, or harebrain women most often bring forth children like unto themselves.” –Aristotle, Problemata

After a 5 month process involving referrals, evaluations, and insurance claims, M finally qualified for occupational therapy (OT).  I’ve mentioned before that OT was a game changer for us. With all the gains made through and from things learned in OT, I don’t regret at all the long journey to get him in. However, we were just cut off because M was doing too well.  But that is a story for another post. My current excuse for not fighting back for more services is that I am starting a new job and can’t really balance anything else right now.

Getting services for kids with FASD is a BATTLE.  They do not qualify in general for 0-3 early intervention (at least in my state) unless they are developmentally delayed by more than 1/3 of their chronological age in at least one of several categories.  They also don’t qualify for services if they are over 3 unless they are directly related to school readiness.  Fortunately for us, M is developmentally on track, scoring in the “low average” range for almost all categories. His adaptive functioning is the only thing he scores low in these days, but not low enough for school district or regional center help.  His behavior problems are off the chart and although we are slowly seeing improvements, we still deal with more difficult behavior than anyone I know.

There is always quite a bit of talk in support groups for parents with kids with FASDs about why it is so hard to get help from professionals. Our population of children is so overlooked, and yet, there are so many of them, 2-5% of the general population. Here are a few reasons that get thrown about:

  1.  The only consistency among kids with FASD is inconsistency.  Therefore, there is no standard treatment protocol. And the result is no help.
  2. The diagnosis is difficult to get.  Especially in light on #1.  For those of us without any background info on our kiddos, it is even more difficult. Kids often get diagnosed with ASD, ADHD, ODD, SPD, RAD, bipolar, etc.  Here is a handy Comparison Chart which illustrates the overlap among some of the behavioral characteristics of some of these other conditions.
  3. Here’s the big one. THE STIGMA. FASDs are preventable and thus the mother is to blame for the difficulties of the child. I mean, why should a system be in place to help the children? We told those mothers that drinking during pregnancy was bad for the child.

I was just remembering back to his third session with his brilliant OT, when she realized that I was not M’s birth mother. I had to bring M2 along with us and the OT put it all together.  I think about all the background info that goes into those reports that get handed around from doctor to doctor to therapist. M’s birth history reflects the troubled nature of his first mom’s life. I felt offended that the OT thought that she and I were one in the same. Do I look like an addict or a recovering addict?! And then upon reflection, I realized, she was being professional, treating me with the same respect she would any woman struggling to raise a child with behavioral difficulties. She wasn’t judging my appearance and comparing it to the words on the history reports.  She was just helping M and helping me learn to parent M as well. I was the one stigmatizing his first mom. I was the one holding the judgments over her choices. To be honest, I am angry at M’s first mom for her choices. I am angry that M has challenges directly as a result of her addiction. It makes me understand the real problem of the stigma of FASD. It’s almost like saying, “you caused this and you, by yourself, have to deal with it.”

There are many moments where I think about first mom’s life and have compassion for her. I get it, I have known people personally that have struggled with addiction.  To know their story is to understand their struggle. However, our society has trouble when we group addicts together. We don’t understand them as a whole, their problems are too complex, trauma, PTSD, mental illness, homelessness, etc. I think it is also why our rehabilitation methods are generally unsuccessful. It is easier just to blame them for their individual bad choices and consider their problems a drain on resources. Similarly, we don’t automatically help kids with FASD because then we’d have to admit that we’d also need to provide much greater emphasis on preventing FASD.

Time to stamp out stigma! http://www.nofas.org/stigma/

 

 

 

 

 

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.