Simple Explanation of F.A.S.D.

I think this is a simple way to explain FASD to others.
Fetal Alcohol Spectrum Disorder Explained:
Most of us are familiar with the facial features of FAS (Fetal Alcohol Syndrome). But 90% of cases found on the fetal alcohol spectrum actually don't have the facial features.
WHY? Because the only way to get the facial features is for the mother to drink alcohol on Day 19, 20, & 21 of her pregnancy. BUT the unborn baby's brain develops the entire 9 months of pregnancy.
Here's a simple explaination:
FAS: All of the face...ALL of the brain damage.
pFAS: Some of the face...ALL of the brain damage.
ARND: None of the face...ALL of the brain damage.
My son has ARND (Alcohol Related Neurodevelopmental Disorder). It is an INVISBILE disabilty, which often makes it difficult for others to understand.

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."