When I first started Sam's autism recovery journey, I was challenged by another autism mom who had successfully recovered her son, to write down what life will look like when Sam is fully recovered. It was REALLY hard to picture but I did it. I originally wrote this on May 30, 2012. I pretty much forgot about it until I discovered it recently. Currently I'm putting more efforts into helping Sam spell to communicate than recover from autism, and many spellers in the autism world believe in accepting and embracing autism rather than recovering from it. I'm basking in the miracle of finally getting to know my son through spelling to communicate and am at peace with whatever he wants to do with his life, including continuing to help his body heal. It is amazing how many things I get to check off the list now, 7 1/2 years later!!
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So this morning after some really rough hours last night and this morning with the little guy, some of my story started to pop into my head and I decided to write it. This is personal and sacred.
My most minimal prayer is for him to stop being in pain, and for him to stop hurting himself and me. On top of that I pray that he will talk so that we will know what he needs. Here is what I am trying to see:
When Sam is recovered, my life will not be perfect. I will still have lots of challenges; they will just be different.
When Sam is recovered, we will have to help him work through his emotions about being adopted.
When Sam is recovered, we will have to address the idea of contact with his birthfamily again.
When Sam is recovered, he will have homework.
When Sam is recovered, he will be invited to friends' houses and will want to invite friends over. Noisy not-so-little boys, some of whom who will annoy me.
When Sam is recovered, he will ask for things in stores.
When Sam is recovered, he will nag me to stay up later playing video games.
(Gentle readers, the above might seem trivial but I am sobbing now.)
When Sam is recovered, he will be able to make the decision to be baptized.
When Sam is recovered, he will be able to make the decision to have a patriarchal blessing.
When Sam is recovered, he will have the opportunity to receive the priesthood, and pass and bless the Sacrament.
When Sam is recovered, he might be teased by the other kids, and he will care.
When Sam is recovered, he might tell me how angry he is at me.
When Sam is recovered, he will be able to do things with his dad that they can both enjoy together, like playing catch, riding bikes, going to the movies and the zoo, instead of just being pushed around in the stroller or driven in the car listening to music.
When Sam is recovered, I will have to drive him to early morning seminary.
When Sam is recovered, he will be subjected to all the pressures of other teenagers.
When Sam is recovered, he will go away to college and we will be empty nesters.
(Insert more tears here.)
When Sam is recovered, he will have the opportunity to go on a full-time mission, maybe to China.
When Sam is recovered, we will be able to go out to dinner, on vacations, and to parties as a family without hours or days of preparation.
When Sam is recovered, he will be able to go to the bathroom by himself.
When Sam is recovered, we won't have to worry about him having a poo accident at a store or at church.
When Sam is recovered, we will have to talk to him about sex, and try to keep him from having it.
When Sam is recovered, we will have to teach him how to drive.
When Sam is recovered, we will be able to take him through the temple.
When Sam is recovered, we will have lots and lots and lots of conversations.
When Sam is recovered, his face and legs won't be covered with bruises.
When Sam is recovered, he will want to wear different clothes.
When Sam is recovered, he will play his music too loud and his room will be a mess.
When Sam is recovered, he will come up to me and give me a hug.
When Sam is recovered, he will open the front door after school and say, "Hi, Mom, I'm home!"
When Sam is recovered, he will ask, "What's for dinner? I'm starving!"
(I wonder what his voice will sound like when he is speaking in sentences.)
When Sam is recovered, I will have to find another hobby.
When Sam is recovered, my husband and I will be able to go on a mission.
When Sam is recovered, he will get to visit his sisters and brother in their homes.
(It is so hard to visualize a normal life. I think it will be a shock. I think it will happen gradually.)
When Sam is recovered, he will be famous. He will have so much to teach everyone about coming out of autism.
This is not really the story that my friend prescribed. She suggested describing a single day, the details, the party we would have, the feel of the sand on the beach between my toes, etc. (Her son recovered almost overnight.) I guess I am not visualizing a single day at this point. But it was really helpful to express the things that will be weird and hard about raising a typical teenage boy. I think that it is true that I am getting benefits from him not progressing. I will own that. Raising my first typical teenage boy was no picnic.
But oh how much fun it still is to hear my older son sing! And to watch him play with his puppy or eat me out of house and home. I can't wait to hear Sam sing! I wonder if he can carry a tune?
Thursday, November 14, 2019
Friday, November 8, 2019
A “Laugh-A-Lot” Wink
I had a sweet "Laugh-A-Lot Wink" yesterday. (This is like a God Wink which is a special "coincidental" experience that reminds you He's there, but it was from my BFF in heaven, "Laugh-A-Lot", or LAL for short.) I've been massively decluttering in preparation for construction and came across my violin which I hadn't touched in years and needed repairs to be even playable. It's a nice instrument that was a financial stretch for my parents to buy for me forty years ago and I thought it might be worth some money now, that I could put into a new countertop or something. I also have a severely ill friend who needs life-saving treatment and it felt good to think I could use this money to help her. I had no desire to play again and it seemed wasteful to just keep the violin in a closet, so I made an appointment to have it appraised.
I texted my girls to see if they were OK with me selling it, and they were fine, except that A surprised me by saying she wanted it if I decided not to sell. As I contemplated the idea of A having it, I felt really good, but I was still really thinking of selling it if it was worth a lot.
I made the appraisal appointment and drove down to the guy's shop in La Jolla yesterday. As I drove, mental recordings of classical pieces I had not thought about in years flooded my mind, and felt so grateful for the wonderful musical education and experiences I'd had over the years. And I felt sad about parting ways with this instrument. As I entered the city of La Jolla I got even more emotional as I realized the last time I had been here was to take a hike with LAL to the top of Mount Soledad! What a beautiful memory!
I got to the shop and the owner turned out to be a real character, which is an LAL Adventure story in and of itself! He told me the instrument didn't have a lot of resale value and would cost $655(!) to be repaired! As I tried to digest this information, a woman came into the shop to pick up a new bow. She turned out to be a professional violinist who proceeded to play samples of beautiful pieces as she compared the qualities of three different bows, and asked us which one we liked best! It was gorgeous and fun. By the time she had finished playing, I had decided to spend the money for the repairs and start playing again!!
On the way home I decided to take the scenic route and got lost. My GPS redirect took me right past Mount Soledad! I drove right past the cross AND the icky porta-potty that LAL and I desperately needed but were loathe to use! The view on the way home was stunning and I was filled with excitement about playing again. I recalled LAL's cadre of elderly friends who sang, wrote, and performed poetry in public and realized I'm not too old to cultivate my musical talents.
When I got home, I texted A and she was excited and says she wants to have us play something together (her on piano or guitar) when she comes for Thanksgiving!
This had LAL's fingerprints all over it! I had had a stressful week and she got me out of the house, looking at beautiful views, having an adventure, and feeling so much joy! Last night I stayed up too late listening to some of my old classical pieces on YouTube and can't wait to get my violin back!
(Texted to LAL's husband and sister)
I texted my girls to see if they were OK with me selling it, and they were fine, except that A surprised me by saying she wanted it if I decided not to sell. As I contemplated the idea of A having it, I felt really good, but I was still really thinking of selling it if it was worth a lot.
I made the appraisal appointment and drove down to the guy's shop in La Jolla yesterday. As I drove, mental recordings of classical pieces I had not thought about in years flooded my mind, and felt so grateful for the wonderful musical education and experiences I'd had over the years. And I felt sad about parting ways with this instrument. As I entered the city of La Jolla I got even more emotional as I realized the last time I had been here was to take a hike with LAL to the top of Mount Soledad! What a beautiful memory!
I got to the shop and the owner turned out to be a real character, which is an LAL Adventure story in and of itself! He told me the instrument didn't have a lot of resale value and would cost $655(!) to be repaired! As I tried to digest this information, a woman came into the shop to pick up a new bow. She turned out to be a professional violinist who proceeded to play samples of beautiful pieces as she compared the qualities of three different bows, and asked us which one we liked best! It was gorgeous and fun. By the time she had finished playing, I had decided to spend the money for the repairs and start playing again!!
On the way home I decided to take the scenic route and got lost. My GPS redirect took me right past Mount Soledad! I drove right past the cross AND the icky porta-potty that LAL and I desperately needed but were loathe to use! The view on the way home was stunning and I was filled with excitement about playing again. I recalled LAL's cadre of elderly friends who sang, wrote, and performed poetry in public and realized I'm not too old to cultivate my musical talents.
When I got home, I texted A and she was excited and says she wants to have us play something together (her on piano or guitar) when she comes for Thanksgiving!
This had LAL's fingerprints all over it! I had had a stressful week and she got me out of the house, looking at beautiful views, having an adventure, and feeling so much joy! Last night I stayed up too late listening to some of my old classical pieces on YouTube and can't wait to get my violin back!
(Texted to LAL's husband and sister)
Thursday, October 10, 2019
Monday, April 1, 2019
Monday Morning Heaven, Track 1
So many things to catch up on today when all I want to do is paint.
(Eat dessert first, right?)
Scratch scratch goes the brush on my scuffed hallway walls. (Sherwin Williams "Wool Skein".)
Soft singing comes from my almost-30-year-old faux-tough-on-the-outside son in the shower. What a sacred sound.
Scratch scratch. I think I love this color.
"Heeeeey Bowie Bowie Bowie," son lovingly greets his dog.
Scratch scratch. I'm glad Friday's 1-year-anniversary beach memorial for my "Laugh-a-Lot" BFF is over. It doesn't mean I'm still not sad. I don't think I'm ever going to not miss her. Crash goes the memory of Friday's beautiful waves in my mind.
Slurp slurp slurp slurp. That dog smells and leaves hair EVERYWHERE. But that slurping from his water bowl is a sweet sound.
Scrape scrape clank clank comes from the garage as my son does homework for his woodworking class. He's healthy. He's alive. I get to see him every day.
Scratch scratch. "And now, my sons, remember, remember that it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall."
The "home church" lesson as I like to call it absolutely nails it every week. So grateful for that. I got to talk to one of my daughters last night about thoughts about the scriptures, and chat with the other about her new haircut and decorating ideas for her bedroom.
Scratch scratch. I love this color. It feels so good to make something beautiful, to have control over something, instant gratification.
On Friday I scratched Laugh-a-Lot's name in the sand, and her sister and I made a big heart out of rocks. It felt so good to play in the sand. Her husband sprinkled some of her in the Pacific. It was beautiful at the time, but really hit me on Saturday and Sunday, and reminded me that my brother's body is in bits in the North Atlantic.
Click click click click. I stopped painting to write this. I need to go back to painting. It gets my emotions back on track.
I'm testing a wall color for the addition we hope to do to make room for lots of kid and grandkid visits. My older son says Dad loves those grandkids even more than I do. I said that's not possible. Son says, no, he's just more quiet about it. He could be right. It feels so good to be excited about our family together. #unity
My baby girl is coming to visit in just four days, and other daughter and her family are coming at the end of the month!
"When other helpers fail and comforts flee, help of the helpless, oh, Abide with me.....Earth's joys grow dim, its glories pass away. Change and decay in all around I see, Oh, thou who changest not, abide with me." The elderly music leader who took over the calling from me often picks weird songs that nobody knows and I often say to myself that I picked better songs. But boy, was she inspired with the closing song yesterday. Yesterday the three most reliable sharers in my ward bore their testimonies and each of them said something that directly answered my prayers and comforted me.
"Let's go, Bowie!" Sound of joyfully scampering feet. Click goes the leash. Slam goes the door.
Baby girl who loves to write told me last night that I'm a good writer. I was touched and she kind of inspired me to sit down and write this. The difference, though, gentle reader, is that I would rather paint so I'm not going to spend a lot of time editing this! :)
Scratch scratch scratch!
Wednesday, March 27, 2019
A God Wink in the Garden Center
Posted this in the Nest but wasn't able to tag you. Thought it might encourage you. And thank you forever for teaching me to presume competence!
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I'm writing this from the parking lot of Armstrong Garden Center because I can't wait to share this evidence that our kids are known, loved, and watched over. I've been a little overwhelmed about the future as Sam prepares to go to an adult transition program next year. There are so many unknowns. So I got the urge to go to the garden center this morning and get some fun stuff to plant outside Sam's bedroom window. I saw some young men watering the plants so I asked one of them if they had any honeysuckle. When I saw that he wasn't wearing an employee uniform and by the way that he spoke I realized that he might be autistic and here as part of some kind of program. BECAUSE OF S2C I PRESUMED COMPETENCE!! I wouldn't have known to do that before! He went to ask someone and he came back with a woman I knew!! She was one of Sam's preschool teachers and she is also a member of my church and now she works in the adult transition program at our local high school! (Currently Sam rides a bus to an autism school 30 minutes away.) She described the various activities they do as part of their program, including volunteering at Armstrong Garden Center! (And Sam LOVES that place!) As her students gathered around her, I continued to talk to the teacher but BECAUSE OF S2C I INCLUDED THE STUDENTS TALKED TO THEM LIKE THEY WERE PEOPLE! They were four big guys just like Sam and I could totally see Sam fitting in with them. They invited Sam to come and visit the class. They even take classes at the local community college which is something I know Sam will love. (College would have never crossed my mind before S2C.) This "coincidence" which was not a coincidence was a God Wink to remind me that we are being taken care of! And I'm telling all of you so that you will feel it, too! And it felt so good to interact with those guys and to presume competence and to witness their competence and warmth.
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I'm writing this from the parking lot of Armstrong Garden Center because I can't wait to share this evidence that our kids are known, loved, and watched over. I've been a little overwhelmed about the future as Sam prepares to go to an adult transition program next year. There are so many unknowns. So I got the urge to go to the garden center this morning and get some fun stuff to plant outside Sam's bedroom window. I saw some young men watering the plants so I asked one of them if they had any honeysuckle. When I saw that he wasn't wearing an employee uniform and by the way that he spoke I realized that he might be autistic and here as part of some kind of program. BECAUSE OF S2C I PRESUMED COMPETENCE!! I wouldn't have known to do that before! He went to ask someone and he came back with a woman I knew!! She was one of Sam's preschool teachers and she is also a member of my church and now she works in the adult transition program at our local high school! (Currently Sam rides a bus to an autism school 30 minutes away.) She described the various activities they do as part of their program, including volunteering at Armstrong Garden Center! (And Sam LOVES that place!) As her students gathered around her, I continued to talk to the teacher but BECAUSE OF S2C I INCLUDED THE STUDENTS TALKED TO THEM LIKE THEY WERE PEOPLE! They were four big guys just like Sam and I could totally see Sam fitting in with them. They invited Sam to come and visit the class. They even take classes at the local community college which is something I know Sam will love. (College would have never crossed my mind before S2C.) This "coincidence" which was not a coincidence was a God Wink to remind me that we are being taken care of! And I'm telling all of you so that you will feel it, too! And it felt so good to interact with those guys and to presume competence and to witness their competence and warmth.
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