Shawn's story on how he has lived with his diagnoses of moderate to severe cognitive impairment, global seizure disorder, and autism spectrum disorder.
#smallthingsLeadToBIGTHINGS
I realize that it has been a while since we posted any updates on Shawn. Sadly, no news is good news, does not apply. Shawn still does not have a job, even though he really wants to work. My heart hurts every time he asks me when he will go back to work at the recycling center, tells me I used to work there, or talks about wanting to take the bus to work. I was recently working on a paper for one of my classes in my master's program and realized just how much I feel like I have failed Shawn. Shawn was excluded from academic opportunities during his education as a child. We often had to fight school districts to get Shawn the little services that we were able to get. In one of Shawn's middle school IEP meetings, the Occupational Therapist told us that if Shawn hadn't learned to write his name yet he was never going to and that it was a waste of resources to continue trying to teach him. What I wouldn't give now to show her that he can and does write his name! Shawn also never learned to read while in school. But now he has shown interest in it and is no longer eligible for education services. Our goal is changing. We want to enroll Shawn in a home school program to try to teach Shawn to read and write. We are still looking for work and Shawn want's to be able to go to the Summer Bridge program again next year, which will cost another $3,000 or more. Now on to some Good News, because it is better to end with happy news. Shawn competed in the Unified Special Olympics Football game between UA and Ole Miss last month. He is going to Special Olympics bowling practice every week, and has started swim practice. His first swim meet will be this Friday. Shawn is also looking forward to the Unified Special Olympics basketball season which starts in January. Remember #smallthingsLeadToBIGTHINGS Thank you for sharing in Shawn's journey, Kat
He loves being Lord Shawn Paul of the Meadows and all the friends he has made in the SCA. This weekend was Coronation for the Kingdom of Meridies. Last night, Shawn was asked to escort Countess Ashildr at the White Rose Ball. The ball is held in honor of those who are members of the Order of the Rose - an order for those who have served as Queen or Princess. Her Excellency Ashildr is a prior Queen of Meridies and was one of the honored guests. Shawn has a love of dancing and they had been talking of this earlier in the evening while waiting for the hall to be cleaned up from feast. Shawn was hanging out in a group with our friends and household members, and Countess Ashildr was also there. When Countess Ashildr's partner for the evening was not able to attend, she came to him and said "My Lord, I don't know your name, but would you be my escort for the ball?" Shawn was her escort in the processional announcements and her dance partner until she left for the evening. For reference, Jim is awed and honored when he is asked to be the herald who announces the Roses into the processional. To be an escort was beyond his own hopes for himself. We are thrilled beyond words that Shawn was invited. Your Excellency, Ashildr, we thank you deeply as parents for your courtesy, and Shawn thanks you for the "cool evening dancing". It was marvelous to be present for this. ~ Jim It has been a good while since Jim has spoken as a parent on the SCA experiences of Lord Shawn Paul of the Meadows. Shawn being "included" is actually the rarity, because the kingdom here has INTEGRATED him as part of the fabric of the kingdom. Please know that Meridies has embraced him as one of her own. Outside the SCA, Shawn is still pretty bored. He is participating in several things with PARA and Special Olympics but still doesn't have a job. He has asked us if he can go to Summer Bridge again next year, so he has that as a savings goal from his donations and if he finds work.
#smallthingsLeadToBIGTHINGS
Thank you for your encouragement and continued support of Shawn.
So I had a conversation with the Program Director of Crossing Points yesterday. We happened to be in the same place at the same time. She said that she and the teaching staff at CrossingPoints have been continuing to try and contact the manager at the Recycling Center, but it seems that they had been emailing the former manager (or at least that is her assumption, since she has seen that person's name on realty signs recently). They are trying to get in touch with the current manager now.
So while frustrating, there is still work being done on Shawn's behalf.
#smallthingsLeadToBIGTHINGS
Thank you for your encouragement and continued support of Shawn.
I know it has been some time since we posted an update. There has been very little change here. Shawn is still not working but we have applied for several jobs. When applying for jobs I read Shawn the questions and I am impressed at how well he comprehends and answered them! He is very bored being at home most of the time. But we are doing what we can to keep him out in the community. Shawn goes with us on most errands, and his sister takes him places with her. He is participating in Special Olympics Bowling with PARA. He is also participating with the University of Alabama Special Olympics flag football teams. He also decided that he would like to start participating in the Cooking classes that PARA's Therapeutic program offers. Please keep Shawn and his job search in your thoughts, and if you hear of anyone hiring in Tuscaloosa let us know.
We learned that the Recycling Center does not have a position available for Shawn. He is very sad that he won't be going back. He truly enjoyed working there and has been helping me with the recycling at home. He has even spent time shredding documents for me so that we could recycle the paper. I didn't think he would like the sound of the shredder, but when he hears it he comes in and asks if he can do it. When we took the recycling to the center this past weekend Shawn told me that he hoped they hired him back because he was "saving the planet." So now we start the difficult process of trying to find a job for Shawn. Recent high school graduates often have trouble finding work, but that is even more difficult for someone with disabilities that needs job supports. But Shawn loves to work and works very hard when he has a job.
At home Shawn is extremely bored and keeps asking when he can go to work or back to Summer Bridge. He went into the office with me on Wednesday, he even dressed for work. That seemed to help a lot with his boredom, which is interesting since before his internship he was bored in my office. He even copied words I had written on my whiteboard! In Middle School we were told that he would never be able to write his name, but there it is and other words too! Please keep Shawn and his job search in your thoughts, and if you hear of anyone hiring in Tuscaloosa let us know.
#smallthingsLeadToBIGTHINGS
Thank you for your encouragement and continued support of Shawn.
Today was the culmination of Shawn's summer college experience. Over this last 8 weeks, he has been developing such independence he is nearly a new person. At the celebration ceremony, we heard of Shawn's positive attitude in his music course during the June mini-semester. He was in a class with 7 other students, but Shawn was the only student from the CrossingPoints program. His professor attended the celebration today and Jim got the chance to speak with him afterwards. He was so grateful to have Shawn in the class. He identified that Shawn's mentor in the class would give him a bit of assistance when Shawn needed, but he let off so Shawn was doing on his own far more often. During the celebration we heard the professor's comments to the program administration about Shawn's eagerness and his volunteerism which improved the class for everyone.
Shawn completedthe June MUS107 (Basic Skills in Music) course and the July COM123 (Public Speaking) course in addition to his classes specific to CrossingPoints students (Financial Management, Interpersonal Skills, Independent Living, and Positive Choices--a class on relationships). These courses were part of the standard summer semester for the University. Shawn had so many "typical college kid" experiences that we are overjoyed. As parents of a special needs child, it is the times where he is "just another kid in the crowd" that we celebrate. Standing out, all too often is because of a facet of disability-- so hearing situations where Shawn is leading a class in volunteerism is not anything we hoped to hear-- because he stood out not because of his conditions, but beyond those conditions. The amount of care expressed by the staff and mentors at CrossingPoints is unfathomable. We are fairly certain that the care is one of the reasons that CrossingPoints has such amazing results. Most transition programs have a post-program employment rate of approximately 30% of their students. CrossingPoints' employment rate is over 80%. Their staff are actively engaged in trying to have Shawn's summer position become a permanent position-- and even though Shawn is no longer one of their students, the program administrator and the teachers are actively working to try make this happen. To be sure, parents want the best for their child, and there is absolutely no question that this program was one of the best possible situations that Shawn could ever have attended. At the same time, we cannot help but be a bit envious. Today Shawn was a guest at the Nick's Kids luncheon. He had the opportunity to meet and have a photograph taken with Nick Saban, as well as get to meet some of the other players for the Crimson Tide including the quarterback Jalen Hurts. Many of the student mentors (not to mention Shawn's family) were jealous and hoping to offer themselves as staff supports at the luncheon.
During move out and after the celebration we had the opportunity to speak with several of the people that were involved in the Summer Bridge Program. Everyone told us stories about Shawn's successes in the program. The Graduate Assistant that coordinated and taught the students how to plan and prepare meals told us that even when it was not Shawn's turn to cook, he was in the kitchen helping out. She told me how she set up simple meal instructions in Shawn's Visual Schedule App with pictures of him doing the steps and recordings of her instructions and how well he has been able to use that to make meals. Two of the Undergraduate Mentors told us how Shawn rocked his last speech in his Public Speaking class. The mentor had misplaced the notes that Shawn was to use to cue him for his speech. (Yeah, Shawn can READ cue cards!!!). So they called his other mentor that helped write the cards and she turned his speech into song and Shawn did awesome in class. The Resident Assistant that has helped Shawn with his medication all summer said that he hasn't needed any prompting or reminders the last several times that he took his medication. That he was focused and did what needed to be done. The Undergraduate Mentor that Shawn has been working with since last fall said she is so proud of Shawn and now that he isn't one of the students in the program, they can hang out as friends and go places together. They have formed a true friendship that we hope lasts for years to come. There were so many stories, we don't know if we can remember them all to tell now. We will update again if we remember anything that we didn't share today.
Moving Shawn out of the dorm was both a joyous experience as well as a bit sad. We are so excited to have Shawn home and sharing all of his newfound independence and living skills with us, but sad in that he won't have all the friends he has made in such close proximity. Shawn is happy to be with his sister and they have a week before she goes back to school to hang out. The goodbyes were many and both happy and sad, we hope that Shawn will be able to save enough money to participate in the Summer Bridge program again next year. And we will work to help him stay in touch with his friends from this year. He has only been home 2 and a half hours and he is already ready to go back to the dorm (we were taking wagers on how long it would be before he asked to go back). Now we look forward to Shawn's next small thing which turns into Shawn's next BIG THING. #smallthingsLeadToBIGTHINGS
Thank you for your encouragement and continued support of Shawn.
One of our friends works in the same building that Shawn is working in and she happened to snap a picture of him at work when he wasn't looking. She sent it to me with a message that she is so proud of him and all he is doing! I had been wondering how I could get a picture of Shawn at work and then I got one in a message. Some things just fall into place. #smallthingsLeadToBIGTHINGS Thank you for your encouragement and continued support of Shawn. Katheryn, Jim, and Shawn
I meant to update sooner, but things have been busy here. Jim (Shawn's dad) is recovering from surgery, so that's been taking up a lot of our down time. Shawn is doing great. He came home for the Independence Day Weekend and showed us just how independent he is learning to be!
He amazed us at how much he has grown in his first four weeks of the Summer Bridge program. One of the big things was that Shawn wanted to cook and help cook every meal! Here is why, straight from the program: "The kitchen is the place to be at Summer Bridge! Every evening, a small group of students select a recipe they want to cook for their peers. The students make grocery lists, shop for the necessary ingredients, and prepare the meal with their mentors! The students learn about kitchen safety and cooking a variety of foods!" Shawn must be loving this part of the program, because he was really wanting to help make meals for his dad and himself. One day I heard Shawn get up and make himself breakfast without coming to wake us up. Shawn was also very excited about his job and told everyone about working at the recycling center. We think that Shawn has developed a great sense of pride that he is working because he knows that is what adults do. He was very excited when we drove past his work on the way back to his dorm at the end of the break, he said "I work there!"On July 4th, we went to visit some of our friends from the Society for Creative Anachronism (SCA) and Shawn was happy to see them. He has missed being able to go to SCA events on weekends, but has been very busy with the Summer Bridge program. The weekend after the holiday, the Summer Bridge participants went with Parks and Recreation to see Mary Poppins at the Alabama Shakespeare Festival. Shawn loves all the songs in Mary Poppins, so I'm sure that he had a blast. Then on Sunday, Shawn and his friend, Anna K, went to a concert at the Amphitheater and saw Rod Stewart and Cyndi Lauper perform live and had a great time. That wasn't part of the Summer Bridge program, but was just Shawn hanging out with a friend!And likeany other adult had to get up Monday morning and go to work.We do think Shawn is a little home sick though, because on Tuesday after work he called me after he couldn't reach his grandpa or Jim (He told me that grandpa was at work and daddy was at school). So I asked Shawn if he wanted to come to the SCA meeting with me that night and checked if it was ok with the staff at the program. Shawn came to the meeting and listened patiently while everyone gave reports. Then after the meeting was done, he visited with everyone, including the new baby in our Shire. Shawn really loves the SCA and his friends in the organization. Lord Shawn can't wait to go to an event and see you all again! He called me again yesterday after work, and he also called Jim yesterday and today. His sister told me that he has been calling her too. Jim got to speak with his on-the-job work mentor and was told that Shawn has been calling just about everyone he has in his contact list during his breaks at work. He will be coming home for a little while this Sunday to see his sister, but he is busy on Saturday with the Summer Bridge and won't be able to meet her at the airport. We sure miss Shawn being at home, but he is learning so much from this experience. So much more than money can buy. Thank you for your encouragement and continued support of Shawn. Remember#smallthingsLeadToBIGTHINGS Jim, Katheryn, and Shawn
It seems fitting to update about Shawn's progress towards Independence on the Independence Day weekend! Since coming home, he seems to miss the Summer Bridge and his classmates. He keeps telling me that they might call him. He has been helping take care of Jim while Jim recovers from Surgery, he seems very concerned with making sure that daddy gets well. He also helped me make scrambled eggs this morning. He scrambled them, and moved them from the pan to the plates, and carried the plates into the living room (we are eating together in there since Jim is more comfortable in the wing back chair). We got a detailed update about how the June Semester went so here is that news as it was given to us. Independent Living Shawn is learning a lot about living on his own at Summer Bridge! He is very social in the dorm, and he enjoys playing pool with his peers and mentors. Shawn is also the dorm "d.j." He supplies music with his Alexa when hanging out with his friends. Shawn is working on becoming more independent with cooking simple meals. His First Then Visual Schedule Apphas been programmed with a step-by-step schedule showing him how to make a grilled cheese. This has been very effective for increasing Shawn's independence. They plan on programming more recipes after the break. Additionally, Shawn has grown so much in his independency in taking his medication. The blister packets have allowed him to grow in his independency in taking his medication on his own. AcademicsShawn participated in the following UA Course during the June Term: MUE 107 - Basic Skills in MusicMUE 107 explores basic music-reading skills developed through singing and playing of instruments. Shawn participated fully in this course and did a great job! The teacher raved about Shawn's ability to match pitch throughout the term. He said on numerous occasions that Shawn was a joy to have in class and was always quick to volunteer to demonstrate new skills. The teacher reported that Shawn's positive attitude helped his classmates become more open and willing to step out of their comfort zone. This was a great experience for all involved. Way to go, Shawn! Next term he will be participating in COM 123 - Public Speaking. COM 123 is the theory and practice of basic principles of public speaking, with emphasis on the compositional and presentation aspects of communication in formal speaking situations. Employment This summer, Shawn has been participating in employment training. He has been completing his job training at the Recycling Center on campus. He works for four days a week from 8:30 am to 11:30 am. He goes to work with the same male mentor everyday that serves as a job coach. During his time at the Recycling Center, he is responsible for sorting the different containers of recyclables. Shawn does a great job of sorting the items and following directions. However, he does get easily distracted by sounds going on around him. For example, if two employees are talking, he will stop and look and listen to them instead of focusing on his work. He seems to really enjoy his time at the Recycling Center and never complains. Social Skills Shawn participated in a weekly social skills course during the June Term where skills such as communicating feelings and understanding the feelings of others were targeted. He has received some 1:1 instruction regarding initiating conversations with others about a mutually preferred topic and making requests/inviting others to join in an activity. We are so blessed that Shawn has this opportunity at Summer Bridge to learn how to be more independent! He is making progress faster than we ever imagined. Thank You all for helping support Shawn in his path to independence!Remember #smallthingsLeadToBIGTHINGS Shawn, Jim, and Katheryn
So I will post an update next week with the latest news from him. In the meantime here is another story that shows just how far Shawn has come. Shawn Meadows, PhotographerJune 13, 2009 Thank you for your continued support and for sharing Shawn's story with your friends and family. Shawn, Jim, and Katheryn Meadows
Monday our dear friend passed away, so our family came together for the services on Wednesday and Thursday. Shawn's sister came back from her summer trip and we picked Shawn up from the Summer Bridge. We were all very sad to say goodbye, but were able to be together in our grief and share our happy memories. Shawn was very happy to see his sister and show her around the dorm. They were able to hold each other in their grief and to make each other smile. They have never been apart this long before and the reunion was very good for them both. Shawn told us about his new job. He seems to be enjoying it. He also told us about his music class. Today, Shawn called to tell me that he found his wallet. We ordered Tile Finders for his devices and he has one in his wallet now too. We even have one to put on his keys if they are ever found. He has been locked out of his room a few times when he got home before his roommates, but he has handled that disruption pretty well. Shawn went to the lake this weekend and then made himself a smoothie to cool off when he got back to the dorm. We didn't know that he could use a blender! New photos have been added above. #smallthingsLeadToBIGTHINGS Thank you for your encouragement and continued support of Shawn. Jim, Katheryn, and Shawn
June 8th I had to take Shawn his medication refills and when I got there he was on his way out to a Job Interview, so I grabbed a quick picture and wished him luck. He called me later that day and excitedly told me that he got the job. It is an internship for now, not a paid position, but if he does well with job coaching it could lead to a permanent part time position after the summer. Shawn has been doing well in the Summer Bridge program, but he has had some struggles. He lost his keys sometime during the first week of the program and they aren't sure where he last had them. Saturday this week he lost his wallet with his IDs, insurance cards, and money, they think he lost it on an outing with PARA, so they are working to get in touch with someone to check on it. We are hoping that they find it since it has all his information in it. He also managed to disable the iPad that has his Visual Schedule and Spending software on it, so we had to set that back up, this time I made a backup after it was set up. Shawn has been living on campus for two weeks now. When we saw Shawn after the first week, he asked if he could come home for a visit. So we scheduled to check him out for this past Sunday. Unfortunately the visit was both sad and happy, one of our dear friends that Shawn considered to be an uncle suffered a cardiac event and seizure last week and was on life support on Sunday. So we took Shawn to the hospital to say good bye. He was very upset to loose his good friend. We stayed at the hospital a few hours visiting with our friends that had also come to say good bye, Shawn got to see some people he has missed while he has been in the Summer Bridge program. And he received many congratulations, so Shawn being here helped others to see some good in the world. We then went home and Shawn played video games for a while and spent time with us. He picked where we had dinner and then went back to the dorm. The short visit seems to help his homesickness as he was happy to be back at his dorm and hang out with his friends. They were grilling out on the back porch since it was such a nice day which Shawn loved, plus he got a second dinner. Monday he started his new job internship, he didn't call me so I don't know how his first day went but I hope he will tell us all about it when we talk to him next. #smallthingsLeadToBIGTHINGS Thank you for your encouragement and continued support of Shawn. Jim, Katheryn, and Shawn
For a week, Katheryn and I didn’t hear from Shawn directly.Today we couldn’t take it anymore and had to contact him. We got information from the Crossing Points web presence which occasionally showed Shawn in different activities like shooting pool in the dormitory recreation room or involved with his classmates in cooking activities. We got some reports from staff members directly letting us know that he was doing well, or we would hear from another family member whom Shawn had called—but never contact from Shawn himself. After all the strength of letting him flourish on his own and an effort to wait for him to call us, we broke down to call him on the phone. Katheryn asked him what he was doing, and when he said the dorm she asked if he wanted to talk on FaceTime. He was excited and hung up and called us right back with FaceTime. He apparently walked the halls of his dormitory going from his room to where his friends were and back but he invited us to come see him at the university. Katheryn and I went to see how he has been doing. He was very excited for us to be there and we could tell that he has been learning a lot of communication skills—his phone had texts and phone calls to and from family and staff members alike-all had been reviewed, so he is using Siri to help him communicate. We noticed that his lanyard didn’t have his keys on it, and staff said that he had lost them sometime Thursday or Friday, but they were working on resolving this. He explained what he had been doing, and one of his roommates came and spoke with us about the activities they had been doing as well. Apparently the guys all stayed up rather late last night (some reports were that Shawn was up until 5 am this morning) since the weekend gives them some unstructured time. All of his portable electronics were at minimum power—likely he had used them all night long and hadn’t plugged them in today. The late night was something he told us that he was planning for before he moved into the dorm last Sunday—almost a rite of passage in being a college student. All told, he was doing very well, but we could tell that Shawn was a bit exhausted this afternoon. As we were leavinghe was working with a mentor to do his laundry and he was a bit like a walking zombie, but was still functioning. He is enjoying his music class and told us about some of the life skills work he has been doing this past week. As we were leaving we were advised that the program is still working on getting him into an employment site for the summer, but that the site they are coordinating with is looking at a potential for lasting employment beyond just the summer program. If this works out, Shawn could be working at a recycling center, so fingers crossed. Next week we will be having him spend some of his down time on Sunday with us—likely going to visit family. The mentors and staff suggested that he may well be excited for that as a break from the very busy schedule that he maintains during the week. So we have counted fingers and toes, and he is doing well. There were some bumps along the ride so far, but that is expected while he is settling into his new surroundings.Already we are seeing some changes, small things that lead to bigger things. Thank you for your encouragement and continued support of Shawn. Jim, Katheryn, and Shawn
Shawn has gone from 97% spike and wave activity to Seizure Free since 2009
I kept a journal to update friends and family when Shawn was having his worst seizures. I'm linking the blog posts in order below.
We are so thankful that Shawn is almost 4 years Seizure Free now, and we thank his doctors and the VNS for that. Thank you Dr. Matt Troester and Barrow Neurological in Phoenix, Arizona!
Shawn Getting wired up in the EMU July 2009
Click the link below to learn more about Shawn's battle with Epilepsy
Todayis the day that Shawn starts the Summer Bridge program.
Early this morning as I lay awake in bed with a million things running through my mind, I reflected on the progress Shawn has made in the 14 years since he became my son.
When he was 6 years old he could not yet use silverware, he ate everything with his hands. At 7 years old he had his first Grand Mal seizure and forgot how to identify colors and letters.
At 12 years old he had cascading seizures and had to be airlifted to Barrow Neurological hospital because nothing was working to get the seizures to stop. Shawn nearly did not survive the seizures. His doctor told us the he was surprised that Shawn remembered how to talk after the seizures. Shawn did have a lot of regression but he was still himself. While he was in the hospital recovering he had surgery to have a Vagus Nerve Stimulator (VNS) implanted and set up. The VNS helped reduce Shawn's seizure activity. At 17 years old Shawn had his first normal EEG. A few months later at a follow up appointment we found out that his VNS was no longer working. Now Shawn is approaching his 4th year of being Seizure Free. This morning Shawn came to tell me his alarm went off and that he needed to get ready to move to the dorm. While he was getting ready this morning he mentioned the dorm in almost every sentence he said. Now he is moved in and we are at orientation learning what his schedule and what his life on campus will be like. We never thought we would be sitting here! Thank you all for your generosity and support of Shawn in his path to independence. ~Katheryn
It started with small changes, little things that we noticed were changing with Shawn. He was growing up, right before our eyes. Then suddenly the changes seemed huge, as though he grew up overnight and matured into a learning and independent young man. Shawn is entering into his next stage of transitioning from being a student with special needs to being a young adult in the world. Those who know him know he has some challenges that many others do not. He has lived with his diagnoses of moderate to severe cognitive impairment, global seizure disorder, and autism spectrum disorder-yet overall he maintains a pretty positive outlook on the world. We were interviewed for the WBRC Fox 6 News story on the Summer Bridge Program.
Shawn has made huge gains in the last year with his transition program at CrossingPoints interacting with typical college students and learning more independent living skills. Some examples have been his work experiences at the University of Alabama student recreation center and his performance as the Scarecrow in The Wizard of Oz. This summer he is taking the opportunity to live as a college student with the Summer Bridge program through CrossingPoints.
Most of us know that anything with the word "university" in it means "expensive," and this is no exception. While the program itself has several grants, Shawn still has to pay for Housing, Books, and tuition for any regular College courses he takes. However, unlike a regular college program, Shawn cannot receive any Grants, Scholarships, or Student Loans to cover these expenses. That is where this fundraiser will help. Even small donations can help! Shawn's family has long been supportive of him, and now is no different, but while we thought we were helping, it seems that we have been holding him back. In the past year his growth has been more than was ever expected, and this opportunity at the Summer Bridge program has potential to make so many positive differences in his life. This program has the possibility to dramatically change the trajectory for Shawn's future. It will help him develop more independent living skills, and potentially, give him the skills to live on his own. The monies collected here will pay the tuition and some of his living expenses for this tremendous opportunity. Any money raised beyond those goals will be put into an ABLE savings account for Shawn to use for future education and supports. We thank you for whatever you can do to help him out. James and Katheryn Meadows
I realize that it has been a while since we posted any updates on Shawn. Sadly, no news is good news, does not apply. Shawn still does not have a job, even though he really wants to work. My heart hurts every time he asks me when he will go back to work at the recycling center, tells me I used to work there, or talks about wanting to take the bus to work.
