It has been a while since Ryan announced his reboot. Life is hard as a teenager, and when you throw epilepsy and autism in the mix, it makes it even harder.
One of the things we have talked about is just trying to do a little more each day than the day before. One small thing. So far, that has helped.
Ryan has said that he wants to blog “stories,” so we thought that it might be best to make his comeback with some stories about his latest adventures.
I found out about this opportunity through a local Facebook homeschooling group that I am a member of. Ryan has been really tired recently after just having gotten over being sick, and I felt like this was just the push that we needed to get out of the house. Ryan and I had a great time. Reunion Tower was built in 1978, just a few days before I was born! This building offers a 360 degree view of Dallas and the surrounding area. We enjoyed exploring and checking out the interactive exhibits.
Here are Ryan’s thoughts on the field trip:
I LOVE FIELD TRIPS. TURNED OUT BETTER THAN I THOUGHT IT WOULD. CALLING IT A SUCCESS–EDUCATIONAL AND FUN.
I LIKE TO THINK FIELD TRIPS ARE IN MY FUTURE. I AM GLAD THAT RESTRICTIONS ARE LETTING UP. COVID IS REALLY THE WORST THING FOR MENTAL HEALTH.
This is another opportunity that I found out about through a local autism Facebook group. This organization helps teach tennis to kids and teens with autism. It is a national organization, with clinics all over the country. After I did some research, I thought that this would be a great opportunity for Ryan.
Some of you who have been following the blog for a long time might remember that Ryan has previously participated in things like this. He did a bike camp by I Can Shine and a skateboarding clinic by A Skate.
This was going to be Ryan’s first time learning and playing tennis.
We prepared for it by doing an RPM lesson all about the rules and scoring of tennis and we watched some clips of some tennis matches.
The tennis clinic is 6 lessons, every Sunday for 6 weeks. Ryan had to miss the first one because he was sick, so this past Sunday was his first opportunity to attend. Ryan was paired up with a volunteer named Zachary and due to the size of the attendees to volunteers, Ryan got one on one time and even three on one time. You will be able to see that in the pictures below. He also worked with Reese and Jason. I gave them a bit of guidance in the beginning and tried to stay out of it. This went fine, but there is a learning curve when working with any individual to learn their best learning style. I explained that Ryan would need a lot of physical and verbal prompts and that he would be okay with being touched. Hand over hand would be necessary in the beginning to gain the motor skills and muscle memory.
These guys were great. They were patient and receptive and treated Ryan just like they would someone their own age. By the end of the first lesson, Ryan was able to move the racket forward slightly on his own and make contact with the ball at a short distance. This was GREAT progress!
I wasn’t sure how Ryan felt about the lesson. I imagined that he was frustrated, especially in the beginning because it was so hard for him. Every skill that Ryan has made progress with in his life has been a matter of repetition, consistency, and hard work. I know that he can do this, and I am really looking forward to seeing where this leads.
Here are Ryan’s initial thoughts about his experience with ACEing Autism:
TOO LOVING THE GUYS. DEARLY FINDING THAT I WAS TOO TIRED DURING THE LESSON, BUT I PERSEVERED. I AM LEARNING THAT IF I CAN PUSH MYSELF, I DO HAVE A GREAT TIME.
THE GRIP OF A RACKET IS HARDER THAN IT LOOKS. I DID TIRE EASILY.
IT IS GOOD TO PRACTICE LOOKING AT THE BALL BECAUSE IT IS TOUGH.
WOOHOO. I AM INTO TENNIS.
Thank you to all of you who support Ryan. We will continue with the blog reboot and we would love to share our adventures with all of you.
If you have any questions or suggestions for us, we would love to hear from you!
We decided to write a list post. These are fun to do and I think that this particular post can show how your attitude and perception is so important. I always say that you can’t control what happens to you, but you can 100% control how you respond to it. So here is Ryan’s list. His comments follow in italics below each item.
1. Book Club
This was started by a fellow RPM mom named Sarah who reached out to a Facebook group asking if there was any interest in a book club for our kids. As you all know, Ryan and I love reading and Sarah suggested The Chronicles of Prydain for the book club, starting with the first book, The Book of Three. We meet twice a week and read three chapters at a time. This book club brings as much joy to me (if not more) as it does to Ryan. These kids are so smart, witty, and funny. Sarah does such a great job facilitating the Zoom sessions (which last an hour and have about 22 participants at a time). She comes up with great discussion points and it is so well organized and run. The flow and tempo is perfect and all of the students get recognized for sharing their insights. I cannot say enough good things about it.
Ryan’s take on Book Club: Book Club is amazing. I look forward to it every time. Preaching a fantastic teacher in Sarah. Making friends has to be one of the best parts. Nice to be in an elite club with same students each week.
He later added: Returning to book club–saw awesome opportunity as a book lover and it didn’t disappoint.
2. Family Walks
We have done more walking as a family these past few months than ever before. We walk everyday that the weather permits.
We take Freckles of course and sometimes Grace rides her bike. Ryan is still riding his bike as well. We still need to practice stopping with him, so our newest idea is to take Ryan to the local elementary school’s track and have him ride there without having to worry about traffic.
Family walks are awesome. I love getting outside and exercise. I want to ride my bike more often. Reason it is hard now is I can’t stop when I need to.
3. Family Movie Nights
Ryan’s tolerance for sitting and watching movies has gotten so much better. Sometimes, he will still sit with his back to the television because he just wants the auditory input and cannot handle the vision portion, but he still gets all of the dialogue. We have watched The Maze Runner, The Princess Bride, Divergent, Yesterday, Onward, Labyrinth, and The Black Cauldron (we previewed it and then watched it again with the Book Club).
Family movie nights are great. I love watching meaningful stories like Divergent and Yesterday. As an auditory student, am ok to just listen sometimes.
4. New Television Shows to Ryan
I guess I can’t really say that Jeopardy is new to Ryan, but we discovered there were collections available on Netflix and Ryan loves them. We also watch Jeopardy nightly at 6pm and 7pm and we watch Wheel of Fortune in the between time slot.
Ryan also discovered The Office and really likes that. It was recommended by a friend in book club. His favorite character is Jim and we also watched Some Good News (SGN) on YouTube, created and hosted by John Krasinski, the actor who played Jim on The Office. If you haven’t seen the 8 episodes of SGN, I would suggest making it a priority to watch them. They will make you laugh and cry. I loved it.
Ryan has also expressed an interest in learning to play video games. Grace and Randy have been helping him with that.
Popular games are like so fun. Video games are hard for me because my hands are so difficult for me to control precisely. Grace is a great helper.
6. Learning to Cook and Bake with Mom and Dad
Ryan recently opened the Boy Scout Merit Badge for Cooking during this time period. He has had an interest in helping out in the kitchen. He has baked cookies, cakes, chocolate chip pumpkin muffins, Rice Krispie Treats, Lucky Charms Bars, and gluten free biscuits. He has helped cook scrambled eggs, tacos, taco scrambled eggs (yep, it was with leftovers!), and has helped prepare his waffles and toast and helped Randy grill meats.
Soon I will be a chef. JK. Booked a return as a guest on Mom’s cooking show. Reason is I love baking but Mom doesn’t have a show yet.
7. Chores Around the House
Ryan has been helping out a ton. He loads the washing machine and transfers laundry to the dryer. He unloads the dishwasher. He vacuums. He often initiates doing these things and it actually helps me to stay on top of all of these things.
Um chores stink but ok believing I am helping out makes it worth it.
8. Writing with Friends
On Friday mornings, Ryan and a few other RPMers get on Zoom and write a story together. Ryan’s friend Fox’s mom, Lisa, organized it and she often comes up with the starter for the story which is often three random words (many times the writers choose the words) and these words need to appear in the story. There are six boys, but not all of them can make it all of the time. It is fun to see where their creativity takes them and to see all of the different writing styles of the boys.
As a freed boy from silence, it is great to write from my imagination. Terrific group of friends to write with.
So that’s Ryan’s list. I would like to think that we have made the best of a difficult situation during this time. Here is how Ryan wanted to end the post:
A determined boy doesn’t wallow. Terrible to feel sorry for yourself. I won’t be that boy.
I keep seeing posts about January being the longest month ever and I think that I might have to agree. That being said, it was a good month here.
Ryan received three merit badges and three patches at the most recent Court of Honor for his Boy Scout Troop #589. He received merit badges for Citizenship in the Nation, Citizenship in the World, and Chess. He received patches for his participation in the Longhorn Council Camporee and Merit Badge Mania, and a patch for his Popcorn Sales! Ryan was very proud of himself and of course we are extremely proud of him and all of his hard work.
Ryan also attended the Eagle Court of Honor of one of his fellow scouts, C.J., who Ryan helped over last summer with C.J.’s Eagle Scout project. This was a great ceremony and Ryan was thrilled to be able to help congratulate C.J. on this amazing achievement.
Ryan is working on his Tenderfoot rank and has to complete the physical fitness requirements for this rank. Ryan is working on improving his beginning measurements from his assessment and his one mile time for his followup check in the next few weeks. Lee Seale of Special Strong, Ryan’s trainer, is helping him with the exercises.
Ryan has also been attending our church’s special needs ministry, the Samuel Ministry, since September. He has really enjoyed his monthly evening with his new friends. This ministry is for all people who have special needs within the Good Shepherd Catholic Church Community. Ryan is one of the youngest there, but that does not even factor in. He has had such a great time each time we have gone! Here are a few pictures from the events.
These are Ryan’s thoughts on the Samuel Ministry.
On Monday night, Randy, Ryan, and I went to see Celine Dion in concert at the American Airlines Arena in Dallas! This was a birthday gift for Ryan when he turned 13 back in October. Well the wait was finally over! He was so excited!
When we went to go inside the arena, Randy pulled up the tickets on his phone. When they were scanned, they all showed up as invalid. I could see Randy starting to get flustered. The woman told us to go down to the customer relations window and to show her the tickets to get some assistance. We did that and she told us that sometimes when tickets are purchased via StubHub, if the person selling the tickets views the tickets after they are purchased, then it automatically generates a new barcode. This seemed strange to Randy and to me. Randy called StubHub customer service and we explained the situation to the representative on the phone. She was very kind and told us that she was going to get us new tickets. She sent Randy the tickets and we held our breath (and kept the representative on the line) until they were scanned. We made it! Here are our orignal seats and then our new seats!
Once we sat down, Ryan did type that he was A BIT NERVOUS.
And now for some pictures from the show!
Here is what Ryan had to say about the experience last night.
So that’s it for now. This is a bit of a shorter post, but hopefully the pictures help to tell the story. Thank you for continuing to follow and support Ryan and our family!
Well, we took a long break from blogging and it was my fault. I am happy to think that we will be back to it more regularly in 2020. My goal is to get two blog posts up a month and anything above that would be great. So let’s catch you up on what has been going on here.
Ryan is now a teenager. We are in the middle of our fifth year of homeschooling and it has been going well. Ryan’s favorite subject is Math this year. He loves solving algebraic equations and word problems. It has been challenging for me to keep up with this but it is fun to watch his brain work.
Ryan is still typing up a storm. We take the bluetooth keyboard everywhere and people are entranced by the technology. Ryan feels like he has a real voice now and we have even started programming it so that he can recite the Pledge of Allegiance, the Boy Scout Oath and the Scout Law during the Boy Scout meetings along with everyone else.
When I asked Ryan what he wanted to blog about, he typed the following:
In addition to typing, we have also started bringing a Boogie Board everywhere with us. This is a portable blackboard/erase board that Ryan can use to hand write answers on. This comes in handy for one word answers or choices. His handwriting has improved tremendously. Anyone can read it now.
Which leads to another one of the things that Ryan wanted to talk about on the blog, his drawings. Ryan has gotten into art lately and has been doing some drawing with pastels at home. What we have done is that we try to think of a subject to draw and then I look it up on the computer. I let Ryan scroll through all of the images and he picks which one he wants to emulate, but can still put his own personal spin on it. These are some of his recent works that he wanted to share with everyone.
Again, I am not sure how to convey how amazing this is. Ryan could not even replicate a line just 3 years ago. Now he looks at the image and then attempts to replicate it and does it! He chooses the colors and I hold up a clipboard with the paper attached to it and he draws the image. I am very proud of him. This is a great creative outlet for him.
Another creative outlet continues to be the piano. Ryan is still taking weekly lessons at School of Rock with Melissa. The main gift that Ryan wanted for Christmas was A LASTING PIANO.
Ryan has made a lot of improvement during piano lessons as well. He is improving his independence with the keys. He has also been playing some songs with just chords, so he needs to use both hands to do this. I love watching him practice because music does not come naturally to me, but it does to him.
As most of you know, 2019 was a challenging health year for Ryan as he was diagnosed with epilepsy. It took a long time, but we seem to have gotten it under control. The medications that Ryan is on have really taken a toll on his body and his energy level. Almost daily, from February until November of this year, Ryan would spell/type I AM POOPED or I AM TOO TIRED. He was. It was hard for me to watch my energetic son be so tired every day. His body adjusted to the medications but he still had no energy to do simple things that he used to do. In November, with his doctor’s recommendation, we added in a supplement to support mitochondrial dysfunction, Ubiquinol, and the difference was dramatic. Ryan has not once said that he is TOO TIRED since beginning it. Now there are still days where sleep is challenging or he stays up later and is tired the next day, but those things are normal for anyone. I am so happy that Ryan is feeling so much better and that we plan to do more physical activities in the future.
So now I will talk about the new year! Ryan made four resolutions that he wanted to share on the blog.
To do more art and create 50 pieces of original art this year.
To get back into running/walking and to try and participate in a few races this year (he would not commit to a number because he is not sure if he can wake up for 8 am starting times for races–this is being a teenager and wanting to sleep in–not because of overall extreme fatigue.)
It has been a very busy summer here. We had Aunt Sam and Mr. Jeff’s wedding in Philadelphia in May. Ryan was asked to be a part of the Catholic Mass and he was amazing.
One thing that we have not yet shared with our readers is that Ryan joined the Boy Scouts this Spring. He is having a great time so far and we will be sure to blog all about it in a separate post. Here are a few pictures of him in action.
Ryan finished up sixth grade and then our family made a trip down to see Soma Mukhopadhyay at HALO in early June. The whole family went and we turned it into a mini vacation in Austin, Texas. Ryan worked with her two days in a row and on the second day, did the entire session with the letter board flat on the table. This was great progress.
Later in June, Katie Anawalt, another RPM Certified Provider, came into town for a 3 day workshop that I helped to organize here locally. She is a Speech Therapist as well and she has many students who use a bluetooth keyboard during RPM lessons. She immediately tried it with Ryan and he was ready. He took off with it! The first day, he was very engaged and caught on quickly. He was hovering over the spacebar as if he was stuck but Katie encouraged him and he got it. By the second day, he was more confident. By the third day, he was making funny comments and doing open ended on the keyboard!
I wanted to practice with him at home because with most new skills with Ryan, especially RPM stages, I have had to practice with him considerably in order to replicate the progress that he had with a certified provider. Well, he caught on with me right away and now he types with me everywhere. In fact, he uses less repetitive words and phrases with the keyboard vs. the letter board!
In the RPM process, Soma does not recommend introducing a keyboard until the student is independent with the letter board (meaning the student holds his or her own board or the board is flat on the table). She explains that it is not much different whether you point on a letter board or a keyboard. I understand and respect this way of thinking, however, this introduction of the keyboard has reinvigorated both Ryan and me. I believe that the new visual field has made him concentrate more and that has helped him to better compose his thoughts. Also, the addition of the space bar and the physical pressing of the keys is amazing. I don’t have to guess where a new word ends or begins. I don’t know how to explain the pressing of the keys, but because of the tactile feel and the auditory feedback, I think that it is a game changer. Ryan has been spelling open ended on the letter board for four years now. It was time for this.
I also believe that technology makes him appear cooler or more legitimate. I hate to phrase it that way, but it is the truth. We have an app called Assistive Express, that has voice output technology. We loaded that app on my phone and it goes everywhere with us. Ryan loves that piece of it too. He can press the enter key and everything that he has typed is read aloud for him. He has had conversations with other kids, including other scouts, and adults and they watch the screen to see what he types.
Another thing that I have noticed is that Ryan actually initiates conversation now. He picks up the keyboard and brings it to me to initiate a conversation. He sits down in the spot at the kitchen table and will get my attention and wait until I bring over the keyboard. When we are in the middle of a lesson or a conversation, he will tap at the keyboard when he wants to say something. It is absolutely amazing to witness this initiation because as most parents of kids with autism know, initiation is extremely difficult.
Randy and I asked Ryan if he would be okay if we videoed him typing a message to the readers about his transition to typing. Ryan and I were both nervous, but we captured a good clip that we wanted to share with all of you.
Ryan had this to say after we finished taping him:
Ryan will continue to work on speech, handwriting, and the letter board flat on the table. We have plenty to work on and we will continue the hard work. For now, I am enjoying the conversations we have each day with the keyboard. It is like getting to know Ryan all over again.
Ryan has had a strong interest in music for as long as I can remember. I used to sing to him as a baby (not very well, but I tried) and he has always enjoyed listening to music whether it was on one of his favorite shows or some CDs I played for him on car rides. If you have been following our blog for a while, you may remember that Ryan had music lyric lessons with Ben and wrote a few songs. He had also asked for CDs for his birthday a few years back and a guitar as well.
Grace has been attending School of Rock for almost 2 years now. Each season of School of Rock consists of a midseason show and a season ending show in which the kids perform songs that they have been practicing the entire term. Ryan supports Grace and has tolerated the loud atmosphere of the concerts. After the season finale show in January, Ryan asked if he could learn to play music. He told me: I AM MUSICALLY INCLINED. I CAN PLAY THE NOTES IN MY HEAD. He also asked: CAN I DO SCHOOL OF ROCK? This was not the first time he had asked. I told him that I would do my best to make it happen. I asked him what instrument he wanted to play and he responded: LOVE GUITAR. Grace and I explained to him that he would likely need to start with piano because guitar requires a lot of fine motor skills and piano would be a better option for now. He agreed with that so I approached the manager at School of Rock and we set up a trial lesson for Ryan.
Ryan met with Melissa, the musical director for School of Rock. We started with introductions and Ryan interviewed Melissa about her job. She then began with the C scale. She explained to Ryan that she was going to start with some nursery rhymes as she does that with all of her new students, regardless of their age because they are easy and most people know the melodies. They played Twinkle Twinkle Little Star, and Row, Row, Row Your Boat. Ryan needed (and continues to need) physical support to play the piano. In addition, he uses just one finger. This is hands on, with the goal to be able to fade away the support over time as Ryan’s muscle memory improves. She asked him what kind of music he liked and he replied: REALLY LOVE CELINE DION. She told him that that was great and that she would pick some Celine Dion songs to work on for the next lesson.
Ryan was completely engaged the entire time and did not try to get up from the piano bench or leave. He loved it. I knew that after that trial lesson, that this was the right fit for Ryan. This was in the beginning of February and Ryan has had weekly lessons with Melissa since then. Here is what he wrote a few weeks back after a lesson with Randy and me in the classroom.
REALLY LIKED THE LESSON TODAY. MELISSA IS AMAZING. SHE REALLY TREATS ME WITH RESPECT. I CAN’T BELIEVE I CAN PLAY CELINE DION SONGS. I HAVE HOPED IN MY MIND THAT I WOULD SOMEDAY REALLY PLAY MUSIC AND IT IS COMING TRUE. DO YOU FEEL PROUD OF ME MOM AND DAD?
I have found that when I practice with Ryan, I am often hindering his progress because I can’t keep up. This is a learning curve for me too as music does not come naturally to me and I need to practice as well.
I am so thankful for Melissa and School of Rock as they are able to fill a void in Ryan’s education/development that I am not equipped to help him with. In addition, Grace has taken the lead on the at home practice with Ryan. She is helping him practice twice a week. Ryan has said more than once REALLY GRACE IS BEST TO PRACTICE WITH. I don’t take any offense to that because I completely agree with him.
So Ryan will continue to have lessons and over time, we hope that he will be able to play piano independently. This may take a while, but he is learning and having fun, so we are in no rush.
Here is what Ryan had to say:
I REALLY LIKE EVERYTHING ABOUT SCHOOL OF ROCK. TOTALLY FEEL LIKE A MUSICIAN NOW.
Last weekend, one of Ryan’s best friends, Lawson, came into town with his mom, Leslie for a visit. Our first stop was Chipotle for dinner. Once we got in line and saw them, Ryan spelled: EACH DAY I PRAYED TO SEE LAWSON AGAIN AND NOW HE IS HERE. I teared up when he finished as I know how much Lawson means to Ryan. After dinner, we headed back home for some cupcakes for my birthday.
The next morning, Ryan had another seizure, so we kept the day low key. Ryan usually sleeps for a few hours after so we rested but finally ventured out to pick up some take out and hang at home.
Sunday was low key as well as Ryan’s anti-epileptic medication was increased which made him tired.
Despite all of this, it was a great weekend. The thing about great friends is that just being in their company made it a great weekend. Leslie and I got to catch up a lot and Ryan and Lawson got to spend time hanging out with each other. Best friends don’t need words.
After the visit, Ryan said this:
REALLY LAWSON IS MY BEST FRIEND. HE DEARLY GETS ME. I KNOW HE WAS WORRIED ABOUT ME. I CARE FOR HIM SO MUCH. I CAN’T WAIT TO VISIT HIM IN ARKANSAS.
We head out of town this week for Ryan’s Aunt Sam’s wedding! We will be sure to fill everyone in when we return!
I was in our office finishing writing our last blog post. Randy was in the family room with Grace watching a T.V. show. Ryan was in his bedroom. After I finished the draft of the blog post, I went to Ryan’s room to tell him that I was done and that I wanted him to preview it. When I opened the door, I noticed Ryan on his bed and I immediately knew he was having a seizure.
This was the first of three seizures that Ryan has had in the last month. Each one lasted longer than 5 minutes and that is considered a medical emergency. The paramedics have come to our home on each occasion and have transported Ryan and me to Cook Children’s Hospital in Fort Worth. His last seizure was this past Thursday.
Many of you may remember that Ryan last had a seizure at DFW airport in September 2017. I felt very strongly that the triggers for that seizure were sleep issues (we had a 7 am flight which warranted a 4 am wake up call) and stress (it was the longest TSA line I have ever been in and I was worried that we might miss the flight). At that time, we trialed medication (again) and after meeting with the Neurologist, decided to stop the medication and just carry rescue medication in the event he had a seizure that lasted over 5 minutes.
This seizure caught me off guard. He had slept fine the night before. He was not sick and was not under any significant stress. I had not looked at the intranasal rescue medication in quite some time. Without practice, it is a bit complicated to administer and Randy and I had trouble trying to figure it out while Ryan was seizing. The paramedics arrived and stopped the seizure with intravenous Versed. We don’t know the duration of this one as Ryan was by himself in his room for quite some time.
I always worry that Ryan will wake up and have lost some or all of skills, like the ability to point on a letter board. While we were in the hospital, after a few hours, Ryan was trying to pull out his IV and the different sensors that were attached to him. I explained to him that he needed to leave the IV in place so that the doctors could give him fluids if he needed it, could draw blood, and give medicine if necessary. I held the board and he spelled: REALLY CAN GIVE MEDICINE IN MY MOUTH! I then knew that he was okay.
From this date on, I was hyper vigilant. I was following him around like a hawk. I was sleeping in his bedroom in a recliner. I told Randy that the only way that I would sleep in our room is if we got at least a baby monitor as a temporary solution. I was researching seizure monitors at the time and trying to determine the best one for Ryan. I was having him practice wearing my different FitBit bands to see if he could tolerate a wristband device.
February 15, 2019, 9:30 pm
I was tired. I decided to get to bed early and I had washed up and gotten my pajamas on. I heard Ryan’s iPhone through the baby monitor (he uses it for watching videos) and I thought that I would check on him one more time before going to bed. When I went into his room, something seemed off. I tried to get him to respond to me and he couldn’t. His eyes deviated upward to the left and I realized that he was having another seizure.
We were more prepared this time. I began timing the seizure and Randy got the rescue medicine. We videoed a few minutes of the seizure before calling Margaret (Randy’s mom) so she could come over to stay with a sleeping Grace. When it got to the 4 minute mark, with no sign of stopping, we called 911. Randy administered the medication at the 5 minute mark. By the time the paramedics arrived, the seizure had stopped but we timed it at 15 minutes.
During that ER visit, I made sure that they got blood work and the doctor decided to check for Flu and Strep since I had mentioned that he seemed like he might be starting to have a runny nose (no other symptoms). His Strep test came back positive. He had absolutely none of the classic signs of Strep. I mention this specifically to other parents of kids with autism. If I had bet money about the Strep test, I would have lost. I did not think that there would be any chance that the test would come back positive. Ryan was given a shot of penicillin in the hospital and some temporary meds for 3 days until we figured out which seizure medication he would start going forward.
We finally had his neurology appointment on February 27th (which was made after the first seizure but this was the soonest that we could get in). Ryan did great during the visit and we spoke at length with the neurologist. We talked about getting another EEG for Ryan and I mentioned that I would like to wait (if possible) for Ryan to do it with Brad Levy of EEG to Go. She thought that this was fine for now. The hope was that these two were isolated and that with the medication, Ryan would be fine for now.
As I mentioned earlier, during this time, I was researching seizure monitors. I stumbled upon the Danny Did Foundation website. This amazing organization provides grants to families to purchase seizure monitoring devices for their children. Randy and I decided that since I am essentially with Ryan 24/7, with the exception of sleeping, the SAMi Sleep Activity Monitor would be the best fit for our family. We went ahead and purchased it right after the second seizure and received it pretty quickly. This camera is constantly running and recording any movement lasting longer than 15 seconds. When the app is open on your phone, it sounds an alarm for these movements. Since the camera is continuously running and recording, you can retrieve videos once your phone is connected to the home WiFi.
I spoke with Mary Duffy of the Danny Did Foundation and filled out the grant form. We had purchased the camera after the second seizure but the Danny Did Foundation was able to reimburse us the cost of the camera. From their website:
Founded by Chicagoans Mike and Mariann Stanton after the Sudden Unexpected Death in Epilepsy (SUDEP) of their son Danny just before his fifth birthday, the Danny Did Foundation is dedicated in its mission to prevent deaths caused by seizures. The name of the foundation comes from the last line of Danny’s obituary, written by his dad: Please go and enjoy your life. Danny did.
Danny Did Foundation Website
My fear is that Ryan may be injured or worse as a result of his seizures. This is exactly why I was sleeping in his room. By receiving the SAMi camera, I can be alerted to any possible issues. As I am writing this post, Ryan is resting in his room and I have the SAMi app open on my phone. I want all families of children and people with epilepsy to know about the Danny Did Foundation and the different seizure monitors available. This was the main reason to share Ryan’s story.
March 7, 2019, 8:00 pm
I was reading to him and he was in his bed and I noticed that he looked like he was chewing on something. I repeatedly asked him what he was chewing on, and he almost looked like he was trying to respond and then could not. After a few seconds, I realized that this was the beginning of a seizure. Randy has said that after seeing one of Ryan’s seizures, it was not what he expected seizures to look like. Ryan’s seizures are focal to bilateral tonic clonic seizures. I was by myself with Ryan as Grace was at a play with Margaret and Mark and Randy was in Las Vegas for work. Unfortunately, Ryan’s rescue meds were in my purse and my purse was not in close enough proximity to us for me to safely get it without someone to stay with Ryan (going forward I have a rescue medication located in a drawer under Ryan’s bed as well as one in my purse).
I was able to start timing the seizure and called 911 when it got to the 4 minute mark. The paramedics arrived and Ryan was still seizing, so they administered a shot of Versed in his thigh. At this point, it has been 17 minutes.
We went to the hospital and Mark met me there and Margaret took Grace home. The on call Neurologist wanted to discharge Ryan after a few hours, sending us home with upping his current medication and checking his Trileptal levels, which had to be sent out and we would not have the results for several days. I was not having that. I told them that I wanted more blood work done, including sodium levels (as Trileptal can deplete sodium) and that I wanted him admitted to the hospital overnight. They agreed and we stayed.
The next day, Randy got on an earlier flight and met us at the hospital around lunch time. Ryan seemed almost back to himself, so he was getting a bit stir crazy in the hospital room. We were able to get some books from the hospital library, which included an age appropriate middle grade novel and some baby board books. The reason for this is that Ryan enjoys flipping through the board books that I read to him as a baby. He calls it NOSTALGIC. We were also able to interview a few of the hospital employees, as Ryan loves learning about careers.
I wanted to see if we could get an EEG done in the hospital or possibly get Ryan hooked up with a 24 hr EEG to take home. We were able to do the short one in the hospital.
March 12, 2019
I have tried to figure out the best way to share these experiences with our readers while respecting Ryan’s privacy. The main reason that I wanted to blog about this is to talk about the SAMi Sleep Activity Monitor that we received as a grant from the Danny Did Foundation.
Ryan does not want empathy towards him, we all just want answers and right now, we don’t have a lot of answers. The EEG came back as normal. His trileptal levels were not within range, so the medication adjustment is definitely warranted. We may need to increase it again in the future. I am trying to write things down to try and see if we can come up with a pattern or any possible triggers. I will keep all of you updated. If you pray, I ask that you pray for Ryan’s seizures to be under control and that they stop happening.
After each time we have been taken by ambulance, our intention was for our family to visit the North Richland Hills Fire Stations who have helped Ryan. Unfortunately, we have not been able to do so yet. The NRH firefighters and paramedics arrived at our house timely and were essential to getting Ryan prompt medical attention. Randy and I are so grateful.
I read this to Ryan and he wanted to add his own thoughts, so we sat down at the table today.
LIKE TO REALLY SAY SEIZURES ARE SCARY. I DON’T LIKE WAKING UP IN THE HOSPITAL AND NOT KNOWING WHAT HAPPENED. ONLY THING TO HELP ME CALM DOWN IS YOU MOM. (At this point I started crying–ugh the stress and lack of sleep and the amazingness of my son.) I AM SORRY IT IS SAD FOR YOU. IT IS HARD TO THINK I STORE SO MUCH LOVE IN MY HEART FOR YOU AND I KNOW IT IS THE SAME FOR YOU. CAN REALLY TOTALLY GEEK OUT AND READ NOW. (So we did.)
I know that this was a long post, so thank you for reading. I really hope to never have to write a post like this again.
If you know anyone with epilepsy, please share with them the information about the Danny Did Foundation and the SAMi Sleep Activity Monitor. By the way, since I was in the room with Ryan, I did not have the app open on my phone, but the camera captured the seizure in its entirety. What an amazing piece of information for the doctors to take a look at to help figure out what is happening with Ryan! I am forever grateful to the Danny Did Foundation and the folks at SAMi.
It has been quiet a while since we have published a post. It was not intentional, but life happens. We had a great holiday season that included Randy and Grace’s birthdays. Uncle Dan came to visit and stay with us for a week. Here are some of the memories we captured in pictures.
You can see from Ryan’s happiness at the end of the interaction that it meant a lot to him. Isiah was extremely kind and patient and was truly interested in hearing what Ryan had to say. It goes without saying that he is now Ryan’s favorite baseball player. We can’t wait until the Rangers’ season starts!
I had a really eye opening moment two weeks ago with Ryan and I told him that I had to write about it. Ryan and I had finished the Ranger’s Apprentice series and had recently moved on to the spinoff series The Brotherband Chronicles. He had received some of the Brotherband Chronicles for Christmas and he also received two prequel books from the Ranger’s Apprentice series.
As most of you know, Ryan absolutely loves reading. I read aloud to him a lot because even though Ryan can read, it is hard for him to sit and track and turn the pages in the book. We are working on this, but he is not there yet. Anyway, we were on the fourth book of the series of seven of the Brotherband Chronicles and Ryan asked if we could go to Barnes and Noble. I of course agreed as I love Barnes and Noble and love finding new books and Ryan had some gift cards from Christmas.
We walked around the store and found two books for Grace and then we went to where the rest of the series of the Brotherband Chronicles books were and I picked up books five and six. We were getting ready to leave and I asked Ryan if he wanted to look anywhere else or get anything else and he spelled: REALLY HARD TO SAY THIS MOM BUT I AM NOT REALLY INTO BROTHERBAND.
I paused and picked my jaw up off of the floor.
I replied, “Okay. No problem. I am so sorry that I did not realize this.”
Ryan spelled: ARE YOU MAD, MOM? I AM SORRY.
“No, I am not mad. I am just shocked. I had no idea. I thought that you loved the series. I am so glad that you said something.”
I put the books back and we picked up two other new books to us in the fantasy genre. I could not stop thinking about this the entire time in the checkout line and the way home. How could I have not realized that Ryan did not like the books? I should have realized that a clue was his wanting to leave the room more frequently while we were reading. This has been a clue in the past. I think that because I was enjoying the books so much, I assumed that he was.
Once we got home, I talked to him about this.
“Ryan, I am so glad that you said something. I am sorry that I did not realize it.”
THANKS FOR NOT BEING MAD AT ME ABOUT BROTHERBAND. IT WAS REALLY BORING TO ME.
I took the dagger out of my heart, swallowed, and then continued, “Ryan are there other things that maybe myself and others are assuming that you like that we are off base on? I can think of a lot of things that people just assume you love or are your favorites. Can we go over them and you can give your honest opinion?
He agreed so I started writing a list of things that people (including myself) think that he likes and asked his feedback. Here is the list and what he had to say:
Books–LOVE THEM BUT I PREFER FANTASY THAT IS FUNNY TOO
Snickers bars (for a long time he loved them and then stopped eating them right before Halloween but still sometimes grabs for it in the checkout lane)–CAN’T STAND THEM.
White Rice–LOVE IT. NOT SICK OF IT YET.
Harry Potter–IT IS GREAT BUT I DON’T NEED ANY MORE STUFF.
Mickey Mouse–I STILL LOVE MICKEY BUT I CAN GET DISNEYED OUT THOUGH.
Chick Fil A–REALLY DEPENDS ON THE DAY.
REALLY GOOD TO TALK ABOUT THIS. JUST BECAUSE I SEEM TO LIKE SOMETHING DOES NOT MEAN I WANT IT ALWAYS.
“Ryan, I think the hard part is that people want to please you and do things that they think you like to do and get things that they think you like. What about choices? Do you think that you can be accurate with choices if I am not there?”
NO. LIKE NOT PICKING THE RIGHT ONE DRIVES ME INTO A FRENZY. REALLY BECAUSE I CAN’T TELL YOU VERBALLY WE CAN COME TO THE TABLE TO TALK EACH DAY. I NEED THE TABLE FOR FOCUS.
“Sure, of course we can do that.”
I wanted to share this story because I am always learning with Ryan. I think that it is often true that parents and friends of children with autism often assume that because they like something that they will always like it. I had absolutely no idea that Ryan did not like the Brotherband series. We had already read almost 4 books of over 400 pages each! And I am his mom!
Later, Ryan spelled: MOM, YOU CAN ALWAYS READ BROTHERBAND ON YOUR OWN.
**Insert crying emoji here.**
Here is a story that Ryan wrote with Adriana that was too good not to share,
EATING A CAN OF TUNA IN THE KITCHEN, GEOFFERY ATE BY HIMSELF. HE DIDN’T IN THE SLIGHTEST MIND EATING ALONE. THERE WERE SOME DAYS THAT HE LOVED THE COMPANY OF HIS FAMILY. OTHER DAYS, HE ENJOYED THE SILENCE. HE NEVER GOT TO FEAST IN THE MORNING BECAUSE HE SEEMED TO HAVE THE MOST TO DO IN THE MORNING BREAKFAST HOURS. THE TIME TO EAT HIS FEAST WAS IN THE EVENINGS.
STOIC AND RESTED, THE TIME TO EAT CAME. IT MOSTLY SEEMED THE BEEF TACOS GOT THE ATTENTION TONIGHT. HE SAT DOWN TO EAT. THE SMELL SHATTERED HIS NOSTRILS. THE TACOS MADE HIM HUNGRY. THE BEEF MADE HIS STOMACH INFLAMED. THE TACOS MADE HIM SICK.
THE REASON THEY WERE SPOILED TONIGHT WAS THAT THE BEEF HAD BEEN SITTING OUT TOO LONG. THE TACOS CAUSED HIS STOMACH TO TWIST AND TURN. GEOFFERY MADE THE DECISION TO TRUST SPOILED MEAT AND HE FACED THE DIRE CONSEQUENCES.
THE NEXT DAY, HE STITCHED HIMSELF SOME NEW CLOTHES BECAUSE HE GOT HIS OTHERS COVERED IN THROW UP.
THE MORAL OF THE STORY IS TO NEVER TRUST SPOILED BEEF.
**THE STORY WAS THE GROSSEST STORY I’VE EVER WRITTEN.**