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! 

RPM

Rapid Prompting Method.... and life

I have wanted blog about this topic for some time, but I am busy. I clean a lot. I'm Vice President of the PTA. I have things pulling me in different directions all the time.
During the school year, Elodie and I stay home during the day. She and I run errands, go to storytime at the library, have playdates and go to music classes.  She hasn't napped, regularly, since she was 16 months old. There were 2 days last year that she napped, while my big kids were at school.
Lyla is also a busy social butterfly. She does tap, sewing, Miler's Club, Odyssey of the Mind and piano.
Add Aulton to the mix and I live in my car. He still does OT, PT, speech and hippotherapy every week. And lots of doctor appointments. I have moved some of his specialists to Tucson, which is helping.

PCP - Tucson
Neuro - Phoenix
Sleep Neuro - Phoenix
ENT - Tucson
Endo - Tucson
Opthalmologist - ? (guess I should figure it out)
cardiologist- Phoenix
Immunologist - Phoenix
GI- Phoenix
dentist - Tucson, looking for a new one in Tucson
Pulmonologist - Phoenix
Orthopedic - Tucson

I'm having a difficult time leaving the doctors in Phoenix. Most of them have worked with him since he was a baby. They know me, they know about my family, I know about their families, we can have friendly banter and most of all they KNOW Aulton. I don't even have to use his last name. He's just Aulton. They know he doesn't follow the rules, they know he is complex, they know that there aren't usually easy answers, but they work hard to help me figure it out.

There are some amazing doctors in both places and there are some amazing people here. I'm so incredibly happy with his therapists. We are doing different things in therapy and I think the shift has really helped him. He is making tremendous progress and I owe much of this to my friend, Amy Greiner.

Amy is probably the first person I actually sat down and talked to who has a special needs child in Tucson. I saw her, on Facebook, discussing this communication system, Rapid Prompting Method (RPM), she was using with her son. She was so passionate about it and I started asking her questions, I read a book she recommended. If you ever want a glimpse into the mind of a teen with Autism, I can't say enough good things about "Ido in Autismland". Read it and your mind will be opened, like mine was. After reading the book, I decided to meet Amy and learn more. She agreed. We had a good talk, but I didn't think RPM would work for Aulton.

There are only a handful of instructors that teach this method. Amy arranged for Lanae to come to Tucson and invited Aulton and I to do a few sessions with her. It was amazing! I told her from the start, he is cognitively delayed, he has several diagnoses, etc. She just dived right in and Aulton was answering questions that I didn't have any idea he knew, he was spelling words, using a stencil letterboard. This is absolutely incredible!

I started writing lessons and doing RPM nearly every day. This is how it works. You create a lesson on any topic.... that is age appropriate. I thought I could just write lessons about Dora and Diego. Nope. I started with lessons about things he's really interested in; water, horses, hair. You say a sentence. For example, today I will do a lesson on "Kites".  It starts like this, "To fly a kite, you have to have the right kind of kite and the right kind of weather."

Then, you ask questions about the sentence(s) you just read. So for this lesson I would start asking,
1. What are we talking about today?
2. What is a kite?
3. What do you need to fly a kite, besides the right kind of kite?

I give him paper choices and he points to the correct answer. For example, on the first question I would say something like "Plants, P-L-A-N-T-S" or "kites, K-I-T-E-S". I think this may be a reason God made me a good speller. You spell everything. He points to the word(s) he thinks it is.

After that, I move on to more details about the topic, saying more statements and making him spell words. During those questions, I will have him spell KITE and WEATHER.

My lessons are short because we have only been doing this since January. This lesson is 26 questions long. I have been making a log of the lessons and his scores. He normally gets around 86 percent of the questions right. I didn't explain to him what a kite is, in the first sentence, because I have figured out that there are already things he knows, without me explaining. I still ask, to verify.

I'm learning all sorts of things about my 11-year-old. I now know that his favorite color is orange, I know that his favorite zoo animal is a monkey, I know he likes looking at the cactus on the hill behind us, I know he hates Valentine's Day. I love learning these things. I have explained this method to a few people. Many are skeptical, but if you know Aulton, you are a believer. One of my relatives, who is not as familiar with Aulton, said that the things I was learning are trivial. They are not! I think she may forget that she can ask any of her kids what their favorite color is, she can ask what animal they most want to see at the zoo. These are simple questions. Elodie's favorite color is green and she loves koalas. Lyla's favorite color is red and she loves giraffes and she recently discovered hedgehogs and squirrel monkeys.

I cannot stress how much I love knowing these things about Aulton and I learn more all the time. When Aulton did some testing, in Salt Lake, in February, we met with Lanae again. She lives in Draper. She told me I need to start inserting more personal questions into lessons. Aulton is eager to answer them. I ask him questions about himself all the time now. Today, I will ask him if he would like to fly a kite. If he answers "NO", which I am predicting, I will ask him if he wants to go to the park with the girls and watch Lyla fly her kite. He might say "YES".

There are several reasons to do RPM, besides getting to know a person better. One primary purpose is to help your child have open communication. Many children and adults using this method, are spelling complete sentences on letter boards and having a conversation. This translates to being able to put your words onto an Ipad or computer. It also helps with motor skills. It takes a person with Autism a ton of motor planning to do relatively simple tasks. It also requires a lot of thought and sensory involvement . There are many things I do with RPM lessons to help with this, but they are small changes that are hard to explain. Everything has to be done in a very precise, super consistent way for it to be accurate. Lanae is coming again, in July, and I can't wait to learn more and make my process better.

Since starting RPM, Aulton has an increased body awareness. He knows that I know he understands me. This is huge. I have started talking to him like a regular 11-year-old. I was doing that anyway, but I often talked over him. I don't say anything even slightly negative about him, when he is within earshot.

These are some of the changes I'm noticing:

• He tried 5 new foods in one day, without gagging and with hardly any resistance.
• Something that is not supposed to happen during puberty did
• He responds to simple requests. Like stopping for a picture, or turning around to hug someone
• He is doing better in every therapy. Listening to directions and remaining compliant (as usual)
• He's interacting a bit more with his sisters
• I still read Dora, but we have almost finished with "The Diary of a Wimpy Kid"
• He is happier
• He uses more eye contact
• He is more engaged with people he knows
• He is more verbal. Last week, during speech he said (verbalized) "I LOVE YOU" Think about w
• hat that means, every time your child says that to you. I know Aulton loves me, but to hear him say it. Indescribable. He also says "done" very consistently, "hug" and many other words. His language skills are improving. The first week we started, he said three words. This is huge!
• He walks with more purpose. Today, he climbed the stairs on the bus with no help from anyone. Last year, he was using his wheelchair to get onto the bus. 
• He has more confidence
• He's made serious progress with toileting

This is not to say there aren't struggles. I mean, Trump is still president, right?!  Aulton is getting bigger and bigger. He weighs 108 lbs now and is eye level with my nose. He starting to look like a young man. We have to shave his mustache and put deodorant on him. He still requires a lot of care, but I am very happy. Before his surgery in October, I started exercising so I would be strong enough to carry him. I liked the way it made me feel, so I continued to do it.

My kids are wonderful, incredible blessings in my life. RPM is a blessing to us. Aulton, Lyla and Elodie are super well-behaved and so much fun. Summers are busy and sometimes difficult, because I get very tired. However, I have looked forward to this summer for a couple of months. I love spending time with my kids. All 3 of them teach me things I never would know, they require me to think outside of the box and with positivity. I have felt a little guilty that things are going so well, when I see friends struggling, but I am working on enjoying the reprieve and treasuring the healthy moments with my children. They don't last and I never know when they will end. Aulton will have another surgery in a few months and he could feel poorly for a bit or he could bounce right back. The most important thing is that I have friends who are happy for us, when things are going well because they travel this road, in Holland, with me. I also have a family that is super supportive of all I do and right now that means that I'm trying to be the very best mom that I can be.

January 11 - Day 132
Drug Trial Completion

Eleven is my lucky number and January 11th was definitely a good day. There were some really positive things that happened during the final day and I'm really happy and relieved to have completed it.

This visit was also a one day visit. I drove to Phoenix on Sunday and spent the afternoon visiting with a friend and holding her new baby. There's nothing in this world much better than a fresh-from-Heaven-baby. Thanks Whit!  I went to dinner with one of my closest friends, Suzanne, who always makes me laugh. We spent 2 1/2 hours catching up and it did my soul a lot of good. I spent the night at the home of the world's best parents. I woke up at 5, got ready, went to Salt Lake, did all the testing, got back on the plane, and drove back to Tucson.

The road between Phoenix and Tucson is a little desolate and there are not too many cars in the evening. The dark, quiet drive gave me quite a bit of time for retrospection. I found myself crying, due in part to sheer exhaustion and in part to thinking about this study and what it means to my family.

I thought about that saying, "I can do hard things."

This statement means something different to everyone. I see posts on Facebook about this all the time. Sometimes it drives me crazy when someone gets a lousy haircut or their kids get shots and they use this statement as an explanation of their feelings. However, that is neither here nor there and it doesn't make their hard things less legitimate than my hard things. Regardless, I was thinking only in terms of the study, which is MY hard thing most recently.

Then, however, my thoughts drifted to hard things I do daily. I change a 10-year-old's diaper every day, I lift that 4 foot, 6 inch boy several times every day (off of his bean bag, into his chair at the table, out of the bathtub, etc.), I help all 80 pounds of him in and out of the car several times a day, I take him to lots of appointments for therapy and to the doctor every week. During those appointments I watch him struggle. When I see him trying so hard to say a word or complete a task and he is frustrated, my heart breaks a little, but I keep smiling and encouraging him. I decipher what his body language, sounds and, sometimes, tears mean every day because he can't tell me. I put needles in him every week. Nothing comes easy to Aulton. Nothing. He needs help getting dressed, eating and turning on the TV. BUT, he is happy despite the struggles. He is the one who uses the "hug" button on his augmentative communication device more than any other button. His love is unwavering, unconditional and the purest I have ever encountered. His love for me is fierce and it is strong.

My love for him is fierce and it is strong. I know mothers usually feel this way for their children, but hopefully they see a lot of triumph that makes hard days easier. I see Lyla doing things that come so easily. She is good at almost everything. I see things come naturally with Elodie. I love to hear the emerging language and watch as she discovers and embraces everything in her life.  I rejoice in every success my children experience. Aulton's are so different. He works so hard for everything. Everything.

I'm not using these experiences to make myself feel proud or even to make anyone feel bad for me. I want to use them to help others understand what a drug could do for Aulton's life.

I want him to struggle less. I want to see fewer doctors and I want him to gain more independence. You can bet the current amount of the Powerball that if there is something I can do to help him, I'm going to do it. And, I would make that choice every. single. time.

This drug is the solution! This trial is my opportunity to help. It is essentially the key to making Aulton's life easier, to watch him struggle less.

When Aulton was initially diagnosed with Myotonic Dystrophy, I heard a lot of people throwing around the word "bittersweet." They said, it was good that I had the diagnosis because I could anticipate what lie ahead, albeit a little sad because the disease was confirmed.

Bittersweet is not a word I chose to use in that situation. I tried, but I was 25. I was shattered and I needed to grieve in my own way on my own terms. It was bitter and I was, for a time, too.

Aulton was almost a year old when he was diagnosed. I lost the boy I thought I was going to have. People, even doctors, had been telling me he was going to catch up, his delivery was rough, maybe his due date had been wrong. I'm not sure if my heart always guessed the truth, but I clung onto those thoughts that things would be normal and I didn't let go until that phone call.  Of course, I went through the natural grieving process, which is a topic for another post, but it was really, really difficult. I'm eternally grateful for the amazing people who stuck with me during that time and they definitely know who they are. Although they are few in number, they mean the world to me.

I rarely use the word bittersweet because of this situation. When someone uses this word,  I always thing that whatever a person is referring to has equal parts of bitter and sweet.

Fortunately, I don't consider myself bitter anymore and Aulton's life is mostly filled with sweet. The kid is practically made of sugar. The trial, though, is something I would categorize as bittersweet. I'm equally happy and sad it is over and is progressing. I am so incredibly grateful that I could do something, but am also sad I can't do more.

Bitter Parts:

Me and Susan

• Moving. Moving and participating in a drug trial do not mix. 
• Pneumonia. Pneumonia is tough. I did two 24 hours blood draws. It is tough. Dealing with both pneumonia and giving bags of blood simultaneously is difficult.
• Planes (and the people on them). On Monday, I sat next to a man who ate sunflower seeds and spit the shells into a plastic cup for an hour and 11 minutes. Sunflower seeds are not a plane snack. Early in the study, I sat next to two "nice" guys, who eventually offered to drive me to my hotel. I'm not an idiot. 
• Bruises. I've still got four on my mid-section, one large and one small on each thigh and bruises on my arms. I showed the ones on my arms to my friend, who said it looked like Mike was gripping my arms and shaking me. Lovely. They will look even lovelier when swimsuit and short sleeve shirt weather arrive.
• Fatigue.  I intentionally chose travel times that would require me to be gone from my family as little as possible, while still meeting the time constraints of the study. In the beginning, this meant I usually arrived in Salt Lake around 11 pm, so that I could be up early and make it to the hospital on time, on Monday. The last three visits, I have done all my traveling on Monday. It's tiring.
• The Study People. I have a love/hate relationship with the people who hurt me. The nurses, Dr. Nick Johnson, the PTs and the study coordinator, Susan, who doesn't hurt me, but makes me fill out lots and lots of papers
  
  

  

  Incredible Nurses: Kathleen, Michelle, and Tami

  
  

The sweet parts:

• Moving. The move allowed my husband to stay home with our children.
• Pneumonia. Yeah, that one is still really hard, but I was at a hospital round the clock for most of my visit. There's not really a better place to be when you have a severe, active case of pneumonia.
• Planes (and the people on them). Sometimes I met really great, kind people. Like the young guy who was traveling to San Francisco for a conference on autoimmune diseases. When he pulled out his bag of cough drops and told me he was sick, he didn't bat an eye when I put on a face mask and told him I have Lupus. I also met a sweet woman who had just divorced her husband of 12 years. I just listened.
• Bruises. Proof that I have something that could cure Myotonic Dystrophy running through my body.
• Fatigue. Like I mentioned, I missed as little of my family as possible. I still volunteered at school. I still did parent teacher conferences. I took Aulton to therapy and the doctor. I played with my kids. I read to them. I still moved my family to Tucson (and did everything that goes along with that). I still celebrated the holiday with family. I didn't miss too much. 
• The Study People. They hurt me because they care about this disease and want the trial to be successful.

Bittersweet.

November 18- Day 72

I only have a few minutes before I board my plane.

Today was nearly identical to my last visit except I did not have a muscle biopsy. I saw a new doctor, Dr. Butterfield, today for the EMG and there was a change during that test. There was also a positive change during physical therapy today. I can't go into much detail about either of the changes, but they are good.

I'm definitely a full-fledged Arizona girl. I saw some snow flurries today, which almost made freezing worth it.

I'm excited that I only have to come to Salt Lake City for this test one more time. I am ready to return to Tucson and finish getting my house ready. I don't have many spare moments at home. I have almost completed the unpacking. I spend hours on the phone getting Aulton settled with doctors, therapies and primarily his state services.

Today has been really tiring and it's not a great way to head into the week. But, on the positive side I'm not coming back until January, so I can really focus on the kids, our new home and getting ready for the holidays.

If anyone is still reading this, I won't report anything until my next visit, so I hope you all have a Happy Thanksgiving (my American friends), Merry Christmas or a Happy Hannukah and a very Happy New Year to all!!

Thank you for all the support! Love, Nikki

October 19 - Day 50

"Where is my bag of needles?" 

This quirky statement by Dr. Johnson, today, basically sums up my day at the study. I wish I could report the findings from the EMG (the test where he inserts a needle into my calf muscle 20 times to measure the electricity and mytonia in the muscle). I can't reveal anything about that or anything that happened during the 2 hours of PT I did this morning. However, I can tell you that the muscle biopsy still hurt, even if the doctor didn't hit a nerve. 

I'm thankful that Susan, the study coordinator, tried to distract me by talking about my kids' Halloween costumes and my new house in Tucson and let me squeeze her hand during the particularly painful parts of the biopsy.

Day 50-  it's a huge milestone in this study. I've been to Salt Lake City 9 times now. I have received either dosing of a drug (or placebo) that's been coursing through my veins for 50 days and has left significant bruises on my stomach and thighs. 

My flight left at 7:30 this morning and I'm back at the airport, waiting to return home. Today, I didn't receive any injections. I have to come two more times, once in November and once in January. I'm happy to be able to have my life regain some normalcy. 

Since I'm done receiving dosing, I was able to give some feedback on the study. I have a few recommendations for the future, but I really am not allowed to mention those either because of the impact those suggestions can have on future studies. 

I wish I had more to report. I am eternally grateful to my husband and my parents for taking care of those kiddos for me. I could not have done this without their help and if anyone, who is affected by this study, is reading this, I hope they say a quick prayer of gratitude to those amazing people, who have made it possible for me to participate in this trial.

I'm going to go home and move to Tucson in 4 days. My "to do" list is getting done. The movers will still arrive tomorrow, they will still move us to Tucson on Wednesday, the cleaners will still come Thursday and everything will work out. I will hopefully report more in a month. 

By the way, Salt Lake City is pretty easy on the eyes on this colorful, crisp Autumn day. :)

October 5 - Day 36 - Dosing and 24 hour blood draw

Bravery and Strength

People keep telling me I'm brave and strong and while I really appreciate the compliments, they are simply not true. Aulton is brave, Evan is brave, Steve is brave, Dallen is brave, Jay is brave, Baby Mark will be brave and Kayla is brave. So are the many other children fighting this disease every day.

I can only really speak for Aulton, but he is one amazing kid. The stuff he does, with a smile on his face, astounds me and is a gift. If he can go through everything he does and continue to be happy, doing this study is something small that I can give to him.

I have not been looking forward to today at all. It is the 24-hour blood draw. So far, my blood has been taken 8 times. Before I leave, tomorrow, it will be taken another 3 times. Sometimes it's just 3 tubes, sometimes it's 8.  My blood pressure has been dangerously low and all these draws do not help. Last week, it was 87/52. This morning it was 89/60. The nurses always think there is a mistake. It is never a mistake. I will have vitals done, again, in the morning and it will be interesting to see how much affect the draws had on my blood pressure today.

My handy-dandy IV (Yes, it hurts).

Today is the last day I actually get any injection. I got this one in my right leg and it still hurts (8 hours after the fact). I only am coming to SLC three more times; once more in October, once in November and the final time in January. I heard, this morning, the new group has to do 6 extra weeks. The purpose of this phase is really to determine how long the drug stays in the body and how high of a dose is tolerable.

I was really healthy while we went to San Diego,

3 of my favorite brave and strong ones

but last night at the airport, I started to feel really sick. I just wanted to sit down and have some water. I got really dizzy and it felt like I was walking in a fog. After I got some water, sat down and ate some fruit I felt a lot better.

I didn't get much sleep last night and my eyes are blood shot and I woke up without a voice. It has slowly returned, but these last 3 visits would have been so much easier had I been completely healthy, but that is not what a body with lupus and myotonic dystrophy does.

While things are not perfect, I want to get a little bit more into some of my feelings about this study and how I think God is involved. If you are bothered by spiritual discussion, now would be a good time to stop reading.

When Mike and I decided that this was something I should do. We didn't know how we were going to make it work, It helped that my mom doesn't work on Mondays and that my dad is Superman and helps with my kids all the time, but.....it's a lot of traveling. It's a lot of time to be away from my kids. Mike just said, "I don't know how we will make it work, but we will."

So, I signed up for the trial without having an idea who would take care of my kids, but feeling the calming presence of the Spirit, letting me know they would be taken care of.

On the very first day of the study, as I was driving around looking for a drugstore because I had forgotten a comb and chapstick, Mike called me. He had been offered a job at Raytheon, in Tucson. He had interviewed for this job many times, with different people, over the past few months. Due to the type of job it is and the way that it may change our lives, we knew that he would accept the job if they offered it to him. I prayed about it that night and so did he, but we both felt really good about it. So, the next day he accepted the job. Voila! Who would take care of our kids? Mike would. He no longer had the stress of a billable hour requirement. He found ways to get all his work done at home and after he gave his notice, the big cases  - the time consuming ones- stopped coming to him. Freeing up time to take kids to appointments, be home when they were home, etc. Heavenly Father swooped right into our lives and made everything work out better than I could have imagined. I could not have planned this myself and it is not a coincidence.

While Mike was interviewing, there were always the questions revolving around Aulton. Where would he go to school, could I find therapy, respite workers, what would I do about transferring his state services, how would I change his IEP. Moving is a lot of work, it is more work with Aulton. But, I told Mike that God has a hand in Aulton's life- ALWAYS. I have found this to be true over and over again. If we are supposed to be in Tucson, God would make it work out for Aulton, as long as I did my part.

It's a big part. I spent the first two weeks of the study on the phone. I had a lot of down time and I wasn't ignoring any kids, while I called schools, agencies, posted questions on Facebook groups, communicated with other parents of special needs kids and made lots of lists.

The first weekend I was home, I had found a realtor, she had time on Saturday and we went house shopping. I planned for this to be a long process. We want a single-story home, with a pool and three garages and lots of other things. We found our new home that day. It was the cheapest home we looked at and by far my favorite. I fantasize about this house constantly. You do not find your dream home, the very first day you start looking UNLESS God is helping.

I have found a school for Aulton, I have found a school for Lyla, I've worked out some of her extra-cirriculars, we close on our house in two weeks, Mike starts his new job next week. Things are falling into place. I still have an incredibly long list of "To-Dos", but things are getting checked off.

Has it been hard to do a study and plan a big move simultaneously? Absolutely. Has is been worth it? Undoubtedly. Is God in the details? I've never been more sure of anything.

I'm thankful he helps scientists cure diseases and I'm thankful for his hand in my family's life. It is always there, but sometimes it's so very obvious that I cannot deny it. If I have any bravery or strength, it is because of  Him.