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.

 

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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.

 

 

 

 

 

 

 

 

 

 

trying to balance.

The one question that I get most often from the professionals involved in my children’s lives is, “how do you do it all?” This inevitably comes after I explain that I work full time in academia.  Yes, my schedule is flexible, but my job is demanding. I don’t “do it all” well.  That is the short answer.  In fact, I have been struggling with the fact that I cannot do it all well. I am starting to think of all the things I have sacrificed while trying to balance my career and my kids. For a while, I was putting my job first.  I was waking up at 4 am to work for a few hours before the kids woke up, and then working at night after they went to sleep.  I had M in daycare about 6 hours a day and was making up for the other time in the “fringe hours.”  Then arrived M2 and they spent more time in daycare, I spent less time working nights and mornings and my job performance has suffered greatly.

With my two kids, there is no down time at home. Because  of M’s aggressive tendencies, I have to be watching him at all times. This makes things like getting the dishes or laundry done while the kids are awake near impossible.  I now clean and do other household tasks in the time that I used to use to grade papers and plan lessons and write emails.

I feel like I missed a lot of M’s early days because I was too preoccupied with how to answer emails and grade papers on time. I would check and answer emails while giving him a bottle, in the middle of the night after a midnight feeding, etc.   But in the times between those emails, I would worry about all that I was missing at work. Then I just gave up.  I suppose this is where my downward work spiral began. I stopped using my time outside of the office to do work.  I spent all of last summer catching up on things I couldn’t get done during the school year and then prepping for the fall so that I could better manage my time.   That works well for the most part.  When I can plan ahead, I can manage.  It is the work tasks that pop up with little notice with immediate deadlines that I just can’t do.  I can’t just make time for the unexpected things or then the tasks I planned to do become late.  It is an endless cycle. If I leave the office early to take M to an appointment, I often miss the committee email conversations that happen between 3 pm and 8 am the next day (when I start checking email again).  By then, decisions are made, and I just look like a slacker who didn’t participate in the discussion.  It is hard to fight against this perception and there has been 4 of my colleagues who have made comments about this to me.  Dear colleagues, I want to participate, I do.  But we are just running on different schedules.

In my line of work, at a university, trying to get tenure, one of my most important tasks is to research and publish.  I have yet to be able to figure out how to squeeze this into my schedule. We don’t actually get “paid” for this work.  It is an expectation but one that is outside of our normal work schedule.  I have been told that this is what I should be doing with my summers.  My first two summers,  I had tiny infants to care for and during my third summer at this job, I was playing catch up from caring for two kids with special needs.

Unfortunately, there is no leniency for motherhood in academia.  I am not making excuses for myself, but this is a system that is generally unsupportive of mothers.

Check out this article: Fathers and Childless Women are 3x More Likely to Get Tenure than Women with Kids

I am not sure what the stats look like for getting tenure for women with kids with special needs.   This week, between M and M2, there are an additional 8 appointments in my schedule. EIGHT.   Speech (x2), Occupational Therapy, Mental Health Services, a visit with Regional Center for a transition from IFSP to IPP, Infant Stimulation Services, a social worker visit to my home, and a visit with the pediatric naturopath.  There are six that are regularly occurring.  Every single week, I have at least six extra appointments to transport to and from or the work involved in arranging for someone else to get the kids there.

I do feel like the odds are stacked against me in my current position.  But I am raising my flag of surrender and taking a less demanding job.  I can’t even put into words how difficult this is for me.  I am a terrible quitter and the feminist in me feel like I should be fighting the structure of this system. I should be the success, not the woman that can’t “lean in”.    At the very same time, I have such a peace with this decision.  My family NEEDS this. My children NEED this.  The one thing I have been truly sacrificing is my own self care. See this post. I am looking to regain a part of myself that has been lost in this shuffle.  I am proudly stepping down, giving up, leaning out, and simplifying my career for my sanity and my family.

As I have said before, I am writing this blog to keep track of our challenges and successes. I truly hope that I don’t look back on this job decision with regret. I know it will be difficult to remember all the stresses that I feel now. When my new job is stressful, I want to be able to come back and read this and remember why I made the change.

 

trying to not be a jerk.

“People are constantly saying:

Oh, its a boy thing.

Oh, its a stage.

Oh, everyone goes through that.

They mean to be helpful, but I am feeling lonely and inadequate. If everyone goes through this, why does it feel so insurmountable? If everyone goes through this, why am I the only mom I know without a dramatic scene?  Is every mother really sitting at home Googling ‘how to safely restrain a child’?”  -Jillian Lauren, Everything You Ever Wanted

I have been dwelling in self pity all day. Because I can’t seem to focus on my work, I am back here, on my blog.  It is partly because my left eyeball has been throbbing all day. The morning’s punch can’t be easily forgotten and although no bruising or swelling occurred, that tiny, angry fist landed right on my eyeball.  My vision is blurry.  Luckily, he hit my bad eye. I don’t actually use that one.

We signed up for the Echo Parenting Class on Nonviolent Parenting. We had our first class last week.  During the class, I sat their self-righteously thinking I am already a good parent, I wonder if I’ll get anything out of this. I get it, don’t spank, don’t belittle, don’t injure your child’s mind, body, or soul. I KNOW this. I whispered to G that we only really needed 6 hours to complete our foster parent licensing requirement for the year, so we could bail after a few classes. But really, I NEED this. I am a jerk.  We use that word a lot in our house. Mostly, because we don’t want to call our children assholes.  When in reality, most (if not all) toddlers are assholes. Of course, we are careful not to label the children as “jerks” and instead say things like “that was a real jerk move, M.” I feel relatively strongly against saying “that is not okay” that I here uttered so often when I am around other parents and their children act out. It is too general for my M. He needs to know specifically.  He already gets confused between, when actions are unsafe and when actions are unkind.  I need to tell him which is which.

I am proud of the non-jerk way in which I maintain my cool 99% of the time with the kids in their worst moments.  I can’t even start to tell you how hard it is to speak gently to a 2 year old who his kicking me while simultaneously trying to pry my eyeballs from their sockets. Let me tell you, it isn’t easy. Luckily, I get a ton of practice.  But I have my moments.  Today, although I didn’t say or do anything  in particular that would count as hurtful by any definition. But, I think my body language this morning was communicating all of my frustration and impatience. And I think that is also a “jerk move,” as we say in our house.

At this point, though, I don’t know how to react to the punches.  I feel torn, it isn’t okay.  At home, we do a lot of “time-in” but usually that is just time for him to take out more of his aggression and frustration on me before he can settle down.  Someone, maybe his therapist, maybe the pediatrician, recommended to us to give him something else to punch/hit.  Hit a pillow, or a drum! how fun!  Except, I can tell you this is not a need to pummel something.  It is an urge to injure me.  He doesn’t want to hit a pillow, he wants to break the skin on my arm with his teeth.

So I am left with this conundrum, how should I react?  I’ve read in some attachment based adoption literature that I should be leaning into his fists and teeth, letting him know there is no way for him to drive me away.  I can tell you though that it is instinct to dodge teeth and fists and feet and fingers when they are angrily coming towards me.  So maybe that leaning-in reaction would have worked if I could keep myself from dodging and flinching.

“Time-in” is supposed to be a magical solution for attachment challenged children.  Of course, we weren’t supposed to be offering it as a consequence but as an opportunity to regroup and calm down.  Well, it quickly turned into a consequence in our house. Not to mention, the time it takes for M to calm down in a time-in could be up to an hour.  And we could be out of a time-in for 5 minutes before he needed another time-in.  There has been days where he spent significantly more time in time-in than not.  Maybe its working? The biggest problem is we have two kids, M2 has insecure attachment issues and leaving her alone is like punishing her.  So, I can really only resort to time-in when G is home as well.

Then there are the people that tell you, to stop the hitting, connect the language. Say things like “ow! that hurts mommy!”  Oh my GOD.  He thinks that buttons on pants “hurt”, that the sun “hurts”, that the tag on his t-shirt “hurts”, the buckle on his seatbelt “hurts”.  That kid thinks feeling “hurt” is a normal every minute experience.   He thinks that it “hurts” when I hold him.   Telling him I am hurt must make him feel like, welcome to my world lady. 

All 20 hours of this parenting class will be worth it, if I can just find some better ways to handle his aggression.   I am constantly reminding myself. He is not giving us a hard time, he is having a hard time.  I am trying to model empathy so that he can learn empathy.   I am trying to model patience so that he can learn patience. I am trying to model gentle hands and gestures so that he will learn them as well.  I have to learn how to quit being a jerk. Every time I slip up and tell him to be gentle through a clenched jaw and with tense movements, those are the jerk moves he remembers. Those are the lessons that are sinking in.

 

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

trying to go beyond consequences

A few weeks ago when I was struggling with my parenting techniques, I wrote a desperate email to a local parenting coach asking for help.   I wanted to set up some one-on-one meetings with her to discuss our issues with M’s aggression.  I was informed that they have classes starting January. Great but what do I do today, tomorrow, next week.  She also recommend Heather Forbes’ Beyond Consequences, Logic, and Control.  That book had popped up in my “People who bought this item also bought” list on Amazon a few times.  I remember reading the description and thinking it was for “attachment challenged” children and thinking that doesn’t apply to us.  M is ATTACHED.  We have more of a problem with him being too attached.  But, being the researcher that I am, I decided to download the eBook and check it out.  And I was wrong about my initial opinions, the parenting techniques in the book are very applicable to us.

I couldn’t put it down and in fact it made me rethink about what trauma is caused by adoption.   We were M’s first and only foster home but in his first week alive, his 3rd mom. His first mom, his birth mom, hid her pregnancy from her family, had no prenatal care and even denied his existence for MONTHS  after he was born and DNA tests confirmed their relationship.  I’m not sure how those feelings were transmitted to him in utero but I think there is some trauma there. He was also sold/traded/given to another woman at birth.  She spent several days in hiding with him while investigators were hunting for them. Traumatic? probably. I also think the flood of chemicals that gets transmitted to the baby when moms are using meth create a sort of trauma.   Surges of adrenaline to a fetus, who knows what that feels like but I am theorizing it made him feel that he was in danger. Heather Forbes’ parenting advice is based in the theory that there are only two primary emotions: Love and Fear.  M does have a very fearful way that he interacts with the world.  That fear turns right into fight when it is strong enough. He is often slow to react and I can see on his face the transitions from fear to frustration or fear to anger.  M is hypersensitive to many sensory experiences and most of these things he perceives as a threat. For instance, he hates having his diaper changed.  We told the pediatrician this a long time ago when he first started telling us that wipes hurt him.   At that point, his sensory issues were not as evident and she thought wipes could not possibly be hurting him.  These days, if I mention a diaper change, I see the flash of fear and then I see the flash of anger and then I often get hit or scratched before I can even react to him appropriately.   But after reading Heather’s book. I changed my diaper change approach.  First, I give him a several minute warning before a diaper change.  He hates transitions so he needs this at pretty much any directed change in action.   At that point, I tell him I am going to be very gentle.  When I walk him into the bathroom to our changing table, I reiterate that point, I am going to be gentle and you get to tell me if you want to take a break.  I won’t lie, I used to hold his body down with one arm, gritting my teeth in frustration and change him as quickly as I could before he could wiggle free and bite me.   I was never rough, but I was trying to stay in control of the situation and thus causing him to be more fearful.   Now, for most changes, I can let him have more control while I talk gently and take our time, pausing if he needs it.  I have seen his whole opinion of diapering change in just a few weeks.  I can’t say he likes the sensation but it is so much more pleasant. Just in time for potty training!

 

 

 

trying to put into practice all that I read

The byproducts of understanding people from a neurobehavioral perspective is understanding, acceptance, peace and a profound shift in the emotional climate of the relationship and from there all else is possible. People with FASD are the innocent catalysts, our unexpected teachers, moving thinking into a neurobehavioral paradigm that finally recognizes brain function as the source of all behaviors.
—Diane V. Malbin, MSW
I have always been a researcher.  When I want to know something, I hit the books and journals analyzing and synthesizing all that I can find.   The title for this blog comes from an often recommended book that was one of the first I read after M’s FASD diagnosis,Trying Differently Rather than Harder by Diane Malbin.  At that point, the 3 hour tantrums were starting to subside and I thought we just had a bout with the “terrible twos.”  (That is what my well-meaning mom friends would tell me. “Oh, it’s just a phase, they all go through that.”) I put the book aside for months while we had a great few months behaviorally. But the easy days didn’t last long, and once again we had more meltdowns coming more often and I started picking up the book again.
The basic premise of Diane’s book is that standard parenting techniques don’t work with FASD kids.  These kids have organic, irreversible brain damage and trying to control their actions through behavior modification techniques just doesn’t work.  Instead, we have to modify the environment for their success.
I am the one learning to control my behavior and my actions.  If anything, this is making me more patient, more understanding and more thoughtful.  I have to move past the way I was parented (no complaints, my mom is amazing!) and learn new ways.   I am grateful for the opportunity to learn so much about brains and emotions!