You smell like Texas!!

I recently returned from a trip to Texas. And my son, Sam, (diagnosed with A.R.N.D.) has been smelling me several times since I've returned.  He told me that I smell like Texas. So I asked what does Texas smell like, and he said: "Yummy!" 
It's amazing to think about how different his sensory input is. One of the effects from his fetal alcohol exposure is that his sensory input is so much more enhanced: smelling, hearing, seeing, touching.  I don't think I can truly comprehend what that's like and how hard that is for him at times. Our sensory input effects us in so many ways.   
I had an experience when I was driving a car with a broken radio. One day the radio randomly turned on and my son and I were excited, enjoying listening to the music, even turned the sound up a bit.  But the next day when I got into the car, the radio was stuck, turned up loud. I could not adjust the volume or change the station or turn it off.  It remained like this for several days and I really started to go crazy.  I hated the sound of the radio that I couldn't turn down, off, or change the station! At times, it was hard for me to think and hard to focus on anything. It was such a frustrating feeling! I finally had my husband remove the radio and it was such a relief to have that constant input of sound gone. 
I wonder how many sounds and other senses around us are to my son, like the radio was to me.  I hope I can be more understanding and accommodating to my son's sensory input. 
One thing we have done is that we have started eating off of plastic plates with plastic utensils at dinner time.  The sound of a metal fork clicking against a glass plate is so frustrating for my son to have to hear repeatedly as he eats--that sound must be so much more enhanced to him. So we made that accommodation.  I only wish I had realized sooner.  I know there are also sound blocking ear phones that are used to accommodate sensory input of sounds.  I feel that I take for granted my brain's ability to appropriately input my sensory intake and I'm hoping to be more aware of my son and do what I can to make accommodations to help him. 
 I wonder how long I will "smell' like Texas :) 

Glurb, Blob, Clean, Atom!

"Glurb, Blob, Clean, Atom"....who knew? who knew that would help?
So I wrote up a checklist for Sam, a summer schedule checklist...we tried it for a couple weeks...and he told me one morning how much he hated it. So I talked to him about it, explained how it was important for him to do these things every morning. I grouped them into categories, showing him that really, it was like he was only doing 4 things each morning.  I also told him that maybe it would help for him to just think of one word for each group...then it might feel like he's doing less.  His eyes lit up and not only did he come up with a word for each group, he also turned it into a song.  Here are the groups, labeled with the words he came up with:

GLURB:
-say prayers
-read scirptures
-make bed
-clean room

BLOB:
-eat breakfast
-brush teeth
-wash face
-comb hair
-put deodorant on

CLEAN:
-clean bathroom mirror
-clean bathroom sink and counter
-take out the trash

ATOM:
-school work
-piano

GLURB, BLOB, CLEAN, ATOM!! 
who knew? who knew it could be that simple? I guess it pays to talk to him and listen to his input.

I think the checklist was just too overwhelming for him...too many things to look at that he had to do.
This seemed to simplify it for him and ever since...he does his morning chores so much better...to the tune of a song he made up!
Glurb, Blob, Clean, Atom!...that's what works...for now.

Setting Sail in the Seas of Life

I was reading an article by President Dieter F. Uchtdorf, Second Counselor in the First Presidency of the Church of Jesus Christ of Latter Day Saints. The article is titled "A Firmly Set Anchor" from the April 2014 Ensign magazine.  It is a great article about setting anchors and building firm foundations; however, the following phrase from the article has stood out to me very strongly these past couple months:
"Of course, a ship is not designed to remain stationary in a harbor but rather to raise anchor and sail the seas of life. But that is a parable for another time." I feel like it's time for my son with an FASD (Sam) to "set sail in the seas of life", to move on from some protective environments he is currently in, like the school he attends.  But I'm very afraid of what types of waves, hurricanes, and storms we may encounter over the next few years and I have been feeling very stressed out about it.  But the feeling and thought that keeps coming to my mind is for him to "set sail in the seas of life". And a few days ago, the following impression came to me:
God: "It's time for Sam to set sail in the seas of life." 
Me:  "But I'm scared to death. I'm so afraid that he will drown." 
God: "Don't worry. His lifeguard walks on water."

Include demonstration with instruction

People living with FASD can do things when they see someone else doing it first. Try to include demonstration with instruction. They may not understand what is said as much as they can understand what they see.-Jeff Noble

Pity Party....my fears hushed

Lately I've been having a pity party about the reality of this never ending trial in my life. Yes, FASD is a gift that helps me learn and grow, but the reality is that it is also a burden and a trial...one that I cannot take on by myself.  I have been so afraid as I see ourselves approaching the upcoming, difficult teenage years of puberty.  And my "fears were hushed" as I read in the Book of Mormon, Mosiah 23:27-28, where it says:  "...Alma...exhorted them that they should not be frightened, but that they should remember the Lord their God and he would deliver them.  Therefore, they hushed their fears, and began to cry unto the Lord..."
My fears have been hushed, and I have committed to cry unto the Lord more often and I have faith that He will deliver us and help us through these upcoming years.  If the Lord will help me, be near me, every step of the way, then I can do this.

It's a GIFT

"FASD is a gift"...a new thought that was just introduced to me.  It IS a GIFT.  It's a gift that pushes me to be a better person.  It's a GIFT that reminds me not to judge others. It's a GIFT that shows me my weaknesses at their worst and provides opportunity for me to overcome such weakness...and if I don't overcome it right away...I'm blessed with many other chances to try again.  The longer I live with a son with an FASD, the more I realize that it is me that needs to overcome.  He will be judged by God for only what he knows and understands and God knows what that is.  And I will be judged for how I treated God's special child.  I hope and pray that I will treat him the way God wants me to.
I love this quote by Elder Jeffery R. Holland: "I testify of the holy Resurrection, that unspeakable cornerstone gift in the Atonement of the Lord Jesus Christ! ^...I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally “free at last.” ¹² Until that hour when Christ’s consummate gift is evident to us all, may we live by faith, hold fast to hope, and show “compassion one of another,” ¹³ I pray, in the name of Jesus Christ, amen."

Something learned...to apply to all aspects of life.

Here is a great tidbit shared by James Gideon (an adult living with an FASD): "Start with the assumption that all human beings want to please others and to be successful - when there are problems, ask yourself what are you doing that is setting this up and allowing it to happen - what is it in this situation that makes it unlikely for us to be successful.  I always think we are successful. You know what they are saying though. I guess for me I look at my success as my own doing, not someone elses, but I guess when I was younger this would have been an issue or if I didn't have the skills, structure, routine that I have today, this would be an issue in my adult life. Really cool tidbit."
I love how this tidbit asks me to look at myself and evaluate myself to see what I can do, what I can change to help the situation. What a good outlook to have...rather than trying to point my finger at someone or something to point blame...instead look inwardly at myself to see what more I can do to help. I think this is a great outlook to have in all aspects of life!

PREVENTION!!!

"If you want to see some success with your loved one with Fetal Alcohol, stop trying to CHANGE their behavior(symptoms), instead put your focus on PREVENTING the behavior(symptoms) from happening in the first place." Jeff Noble

try differently, not harder

"WHAT TRYING DIFFERENTLY CAN CHANGE"
"Trying differently means to expand your range of options and move from punishing behaviours to understanding them and to changing the environment and your expectations of the affected individual. It also means shifting from changing people's 'symptoms' to changing the way that you react. When parents, caregivers, and professionals learn about FASDs and are able to understand the causes of problem behaviours and what the underlying physical issue(s) might be, and act accordingly, secondary characteristics of FASDs such as meltdowns, irritability, frustration, anger, anxiety, withdrawal, shutting down, trouble at home/school, legal and mental health problems etc., can be prevented or decreased.

When the needs of individuals with an FASD are not met, these secondary characteristics can lead to secondary diagnoses such as reactive/attachment disorder, ADHD, Learning Disabilities, ODD, ADD, OCD, Conduct Disorder, sociopath, etc. Lack of understanding and inaccurate interpretation of problem behaviours lead to poor outcomes---diagnosis of FASDs is essential in preventing this.

When behaviours are understood, the interventions are supportive and frustrations are reduced. Trying differently alsop means that when something doesn't work, don't give up, don't try harder, try something different!

This is a long tidbit but this is going to go into my next little bit of tidbits but until tomorrow's tidbit,."
-James Gideon

With regards to behavior...

"With regards to behavior: You child is never ever going to come and tell you they need less stimulation in their life. The only way you will know this is with their behavior. So instead of looking at it as something to consequence and punish and modify - look at it as their only way to fill a need for themselves. Look at the behavior and look UNDER it. Find the need and fill it and I promise you you will have less behavior and more peace in your home. It takes years of doing this for your child before they start recognizing it and removing themselves from overwhelming stimulus. They don't have the capacity to do this at first! I am not saying no consequences though - we are big believers in consequences when they are needed. Sometimes though filling the need is consequence enough." New Hope Academy

Favorite quotes by Jeff Noble: FASD is Forever, Frustration is not.

"Just because people with Fetal Alcohol may know better, doesn't mean they can do better. That's why external guidance and support is so key to their success."

 "If someone with an FASD is aggressive, it's usually because they are in over their heads. When you match your expectations with their actual ability, you'll see less aggression. You would be aggressive to, if you constantly could not understand things. Ever try putting something together from IKEA?"

A New Year is a great time to try new things!

I was totally surprised that my son chose to leave Ozzy home today.  It was 100% his choice.  He got some new animal friends for Ozzy on Christmas.  I told him he couldn't bring all of them to school, but told him that he could only bring one if he would like.  And he chose to leave Ozzy home...I could tell it was hard for him, but I stayed neutral through the whole thing as he made his choice.

Then, on the way to school he says: "A new year is good for trying new things.  I'm trying something new by leaving Ozzy home."  And I'm thinking, Wow! Where did that come from?

Then, he says, "And I'm taking a break from wearing my gray shirt."  I hadn't even noticed til he said something...and yep, sure enough, he's wearing the same shorts, but different shirt...the shirt he usually wears to our family reunions.  I have no idea where that came from! Totally shocked!

Over the break I did show him that I have two of his gray shirts that he likes to wear and so he didn't have to worry cause one of them should always be clean and ready for him to wear.  Not sure if that made a difference or not.  Not sure if it will even last. 
But hey, at least today is a day that my son tried some new things, and I'll take that as progress! :)

What do I do? Helpful Tips

**POSITIVE PRAISE; BUILD ON SUCCESS**

Structure:

all kids raise hand before any comment or question (enforced/re-do)

Consistent Routine/Predictable

simply keeping the order of doing things consistent.

Supervision (emotional age)

teacher sit by him (doesn't like sitting on the end)

a child that's a good example on the other side of him

after class time, wait 'til adult picks him up

Anxiety

Prayer or read scripture in class/ talk or scripture in sharing time: always ask. If no, 'that's OK. When you're ready for that, you'll do it.'

Concrete

he takes things very literal. Doesn't get abstract or sarcasm

Learns by Repetition and Very Visual

(can remember things best when related to something visual)

good visual memory (poor working memory/auditory

“Listening tool”:

-rope puzzle

-clay

*Tone

*Body Language

*less words

Things that help him de-escalate:

quiet, quiet voice, eye contact, confidence (positive praise, build on success), clear simple directives, quiet melodic words, gentle tone of voice, music

Things that help him escalate:

poking, noise, too much talking, chaos in class, frustration, anxiety, communicating from a distance with no eye contact, complex directives, too many directives at once, ultimatums, raised voice, shaking finger, harsh tone of voice, threats.