The Role of a Voice

Happy Canada Day, eh!
I had the pleasure of taking a tour of one of my student's new school with his parents this week which reminded me of just how important a role we have as voices.  English is their second language and they are learning about our Canadian school system.  It was my principal who reminded me that this child is one who could easily get lost in the system.  He is a quiet, shy young man with a great heart and a quick smile.  He struggles, though, with understanding who makes a good friend and who doesn't make a good friend.  His new school and I have had several conversations to date but his direct supervisors had only met him once three months ago and had never met his family.  He had his IPRC meeting, he has an IEP, he has a five-step transition plan, he has an EA allotment profile, and it took the face to face meeting interacting with the direct supervisors for 15 minutes before a truly successful plan was created.  I feel so much better now in terms of what next year is going to look like for him.  He will be fine.

It is amazing, though, what the face to face conversation does.  When I think about when our truly effective advocacy happens, the direct conversation is always the best.  You know what I am talking about.  So many of you are fabulous at banging on people's doors and refusing to go away.  It is absolutely a skill being able to walk into intimidating places and meet with strangers.  Articulating a need in a way people can understand is a challenge onto itself as well.  It is why we surround ourselves with quality people who can support us in these different environments.  My eldest daughter graduated from high school a couple nights ago to great fanfare.  While we have no idea what September is going to look like for her yet, there was one key point from last night we are holding tight.  She won the award for the most volunteer hours with 184 hours.  That award represents her ability to put others first, being willing to serve, her courage to speak and work with different people in different environments, her belief that she has something valuable to contribute, and her strong sense of community.  She has most certainly found her voice.

What happens, though, if someone doesn't have a voice.  One of my passions is to tell the stories of our WWI veterans.  Lance Corporal Cecil Smith is a great example of what happens when someone doesn't have a voice.  Lance Corporal Smith was a 17-year-old man who sailed to Halifax from England after all his relatives passed away.  He later died in WWI and all his papers and medals went into Archives.  However, a Beckwith Township farmer, who Cecil helped for three months, convinced his local municipality to add Cecil’s name to their cenotaph.  Through that farmer’s voice, a hundred years later, Cecil’s sacrifice has not been forgotten.

It can be frustrating trying to be that voice, though.  We remind others constantly, review frequently, teach repeatedly, and occasionally find success.  I personally am excited about yesterday’s cabinet announcement and particularly one thing.  Doug Ford has created a new ministry called Ministry of Children, Community and Social Services and appointed Lisa MacLeod as Minister.  I am excited because what he has done is combined children and adults together under this portfolio.  We are no longer dealing with one ministry for children and another ministry for adults.  For us, this hopefully will eliminate that huge transition we experience when our children living with FASD become adults.  And Lisa MacLeod, champion of Rowan’s Law and the Acquired Brain Injury group is in charge.  I believe we will find a receptive audience in Minister MacLeod.  For me, that is a success.  While it would be nice to have things move faster, ask yourself this.  Are we in better shape today than on June 30, 2017? Or June 30, 2013?  While we haven’t hit the homerun yet, single after single will get us there as well.  Remember, the only way we lose is if we quit.  As long as children living with FASD need a voice, we will not quit.

Sleep and FASD

One of the big issues that gets discussed a lot on the FASD Facebook forums is sleep and the lack of it.  If you are one of the lucky people with a child living with FASD who sleeps well, count your blessings.  Our middle daughter always falls asleep within five minutes of the head hitting the pillow, can sleep through anything and always wakes up ready to go.  She is also the one who has very few self-regulation and mental health challenges.
However, our youngest has really large sleep issues.  It is always 60-90 minutes to transition into bed, and 60-90 minutes to get going in morning.  We have been doing all the regular things to encourage sleep and have been meeting with medical professionals.  We received some information that was new to us and thought it might be helpful for you.
We know routine is important but it needs to be a routine that works for everyone.  If we have to make a choice between routine and escalation or being willing to adapt, we adapt.  We used to try a 8pm then 9pm bedtime but we were finding my son would just play and toss and turn until 10pm at the earliest and lots of time 11pm.  We made the decision we would rather have him be physically active until 9pm and make himself more tired.  We make sure there are no electronics including TV the hour before he goes to bed.  We do the Melatonin every night and give him Vitamin D in the morning.  His room and bed is a cave with blankets and curtains blocking out light, window open to cool the room, a blue LED light instead of a regular nightlight, and one of the better investments was the $35 white noise machine from Amazon.  It has been one of the few things that has made a difference.  We did stop Melatonin because our pediatrician said melatonin does have the opposite effect on 2% of people and will keep them awake. 
We always follow the routine of get our snack, gather up our stuff and go to our room, make our bed, do our bathroom routine, get into bed, cuddle with Mom and give a hug to Dad.  We did use Mom's Fitbit for a few nights to get a sense of the type of sleep he is getting.  We saw from the Fitbit he was likely not getting any REM sleep because he was moving every 20 minutes or so.
So we got a referral from his pediatrician to a fellow pediatrician with an interest in sleep.  It was very nice in that she was aware of how FASD can impact sleep and commented on the fact we are doing everything she would want parents to be doing.  She also mentioned she agreed adapting instead of escalating is an excellent choice in her opinion.  Finally, she also went on to say she really doesn't like using medication which is fabulous as the thought of adding another medication to the current cocktail is a little intimidating.
She shared with us that no one sleeps for much more than 90 minutes before stirring due to our survival instinct.  She was also intrigued with the Fitbit data but she won't use the data because Fitbit won't share the algorithm they use to determine sleep patterns.  Sleep specialists don't know if the Fitbit algorithm is based on research or not which is why they have a similar device called an actigraphy which is also worn at home.  She thought our son may have restless leg syndrome so she made the following recommendations.  She said consider a weighted blanket because of his sensory needs, and take additional iron without consuming dairy or citrus before going to bed.  She said if you have an elevated iron level, that can help increase sleep.  Finally, if these things don't work, then we would look at a medication called gabapentin.  She also said it could be sleep apnea but there is no treatment for sleep apnea other than the head gear which our son would never use due to his sensory needs.
While we don't have any great solutions yet, it is encouraging to know once again we are working with a team that gets it.  Sleep is such an important part of our health and yet there are so few doctors, treatments and research articles.  It has been connected with mental health, anxiety, intelligence, heart conditions and other aspects of our lives.  And frankly, as a caregiver for children impacted with FASD, sleep is vital for all aspects of our entire family.

On another note, at the last SEAC meeting for the Catholic District School Board of Eastern Ontario, Superintendent Dr. Hawes announced they elected to use the additional Ministry money to hire an Occupational Therapist to focus on sensory needs, a lead Psychologist, a Behavioural Psychologist, and a Speech-Language Pathologist to create a multidisciplinary team to support all students.  It is so inspiring to me that this school board took action to support its students in such an unique way.  Once again, I am so proud of our school board in making this happen.

The Importance of Words and FASD

It has been a while again between work and life but I recently had an interesting conversation dealing with the new FASD website coming out later.  We were having a discussion about the difference between disorder versus disability versus syndrome versus injury.  It was being discussed because of the different labels that have been given over the years related to FASD.
Over the years, it has been called Fetal Alcohol Syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Neurodevelopmental Disorder - PreNatal Alcohol Exposure ND-PAE or sometimes (PAE), Partial Fetal Alcohol Syndrome (pFAS) and Alcohol-Related Birth Disorder or Defects (ARBD)
Today, we use Fetal Alcohol Spectrum Disorder (FASD) because we recognize this term really captures the impact of this disability.  We know now this disability is a permanent, brain-based, whole-body disability that doesn't have a cure at this time.  We also know with the proper supports, it can be managed.
When you think about the term Fetal Alcohol Spectrum Disorder, each word is so key.  Fetal means it is developed during pregnancy and only pregnancy.  Alcohol means it comes from all types of alcohol and only alcohol.  Drug usage during pregnancy does not cause FASD.  It also doesn't matter whether is is beer, wine, spirits, liquor, hard lemonade or anything else.  Spectrum is huge because it means each person living with FASD is totally unique to themselves and normally refers to cognitive levels.  They may be anywhere on the intelligence or cognitive scale from gifted to developmentally disabled and can have a wide assortment of other medical conditions.  Finally, disorder.  In its purest form, it means the absence or opposite of order.  It has a universal, permanent meaning to it.  Disability is the absence or opposite of ability.  This is a smaller term.  An ability is one function or skill.  A syndrome is a large collection of temporary effects and an injury is a temporary effect on a particular part.
In the Post Traumatic Stress Disorder world, the military now uses the term Operational Stress Injury.  Stephane Grenier makes a great argument in his writings in that PTSD is not an universal unspecified lack of order which has very negative stigma in the military world.  In the military, you never want to have a lack of order and it is not an unspecified thing.  It is temporary, not permanent which is why they now use Operational Stress Injury.  It comes from a military operation, it creates stress and it is temporary and healable which is why disorder is not the right term in that situation.
Autism Spectrum Disorder went through the same thing.  It used to have intelligence levels associated with it where it would be called Asperger's Syndrome, Autism (mild, moderate, and severe type) and PDD-NOS where the NOS means Not Otherwise Specified in the DSM-V.  Autism achieved their goal of getting everyone to understand intelligence levels have nothing to do with this.
I love it when people don't know what FASD stands for because it gives me the opportunity to share with them the significance of each term.  I just had a conversation this week with a lady who thought FASD was a condition that the birth mother can develop.  Once she understood FASD is developed in the child, not the mother, she was curious as to how it will manifest itself in the child.  At the end, she was speculating about a child she knows and whether he has FASD.  This is why it is so important we are speaking as one unified voice with one unified term.  Once Autism got all their terms classified as ASD, they took a huge step forward in their advocacy.  It shouldn't matter if we have suspected FASD, at-risk for FASD, ARND, ARBD, ND-PAE, pFAS, FAS, or FASD.  We are all under the FASD umbrella and together, we can make a difference whether it is one person at a time or one country at a time.

On the subject of the importance of words, Kids Brain Health Network and Katelyn Verstraten wrote a great article on the significance of Dr. Popova's study on FASD prevalence.  Please feel free to check it out.  http://kidsbrainhealth.ca/index.php/2018/05/28/beyond-the-numbers-why-canadian-neurodisability-prevalence-rates-matter/