Year 12, by the numbers

13! What an important number. Aulton is an official teenager, although he’s been unofficial for awhile. Other numbers defined his 2018: 

12/25 - my forever Christmas gift
200- approximate number of therapies 

9- days of dolphin therapy
3- quarterly RPM workshops
1- hospitalization
2- new diagnoses (severe apnea and scoliosis)
0- surgeries
26- doctor appointments
2 - ER visits
11- homeschool lessons each week

Aulton has had such an interesting year. He has really struggled with his health, but his schooling is going phenomenally well. He is advancing quickly with RPM and language.
Aulton deals with some unimaginable hard things regularly, he deals with smaller challenges daily. This, in and of itself, is remarkable. The fact that Aulton faces his trials with courage, serene strength and faith is inspiring.

The really difficult things: Aulton is growing so quickly and his scoliosis curves so dramatically, with the growth, that spinal surgery is iinevitable. He starting wearing a brace this year and it has been a struggle (mostly for me). He has so much confidence and peace about it. Aulton had a sleep study in the Fall and was diagnosed, the day after, with severe sleep apnea. His neurologist called me and said how sorry he was. He also explained that he believes there’s a physiological reason for the apnea....meaning that something physical is causing the obstruction of his airway. He only stops breathing during REM sleep, which is very helpful information. Now, i understand his fatigue a lot better. The first step to try and solve this problem is tonsil and adenoid surgery. That is happening January 30 and I’m so nervous about it. The next step will be another sleep study, when he has recovered and I’m only thinking about it, up until that point. I’m taking a similar approach to his spine. I’m doing what I can right now and we will cross bridges as we come to them. Aulton’s hospitalization in April was tough. A young boy with the same muscle disease passed away (from a cold) shortly before this. That made the hospital stay so much scarier. Aulton got so sick, so fast. It very so terrifying.

There were lots of positives about 2018, too. Aulton started full-time homeschool, with a large amount of devotion to RPM. I have learned so much about him this year. I’m most surprised by the amount of compassion he has for humanity. He cares about the environment, the poor, law enforcement and injustices that have happened in the past, like slavery. The words he spells are still unpredictable, but so fitting. It’s very interesting to see things from his perspective. In August, I purchased an official curriculum and we are tackling subjects in an organized manner and he and I are learning a lot. RPM is not just a communication method. It teaches a lot about purposeful movement, self commands and promotes body awareness. RPM has made a big difference by not only giving Aulton an authentic voice, but by bolstering his confidence and making him more aware of the world we are living in. He is making good progress in many areas. Our lives have been changed, for the better, by RPM and it is the best thing we have ever done for Aulton and, by extension, our family. 
Some things have not changed. Aulton is still content and happy most of the time. He still loves the water and swinging. He still uses Dora for comfort and regulation. He is generally ok with going anywhere we want to. I still try to provide lot of experiences for all of my children. He is still busy with lots of appointments. 
I’m excited to see what I can learn about him next year and a little apprehensive about anything that happens with his health. 
One thing is for sure, Aulton will continue to bless the lives of those around him and will continue to amaze and astonish. 

Ausome

Ausome Autism

April, as many people in the United States know, is Autism Awareness month. Some people call it Autism Acceptance month or Autism Activist month. I like all of those verbs associated with Autism month. They all require action. I've wanted to share some of my feelings about Autism. 

Awareness is something I like to focus on most of the time. I have seen many friends post that they don't need an awareness day or month because, every day, they are all too aware of Autism. I can't disagree with this. Autism and the other myriad of diseases in my sweet young man affect virtually every part of my family's life. I literally cannot think of one aspect of our life that is not affected. This is not necessarily a negative thing, it is just our "normal". 

When Aulton and I are out and about, I love questions. Usually, it's a curious kid that might ask why he has glasses or what was on his legs. I hate stares. I think this is one thing that people can be aware of; if you are curious, ask a question. It's pretty simple.

One thing that is not simple is what is happening in the Aulton's mind when we are in a store. We try to go to Target because they have Caroline's Carts. These make shopping so much easier. So, automatically this draws attention. Aulton has quite a bit of anxiety and he is shy. Staring is not helpful. Usually, he is covering up his ears because he hears every conversation, a sneeze, laughter, the doors opening and closing, carts banging against each other, shoes clicking on the hard floor, hangers sliding along the rods, the crinkle of paper when you check a tag, noisy toys and blaring TVs in electronics. He is blocking out all the sounds that his mind won't automatically do, like a typical brain. This same thing happens with all his other senses. His eyes have a hard time focusing, he has a heightened sense of smell, his taste buds are certainly affected and he seeks the softness you can find in the bedding section. I want people to be aware of all of that. I also want people to be aware of Autism statistics .... 1 in 68. 

Whether people want to accept Autism or not, it's being diagnosed and families are living with it. These children are growing up in a society that must accept them because eventually these children will grow up and they all have valuable things to contribute. 

So, while it's important to be aware of statistics and the sensory systems involved with Autism, I think it's more important to be aware of what we can learn from people with Autism.

The first thing Aulton ever taught me was love. I loved him before he was even born. I constantly dreamed about becoming a mother. Aulton, though, has taught me a type of unconditional love I don't think I could have witnessed any other way. He loves me when I put needles in him, he loves me when I pull things out of his nose and leave him in pain and bleeding, he loves me when I take him to 4 appointments in one day, he loves me when I can't understand what he needs, he loves me when I am trying to get him to eat something he doesn't want to. He even loves me when I am scolding him about something he probably doesn't even have control over. Besides Jesus Christ, Aulton is the best example of unconditional love I will ever find.

Aulton has taught me about courage. Before he got his back brace, we talked about it quite a lot and he cried quite a bit. I always did my very best to comfort him and I shed tears away from him. The first time I saw the brace, I burst into tears. I cried, while they fitted him in it, I cried most of the appointment. The orthotist left to give Aulton some time in the brace and I was still crying. Aulton looked at me with no tears or anger and seemed to convey to me, "Mom, I've got this. Please stop crying." He handles everything with so much patience and that is another thing I have learned from him.

I have to be patient with him. He does things in his own time and since he is always trying, I certainly can't be disappointed or upset. I can cheer him on and be optimistic, but most of all I can wait-patiently. I have learned that with trials, it's best if I try to patiently endure them. Many of them are related to the struggles Aulton has, but ultimately they are his trials. If he is patiently enduring these things that are happening to him, I certainly can do the same.

Aulton has taught me compassion. I feel so much empathy and compassion for those struggling with the side effects of an Autism diagnosis. I can't even imagine what daily life is like and how so many people I know, who have Autism, love life. I can think of many children, with Autism and other diseases, who inspire me. I wish, like Lyla says, that I could take something away from Aulton so he wouldn't have to deal with so much. It obvious he has a sister who is the most compassionate and caring person I know. She mostly came that way, but she definitely learned some of it from loving Aulton.

Aulton is one of the most determined individuals. I think there are people who would go through the things he is going through, who would give up. He will not give up. Everyday, as he struggles to make his muscles move to get out of bed, he is eager to start his day. He usually will find hard things in his day, but he is determined to conquer anything in his path.

Aulton has taught me how to look at things from a different perspective. The things Aulton teaches me during RPM are nothing short of amazing. His unique words show me how to look at things from all angles. I still can't predict anything he will spell and I get so excited to see what he is going to tell me each day.

I have learned a lot about feelings from people with Autism. It is hard for Aulton to display emotions.... this is not to be confused with whether he has emotions or not. His brain can not always control his body. I think we encounter many people, every day, who are hiding deep emotions. Even though they are intentionally keeping their emotions in check, I have found it's best to assume that they are dealing with things I know nothing about. That's how I look at Aulton and all of his friends. Aulton has a friend, with Autism, who sometimes takes things without wanting to. He took a Dorito from Elodie, who got mad. The boy got very agitated and upset. His mom asked him to spell. He spelled I'M SORRY. Then, he calmed down. I will never be mad at this extraordinary teenager and definitely am not upset that he took a chip, but he felt so badly about it that it extracted strong reactions in him. I believe all people have complex and strong emotions, even (and especially) people with Autism.

Many children with Autism are teaching their parents similar things. This is what I want most to say during this month, where there is a lot of focus on Autism. It's good and noble to try and be aware of facts about Autism. It's more important to be AWARE of what we can learn from people who courageously deal with this disease every single day. Love. Courage. Patience. Compassion. Determination. Understanding. Always. 

Rapid Prompting Method = Hope

When I get a letter or card in the mail, I actually get pretty excited. It rarely occurs, one might say it's a dying art. For Aulton, writing cards is an art. He has the most interesting perspective and I love to see what he is going to say through RPM. I usually have him write cards to people in our family for their birthdays. On Mike's birthday, in November, he told me he wanted to talk to his dad about a LESSON. I asked him if he wanted to use a school lesson or an RPM lesson. He said he wanted an RPM lesson, so I asked what word he wanted to use to go with an RPM lesson and he spelled HOPE. I couldn't agree with my incredible son more. 

RPM absolutely is hope. It's hope for finding out things about Aulton's past, it's hope for the present day where we are learning so much about him and it's hope for complete communication in the future. But, RPM is not just a communication method. Aulton's confidence and assertiveness has increased. He follows complex directions with much more ease and less direction in the past. He is clearer about his opinions and has a greater tolerance for other shows, for reading and for conversation. RPM is helping Aulton with independence, which is hugely important for 12-year-old boy.

As I have explained RPM to various people over the course of the past 14 months, people are usually quite interested, especially when I explain that Aulton must have taught himself to read. He spells words independently and his thoughts are sometimes what you might expect, but more often than not, they are a complete surprise. Everyday, I'm so excited to see what he will spell because it's always interesting and gives me a glimpse into his mind, that I wouldn't otherwise know. I have decided, based on others' opinions to give you all a glimpse into his mind. He has given me permission to do this. I already text about his lesson to family members, who have said they would like to know how it's going. 

I think I'm going to list the lessons, with words that Aulton has spelled (which are in caps) and if I say he said something or told me something, that means that we gave him paper choices or he indicated his thoughts in another way. I hope to post pretty regularly, so if anyone is inclined or interested, you can log on and find out what Aulton is learning and telling us.

We started home school on January 9th. I do the first lesson of the day and his aide, Courtney does the other two. Sometimes, Aulton is not up to all 3, but we all do our best. The following is an account of our lessons since we started, it is a lot. But, future posts about RPM will not be as long. 

• Cloud formations and nimbus clouds. We talked about how people often look for shapes in clouds and I asked if he had ever done that. He said yes and I asked what he had seen - HOVER TURTLE
• Picasso and Cubism. I asked his opinion on these paintings - SISSY
• I read a story to him called "Yummers" about a pig and a turtle. The pig eats a ton of food and wonders why she doesn't feel good. He said he liked the book and I asked for his thoughts- WEIGHT IS MORE STORE BOUGHT (I think he was saying we determine our weight by what we buy at the store. 
• Israel. Israel's main exports are flowers, avocados and oranges. I asked for him to spell anything having to do with orange - RIPE
• A poem called "The Lamb". Its about a lamb, a boy and Jesus. At the end it talks about blessings. I asked Aulton what he was most thankful for during a Thanksgiving lesson - BODY. For this lesson, I said he could spell anything about blessings - THROUGH US (obviously, he means people are blessed through our actions)
• Martin Luther King and Equality. I asked what people dream of - BREATHE AND REST. I also asked him to "vote" on his favorite season. It is Spring,
• Dead Sea. Word associated with swimming - SLOW. (I don't think of this negatively at all. I think he means swimming is relaxing). 
• Trucks that haul lumber to build homes. Word associated with tree - LIMB
• Pyramids. I told him how amazing they were a bunch of time. He spelled - JUST ORDINARY (he's a little jokester)
• Palestine. He did get mad when I talked about terrorists. He asked me to QUIT. So, I did.
• Hands. He spelled CLOSE.
• NFL Protests - he said NOT RIGHT. I don't agree with him, but I love that he has his own opinion.
• Trucks - I asked what color of truck he would like. I thought I would be helpful by pointing out all the common colors and the letters they start with. So, he goes and spells TAN.
• Giant Snakes - We talked about their eyesight and asked what he likes to look at - LEMON. Which is funny, because it was the exact think I was thinking. He and I have a connection.
• Asteroids - We talked about how they collide in space, causing meteors. Something that can crash - ROCKS.
• First 5 planets - Word associated with the Sun - TIME
• Australia Day - The Outback occupies 2/3 of the country and is pretty deserted - EMPTY
• Last 4 planets - thought about space - LOTS
• Semi-trucks - what could you haul - HORSE
• RPM Workshop stuff- words associated with wealth - CHARGE, CHAT. What do wealthy people do - GAMES. "A wealthy man charged...ME" Something that floats- PET, Air- HABITAT, capitalize - TAKE ADVANTAGE, Cast- THROW, Muscles - MOM, DAD, HULK. At the end of these lessons, she wrote, "Dear World, I am ______" HOME AT LAST. I think he was saying he is feeling more comfortable in this world, where people know he is smart.
• My Grandma, for her 90th birthday - Why would someone be mean? - JEALOUS, What can you buy with money? NINE FAT RHODES ROLLS, What advice would you share with people? -FRUGAL
• Olympic origin - Sport he likes - A SHUTOUT, Sport he would like to do - THE BIKE, 
• Flatbed Trucks - what can a flatbed truck carry - PLANE, word for bus - SO SLOW
• Synonyms and antonyms-  I asked him to write a pair of either one. He wanted antonyms and spelled TRY and FAIL. Then, I asked what is something people try to do, but fail at. - ARGUE
• Astronomy - he would like to do more MATH, He would most like to look at SATURN through a telescope, if he could make a constellation, he would make a MONKEY.
• Ancient Olympics - a country - SPAIN, team sport he would enjoy wathcing - BASKETBALL
• Winter Sports - Ice- POLAR, Mountain - PEAK, Nursery -FARM, Something with a cycle - DAY
• Opening Ceremonies and Olympic symbols - torch - RUN, Peace - SAVE A BODY
• Valentine's Day - Love- NASTY, Valentine's Day is A KEY TO LOVE,
• Hurricanes - WATER
• Valentine's Day card to Lyla- he chose her and said she is JOYFUL, he would like to have a SNACK with her, he hoped she had a "FUN" Valentine's day and "IT SHOULD MATTER" that he is her brother.
• Hurricane Katrina - a flood might destroy FOND FEELINGS
• Rain- SNORE
• A letter to a boy willing to be his pen-pal - TRUSTWORTHY  for Mike, what he wanted to tell him about - RAIN, He also spelled BOND.
• Moon- Something large - BLOB, Favorite thing to see in the night sky - STORM
• Letter to his friend Gianna (for Valentine's Day) - he said their friendship was NOBLE and that she's SO SMILEY
• Heart Shape - BABY, something with leaves - LILY, something he loves- LYLA
• 6th and final  lesson on trucks - TOO MUCH
• President's Day- Aulton would GO REST if he had a day off, a president is an OWNER
• Music - Aulton's music teacher asked me to find out what kind of music he likes. We listened to lots of bands and it's pretty drum-centric, he likes songs with the GUITAR, he commented on a few songs saying NATURAL, TOO LOFTY and SNAP
• Cowboys- a state- ARIZONA, cowboys are NOT LAZY, general thought about cowboys- BORED
• Rodeos- He would like to visit THE WEST and he associates PEOPLE with the word rodeo.
• Music- we talked about the different lengths of notes and I asked what else has a different lenth - THROAT, musical notes make him think of the word LYRIC
• Shakespeare- Aulton thinks an OPAL is round like the Globe Theater and that he is TOO SY (notShakespeare)
• Immune System and infusions- sick - TEARS and TIRED, word associated with infusions -PAIN
• The Birthday Song - What he thought about his birthday, he joked that he HAD NO TOYS, When asked what he would like to own, he spelled NEED HORSE
• Tornadoes - he spelled TUNNEL to go along with funnel and when asked about tornadoes - OPINION IS QUANTITY - he could have been referring to the number of tornadoes, the number of deaths or something else about tornadoes or he could have been talking about the number of opinions he shares.

The 11th hour....er, year

Aulton's life is full of challenges, yet he has an army of support and, medically, 2017 was a good year for him.

Two amazing things happened to Aulton this year and I don't even know how to order them, as both are life changing. 

The easiest to explain is the Make A Wish trip he was granted in January. Our family went to Walt Disney World, where we had the trip of a lifetime. The trip was magical and spectacular. There will never be a way to recreate the trip and it has left us with many happy memories. It was the best trip and thing that our family has ever done together. Aulton said (through RPM), that he felt "honored" to go on the trip. I would not have chosen that word, but yet Aulton knew the perfect way to explain it. 

This leads to the next incredible thing that happened in 2017. Aulton was introduced to Rapid Prompting Method. We started using this method of learning in January. Since that time, I have consistently been teaching Aulton age-appropriate lessons on every topic imaginable. At the end of the lesson, I ask him to spell a word that goes with our topic. He had a very emotional, difficult month in December, so he hasn't been writing very personal things. but here are some of the things I have asked and his response (he hardly ever spells the words I would use):

• How would you describe water - STUNNING
• What word goes with flower - BLOOM
• How would you describe grandpa Elmer -LOYAL
• How would you describe grandma Tammy - POSITIVE
• What is your favorite thing about dad - BOY (I asked him if that meant that he was happy to have another boy in the family. He answered in the affirmative. I thought it was awfully clever and accurate. There are 3 girls in our family and our 3 pets are female. It was the perfect answer). He also said his dad is TOUGH.
• Mike reported that during a lesson about my birthday, Aulton spelled that I was STRONG
• He "wrote" a talk about the Holy Ghost and told me he has a TESTIMONY and that the Holy Ghost has a SUBTLE voice
• When asked about vaccines and their use over time he spelled TABOO (which I thought was genius)
• The word he associates with jewels is EMERALD
• The word he used to go with metal was GOLD
• During a lesson about leaves changing colors, I asked about his thought on leaves. He spelled NOT HOT MUST STOP. Aulton was quite sick this day and he was telling me he wasn't "feeling too hot" and he couldn't answer any more questions. I love that he can communicate that to me.
• When asked about what is made of atoms, he spelled GUN, which lead to three of his Christmas presents. He plays with the toy guns when he thinks we are not looking.
• When I asked about what he would wish for on his birthday he spelled PARTY
• We had a party and he got the SNO CONES he wanted and we invited all the people he wanted to.
• I most recently did a lesson about the New Year and since I'm not asking personal questions at the moment, I asked him what word other people associate with resolutions his response TO BE THIN. Obviously, he's absorbing the words that are being used around him.
• At Thanksgiving, I asked what he is most thankful for and he spelled BODY. That answer is pretty incredible.

His mind and perspective are unique. I love RPM. I love getting to know my son. He has made immense progress during the last year because of it and many people view him differently. I used to worry about Aulton being in "his own world". I discovered that Aulton is seeing things in a different way. The clinician gave this example: When we go to a birthday party, our senses are able to process everything. We see the decorations, we can pick out sounds (like singing), we can smell the cake, we can taste ice cream and we can touch presents to give them to the recipient. These occur naturally. For a person with Austim, like Aulton, senses are processed in a different way, which may lead one to think he isn't present. He is an auditory learner and when he goes to a birthday party, he may only be able to focus on one voice. Another person with Autism may love to look at the fan. Another may love the feeling of wrapping paper. So, Aulton is not in his own world, he's in our world, with a brain that is wired differently, which gives him a different experience and perspective. 

RPM should do wonderful things for Aulton in terms of communication and understanding, but even if he only progressed to this point, I would be happy. It's almost like I just met him. I have learned more about this handsome young man in the last year than I did in the previous 11. He is much more aware and present in many aspects of his life, including his feelings.

The worst thing that happened to Aulton was losing his friend Cicily. When I tell people about their relationship, I describe her as Aulton's best friend. But, in reality, I think she is his soul mate. These two have a great connection where they are able to communicate spirit to spirit. Cicily was always a bright spot in our lives. Aulton has let me know that she is around sometimes. I have no reason to doubt that. When Cicily died, Aulton was very angry and then, he was heart broken. He sobbed every time I talked about her and he would get so mad- completely distraught - when her family would come to our house because when they left, he would realize Cicily really wasn't coming. I have never seen an innocent heart break like this and it was such a hard thing for us to watch. He did his grieving and now we can talk about her and sing her favorite songs and it makes him happy. We miss her, but I believe these two will never be separated. 

The other challenges he faced during the year, pale in comparison to Cicily's death. However, they are worth a mention. Aulton had surgery in the Fall to replace the plastic ear tubes that were causing chronic infections. His ears were draining puss and blood for months. The doctor replaced these tubes with blue titanium and the metal seems to be causing no trouble. We are thankful for Dr. Parry and his willingness to think outside of the box and help Aulton have a more comfortable life. 

Aulton struggled a bit to walk in the beginning of the year, as he was still recovering from surgery. He is doing well now and his gait is better than it was before he had the surgery.

Aulton has always enjoyed school, but his past semester was difficult. His amazing teacher and aide both left the school. He had trouble adjusting, despite having a great new aide and a new teacher, who was really trying. Some of the students, in his class, have behaviors that are hard for Aulton to handle. He was stressed out for most of November and December, which is just one of the reasons that I chose to homeschool him. He never cried or got upset about going to school. He usually doesn't have that reaction to most things. He is very calm. There were a handful of times when he arrived at school, in the morning, and started crying. I think homeschool is going to be life changing!

Aulton really struggled in December. We went to Salt Lake for some testing. The testing was quite grueling and it was very cold. Aulton does not like cold weather and since his muscles work the same way mine "don't", he was probably in some pain. In cold weather, my myotonia (cramping) get worse and the pain in my leg muscles increase. We found out, at this visit, that Aulton has developed myotonia. I didn't expect it to happen for a few years, so this news was upsetting. 

As the year progressed, I noticed that Aulton's scoliosis was also getting worse. At his appointment, also in December, the curvature of his spine had increased significantly. In two days, we are going to Phoenix to the orthotist who made Aulton's foot braces, to be fitted for a back brace. Today, I gave Aulton a lesson about scoliosis and back braces. He cried most of the time and even though you are not supposed to ask emotional questions, I asked him if he was "scared", "worried" or "sad". He said he is worried. My heart breaks that he has another thing to deal with. He is such a rock star, though. I reminded him that a brace may prevent a very painful surgery.  I also told him that we can build up his tolerance. He has to work up to wearing it 20 hours/day. I'm praying that it will prevent the surgery and that Aulton will handle a very big change as easily as possible.

Aulton struggled with illness most of December, which is uncommon now that he gets infusions. He hasn't been this sick for years. He also had some viruses, throughout the year, that left him weak and sick, but not significant enough for hospitalization. Sometimes Aulton likes his birthday and sometimes he doesn't. This year it was just a little too much, so we made the following week more relaxing and fun and he is back to his normal, happy self (minus his worries about the brace). 

The best part of his birthday, hands down, were the cards! He received over 50. We talked about who sent them and I read every single one. We appreciate all of those who took the time out to send him a card. They are on our door, next to the Christmas cards, as a reminder that Aulton has a whole lot of people who think a whole lot of him. Thank you!!! 

Overall, Aulton had a good year. I'm very proud of him. He works hard, he takes everything in stride. I didn't mention the challenges that are a necessary part of his everyday, but he has more that most. He is smart, funny, kind and amazing. I hope he has the best year ever!