How Alcohol Effects Neural Development - continued

I usually do a little more than just the first two visuals and associated points - if I can keep them focused.  Specifically, 

A lot of people seem set against accepting FASD.  It really bewilders me.  I mean some of them have personal reasons I'm sure - not wanting to accept that they or someone they know may have been impacted by prenatal exposure, their own or someone else's struggles with alcohol addiction, but some just seem set against it for no reason at all.  Why is it so hard for some people to accept that FASD does exist?  Theres a question of the week (month, year, life) for you.  Does anyone else see this persistent denial?  Do you understand it?  If so, can you explain it to me?

How Alcohol Effects Neural Development

I expect most people who find there way here already know all this stuff but I still have some people I meet who don't so this is how I like to describe it - with some simple visuals (usually sketched onto what ever is handy) and reference to a few well known authorities since my word from the caregiver trenches  is never good enough. 

It has a lot more impact in person I think.  People seem to have a visceral reaction to you picking a random cell and beginning to erase all the connections and following development.  There are still lots of objectors.  I'm still working on how I counter all the crap and finally get through to them.  I suppose you will never convince everyone but i believe the first step to helping people who suffer from FASD is educating all those who don't know about it / don't believe its real.

FASD and Sleep

That we are not much sicker and much madder than we are is due exclusively to that most blessed and blessing of all natural graces, sleep.   ~ Aldous Huxley

For those suffering from FASD severe lifelong sleep troubles are often associated with their condition.   We have very definitely experienced this with Little Man.  He has exhibited all of the classic sleep issues of an individual with FASD; delayed sleep onset, frequent waking, night terrors, and early waking.   There have been times where I went days with no more than 4 hours of sleep.  This is unbelievably disruptive for a caregiver / parent but I also think it is horribly detrimental to the child.

 It’s well documented in the medical community that inconsistent or inadequate sleep creates health issues, behavior issues, and problems with cognitive function.  The most typical behavioral and cognitive symptoms read almost like a list of FASD symptoms.  Behavior symptoms induced by sleep issues include hyperactivity, aggressiveness, inattentiveness, impulsivity, depression, and other mood disorders.    Cognitive symptoms include problems with verbal fluency, comprehension, abstract and deductive reasoning, planning, flexibility, inhibition, problem solving, attentiveness, vigilance, memory formation and motor skills.  I’m not by any means suggesting that sleep issues CAUSE the problems of FASD.  Alcohol exposure during neural development did that.  BUT I think it’s reasonable to say that sleep issues amplify these issues and may interfere with interventions aimed at improving them.  Given that, treating sleep disturbance in people with FASD should be, in my opinion, a major concern and focus of interventions aimed at improving their skills and quality of life. 

Unfortunately, there are not a lot of scientific studies backing up this theory.  Even worse, finding a doctor that specializes in diagnosis and treatment for FASD (there are criminally few of these folks) who also specialize in sleep disorders is nearly impossible.    There has been quite a bit of research showing that persistent sleep loss during critical developmental periods is especially harmful to healthy cognitive and motor development and that children subject to long term sleep loss may never reach their developmental potential.   It seems unnecessary to me to do specific studies confirming the same for children with FASD before simply working to improve their ability to sleep.  If it is critical to the development of a neuro typical child then it should be at least as important to one that is neuro compromised.   So in addition to educating more healthcare professionals about FASD – we need more to be aware of how to treat sleep issues. 

There’s precious little I can think of that I can do the help get that rolling.  But I’ve done a ton of my own research – on sleep disorders ( I suffer from insomnia myself) and FASD and interventions for both so here’s what we do for Little Man (with some theory / reasons for why / how we came up with this routine.) 

We use liquid melatonin 30 min before bed time.    Melatonin is the hormone in the body that directly regulates circadian rhythm – or the body’s sleep wake cycles.  The circadian rhythms, including sleep and pineal melatonin production, are modulated by the hypothalamus - an area of the brain frequently impacted in FASD. The hypothalamus reacts to input of light/darkness and other environmental information from the cerebral cortex (also often impaired by FASD) which then influences the timing, duration, and quality of sleep. Given that the areas of the brain regulating production of melatonin and the signals used to trigger it are often impacted – supplementing seems like an obvious tactic to me.  And for us – it works.  After adding this to Little Man’s nightly routine his “sleep onset” time went from anywhere from 1 to 2 hours to about 15 minutes.

Little Man sleeps under a weighted blanket with a very soft foam mattress pad on his bed.  The patterns of damage in the brain of a person with FASD are highly individual but tend to be widespread.  The ability to regulate sensation is almost always compromised.  Weighted item therapy has a long history of helping calm sensory dysregulation.  Plus – again – it works for us.  After adding this to Little Man’s nightly routine his “night time arousals” went from 3-4 a night to once or twice a week.  This was recommended to us by a young man who has FASD during one of the sessions we attended in Jeff Noble's Caregiver Kickstart program.

We have a set bed time routine of Bath, story time, singing and snuggles in the rocker from which we do not deviate – ever!  General good sleep hygiene suggests you should have a consistent bed time routine that consists of calming activities.  I know this is helpful to me with my insomnia.  People with FASD generally do better in any activity that is structured and consistent and often have problems with deviations from routine so this just makes good sense.  The Rocking chair portion also addresses Little Man’s vestibular processing needs.

 In times of absolute desperation - cosleeping.  We don't get much sleep if we allow little man in bed with us.  Its kind of like trying to sleep inside a cememt mixer.  But his bed has a trundle and I will at times sleep there with him if it i s the only way to get any sleep.  there is no research or recommendations I found for this - its my own last ditch idea before we found the things above.

Unfortunately what works specifically for my Little Man may not work for every person with FASD.  Hopefully it gives you some ideas though.  Other things I have seen, heard, or read about you may want to consider when looking to help your own FASD’er are:

Bedrooms should only be used for sleep - not play or punishment

No screen time for some set time period before bed

No horseplay or physical activity close to bed time especially running or spinning

More or less food before bed (low blood sugar from not eating or conversely reflux from eating may be a  problem)

Remove allergens from the room – dust, carpets, animals, use hypoallergenic covers for mattress / pillows

Deep breathing, Yoga, Meditation

Massage, Acupressure

Brushing / Joint compression protocol

Telling / reading Social Stories about sleep

Occupational Therapy for sensory integration during the day

Seek out a sleep study clinic to see if there is another underlying medical issue or advice on sleep medications

Pay attention to all sensory stimuli that may be impacting them and try to adjust that input according to their needs:

Sounds (use white noise machine)

Smells (aromatherapy can help)

Temperature

Lighting level (more or less depending on their issues)

Clean orderly soothing room – minimal stimuli – little furniture, soothing wall color, no hangings few toys etc.

Texture of bedding or night clothes

Here’s a list of my research sources on this topic to help you with our own detective work.  I wish you all good luck and Sweet Dreams!!

Sleep Health Issues for Children with FASD: Clinical Considerations/

Academic Editor: Myron Genel  Copyright © 2010 James E. Jan et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Sensory processing and sleep challenges in children with fetal alcohol spectrum disorder

Losing My Mind (A mom’s blog)

Sleep problems in FASD: A focus on solutions

Sleep and sensory characteristics in young children with fetal alcohol spectrum disorder.

Update

Sorry - I have been neglectful.  Life has been piling up as it has a way of doing and Mama is sick.  I swear I have NO immune system at all any more.  So I have been struggling to just keep up with everything going on and not done much in the way of posting. 

I am working on a couple of things for this blog though and will try to get the energy together to start getting them up here.  One is a post on sleep issues and what things we have found to be helpful with Little Man.  for another - I have been rereading Diane Mablin's book Trying Differently Rather than Harder. 

I really like the book.  I find it useful in a number of ways and wanted to write sort of a combination of book review with the spin off thoughts her work has inspired in me.  One piece of advice I can give easily is if you do not have a copy of the book get one and read it.  If you already have - reread it fairly regularly.  I am always surprised at how I can find something new or often I really need just a reminder of certain things.

Oh yeah, one final thing before I collapse back into a sniffling hacking heap - the schools assessments came back and they have decided to classify Little Man as "Other Health Impaired" and "Speech and Language Delayed".  I think of the 14 categories they have to chose from that is probably the best fit they could find.  He remains qualified for special education services for the next three years based on this.  I am, as usual following one of these meetings, happy and sad.  Sad because it is necessary.  I am so deeply sorrowful that there is no "cure" for him that will make the extra support un-needed some day.  It can be an endless sticky pit if I let myself dwell there so I don't dwell.  No amount of positive thinking completely erases all shadows of that grief though. 

Of course, I am also very glad that there is official documentation of the support he needs.  I don't kid myself that just having that will ensure it is all be smooth sailing for the next three years.  I believe (almost all) of his current team are really talented dedicated professionals that care about Little Man's success.  I also believe that the criminal underfunding of our public education system means I will always have to push and insist and be that squeaky wheel so that he gets all that he needs - but having the paperwork in place to support that is one less hurdle.  And given how little energy I have at the moment I am very grateful that it all happened smoothly and with no fight this time. 

What can you do?

Little Man had surgery today.  He broke his nose this spring and as a side issue to that he developed a cyst between the bridge of his nose and his left eye.  After multiple rounds of antibiotics and draining the fluid from it by needle once, the doctor finally decided the only way to fix the issue was to put him under general anesthesia and excise the cyst. 

I think any surgery for a child, no matter how minimal, is emotionally fraught for the parents.  I may be biased but I think with a special needs child there are – well - maybe not more worries but special worries.  Because Little Man understands and operates younger than his 6 years it was very hard to explain to him what was going to happen.  I know his ENT doesn’t see him enough to understand his limitations so it’s not all that surprising he was unprepared for how freaked out Little Man was by the anesthesia mask.  I did warn the doctor that although Little Man listened calmly to his description and seemed unconcerned, that it was not going to go smoothly once we were in the operating room.  I don’t think he fully believed (or maybe just did not fully appreciate the magnitude of) my warning until I was pinning my screaming, flailing son to the gurney while he and the nurse tried to still his thrashing head enough to get the mask in place.  I cried the whole time I pressed his little body down and sang his favorite lullaby and eventually he succumbed.  I then cried my way out to the waiting room. 

Unfortunately - in addition to the delightful start to the process - Little Man had a reaction to the anesthesia and stopped breathing during the surgery so they had to intubate him.  What was supposed to be a 30 minute procedure ended up taking an hour and a half in the procedure room itself and four hours in recovery.    Little Man appears fine now, other than a sore throat and some itchy stitches (and he would have had the stitches regardless).  Mama however is traumatized by guilt - for restraining him while he cried and begged me to help him and they gave him the gas that could have killed him, by the scar he is certain to have, and by his pretend play since we got home, where he holds down his screaming teddy bear and smothers it with a pillow.  So much of my parenting is second guessing.  Is it like that with neuro-typical children?  I don't have any so I just don't know.

What could I do though?  I could not leave the cyst unaddressed.  We had tried that for months and at one point it swelled so large that it was affecting his vision.  That is when they did the needle draining.  Maybe if we'd done this sooner he would not have the scar.  It would not have gone any easier but I didn't gain anything by waiting either.  I guess I could have let strangers restrain him.  But wouldn’t that just be sparing me – not him?  I guess I should have tried harder, more, longer to make sure his specialist understood how the process was going to effect him emotionally.  I get so tired though of educating sometimes - especially the doctors and educators. 

Reluctance by Robert Frost

Out through the fields and the woods

   And over the walls I have wended;

I have climbed the hills of view

   And looked at the world, and descended;

I have come by the highway home,

   And lo, it is ended.

The leaves are all dead on the ground,

   Save those that the oak is keeping

To ravel them one by one

   And let them go scraping and creeping

Out over the crusted snow,

   When others are sleeping.

And the dead leaves lie huddled and still,

   No longer blown hither and thither;

The last lone aster is gone;

   The flowers of the witch hazel wither;

The heart is still aching to seek,

   But the feet question ‘Whither?’

Ah, when to the heart of man

   Was it ever less than a treason

To go with the drift of things,

   To yield with a grace to reason,

And bow and accept the end

   Of a love or a season?

Happy Birthday Daddy.  I still miss you.