It was during the summer of 2007 when I noticed something was taken over my son’s body. A beautiful day to be sitting on the sidelines at Football Camp, I noticed while Kenny was working on the drills that he began to bob his head, stretch is his neck out to the side, look behind him, and arch and twist his back all in succession. Then, it happened again a couple of minutes later and continued throughout the practice off and on. I knew right away that Kenny had Tourette Syndrome and mentioned to my husband Jeff during practice “I think Kenny has Tourette Syndrome!” As usual, Jeff said “He’s fine. He is just excited to be at practice.” Of course, whenever my husband tells me things are fine and that I need to relax that’s when I get even more worked up! At any rate, the movements continued sporadically throughout the summer and when September rolled around with Kenny’s 4th grade year going into full swing, the sleeping vocal giant made its grand entrance one day in middle of our living room with the word “GOT” being yelled out at the top of Kenny’s lungs every 10 seconds or so for the rest of the day. I then looked at my husband and said “You think he has Tourette’s now?” Obviously he knew, and so our journey into the TS world began.
Now it was time for parent teacher conferences for both of my sons a couple of months later in the fall of 2007. Kenny and I were waiting our turn outside of Kenny’s 4th grade classroom and I so vividly remember looking through the window at a Mother and her daughter laughing with the teacher, so relaxed with not a care in the world. Of course this family had nothing to worry about as their children (2 girls) were both brainiacs getting straight A’s in everything! We on the other hand, were struggling on the opposite side of the spectrum due to not only Kenny’s diagnosis of TS, but also my younger son Cody’s diagnosis with Autism. Earlier in day, I had just attended Cody’s conference and it was obvious I needed to find a new home for my little Cody Bear as 27 kids and one teacher for his Kindergarten experience was not going to cut it.
When it was our turn to meet with the teacher, I faked my way through the conference as the school required my son to attend it with me, so I couldn’t really discuss my concerns with his teacher as I did not want Kenny to worry. It was just a waste of time really. So we shook hands and just as we were walking out the door who should be next?, but yet another brainiac family with big smiles on their faces. That’s when I completely lost it! We were sandwiched between the two smartest kids in Kenny’s class and it was just plain depressing. So I just cried all day that day. This day was one of the lowest points for me in trying to figure out “Why us and now what do we do?”
As night approached, exhausted from crying and thinking too hard, I decided to zone out in front of my computer and check my email. I received an email that night from my dear friend Mrs. Washington America 2007, Jennifer Adkisson. You see, earlier this same year I competed my first time for the title of Mrs. Washington and ended up out of 28 ladies placing 1st runner-up to Jennifer. I was her back-up and now she would become mine.
Out of the blue with no clue on what I had been going through all day (hadn’t spoken with her for a few weeks), she sent an email encouraging me that even though I was distraught with tears of grief all day, God had a plan for our family. She reassured me that my marriage would minister to others someday. In the end, she made a statement saying the Lord spoke to her to relate to me that we (my husband and I) are the parents that the Lord had chosen to raise our boys. The email was signed “Love Jesus!”.
Needless to say, both my husband and I were taken back. That moment was a turning point directing us now into our journey of advocacy. Who would have thought that a beauty pageant would bring me to meet a sister-in- Christ whose beauty ran much more than skin deep? It lived in her soul. It was the presence of the Holy Spirit!
It wasn’t long after this prophetic message, that I was able to find a home for Cody in regards to his educational setting through the school district. After school shopping on my own and advocating with the school district, I was able to find the perfect classroom and teachers to meet Cody’s needs. Cody became a Lakeview Hope Academy Student in the Functional Academic Class with other children with special needs. As the school’s name suggests, we now had hope for Cody.
As for Kenny, I decided to go into his classroom every day for the next two years to help with his transition from the resource room to the classroom. One teacher and 25+ students just didn’t give Kenny the extra support he needed when re-entering the classroom after being pulled out every day for his resource services. One thing that was to our benefit when he began to show symptoms of having TS is that he was already on an I.E.P. (Individual Education Plan) since Kindergarten under the classification of SLD (significantly learning delayed), so at least we had some room to think outside of the box right away rather than having to wait to implement strategies that an I.E.P. provides. Yes, I could have fought for a Para Educator to help with this transition, but to be honest with you it was better if I took on that role since I was already wallpaper at the school anyway due to being so involved with the P.T.A.. If Kenny would have had a Para following him around all day, that would have made him even more self-conscious for sure.
In the fall of 2008, we were finally able to get an official diagnosis from a neurologist who specializes in TS at Swedish Family Hospital in Seattle. In order to be officially diagnosed with TS one needs to have both a motor and vocal tic for at least a year. It is actually common for kids to have some tics while growing up. I believe that is why the year stipulation is put in place. Kenny himself had the eye blinking tic, facial grimacing, and clearing of throat every now and then since 2d grade. The doctors originally told me not to worry. I guess that is why I was able to diagnose Kenny so quickly myself as I already did my research on tics and the difference between common tics and TS tics.
After the diagnosis, the Dr. prescribed Guanfacine for Kenny. It is actually a medication for high blood pressure and ADD, but has also been found to help with tics. Our dose was very minimal given three times a day. It did help somewhat, but could make Kenny sluggish. Previously we had given him supplements from a company called Bontech and that helped, but Kenny had to take about 20 pills a day for that and the magnesium in these supplements made him very gassy. Nothing seemed to come without side effects!
Jump now to June of 2009, we made it! Kenny graduated from Elementary School and now he was getting ready to move up to Middle School! Kenny was so excited, that is until he found out he would be placed into Functional Academics like Cody. At the time, Functional Academics at Hudtloff Middle School was a self-contained classroom in a portable, away from the building, separated from his friends. He was devastated. He started to have major panic attacks and would just be incapacitated. I would get calls from him every day from the nurse’s office. At one point, Kenny’s anxiety got so bad that he even stopped eating food due to my sister making this comment one time after he ate some ice cream “Well, if he didn’t have that ice cream he probably wouldn’t so anxious with all that sugar!” Now that comment put his OCD (Obsessive Compulsive Disorder) into overtime. Kenny was now afraid to eat food. He would only eat bananas and crackers. It took me about 3 months to get him to eat regular meals again! In that time frame he lost about 10 pounds.
At any rate, although the self-contained teacher was great and the way he taught the subjects were hands on at Kenny’s level and pace; it was obvious this placement was socially not appropriate. The kids in this classroom also had some behavioral issues which Kenny was not used to being around even though he himself lives with an autistic brother. I tried to get him transferred into the Resource Room which was housed in the main building, but the rest of the I.E.P. team didn’t think Kenny would be able to keep up academically. As a result, I pulled him out to home-school while still driving him back and forth to school every day so he could eat lunch and attend his elective course with his friends. Thank God for Kenny’s friends! One thing I am so thankful for is that Kenny has never been bullied because he has always been surrounded by great friends.
As time went on his OCD, anxiety and depression continued to get worse. He would cry every day, cradling himself onto the floor in a fetal position afraid to do anything, saying he wished he was dead. There were even a few times we had to make trips to Urgent Care or the Emergency Room to make sure Kenny wasn’t working himself into an asthma attack. (Kenny had RSV when he was five weeks old so asthma is something Kenny has had to deal with ever since. I am happy to report he is growing out of it now!) We eventually resorted, reluctantly, out of desperation to get Kenny on OCD medication as suggested by his neurologist. Kenny was eventually prescribed Luvox at a very low dose. This seemed to help keep his anxiety somewhat under control.
However, during this time, I will never forget one night after finally getting Kenny to sleep (Thank God for melatonin – otherwise Kenny would be up until 2 a.m. not being able to fall asleep due to his tics keeping him awake.) I was in our utility room doing laundry and I just fell down to the floor in anguish wondering how I was going to help my son. Seeing my desperation, my husband held me and drove down his spiritual sword into the foundation of our home and laid claim to our household as one that will serve and trust the Lord knowing that God had a plan and purpose for our pain. So we prayed on our knees, for the Lord’s wisdom, discernment and guidance to make it through the storm. That was the turning point for my faith knowing that God did have a plan for our family, our marriage and our son. That week I took my son to see our Pastor at our church to be prayed over and to discuss practical spiritual strategies to help redirect my son’s thoughts and heart into a right place with the Lord.
Next, it was time to get some professional psychological help. I contacted my insurance company to get a waiver to see George Lynn (not listed as a preferred provider with our insurance) in Bellevue. George is a psychologist who specializes with children diagnosed with Autism and Tourette Syndrome. Of course, they denied my request and proceeded to do their own research in finding an appropriate counselor for my son. Well, their idea of appropriate ended up being an Adult Addiction Counselor! Obviously that wasn’t going to work, so I called them back and reiterated that my son needed a counselor who specializes in TS. Come to find out, the insurance company did not have Tourette Syndrome or Tic Disorder in their search engines for counselors. In the end, the insurance company called my back to get George Lynn’s information and ultimately approved my original request. Lesson learned – always think outside of the box, do your own research, don’ t take somebody else’s word as the end-all, and never give up when it comes to advocating for your child not only educationally, but medically as well.
Once we got approval, I didn’t hesitate one second to get Kenny in to see George Lynn. Even though the drive was over an hour one way – it was so worth it! Kenny started to meet with George once a week for about 3 months, then a couple times a month the next 2 months, and then once a month for a few more months. What a God-send those counseling sessions were! Kenny now began to feel he wasn’t so weird after all and there was hope.
Now remember I mentioned earlier about the prophetic message my friend Jennifer (Mrs. Washington 2007) shared with me about the Lord someday using my family and my marriage to minister to others someday. Well, finally after four consecutive attempts, I finally was crowned Mrs. Washington 2010! In 2007 I placed 1st runner-up, 2008 I placed 3rd runner-up, 2009 I placed 2nd runner-up and 2010 God gave me the green light! Don’t ask me why I kept competing, other then I think it was God’s calling. I am not your typical pageant Beauty Queen by any means. My every day dress is jeans and a baseball cap and we live very modest in a 3 bedroom/ 1 bath 1,000 square foot house (However, it’s my castle since it affords me to be a stay at home with my boys!). Little did I know just how much God would use the title to His Glory in ministering to other special needs families.
After I heard my name called out as the new Mrs. Washington 2010, I was in shock and just burst into tears. The reason behind my tears was knowing that the next year was going to be a good year for my boys! I knew God would not allow me to win unless it was the perfect time. You see, this was the first year that I competed with my platform being centered around my children. I was finally making public our personal journey as a family in the special needs world. My platform was and still is to this day “Embracing the Special Needs Child”. Previously, my platform was based on my involvement with military families being a military wife myself. However, this year I felt a tug on my heart to share our special needs story. I was taking a leap of faith here as I wasn’t sure how my kids would handle their diagnosis being on display before the public eye. I didn’t want them to feel like poster children; but yet I knew if I didn’t set the example for my boys as a Mother advocating for her children, how would they ever learn to advocate for themselves? This is why I believe, each year God was saying as I placed runner-up “Your close my daughter, you are on the right track…just keep on trying, have faith, and when the timing is right…the door will be opened!”
About a month after I won, it was time for Kenny to head to Boy Scout Camp for his very first time without Dad or Mom – well, at least for the first couple of days until Jeff got back home from a trip out of town. Jeff wouldn’t be able to get to the camp until the middle of the week. I was so worried about sending my baby off to camp without either of us, just wondering if his anxiety would act up making his tics get out of hand. However, as it turns out I was more nervous than he was. He ended up being a model scout and had a great time! In fact, even though he has had difficulty with reading and comprehension, he was the only one at scout camp taking the Space Exploration Merit Badge class to successfully put together and launch his own space rocket! This too was a major turning point in Kenny’s road to recovery. This experience of building his confidence was a great way to prepare him for his upcoming 7th grade school year as a full time student again. Boy Scouts has definitely served as a lifeline for both Kenny and Cody. Even though they have struggled academically as a result of their diagnosis, Scouts has allowed them to flourish by developing both leadership traits and confidence through being exposed to life skills and a work ethic which you don’t necessarily get at school.
Kenny’s 7th grade year proved to be one of great strides and success. After convincing the I.E.P. team at school that Kenny needed to be moved up to the Resource Room rather than be in the functional academics classroom, Kenny had a much better school year experience as well as great teachers. Due to the Resource Room being composed of students from all three grade levels of 6th, 7th and 8th, I had to have the teachers and school administrators continue to think outside of the box to make sure Kenny attended lunch with his 7th grade peers and not with kids from the other grades. Schools usually don’t tend to think about the social aspect when making decisions on academic placement for a child. That itself can make or break whether that child will thrive or dive.
Even though Kenny at this time is successfully now enrolled as a full-time student, his tics (especially motor) are definitely increasing. His latest motor tics are now to walk in circles and jump backwards. He seems to keep them at bay at school, but when he comes home they are let loose! Of course, this is common among many people with TS. They tend to mask their tics in public as much as possible and then when they feel they are in a safe and comfortable environment such as home they let it all out. It is especially hard for TS students to complete their homework after school as result of this release.
Because of Kenny’s increasing tics, my husband Jeff and I decided to finally follow through on an alternative treatment for TS that he had been researching and investigating for the previous 6 months. This treatment required Kenny and I to fly to Virginia/Washington D.C. to meet with the TMJ Specialist Dr. Brendan Stack who discovered and founded a new approach to treating movement disorders to include TS. Basically, in lament terms, Dr. Stack found that after years of treating people with TMJ issues, he found that a good percentage of them also had some sort of movement disorder (TS, Dystonia, Parkinson’s etc.). However, he also noticed that once these TMJ issues were addressed and treated, many of their movement symptoms diminished. Realizing that this was not a coincident, he invited a fellow TMJ Colleague Dr. Anthony Sims to join him on doing more research on this discovery.
Basically, Dr. Stack and Dr. Sims discovered that Tourette Syndrome in their conclusion is caused by a derangement of the TM joint. This new treatment for TS makes use of a properly fitted mouth appliance to make adjustments to the TM joint and thus relieve pressure on certain nerves to the brain. This treatment has been proven successful on many patients to include our son Kenny. After taking a chance to check this alternative treatment out for ourselves in November of 2010, I can honestly say our lives as a family dealing with TS changed…and for the better!
Right away after receiving the retainer from Dr. Stack, Kenny experienced immediate relief. I remember the first thing he said after the retainer was placed in this mouth and adjusted “Finally, my eyes aren’t rolling to the back of head!” As his mother, I also noticed an immediate peace come over his body and he finally took a deep breath and relaxed his muscles. Even though my husband and I knew we were on to something when we did a trial run at home by sticking a wooden spoon into Kenny’s mouth to open up his bite during one of his bad tic episodes, I just was elated to see the benefits of this treatment in person face to face. It was amazing to say the least!
Anyway, since then we have experienced about an 80% improvement in Kenny’s motor tics! We also noticed a huge improvement in his vocal tics, rage, anxiety, depression, and OCD symptoms that often accompany TS. We even were able to take Kenny off of his Guanfacine medication and eventually he wasn’t so sluggish anymore as a result. Kenny basically wore this device 24/7 for two years straight with of course adjustments made by a local TMJ specialist and even had to have it rebuilt due to his growth spurts. Just a few months ago we transitioned to the next phase of treatment which includes getting braces. However, this has to be addressed with an alternative approach in order to keep the TM joint in the proper alignment that was achieved by wearing the retainer. So basically, we are in the middle of our journey with this treatment. In the future I plan on starting another blog documenting our experience, but until then you can refer to my post from my Mrs. Washington Blog for pictures of our trip and more information. Please keep in mind, that this is what worked for Kenny and we are just merely sharing our experience. I have met others with TS where they could not be helped with this treatment. Click on the following link if you are interested in learning more: (http://www.mrswashington2010carlarichards.com/2010/11/trip-to-virginaia-to-seek-alternative.html). You can also visit Dr. Stack’s website where Kenny is featured as Tourette’s Case number 5: (http://www.tmjstack.com/) .
Being especially busy this year promoting my platform “Embracing the Special Needs Child”, the Mrs. Washington title opened up a lot of doors for awareness with both Kenny’s diagnosis of TS and Cody’s Diagnosis of Autism. One of these doors included Kenny and I starting a support group for special need families in January of 2011. My best advice for anybody struggling through tough times is to reach out to others. In other words, “The best way to get out of your pity party is to help others and get your eyes off yourself!” So that was my strategy to not only help Kenny and our entire family recover, but to also help other special needs families going through this similar journey as well.
The very first support group consisted of three people to include Kenny, myself and our Chapter President of the Tourette Syndrome Association of Washington and Oregon, Todd Henry. Today, two years later, we are averaging about 30 people at our support group with new members joining every month. What makes our support group unique is the fact that we include the whole family. In other words, we do not separate the adults from the kids; rather we have the whole family unit participate. After attending the National Tourette Syndrome Association Conference last year, Kenny and I found out this was a first among TS support groups. (Even though our group is under the umbrella of the TSA of WA/OR we invite other diagnosis as well to include Autism, ADD, ADHD, OCD and other co-morbid conditions). Our mentality in keeping the support group family focused is so that the information shared can benefit each family member and thus bringing the family closer in dealing with whatever diagnosis they are struggling with. However, we do have adult only meetings every three months. During those months I schedule special Kids Day Out events as the kids miss not being able to see each other at the support group meetings. Some of the events we have had include hiking, bowling, ice skating, putt putt golf, laser tag, and visiting the pumpkin patch. At our last event we had a dozen kids participate and we always have a blast!
How we came up with this approach for our support group was actually born from my own involvement with a TS support group that I joined in 2009. This particular support group was an hour and a half drive one way (Of course I would have driven across the state if I had to, I was so desperate!). This was an adult only support group and childcare was not available. Although the leaders were wonderful and meeting other adults was great, I just felt something was missing. Plus, I always felt weird walking down to the meeting room when there would sometimes be kids in the hallway working on their homework or playing on their portable video games while their parents participated in the support group often talking about them.
One month I found out from the support group leaders that their daughter with TS was going to be attending the support group due to her being home from her first quarter of college on break. Since Kenny has never met anybody with TS, I asked if it was okay to bring Kenny to the meeting so he could talk with her. Of course, they were more than happy to have him attend. It was fascinating for me to see Kenny converse with another young person with TS displaying both facial and vocal tics. It was so therapeutic. Matter of fact, Kenny enjoyed it so much he wanted to come to the next meeting and so he did. That particular meeting actually had about 12 adults present and Kenny loved participating in the conversation. By the end of the meeting, he was the one encouraging the parents and giving them hope! Out of the mouth of babes! The adults were so amazed by Kenny’s willingness to participate. It was healthy for them to hear from another child that what their own child was feeling and experiencing is normal considering the circumstances of being diagnosed with TS. Wow, and so the vision for our own support group was born!
Our support group meets the first Tuesday of every month at a church and usually starts out with a meet and greet time. We then go into announcements and introductions which usually lead into discussions on concerns or struggles families may be facing. While the adults are sitting in a circle exchanging their thoughts, the children are usually sitting/playing together next to us getting to know one another at the Lego station, play dough station, puzzle station, or drawing station that I have set up around the room. Often the older kids, teenagers, sit with us and like to participate in the discussion a bit more. The younger kids still jump in on the discussion whenever they want to add to the topic as well. I make sure to have snacks that are low in the sugar content as well. (I learned that the hard way when we had cookies and donuts at one of our meetings! The kids became quite hyper after indulging their sweet tooth!). Finally after an hour of discussion, I take the kids down to the gym to play games and do relays for about 20 minutes. That seems to get all of their jitters out before the car ride home. During that time, the parents have a chance to get to know each other a little bit better as well. What an amazing journey this has been while meeting some incredible families! Little did we know how blessed we ourselves would be with the priceless friendships made in the process. It has been so beautiful to see the transformations especially among the children just by them knowing they are not alone! God is good! To learn more about our support group please refer back to our home page and click on the Support Group tab!
About a month after we started this support group, Kenny was chosen on scholarship to represent the TSA of WA/OR Chapter at the National TSA Youth Ambassador Training Program which is held every spring in Washington D.C. . The timing couldn’t have been more perfect as that March I finished my reign as Mrs. Washington 2010 and now it was Kenny’s turn to become the advocate by becoming a TSA Youth Ambassador. Basically, I passed on the crown to my son and we flew to Washington D.C. to start our Ambassador Journey.
The purpose of the TSA Youth Ambassador (YA) program is to spread tolerance of and understanding about TS. The teen and their adult parent or guardian comprise a YA Team – with the teen giving presentations and the adult helping with scheduling and other arrangements. This program trains teens to advocate for themselves and for others. It provides their peers and younger children with accurate information by going into classrooms, schools and clubs to teach understanding, sensitivity and tolerance of TS and its symptoms while displacing the myths and stereotypes that are often attributed to and associated with this misunderstood and misdiagnosed disorder.
One of the highlights of the Ambassador training is for the youth to make a trip to Capitol Hill to meet with their State Senators and Congressman face to face to discuss continued support and awareness of programs offered by the Tourette Syndrome Association as well as promoting TS Awareness. This was definitely one of Kenny’s favorite experiences while in D.C. He even got a chance to sit in our Congressman’s office chair – he loved that! The exposure and education he received through this training on how to become a TS advocate was amazing! However, I think the most rewarding experience for me was being able to see Kenny make friends with 42 TS Youth from all over the country realizing that he was not alone in his diagnosis with all sorts of vocal and motor tics on display. As a parent, it lifted a huge burden off my shoulders reminding me as well that we were not alone on this journey and that there is hope. We the felt like we were with family!
After arriving back home from D.C. , I am happy to report that Kenny enjoyed presenting at a few schools as a newly trained Youth Ambassador and he finished off his 7th grade school year successfully graduating with honors. It was nice to have a less busy summer that year before heading into Kenny’s last year of middle school – his 8th grade year.
Now we are into the fall of 2011 and this school year again brings up more challenges at Kenny’s school in regards to his schedule once more. Due to the school only have one Math & Science Resource teacher and one Language Arts & Social Studies Resource teacher for 3 grade levels as mentioned earlier, Kenny’s schedule did not provide the appropriate placement for his locker assignment nor some of his classes. First example, his Resource room was in the 7th grade hallway, so the school then appointed him a locker close to that class. I had to request he receive a locker in the 8th grade hallway – he was not a 7th grader, he was an 8th grader now! Also, the Resource Math & Science for the 3 grades was offered from 8:30 a.m.-10:30 a.m. during the same time of the 8th grade Elective and Learning Strategies class. So because of this, Kenny then would be sent to the 7th grade Elective after the Resource Math & Science class. As a result of his schedule being based on a 7th grade schedule, he would then also be sent to 7th grade lunch. Excuse me, for the last time I had to remind the school that he is an 8th grader not a 7th grader! His placement was not socially appropriate!
So how did I solve this?! I decided to go to the school every day myself to home school him Math & Science from 10:30 a.m. – 12:30p.m. so that he could attend his 8th grade Elective & Learning Strategies class in the morning and also be able to attend the 8th grade lunch in the afternoon with his friends. Yes, I could have fought for an individual tutor or Para, but to be honest with you that would have made Kenny even more self-conscious as I mentioned earlier. With his OCD, I know as his Mother what words or things not to say, how to covertly meet with him at school in a room designated for us during that time frame so nobody would know, and I also know his learning style. For us, it worked. I swear, time and time again school staff and administrations do not consider the social element when they are discussing academic placement for a student. If a child is not socially secure, he or she is not going to learn one thing if they are stressed out and depressed over their placement.
One of Kenny’s goals before ending his middle school years was to be mainstreamed with his friends in a general education class. So in February of 2012 I requested an I.E.P. team meeting to discuss making this a reality for Kenny. Like two years prior, when I requested to have Kenny moved from a self-contained class to the Resource classes, I met with resistance. The staff and administration again really didn’t think Kenny could handle it, even though he had already proved himself in the Resource classroom. The IDEA guidelines actually state that the schools are to provide appropriate education for special education students in the least restrictive environment. However, in order to make this guideline effective, the general education teacher is going to have to be educated on how to properly implement a child’s I.E.P. to make this a successful experience for the student. I understand the teachers are outnumbered, but when it comes right down to it – it is their job.
I remember when I was discussing Kenny’s desire to be mainstreamed in the Language Arts & Social Studies Class, the first thing the general education teacher said to me was “Well, after looking at all of Kenny’s accommodations here, it looks like you are trying to put a square peg in a round hole.” So I appropriately responded and told him “All you have to do is make the hole bigger, and that square peg will slide through just fine!” He then said “If we do this I just want to just make sure we have a life guard and life preserver in place.” I responded again by saying “Yes, you do have that…it’s called Kenny’s I.E.P. (Individual Education Plan)!”
Needless to say Kenny was approved to attend the class. After the first day, I checked in with the teacher asking if he had received a copy of Kenny’s I.E.P. and he responded “Oh, I don’t need to look at that!” So I then took the liberty to politely inform him that it is the law that he needs to have that in his possession as well as knowing what it states so he knows how to properly implement the accommodations.
Despite a rough start, the teacher actually did a great job with Kenny and Kenny really excelled in the class. Matter of fact, during the parent teacher conference, Kenny’s teacher commended me on what a great student Kenny was and wished all his students were like him. In efforts to prove himself to the staff and teachers, Kenny worked extra hard that semester and ended up receiving an A in the class!
Now we are into spring of 2012! Kenny and I had the privilege, thanks to the help of scholarships, of flying back to Washington D.C. again as the WA/OR State delegates attending the 2012 National Tourette Syndrome Association Conference. The week was packed full of training, education and most of all fun for both of us. I attended an adult track while Kenny attended a teen track on seminars dealing with all sorts of topics and advocacy tips relating to TS. Kenny also got a chance again to meet with our State Senator Legislative Aides and Congressman once more on Capitol Hill explaining to them the importance of receiving their legislative support to help us continue on with our mission in spreading TS Awareness both in the medical and educational communities. I was surprised that that the Senators’ Aides and our Congressman remembered us from last year and all of them quickly commented on how much Kenny had grown in a year!
The highlight by far though from attending the conference was Kenny being awarded the national 2012 Zak Hollis Youth Achievement Award due to his efforts in promoting TS awareness both as a TSA Youth Ambassador and Support Group Leader. What a huge surprise! The other three recipients/TSA Youth Ambassadors of this award for the 2011 & 2012 year are amazing young men whom Kenny is completely honored to be recognized and associated with. However, the most humbling thing about this award is the fact that it is named after a fellow Youth Ambassador and Eagle Scout who tragically was killed in a car accident at the age of 17 in 2007. Zak Hollis will forever be remembered and cherished for the national impact he made in reaching out to other youth in the TS world. What an amazing young man!
After we got home from the whirlwind of a trip, we jumped right into press releases and interviews with local newspaper reporters. After the word got out of Kenny’s national accomplishment, we were then contacted by our Washington State Congressman Adam Smith (whom Kenny met with while in D.C.) informing us that he would like to honor Kenny in the Congressional Record before the Speaker of the House of the Representatives. WOW! It is crazy to think that almost 3 years prior my son didn’t even want to live, to him now being a public speaker speaking life into others and being inducted into the Library of Congress! To top it off, Kenny was also recognized by our School District’s Superintendent with a Distinguished Service Award for reducing bullying in schools as a TSA Youth Ambassador, graduated with honors, and was the only kid to receive a standing ovation from his peers at his 8th grade graduation – that spoke volumes to the impact and respect my son had among his classmates. Needless to say, that was a priceless way to end Kenny’s middle school years after all of the heartache, tears and sweat shed to make it through the toughest years. Thank you Lord!
Making it to the finish line of the dreaded middle school years called for a celebration for our family like none other, so off to Hawaii we went that summer! We had a wonderful time making memories that will last a lifetime for all of us. We kayaked and swam with Dolphins, snorkeled with huge turtles, visited Pearl Harbor (We even got to welcome home sailors coming home to port from deployment! ) and the USS Missouri, attended a Luau Hau, visited Sea Life Park, Kenny learned how to surf like his Daddy, and Cody built an empire of sand castles on the beach! It was an amazing time!
After our trip, it was soon back to reality as it was time to head back to school…High School! How can that be? How am I a Mother to a High Schooler and a 5th grader already? Well, I decided to be in denial and packed Kenny his Batman lunchbox from his elementary school years. I was already to drive him to his first day of Pre-school! How exciting! Fortunately, I wasn’t able to follow through on that because Kenny’s Dad was here to save the day! Kenny made sure Dad stayed home from work that day to make sure I wouldn’t follow through with my dastardly plan. Kenny was a good sport with it all though and yes, don’t worry, instead of having to eat out his Batman lunch box, he was able to eat a hot lunch at school that day with his friends. At any rate, it was a good day.
However, good days didn’t last long for Kenny. A week after school started it proved that the schedule of 9 classes, dividing up 8 of those classes on alternating days and adding the 9th class on Thursdays, was a bit overwhelming for him. So needless to say we called a time-out and scheduled a meeting with the school’s special education coordinator. Eventually, came up with a schedule that Kenny could navigate. This year we had to do more than just think outside of the box, we basically had to just throw away the box all together! I am pleased to say though, we have found success with this approach and Kenny is able to be independently challenged yet supported as much as possible. Of course, this doesn’t come without constant supervision and communication with the school and teachers. Most of the teachers are pretty good about working with me and appreciate my hands-on approach. However, there is one that makes it difficult at times, but I just keep pressing on trying to make the teacher realize that communication is the key to Kenny’s academic success. I am trying really hard to allow Kenny to be responsible for his own education, yet also give him guidance and be there as his coach along the way. It’s a full time job! I am just so thankful for these past few years in dealing with Kenny’s TS, that Cody has had the most amazing teacher. Next year may present itself a different scenario though with Cody going into his dreaded middle school years. We shall see!
I am pleased to report Kenny survived the first semester of High School with all A’s and one B! It was tough though! We also decided to take Kenny off of his OCD medication Luvox as a result of realizing it was actually making his OCD worse. My theory is that medication which may have worked before puberty can sometimes cause the very symptom you are trying to treat after puberty. With all of the hormone changes Kenny went through, it’s no wonder his body would pose an adverse reaction.
Kenny also played on his High School Golf Team and really improved his Golf game! He recently tried out for the Baseball Team, but sadly didn’t make the cut. I was very pleased though at his resiliency to just enjoy the experience and bounce right back into wanting to train for the upcoming football season. Football is his first love of sports. He has a lot of work ahead of him. As a result of his years of struggle in dealing with TS, his opportunity to develop his baseball and football skills over the past few years were basically robbed of him, so that has put him behind a few years. Oh well, it’s all about the recovery!
At this time, we are approaching spring of 2013 and Kenny is a couple of weeks into his second semester. We have added another mainstream class to his schedule and so far he is doing OK.
Kenny just got back from a weekend snow camping trip with his Boy Scout Troop competing in the Klondike Derby, so we have some catching up to do with homework he is behind on since we didn’t have the weekend to work on it. One day at a time!
On this note, I am happy to inform you that Kenny is now a Life Scout with Boy Scouts. Matter of fact, Kenny will be featured nationally in the upcoming May 2013 issue of Boys Life Magazine highlighting his accomplishments as a TSA Youth Ambassador and Support Group Leader. We are so excited! His next rank that he is working towards is Eagle Scout! He has been in Scouts for almost 9 years now! I can’t believe how fast time is going by. At any rate, Kenny has chosen for his Eagle Scout Project to host an I.E.P. refresher training course for our general education teachers to include neighboring school districts. He will also be one of the speakers at this event giving his presentation on Tourette Syndrome Awareness. His purpose in choosing this as his project is to help other special education students avoid some of the road blocks he ran into when trying to receive an appropriate education for himself during his years of schooling. He especially wants teachers and school administrators to realize the psychological implications that can occur when a child’s social well-being is not being considered when deciding on an academic placement for a child with special needs. So far, things are falling into place nicely for this event. If you would like to attend this training, please check back to find out more. I will soon be attaching a link to this Blog with more detailed information!
Well, I hope our story has shed some light on what a family can go through when dealing with a special need diagnosis which in our case deals with Tourette Syndrome, Autism, and the Co-morbid conditions that often accompany these neurological disorders. I hope and pray that sharing our story has given you encouragement, some direction and most importantly hope for whatever struggle you may be forced to endure in your life as well. Sometimes we ask “Why me?” but then again we have to remember “Why not?” My answer is and always has been to both of my boys is “God has a plan!” We just have to trust in that plan and have faith to press on. Some of the greatest leaders in the Bible had plenty of challenges and struggles…and that is what made them so great. Life is a refining process, molding us into something we never thought possible!
Finally, thank you for taking the time to visit this Blog. Again, I hope you were blessed. I will continue to update this story as well as the Blog periodically. Remember….”It’s all about the recovery!”
Mrs. Washington America 2010
South Sound/Pierce County TS/Autism Support Group Leader