TRAVELING

 Planes are just "Steel Containers for People"

It’s the beginning of Summer and we don’t have any airplane travel planned. I’m excited about this, but I bet there are some people who have children with disabilities who are traveling and may benefit from some of the things I have learned over the past year as Aulton and I traveled all the time. Some of this may be common sense, but I have found a few tricks that might be helpful.

My first suggestion is to call TSA Cares a few weeks in advance. I have never benefitted from this service, but I know there are others who have and it may really help. I didn’t request it every time we traveled.

Before you even leave, explain everything to your child. I give Aulton lessons about the cities and places we are going. I tell him what day and time we are going, what kind of plans we have. I ask for his input on the trip. I ask about questions, concerns, etc. He really wants to know how a plane flies and we are going to work on those lessons this Summer (thanks to my friend, who gave me a packet her son used at school this year).

When you head for the airport, leave with plenty of time. You don’t know what kind of things may end up taking a lot of extra time. I also leave with fairly low expectations, I don’t get depressed about it. I just realize that not every part of the travel will go perfectly and that’s ok. I also realize that lots of things might go wrong and that’s ok, too.

I also want to go through security, as quickly as possible, because that can take the longest. I usually have a backpack and Aulton has one because I can’t pull a bag and push a wheelchair. When you go through security, make sure you use the disability line. It goes much faster and can help you at the belts. Every employee and airport will handle it differently. In Orlando, for example, they send all wheelchairs to the same line as every stroller. This was terribly annoying because there are 3,000 strollers for tired kids heading home from DisneyWorld and there are 3,000 wheelchairs for retirees going to visit grandchildren. At one point, all able-bodied travelers had to leave the line and go through the regular metal detector (which is normal). The TSA worker takes the wheelchair when you go through the metal detector, and you meet your child on the other side. However, at Orlando, the line is so long that when I left Aulton, he was about 12 wheelchairs back and I couldn’t go back around to get him. It’s not ideal, but I had already planned for it not to be.

I always put my debit card, my ID and Aulton’s passport in the front pocket. I have a small wristlet that works really well for just grabbing it. I put all of our electronics in the same pocket of Aulton’s bag. When I put the electronics in the bin, I put my phone in first and pile all the other things on top of it. The bin will likely sit at the end of the rollers for awhile and the phone is my most valuable traveling possession and the easiest for someone to swipe while they walk by due to it’s size. Putting it on the bottom of the electronics, makes me worry a lot less.

Sometimes workers will realize it’s going to take you more time and send you to a separate line, sometimes they don’t make you take off your shoes. Other times, they are completely oblivious and will just send you into the fray. This has happened to me twice, in Phoenix. One time a customer behind me was in such a rush, he actually pushed me out of the way because Aulton and I take up a lot of space and I have to remove both of our shoes. I was so frazzled at the time, I didn’t do anything about it. Keep your wits about you and tell someone if something like that happens. Most people are pretty understanding about it taking time and if they aren’t, too bad. It takes time and they should have come to the airport early. Once everything is on the belt, they will take you and your child to the side, while they way for a same sex employee to take your child through security. This is annoying because there isn’t usually space and everyone is confused about why you standing there, sort of blocking the line. Chances are, you will just have to tell people to go ahead, while you wait. I have waited for 30 minutes. I have also waited for two. Just be patient, someone will come. The TSA worker pushedsthe chair through a gate, and you go through the metal detector.

Security for Aulton is soooo tricky. I NEVER know how the TSA worker will handle him. Our experiences have ranged from simple swipe of the chair that took three minutes to a whole body search, where the worker was so inappropriately touching and searching Aulton, that I had to call for a manager. Sometimes the workers have had training and sometimes they haven’t. I have just learned, for the most part, if I am patient and calm and just let them do what they feel they need to do to be thorough, it will usually go fine. The most common thing they do is swab Aulton’s hands and his chair. They run those swabs through a machine that detects explosive material. They usually pat down his legs and have him move forward to check behind his back. Sometimes they swab my hands, sometimes, they have him get out of the chair to check all of it. It really is different every where, I don’t think there is a standard protocol.

After that work is done, I can return to my belongings that have just been sitting on the belt for a long time. I find a semi-isolated area to put our shoes back on and put everything in order. Then, I find an information desk (if it is a new airport and I haven’t seen a family restroom up until that point). I will ask about the nearest family restroom. These employees are often great and will tell you about ones that are off the beaten path or kind of hidden. There is a restroom in the Phoenix airport that is actually through some doors that look like they are just for workers. It is never busy and it’s usually really clean. The issue with family restrooms is that everyone uses them. I have stood behind a single man, waiting for the restroom. When I tried to open the door, he told me it was locked. When another single male walked out, I asked the man in front of me if he was using the restroom. He just looked at me and said he needed the privacy and it would just be a minute. Five minutes later, he walked out, the bathroom stank and I was very annoyed. More often than not, single people are using the restroom because they are so roomy and usually they are pretty clean. They usually look pretty sheepish when they walk out and see you waiting with a wheelchair. I literally cannot use the regular restroom with Aulton, the stalls are just too small and he is a teenage boy.

Going through security can take time. Finding and waiting for the family restroom can take time. Plan accordingly.

With a wheelchair, you have to go to the counter and get a tag to gate check. The people there are usually pretty nice. They change your boarding pass status to pre-check. If they don’t, ask them to. Even if you don’t have a wheelchair, you can go and explain that you need extra time.

When you are walking to and in the terminal, ignore staring. If it is horrible, stare back at the person. They will usually be embarrassed. If it’s a child, I smile, ask them if they want to know his name. That’s just normal curiosity and not ill-intended or purely bad manners, like it is with adults.  

We board first, almost every time. Some airports make an attendant take the stroller down backward. Not usually, but it has happened. Just go with it. Aulton has motor planning down for boarding the plane. When I help him out of the chair, he waits for me to put his backpack on then, he just walks onto the plane, while I break down the stroller. I catch up to him and we walk to the rear of the plane. For spelling convenience, we sit on the left side of the plane. Aulton doesn’t prefer the window, but I make him sit there anyway, so I can be a buffer for whoever sits on the row with us (if we are on a three seat row). On the left, he can spell, when he sits by the window. The communication partner has to sit to the right, so this makes the most sense. We usually sit about 5 rows from the back. I don’t like being in the last row because it is too close to the bathroom, but it is far enough back that when you get off you can wait until the end or take a little more time.

When a person sits next you, don’t apologize for anything. I used to tell the person that Aulton might make noises or be a little noisy. I think that just made them hyper-aware. Aulton is extremely well behaved and good at controlling his body on a plane, but he still does make some noise. Find things that regulate your child, like a certain show, fidget, book, etc.

The person next to you, will likely have on head phones and ignore you completely, especially if they are young. They will do their own annoying things, so don’t worry about it. A man once sat by me and ate sunflower seeds. The last time we flew, the kid next to me ate the entire flight. He even asked the flight attendant for extra snacks. Another time, the man next to me watched a movie with A LOT of nudity. A woman fell asleep on my shoulder, on a late night flight and never once said a word about it when we landed. I don’t think apologies for a little stimming are necessary. And, remember, you likely will never see any of these people again.

Here's another hint for the plane, buy the flight attendants Starbucks gift cards. They love it and will be so grateful. The first time I saw a man do this (it’s not common), the flight attendant announced it. Thanked him and later, when beverages came around, overed him free tequila. He declined, but they were so nice. Flight attendants can be very helpful, when you just show them a little extra kindness.

When beverages come around, you can ask for a lid and a straw. They have them, they just don’t offer them. You can also get double snacks if there is something your child prefers and will keep them busy. Of course, you always pack extra snacks and buy other drinks before you get on the plane.

If you are renting a car, make sure you are using the apps. The Avis app literally lets you skip the entire check in process and the car is just ready. When you return your car, you can ask the people at the company if there is someone available to take you to the terminal. Sometimes that works, sometimes it doesn’t, but is a huge time and muscle saver, especially in places like San Francisco where the rental cars are literally in another city and you have to take a long train ride to get there.

My biggest hint: plaster a smile on your face. Use the kindest words with EVERYONE. It is very hard for people to be rude to someone who is kind and smiling. People probably won’t offer to help, but if they do and you need it, take it! Let people help. Do all the things that will make the trip easier for you. Remember, why you are traveling and what’s the reward at the end of the trip.

When Aulton and I are finally in our rental car and he makes as much noise as he wants, we have a playlist that we like and we turn that on right away and just take deep breaths.

It is not easy to travel, with a person who needs some extra support. If you see anyone, who you think could use some extra help, offer to help. I rarely travel by myself, but when I do, I actively search for people who might need a hand. I have flown enough to know that kindness goes such a long way. That’s one of things, Aulton and I talk about when we board the plane and everyone else still has to get on. We recount the kindnesses that had been extended, sometimes I really have to search them out, but we always find something to be grateful about on our journey. Maybe you can be that person, that Aulton and I are so grateful for, because you made our trip a little better.

Not Spineless

One unexpected advantage of spinal fusion surgery may be that Aulton now has the cleanest and softest sheets in our house. The pain of the surgery made it difficult for him to sit on the toilet and that meant that there were a lot of wet sheets every single morning, for over a week.
In all seriousness, people have supposed that Aulton had the surgery for aesthetic reasons. People have observed that a spine with that kind of curvature is not very fun to look at. As a mother, it is heartbreaking. However, that is not why he had the surgery.
A spine that curved like Aulton's upsets organs. His GI system was severely impacted (no pun intended). The intestines were cramped, which caused serious bowel issues for almost a year and a half. One of his kidneys had shifted to a different place, which probably caused some problems. His ribs (remember - the rib bones are connected to the spine bones) moved over along with his spine. And, the most significant impact was on his lungs. His spine had one small curve at the top, which was trying, in vain, to correct for the curvature on his right side. His right lung became so compressed that it collapsed. This was not discovered before surgery. The lungs were visible in x-rays, but apparently the collapse was not discovered at this time. This abnormality has likely contributed to the obstructive sleep apnea that has worsened over the last several months. As a side note, it was hoped, but not expected,that tonsil and adenoid surgery would solve this sleep issues. The news that his apnea had gotten worse after the surgery was devastating.
In the short term, this is a painful surgery and recovery. Basically, the doctors cut his back, where his spine should be, from the base of his neck to almost hip level. Then, they spread out tendons, tissue and muscle and hold those in place with a spacer. They remove some of the joints, to make the spine more pliable and once they twist and move the spine as close to 0 degrees as possible, they put cadaver bone in the empty spaces, that will fuse the entire spine together. When the spine is at the best possible position, they place a drain at the end of the incision to support the massive amount of blood loss. They sew up the incision and put a dermabond type covering over it. Recovering from spinal fusion is no small feat.
This was not a vain attempt at "fixing" Aulton's appearance. This decision was entirely based on making Aulton's quality of life be the very best it can be.
When, Aulton was moved to recovery, he was sedated and placed on a ventilator. This was a little hard to see, but it kept him from experiencing the extreme pain that a person experiences after such a major surgery. It was amazing to watch his chest moving up and down, in a way it hadn't for years, while the machine breathed for him.
When he was taken off of the ventilator, on Friday, and woken up, it was apparent that he was having some problems with breathing. The doctors and nurses were always trying to get him to cough, to open up his lungs. Aulton does not have a strong cough and maybe never will. He doesn't have the muscles necessary for deep, lung and throat cleansing coughs. So, he would cough a little bit, but he had an oxygen mask on him for the inevitable dips that occurred. He struggled throughout Friday and Saturday.
Saturday night - he stopped breathing.
The code was announced hospital wide and medical staff rushed into the room. He was put on oxygen and whisked back to the ICU, where doctors tried to figure out what had happened. We know some of it was a result of the collapsed lung and there were other theories floating around. He was examined for a chest tube and given another IV. At this point, he had pulled out his central line. He had one removed earlier that day because it had failed. They tried to use the last, of the 3 available, and it failed. A new IV needed to be started.  This was a good time for mama bear to make an appearance. As observed by a fly on the wall, his mother told the nurse that if she didn't know what the f&*# she was doing, to not do it. Mom was assured that the nurse knew how to do the hard sticks. When the nurse blew the vein, she had no choice but to get someone else.
Aulton was very agitated during this entire time. Eventually he calmed down. When he was settled, the parent lounge, on the ICU floor, provides an excellent place to lose it, if you need to do it away from your child.
After this event, he stayed in the ICU and was put on a rigorous respiratory exercise schedule, which involved a lot of suctioning and use of the cough assist machine. His lung started to repair and we moved back to the floor.
Pain management, in the hospital, was pretty tricky. When we got it balanced with dyludad, he developed a sensitivity to it, that made him so itchy he was tearing at his face and chest and couldn't sleep. After a lot of adjustments and trying morphine for some time, we left with oral oxycodine, valium, ibuprofen and tylenol. At this point (19 days out) he is taking a regular dose of tylenol in the morning and the evening.
Doctors said Aulton would start doing his "normal" at 6 weeks. He is already there and it will be 3 weeks tomorrow. I figured it would take quite some time before he could get out of bed and his recliner by himself. He started doing those things yesterday. The washing machine is not constantly in use with his sheets anymore because sitting on the toilet is less painful.
They also said Aulton would need assistance turning in bed, every 2 hours, for 3-4 weeks. He started turning himself the after he came off the ventilator.
His recovery has been miraculous. He still has to attend physical therapy, help his mind adjust to his body not being crooked anymore and relearn some movements. He cannot bend, except at the waist.
People have also questioned why we waited for so long, since his curve was so severe. Again, quality of life. Aulton's rapid growth made his curve advance very quickly. There was nothing that could be done to stop it.  At the initial appointment in May, Dr. White said it could be schedules right away or it could be done when the summer was over. This would give him a little bit more time to grow and he wouldn't miss swimming season. He didn't have to lay in bed over the summer and have his recovery time divided with his sisters. He was able to travel and have a fun summer. Inevitably, the curve got worse, but again, we considered his quality of life. His summer was better than it would have been if it had been preformed in June or July. His recovery has certainly been better with devoted attention, that wouldn't have been possible during the summer.
Hopefully, this post resolves the number of questions that have been posed over the past month. 

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! 

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.

Days 15, 22, and 28  - September 14, 22 and 28

Constants 

There are a few things that are constant about my trips lately. I'm always going to have to wait in the security line at the Phoneix Aiport, I'm always going to be cold on the plane, I'm always going to be tired when I arrive in Salt Lake, I always take the same cab with Mohamed from Sudan and the injections always hurt.

At this point in the study, I can't really go into much more detail. I am pretty confident about whether I'm getting the drug or not, but I'm really not supposed to say on any type of medium. So, I don't have much to report, which is part of the reason why I didn't blog about anything two weeks ago. I also kind of ran out of time. During my hospital stay, my cousin, Machelle, came to see me and pick up some baby things for our other cousin who is having a baby. When I got to the airport, there was a really long line for security due to a DoTerra conference that had just concluded. I ate lunch and boarded the plane.

That's a lot of steps for a "normal" day

When I get home, I just go back to normal life, except that I usually have one or more body parts in pain for a few days, but not any extra time for blogging. On a related note: I had listed one of my symptoms, earlier, as muscle pain in my left quad. I vacuum nearly every day and I realized that I push the vacuum off of that leg in exact the same spot every time it propels forward. Muscle pain explained.

Today, my appointment is super easy- dosing and done. That's it! I got the injection on the left side of my stomach today (there's bruising on the right). It was painful, but less so than some of the previous injections.

My appointment last week was on a Tuesday, due to the clinicians all being gone that Monday. My Monday was a normal day, though. So, it was no surprise when I finally got in bed, that I had walked over 5 miles that day due to taking care of my house and kids, then, walking
through airports. I was pretty exhausted Monday night. I was also battling a cold that turned into a sinus infection. I was ill all week, but have been taking lots of medicine and antibiotics and my awesome husband has been letting me get lots of rest. I'm feeling pretty good today. I may be on the upswing.

Me and Jay 3>

Tuesday, I did a little bit of physical therapy, gave my blood and urine samples, had another EMG and got the dose. When I was walking to my room, before all of that, I saw a cute little boy resisting the 6 minute walk for the CMMD study. I only glanced at him because they try to keep some anonymity with the various studies. I asked if I could go talk to them when during a break. I found out that it was Sarah and Jay! Who live in Phoenix! I have talked to Jay's grandma many times about getting together, but it never quite works out. Sarah was so sweet and gave me the biggest hug right away. This is one of the things that helps me do this study, thinking about and actually seeing the kids.

My Aulton

So I wanted to give an overview of what is happening with Aulton lately since I can't discuss many specifics of the study anymore. The constant with him is that every time I feel I get a grip on a new "problem" in his life, we get hit with something else. We always deal with it. I will explain what's happening with his diagnoses right now starting with the most significant:

Myotonic Dystrophy- Aulton still has generalized muscle weakness. He also has started to get myotonia in localized parts of his body. Most notably in his GI system. We have been able to regulate it with a new round of meds. It is kind of hard to keep track of them all but it has straightened things out. He also has severe tightening of his heel cords, which is why he requires leg braces. We are going to start seeing an orthopedic surgeon who will put Botox in those muscles to see if we can get them to relax a bit. We will know after a couple of doses if it is working. If not, we will start thinking about surgery to cut and lengthen those heel cords. Aulton's organs (also muscles or at least composed of muscles) are doing well. His heart looks good, for which we are extremely grateful. His lungs, although compromised right now due to catching my cold, are good. We still do percussion vest treatments nearly every day. His eyes are near-sighted, but he is old enough that the doctor is no longer worried about him losing vision in his weaker eye. He doesn't have to wear his glasses all the time and we don't have to do eye drops anymore. He will continue to have more muscle cramping as he continues to grow. I don't know how much muscle pain he experiences right now. He continues to see physical, occupational and speech therapists outside of our home every week. He receives speech and OT at school, as well. Aulton has significant cognitive delays. Unfortunately, this new drug does not affect the brain at all. However, I choose not to focus on that, as he will really enjoy running, keeping up with other kids and jumping. And, I've always thought of that as something I would see in Heaven, but seeing on it on Earth, would certainly feel like Heaven. Aulton does know that he is loved completely, 100 percent of the time and that is extremely important. He also will be able to "miss" the hurdles that myotonia causes such as swallowing problems, cataracts, problems lifting, trouble breathing, cardiac issues. Myotonic Dystrophy can be a debilating and deadly disease. I know Aulton is doing great, but it's something I can't take for granted because a lot of people really suffer from this disease.

Autism - This is a tricky diagnosis because Aulton's neurologist, who specializes in myotonic dystrophy, says there are so many characteristics that the diagnoses share, so he may or may not have Autism. However, he has the diagnosis because he gets more services and he displays so many ASD traits that the treatment of them is the same. Aulton is non-verbal and uses an augmentative communication device to talk; he requests things and makes choices. It empowers him at home, school and therapy. Aulton has limited interaction with peers. He is in a new classroom this year, where all his teachers and classmates are new to him. This has been an adjustment. He has limited eye contact depending on his interest in what is going on. He also has quite a few stimulating behaviors that I will discuss in another section, as most of his diagnoses cross over.

Common Variable Immunodeficiency Disorder (CVID)- Aulton was diagnosed with this disease about four months ago. We have given him 14 infusions. For him, the infusion consists of putting two needles in subcutaneous areas weekly. The needles are filled with human antibodies, taken from donated plasma, that we load into a large syringe. The syringe has a pump that disperses the syrupy liquid into the two sites for about 50 minutes. I still hate this. Probably always will. But, it is getting easier. If we manage to do everything perfectly, Aulton sleeps through this. Mike and I have created a little tag team to make sure we don't make any mistakes. They still happen and then, Aulton wakes up, tries (and sometimes succeeds) pulling the needles out. He cries, pinches and is just generally pissed off. I would be too, if I woke up to someone putting needles in me. The next day is sometimes rough, depending on how much pain he is in. We always give him Tylenol the next day in case he has headaches, a common side effect, or is any pain. This disease is just part of Aulton's DNA, it is unrelated to the other diagnoses he has.

Epilepsy- Fortunately, Aulton has not had many seizures since he started medication. He had a petite mal seizure this summer and every once in awhile, Mike or I will glance absonce seizures that last less than a minute. Children with developmental delays often have seizures, but Aulton also has a pre-disposition to them. He has two nephews, on Mike's side, that also have seizures. We will likely keep him on this medication for life because it doesn't have any side-effects for him and it may prevent seizures. We were so lucky that it works and was the first med we tried because so many people have to try many mediciations and dosages before they find one that works for their child.

Sensory Processing Disorder - This is a very common part of myotonic dystrophy and autism. Aulton is a "sensory seeker". He loves any kind of deep pressure and sometimes creates it on his own, by finding tight spaces to squeeze into or crossing his legs and clenching his muscles. Any kind of stimuli is hard for him to process. Sounds are louder, tastebuds are weaker, smells are stronger, things look brighter and textures feel different to Aulton. His brain simply cannot process all the information that his body is feeling.  He "stims" a lot and I kind of hate it, especially how he covers his ears all the time!

PICA - Aulton will eat pretty much anything - that is not supposed to be eaten. It's kind of an awful part of his sensory issues. On Friday, he was not himself at therapy and when I dropped him off at school, afterward, I tried to explain. About half way into my explanation, he vomited, the entire contents of his stomach all over. I took him to the doctor because strep has been going around and I wanted to rule that, as well as anything else, out. The pediatrician said there is a bug going around, but also admitted he could have just ate something he shouldn't have. I think it was a bug this time, but we never really know.

ADD- Aulton has been diagnosed with Attention Deficit Disorder. I don't know. I think his cognitive issues are significant enough that a doctor decided he can't focus. He is able to focus on things that are motivating, just like a typical person. Lyla is pretty focused on the show "Descendants" and cooking. Aulton is pretty focused on Dora the Explorer and swinging. I think it's easier to throw a label on this type of thing.

OCD- Speaking of Dora. He has an official diagnosis of OCD based on his obsession with the tv character. I think it's kind of bogus.

So, that in a nutshell is what is going on with Aulton's diagnoses currently. I hate to make it seem like this is all he's about. These things are definitely part of him, but they do not define him. He is the most innocent, pure, calm, content person that I have ever met and HE is why I'm doing this.