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/

 

 

 

 

 

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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 look like a supermom

I often feel like supermom.  I have also always struggled a bit with humility. I have never had a self esteem problem in my life.  Most days I juggle my work tasks, the home tasks, and the kids task relatively successfully. That being said, the key to this success is that I am so far from being a perfectionist, many of you might define “success” quite differently.   For example, my house is a mess right now, there is a mildewy pile of laundry in the washer that has already been washed twice, and I am procrastinating working through my work to-do’s in order to type this blog.

But truly, the amount I get accomplished in my awake hours is seriously impressive. I also usually get a full nights sleep minus the time I have to wake up in the middle of the night to tend to kid needs.

Here’s the thing, my supermom “uniforms” are super shabby and need repair. Here I am back on self care again.  My students for several days in a row kept  pointing out the stains and holes in my clothes.  I am not at all embarrassed, just feeling a bit unprofessional.  About a week ago, I bought a ton of new clothes online thinking that it would be like going to the store and I will just return all the things I don’t like. I can’t take the kids to the store and I have very little time to shop by myself so this seemed like a great plan. Well, I’ve liked just about everything and thus my plan to return things is failing. I definitely overspent.  However, I am chalking this up to a win in the self-care department.  I also got complements on my shoes and my dress today.  I’ll take that any day over the recent student comments, “Dr. W., did you know that there is a big hole in the side of your sweater?”

trying to deny my denial

I played hooky last Thursday.  I was legitimately sick and had lost my voice, but I normally would drag myself to work sick anyway and screamwhisper through my classes.  Instead, I went to a seminar led by Dr. Ira Chasnoff and Dr. Ron Powell about the educational implications of prenatal drug and alcohol exposure. It was intended for professionals.  The audience was mainly teachers, social workers, and mental health professionals.  I felt as though I was spying on some of the professionals I have been dealing with in my son’s life. However, they get a better seminar than those we have had as parents.  Dr. Chasnoff explained the parts of the brain that are affected and why our kids have so much trouble learning based on the brain damage, despite many having normal IQs. His explanation just made it click for me. He explained things like the differences between a kid with ADHD and a kid with FASD and ADHD.  I took so many notes and I truly hope that what I learned can M be more successful in school when the time comes.

That being said, I have been in a bit of denial lately. You see, the problem with a spectrum disorder is that any combination of symptoms and severity of effects can exist. So in my mind, M could be one of the “lucky ones” i.e. someone on the FASD spectrum who doesn’t have trouble in school, with mental illness, with the law, or in social relationships. I think as a parent and a natural pessimist, I need to embrace those optimistic thoughts.  We have again been in a better place with behaviors.  We had a couple bad days with aggression about a week ago but that seems to be better this week. It is easy for me to be in a bit of denial when things are going smoothly.

Below is a list of his attributes and behaviors that make me an FASD diagnosis denier. (These are the things that contradict what is normal in most FASD kiddos. )

  1.  He is empathetic. In fact, his interpersonal skills for being a 3 year old are pretty good.
  2. He has a really good memory.
  3. He has achieved all of his milestones roughly on time, with only his gross motor being slightly delayed.
  4. He tests well within the average range for cognitive skills.

After the seminar last week though, I started to think about all of the signs and symptoms of FASD that M exhibits almost always.  Here is a incomplete list of things off the top of my head:

  1.  Sensory issues, mainly he hates touching and being touched.  We just avoid it most of the time.  When he lets me get in a snuggle, I cherish it.  He also “toe walks,” gets overstimulated very easily, and struggles with eating most non crunchy things.
  2. Some compulsive/impulsive behaviors. M will just punch M2 if she is walking by, for no reason, just as a result of lack of impulse control. He also has to rub the edge of his favorite blanket in a very specific, compulsive way.
  3. He loses skills. There are certain things that you think that he can do, i.e. take his shirt off or remove his shoes, that he will all the sudden forget how to do.   He also can get very lost in the middle of multi step procedures.
  4. Inability to “go with the flow.” Dude, if there is a change of plans, all hell will break loose.  This kid survives on structure.  Even weekends are hard because they are a change of pace from the weekdays.
  5. Sleep issues.  We just started giving him a low dose of melatonin.  It is a life saver.  I thought the other day I should try and skip it to see if it is just a placebo effect on me, and no, no placebo here.
  6. He is super sensitive to my moods. I am become a better and better actor everyday. I am also learning to control my anger and impatience. That in itself makes a huge, and I mean HUGE,  difference in his behavior.  If I am even a little stressed about things outside of the house, he can sense it and gets dysregulated.  I really want to get myself a bracelet that says, “CALM DOWN! It is brain damage.”for those times when I react to his behavior in a less than loving and patient way, I wish I had a visual reminder.  It would be great to have one to wear around my wrist. G needs one of those bracelets too by the way.  I used to think that he was one of the most patient people I knew.  It turns out, that is really only with adults. His patience levels drop significantly when dealing with the kids.
  7. Perseveration. He does this all the time.  I once heard FASD perseveration described as “the first choice is the only choice.”  Basically, M gets stuck on a thought or a toy or a food and can’t stop asking for it/obsessing over it no matter what else is offered or going on.
  8. Tantrums and meltdowns. I am happy to say that memories of those 2 to 3 hour meltdowns are starting to fade.  We still have almost daily meltdowns.  But now we have breathing techniques, a quiet space to meltdown and better knowledge of how to support him through a meltdown. These things tend to cut time in meltdown mode to under a half hour.  I also know his meltdown triggers. Overstimulating environments and change in routine are the primary two triggers.
  9. He is small.  That is actually one of the 4 main criteria for diagnosing FASD.  Height or weight at or below the 10th percentile.  That’s us, always has been, probably always will be.

Many other Moms will tell me, these are “normal” toddler behaviors.  I too think they are “normal” toddler behaviors.  This is just fuel for my denial.  I hope and pray that he will just outgrow these things.  However, any FASD mom will tell you, FASD behaviors are like normal toddler behaviors on steroids.  He will probably grow out of some of these. I doubt he will still be struggling with getting his shoes off in a few years. But the underlying causes of the behavior will still be there.  Things will just manifest in a different way.  I tell G often how lucky M is to have ended up in our home with such patient loving parents as we are.   I do like to pat myself on the back at a job mostly well done.  We have educated ourselves on FASD, moved away from a system of parenting that relies on shaping behavior through consequences, and stepped up to support M in a way that requires a significant amount of patience.

However, if these are just toddler behaviors and he goes off to Kindergarten behaving like a neurotypical child, I will be more than happy to say I was wrong.