Mr. K’s Advocate

A parent with a special needs child instantly becomes an Advocate. You learn the job through trial and error. Advocating is hard work. It can be emotionally and physically draining. As an advocate you ONLY settle for solutions. A can NOT attitude and NO as an answer is NEVER acceptable. You keep pushing, researching, and discovering techniques/ solutions to get the best result and answer for your child. An advocate will not leave one stone unturned. For me, the 2021- 2022 school years has pushed my advocacy to the next level.

Background

My youngest son Kenden has Autism. He was diagnosed at the age of two years old. He is now 10 years old. I’m proud of all the progress and achievements he has gained over the years. However, This current school year has been a struggle for him. Continuing development is important for Kenden’s needs. His overall goal is to become independent as possible. That’s why it is imperative for all involved in his medical care and education to be on the same page to produce the best outcome for his overall success.

Tough Decision

Four years ago I made a tough decision to place Kenden in a therapeutic behavior classroom. His IEP ( Individualized Education Plan) team and I agreed the classroom would be best because of his physical behaviors. He will hit, bite, punch, kick, and throw objects. When he displays unsafe behaviors it hinders his ability to learn. The classroom gave him a one on one setting, a classroom with 2-3 other students, and trained staff that could provide a safe and controlled environment. Overall, Kenden did very well. So well, he was able to be included in a regular special education classroom from time to time. It was confirmation the classroom was the best decision and choice for him.

Fed UP

Less then a week before the 2021-2022 school year the school district disbanded the therapeutic classrooms throughout the district because of staff shortage. I understood the decision but I knew it wasn’t best for Kenden. As expected, school wasn’t going well for him at all. Lots of changes and new news led to him feeling overwhelmed and out of control, causing unsafe behaviors. Expressing and communicating his feelings and wants are difficult. Also, the ability to understand him when speaking can be challenging for the listener.

As his parent and advocate, I decided to take my concerns to his IEP team. I requested an IEP meeting. One of the members discouraged my meeting request. I was FINALLY fed up! Year after year working with the team, taking all of their recommendations, and doing what was requested had now become discouraging and disappointing. For me to request a meeting and it be denied fired me up! I did voice my frustration however it went unnoticed and unbothered. I emailed my local State Department of Special Education. They did intervene and tried to resolve my concerns but it still didn’t feel right. It was time the state knew the difficulties I have encountered with the district. I decided to file a formal complaint. I had a total of three grievances. After 60 days of investigation, the state found two out of the three grievances were findings and in violation of Kenden’s FAPE ( Free Appropriate Public Education).

The state required/ recommended the district complete training, mileage reimbursement, and make up OT services. After receiving the results of the complaint, I decided to hire an attorney. I wanted an expert on special education laws and to make sure the district follows through. After a couple of meetings, we finally came to a resolution and a new plan for Kenden.

Advocate Strategies

As stated above, advocating is hard and time consuming. Sometimes I always wonder where do I start?! Here are a few tips I utilized to get the best results.

Communication- I put ALL concerns, issues, and questions on the table. I want the IEP Team to do the same. I want to have an open and honest dialogue.

NEVER sign documents until FULLY understood- I consider K’s IEP a legal binding document. All are required to follow to the letter. No deviations can be made without it being in writing. If I don’t understand a document or suggested intervention, I don’t sign.

Utilize local State Special Education Dept- I have found, my local state dept will help schools and families with resources and knowing your legal rights.

Common Sense- Like Judge Judy says “ if it doesn’t make sense, it’s usually a lie.” If it doesn’t sound right, I go with my gut feeling. I want to ensure everything recommended is for the best interest of Kenden.

Don’t feel intimidated- As the parent, we are the leaders and head coach of the IEP Team. Everyone has their role and job however you know your kiddo best. Your considerations and recommendations are valuable.

Conclusion

I have included Vanderbilt Advocacy Class and the results of the state’s findings( 2021-2022 school year)

https://vkc.vumc.org/vkc/services/project/volunteer-advocacy/

Click to access AC_21-22_14_Sumner_Web_Entry.pdf

Mr. K’s 2021-2022 School Year

Sudden Change

Kenden started school at age 3. He has always had ups and downs and many hurdles. However, the 2021-2022 school year has been the hardest and most difficult school year for the both of us. I didn’t have a great feeling about this school year. Unfortunately… I was right! A couple of days before the school year started I found out he would be attending an entirely new school. I was beyond pissed. We were not given proper notice and I found out through a letter. I had no clue who the teacher would be and I was highly concerned about his regression because change is extremely hard for Kenden.

Working with the IEP Team

I immediately contacted his Special Education Coordinator. I expressed all my concerns and frustration about the unplanned change. I was told they had to close down all the therapeutic classrooms in the district because of the teacher shortage. I understood their dilemma but to remove Kenden from his school environment he knows and do it abruptly was WRONG! I was told all students would be required to go to their zone school. It made sense why they made the decision BUT I knew it was NOT best for Kenden!

School Aggression

I was uncomfortable about starting school because of the unknowns. I was concerned about his new teacher, staff, and Kenden’s overall experience. No one had the time to get to know one another and really learn the needs of Kenden. When school started it was rough. Kenden was displaying lots of behaviors and aggression, new staff in and out and lots IEP meetings to figure out new strategies. Throughout all of this, Kenden was stress to the max. His entire school world was turned upside down.

Kenden begin displaying and turning his aggression toward me when I would put him on the morning bus. I decided to request an IEP Meeting so we could develop ideas and strategies for successful mornings. I emailed his Special Education Coordinator and teacher to coordinate and set a meeting. The coordinator informed me that they normally direct parents to their outside therapist when there is a concern like mine. I made it known that I’m coming to you and any time a parent has a concern and is requesting a meeting it is their obligation to make that request happen. I expressed ALL of my frustrations with her. I was beyond done!!! For years I have done what his team have asked of me. I prided myself in being a workable and understanding parent. I felt when I asked for assistance and help it would be given. Unfortunately, it was not and I knew my help was no longer with the team. It was time I did something permanently to make changes for not only Kenden but other special needs students.

Contacting the TN Department of Special Education

I spoke with an investigator from the state. I told her that I was denied an IEP meeting. She offered to call the district, I agreed for her to call. The next day the Director of Special Education called me. To make a long story short, I was not happy with our conversation. She did offer me a meeting however I felt she was ONLY offering because the state called her. Right after our conversation, I completed the paperwork to file a former complaint with the state of TN. I believe in working with the district and school however 5 years of doing ALL they recommended for Kenden and the ONE time I want support it was denied pissed me completely off. It was time to move to the next level and get answers and solutions for my concerns.

I had a total of three complaints that I wanted the state of TN to investigate.

1. Denied an IEP meeting

2. Failed to follow behavior plan and transportation services

3. Failed to complete an Occupational Therapy assessment in a timely manner

My first allegation was denied. After the state called the district, the special education director did offer a meeting to me. However, she only offered because the state called. The second allegation was founded. There is no particular or certain way transportation should be provided for special education students but the district must consider and address the individual needs of that child. It is the districts responsibility to ensure ALL of their students get to school. Through this investigation, It was discovered restraints occurred and the district did not report them in the required timeframe. They reported them a month after they occurred. The last allegation was founded as well. State and federal law doesn’t give a specific timeframe to complete a requested evaluation but it must be completed in a reasonable timeframe. It had been 215 days of the time I gave consent for the OT evaluation and no evaluation had occurred. The State said that Kenden’s access to a free and appropriate public education ( FAPE) has been affected.

Conclusion

After receiving the findings I knew I needed to hire an attorney to help me. I knew I had done all I could do, I needed more force behind me. Thankfully I found a knowledgeable and fireball lawyer to stand with me. She not only had a passion for special education law but she was a parent herself. She understood the fight! The State of TN recommended the district do the following:

SCS must correct these violations by implementing the following corrective actions:

1. Provide training for all appropriate staff on the aforementioned regulations no later than 3/15/22;

2. Within ten (10) days of completion of the training, provide the department with the sign-in sheets of

participants’ names, titles, and schools;

3. Within 10 days of this letter, SCS must convene an appropriately staffed IEP team, including

Complainant, in order:

a) To review, discuss, and update BIP and ICMP and ensure FAPE is provided;

b) To address whether mileage reimbursement should be provided to Complainant for

transportation of Student on 9/21/21 and 9/30/21 if it is determined that Complainant provided

transportation of Student on these dates;

c) To review results of the OT evaluation and determine if compensatory services are needed; and

4. Within ten (10) days of the IEP meeting, have all appropriate teachers and staff read and sign in review of IEP, BIP, and ICMP:

5. Within ten (10) days of any team meeting, provide documentation to the Department of all team decisions under step #3 and evidence of step #4;

6. If mileage reimbursement is ultimately determined and agreed upon, SCS must, within ten (10) days of reimbursement of mileage payment, send to the department final signed documentation by Complainant verifying completion. Upon receipt of notice and documentation from SCS that these corrective actions have been implemented, the department will determine whether said actions result in compliance.

I met several times with K’s IEP team to discuss the findings. I appreciate that they acknowledged their mistakes and wanted to fix it. They did all the state recommended, reimbursed me for mileage, training for staff, and giving K the time he missed in OT. Overall we were able to come together and ensure Kenden received the best for his education needs. It was a hard school year but I’m so glad I filed the complaint. The complaint brought change and my prayer is it will help the next child.

I tell my story because WE ( parents, caregivers, advocates, professionals) need to speak up and report for the betterment of ALL! Yeah… I thought about removing K from public school but honestly no one would take him because of his needs AND he has a right to a free and appropriate public education. I was taught you don’t leave ANYWHERE until you are ready! Also, how does that help the next child?! If you call yourself an advocate I believe you are responsible to speak not only for your child but for ALL! I say to parents and caregivers if you want to leave public education that’s your choice but make sure you report what has occurred so it can help the next child! Not all children have the option to pick up and leave public education. It is our duty to ensure that we do all we can to improve and protect their education career. Overall, there are laws to protect our children in public education. Just imagine what difference public education will be if more of us took a stands!!

I am proud to say this 2022-2023 school year is a lot better. Yes, he still has rough days but his team is working tremendously hard to make school a success. They bend over backwards for K and I. I am forever thankful for all their efforts and what they do for my family. I’m glad to say we all want K to succeed and accomplish his goals.

10 Reasons Why I Love Mr. K

My forever baby has hit the double digits! He is 10 years old TODAY! Kenden is such a unique soul. I admire him and I’m thankful for his inspiration. To honor his 10th birthday I want to share with the WORLD 10 reasons why I love Kenden Andrew Carter!

1. Smile

For years he didn’t talk but he NEVER stop smiling. His smile puts a smile on your face. His smile makes LIFE better!

2.Strength

Dude has had LOTS of testing, procedures, medications, and medical scares. He ALWAYS conquers through. His ability to remove or forget about his pain is ALL GOD. His strength is amazing.

3.Love

Kenden’s love is so real and honest. You know when he loves you.It’s the BEST love ever!!!!

4. Food

I have been blessed to have a child with Autism that will eat or try anything you put in front of him. He eats nonstop and gains nothing!

5. Music

Kenden and I have a huge connection with music. I’m always blasting it in the car and he’s happy to sing along!

6. Determination

Kenden doesn’t believe in giving up. He will push himself above and beyond for whatever he has his mind set on. Sometimes he looks for a challenge to see just how far he can go. If Kenden is unable to succeed the first time he will find creative and alternative methods to accomplish what he wants.

7.Learning

Before Kenden started talking I knew he loved to learn. Reading and singing to him encouraged engagement. Currently, he loves the alphabet and the sounds of them. He loves to read and likes finding new cool educational Youtube videos! Kenden seeks learining and looks for the next hot topic to learn about.

8. Smart

Kenden is super smart. He will hold on tightly to what he knows and teaches it back to himself and to you. For years my ignorance didn’t allow me to see communication has absolutely NOTHING to do with intellect. He amazes me daily with what ALL he knows.

9. Unique

Kenden is a little boy with his own unique swag. He knows exactly what he wants and when he wants it. His character is unmatchable. He could care less what others think about him. He doesn’t alter the way he treats people even if they aren’t the nicest to him. What you see is definitely what you get. He is so truthfully honest and bold! He doesn’t believe in barriers because he’s a conqueror.

10. Play

Kenden loves to play. He enjoys school buses, lots of pretend play, bubbles and so much more. Watching him play with his toys is a total blessings. Years of ABA Therapy helped with play. His imagination is phenomenal. I’m always excited to see what he’s going to play with next.

Kenden is my inspiration. I’m thankful for him and all he has thought me. Happy 10th Birthday Day Kenden! I Love You!!!!

Mr. K’s Resources

I am ALWAYS on the hunt for resources for Kenden. It has been one of the hardest task because I may not have the time, don’t know where to start, who to ask…..the list goes on and on. However, I have been blessed to have a “go-to” list of resources. Many parents have reached out to me asking about Kenden’s resources. So I decided to blog about it!

Resource #1 -Teachers, Doctors, and Therapist

The most important resource I have for Kenden is his teachers, therapist, and doctors. They are a vital key to making things work and getting what he needs. They are there to write letters to his Manage Care Organization( Insurance), write the orders and prescriptions, and find resources that I don’t know about. It’s imperative you have a strong relationship and communicate with them so they can help you. Ask them ANYTHING and tell them ALL! Tell them what you are experiencing and going through so they can lead you to the help. Utilize them and pick their brain for ABSOLUTELY EVERYTHING! They have literally taken heavy loads off of me. I tell them the good, bad, and ugly. They know my struggles and victories. Even if you don’t know what you need, tell them straight up “ I NEED YOUR HELP!” If you don’t have a strong team of professionals, I highly suggest getting one. They are you and your child’s foundation to what you need.

Resource #2 – Home Health Services

I believe this is the best kept secret. A good friend of mine told me about Home Health Services for special needs kiddos. I absolutely had no clue my child qualified for this service. Kenden receives 40 hours a week of Unskilled Certified Nursing Services in our home. The nurse is able to go to any outing we have ( doctor’s appts, grocery store, etc..) and complete all of his activities of daily living ( bathing, cleaning, toileting, feeding etc…) This is a HUGE help and relieve for me. Kenden is unable to attend a daycare or after school programs due to his behaviors. Also, I am a single parent and it can be overwhelming doing everything on my own. Medicaid (public health insurance ) WILL cover this service. To obtain the service, your child’s doctor will need to write an order for services. You and the doctor can determine the number of hours needed based on the need of you and your child. The doctor will submit to your child’s insurance for approval. To locate an agency you can ask for a Care Coordinator through the child’s insurance. They will be able to assist you in finding agencies that can accommodate the hours the insurance approved. Home Health is NOT perfect! Sometimes it takes some time to find the right nurse for your child. Be patience and voice any concerns that you have with the agency and Care Coordinator. You do have the option to move agencies if you aren’t happy or not able to get the hours covered. In my opinion, home health is worth a try. It has been one of the best resources I have tapped into. Yes, I have gone through a handful of nurses however we have finally found the perfect fit through prayer and patiences.

Resource #3 – Incontinence Supplies

When Kenden was assigned a Care Coordinator with his MCO ( insurance), she informed me insurance could supply wipes and pull-ups. Medicaid will cover the cost of this service. To qualify, the child has to be at least 3 years of age. Your child’s doctor will need to write an order and send to the medical equipment company. Once it is approved, you will start receiving monthly supplies via mail.

Resource #4 – Special Needs Grants

Grants are used to pay for respite, medical equipment, special needs camps, school, and varies other needed things for special needs kiddos. I personally have utilized grants for respite and camp. Below I will list grants I currently have or utilized in the past.

1. Family Support Program– This is a program for children and adults with severe disabilities. Funds can be use to pay for respite, daycare, medical equipment, transportation, and varies other services to help the person with the disability and caregiver maintain in their home and community. This is a state funded program. To find out if your state has a program I would speak to your child’s therapist, doctor, and check out your local state’s website. If you live in TN the website is https://www.tn.gov/didd/for-consumers/family-support.html

2. Tennessee Early Intervention Service– TEIS was God sent. They set up services for speech and occupational therapy for Kenden. Also, they helped transition him into Special Education Pre-K. The purpose of the early intervention programs is to support families in the development of the child with disabilities. It’s an awesome resource for children up to 3 years of age. Your child’s physician or visiting your local state’s website will give more information about early intervention and the services offered to families.

3. Tennessee Respite Coalition– TRC has funding for families to pay for respite services. Families are responsible for finding their provider however TRC is able to give 600 dollars per calendar year. The funding CAN be use for summer camps. This is a TN ONLY resource. You can find more information on TRC at https://tnrespite.org/about/faqs/.

4. Autism Spectrum Disorder Foundation– ASDF has been amazing to my family. For two years in a role they paid the cost of Kenden’s summer camp. The goal of ASDF, is to provide funding that will benefit the needs of children with autism. They have several programs that families can take advantage of. I have personally utilized the Social Skills Summer Camp Scholarship. Thankfully each time I have requested funding they were able to assist. Each program has a timeframe for submission, please be mindful of that. It’s super simple to apply for funding. To learn more about ASDF visit their website, https://myasdf.org/about-asdf/. If possible, please donate to them. They really are a wonderful resource and asset to the Autism Community.

5. Varghese Summersett Autism Scholarship– Kenden was a recipient of this grants several years ago. He received 500.00 dollars that was used to pay the cost of summer camp. The purpose of this scholarship is to go towards the child’s education and recreational needs. It was not hard to apply. I had to send an email explaining how the funds would be utilized, get a letter of recommendation from a close friend, teacher, doctor, or family member, and submit a photo of Kenden. There is a deadline for submission. https://versustexas.com/autism-scholarship/ will give more information about their Autism Scholarship.

6. MyGoal Autism Grant- I believe it was 2 years ago Kenden received a grant in the amount of 1,000 dollars from MyGoal. The original purpose of the grant was to pay the cost of camp but it was already covered by ASDF. I was able to keep the money and I used it to open a checking and savings account for him. The purpose of this funding is to support families supporting and caring for an individual with Autism. Their application was a little more detailed compared to the other grants but it’s worth it. If you are able to donate to this organization, please do. They are making a huge difference in the lives of people with autism and their families. For more information go to https://mygoalinc.org/mygoal-autism-grant-program/.

7. Medicaid– Medicaid is public health insurance. There are criteria’s to meet in order to qualify. If your child has Medicaid talk with your child’s physician or call your child’s Managed Care Organization (MCO) to see what they will cover. Medicaid has paid for Kenden’s medical equipment ( car seat, bed, activity chair), nursing services ( CNA), and his incontinence supply ( pull-ups and wipes).

Recap

I do hope these resources are helpful. Again, it’s so vital to utilize your teachers, doctors, and therapist. They are your plug to what you need and want. Also, Google has been a huge help! A majority of these resources I found on Autism Speaks website. They have several others but the ones I referenced have been a successful for Kenden. If your child has Medicaid. Please reach out to their MCO ( Managed Care Organization) to see what services or equipment they will cover. You will be surprised what they can do. I have currently submitted for 24 hour care AND direct admission into the hospital for Kenden for my upcoming surgery. I am waiting for approval for both. If you have any resources please respond to the blog and share. look forward hearing your resources!

Mr. K’s 2020-2021 School Year!

Potty Training Mr. K

Potty training can be a very difficult life skill to teach children on the Autism Spectrum. For my household it has been a rollercoaster. Lots of ups and downs, bumps and bruises, and starting and stopping. However, I can FINALLY say Kenden is potty trained!

Training WIth ABA Therapist

Kenden started ABA therapy at the age of 3 or 4. The therapy was intense. They came to my home 2-3 days a week and he worked at their clinic as well. One of our goals to achieve was potty training. The therapist decided extreme potty training would be the best method of teaching. She told me to gather all of his favorite toys, snacks, music, books, tablet, and tons of underwear. They spend the entire therapy session in the bathroom. She used a timer to teach Kenden that was the time to go potty. Throughout the session, she would gradually increase the time he would wait to sit on the potty. While sitting on the potty, he was able to listen to music and the therapist would read to him.

If he used the bathroom or not, once the timer went off he was able to get off the toilet and have the opportunity to pick a preferred toy or object. Each time he got off the potty the timer was reset. When the timer went off he would go back on the potty. At the end of the session I was instructed to keep up the training. I was given the boost and start all I had to do was continue and I did.

Potty Training vs School

During this time he was nonverbal. The timer was essential to the training. I still utilized pull-ups. I would put them on top of his underwear during the day and at night he would wear without the underwear. He still had accidents but I knew the concept of toileting was understood. At this time he was attending Special Education Pre-K. I spoke with the teacher about continuing training at school. I sent a bulk of undies and snacks to school for motivation and incentive.

For a few months it was going okay at school. I did expect daily accidents but I started noticing his bag of dirty clothing was gradually increasing. After weeks of bags full of soiled clothing, I knew she wasn’t taking him to the bathroom regularly. I called an Individual Education Plan ( IEP) meeting after the teacher told me Kenden wasn’t ready for potty training. I saw red after our phone conversation. I was pissed to the fullest degree. All the hard work the therapist and Kenden did was going down the drain. After hours of going back and forth with her and crew of experts, it was decided that the potty training would continue. A few weeks after the meeting, the teacher decided to quit. So much regression had occurred and sadly I gave up! Unfortunately Kenden was back in pull-ups full time and has been for the last 5 years.

Potty Training……. Again!!!!’

For the last several months changing Kenden has been a total nightmare. He would display lots of aggression when it was time for a pull- up change. It was so bad his education team called a meeting so we could strategize, develop, and plan ways to get him to allow changing to occur. We came up with great ideas however it was still a struggle at school and home. I did speak to his teacher about potty training but I had no set plan in place to begin. I knew once I started I would need to be dedicated and consistent in order for it to truly be a success.

For his 9th birthday I decided to purchase underwear. I ordered them from Children’s Place along with a couple of outfits. When the order came in Kenden and I looked at the items together. When I pulled out the underwear I showed them to him and he instantly wanted to put a pair on. So I took them out of the package and I helped him put on. Since he was happy about having “ big boy undies” on I thought this would be the great time to try to potty train again. I followed the plan utilized 5 years ago and it has been a total success.

Mr. K’s Potty Training Tips

He still struggles to have a BM on the toilet, he won’t tell me when he has to potty, and getting him to go into the bathroom can be difficult. Kenden has approximately 2-4 accidents a day. The accidents are very minimal. His undies aren’t completely soaked. You can tell he stops himself. This definitely assures me he understands the concept. Parents have asked tips and ideas to get their ASD child potty trained. The following has worked for Kenden.

1. Timer

2. Lots and I mean lots of undies.

3. Preferred objects and toys for motivation.

4. ALL working with your child have to follow the rules and instructions in order for success.

5. Remember accidents will occur and it’s okay.

6. Dedication and consistency.

7. Take your time and don’t feel pressured to potty train.

8. Make toilet training exciting and give lots of praises!!

9. Remind and repeat the concept of toileting.

10. Allow your child to take the lead.

These are a few tips that have worked for Kenden. Honestly, he was the drive and push to start potty training again. He took the lead and I simply followed. I’m learning there is no right or wrong way for training. Potty training has no right age. It all depends on you and your child. Stay encouraged and know when it’s time run with it and don’t look back! My motto is “ God’s Timing Defines Autism”.

14 days of Virtual School with Mr. K

For 14 days I have been home with Kenden. Unfortunately we were exposed to someone that tested positive for COVID-19. When I received the text that we were exposed, I really had no clue what to do. I called the boys school nurses and they instructed me to pick them up ASAP. I was concerned about us testing positive but I was more worried about Kenden missing school. How could I explain to him he couldn’t go to school? He wouldn’t understand……

I picked up Jaylan first. I spoke with the nurse about the exposure. She told me Jaylan could return back to school after he received a negative test because he did NOT have direct contact with the individual. Whereas Kenden had a mandatory quarantine because he had direct contact with the person. After I got Jaylan, I picked Kenden up and his teacher told me to look out for multiple emails for virtual school instruction and setup. I literally let out a baby scream because I knew this would be a massive task to conquer.

The boys and I started our quarantine on October 13th. I had to stop Kenden’s nursing services due to the exposure. His nurse couldn’t return until he had a negative test as well as me and the boys. At least for the next 5- 7 days I wouldn’t have any help. The next day, the boys and I went to our local health department to be tested. They told us it could take 5-7 days to get our results. Also, I was given a number to call to check on the results.

October 15th was Kenden’s first day of virtual school. His teacher‘s setup was absolutely amazing. She provided a picture schedule for K and a Mommie schedule for me. I wasn’t required or felt pressured to follow the schedule but I utilized it more as a tool and guide. She kept his schedule similar to school. It not only helped K but me. The schedule helped me stay on track, focused, and movitated. I didn’t do everything on the schedule. I focused on what I knew I could handle. I spoke with his teacher about what worked best for me and she understood. It is vital I have a strong communication with his teacher. I have to have the support in order to help Kenden in school.

I was dumbfounded how his teacher worked with him. I knew Kenden was incredibly smart but to experience how he is taught was amazing. I noticed lots of repetition and restating the task. Also I discovered K can read. They worked on sight words, reading 2-3 word sentences, and learning new sight words. I was so proud of him and gained a new respect for his teacher. Kenden can be easily distracted and full of energy. Keeping him on task is a job in itself. She would work on academics for about 2-3 minutes and then give him a break with a preferred book. As you know, dude read along and knew every word in the books!!!!

Kenden reading and going over sight words

Kenden enjoys speech therapy and morning meeting. He has speech in school Monday -Thursday for about 15 minutes. His therapist focused on letter sounds through play. Morning meeting was fun to watch. He would shout out in class and loved to say hi to his classmates. In morning meeting the teacher went over the days of the week, date and month, rules of the classroom, weather, season, and discussed their feelings. The teacher used visuals for everything she taught. I loved that each student was recognized, had the opportunity to speak, and she ensured they understood the topic.

Morning Meeting

Speech Therapy

I am very pleased with the education Kenden is receiving. He has a teacher devoted and eager to work with him. I love her motivation, dedication, and innovation. As a Mom it is reassuring to know my child is in good hands. I enjoyed watching her work with him. Being at home for 14 days hasn’t been easy. I didn’t stop working so I jiggled work life while helping him in virtual school. As expected his behaviors and aggression increased. Kenden thrives in structure and being outside of the home. I did my best to provide structure but he really missed riding his school bus, walking to lunch, and hanging with his friends.

Kenden’s Special Tomato Activity Chair was so helpful. Without it I know virtual school wouldn’t have been successful. His teacher and I are working on getting him one for school. We had a meeting with his IEP team and she told them the chair is a game changer. They haven’t approved yet but I’m definitely fighting for him to have one in school. The chair makes a huge difference. Kenden is blessed to have a great teacher. I know it wasn’t easy for her but she handled it with grace and was a huge support for me. Parents and teachers have to work together during these times. It’s overwhelming and stressful for both but doable. I’m glad to say he will be returning to school Monday, October 26th. Kenden and I are looking forward to it!

Mr. K’s 2020 Progress Report

Several week’s ago I realized I haven’t blogged in over SIX MONTHS! So much has occurred since my last post. The entire world was on lock down. That was definitely an experience. Throughout that time, God really blessed and provided for me and the boys! I still had my job, I was able to work from home, and Kenden had nursing 5 days a week. It was scary having 3 different nurses in my home but I needed the help! I wiped down daily and made sure I had enough food in my home to offer the nurses. Mom and Mike ( stepdad) made sure we had paper towels and tissue paper. As you know they were hot commodities. Thankfully I have a mother that believes you can NEVER have enough tissue so I was able to shop for that at her home. She even offered tissue to Kenden’s staff. During quarantine everyone had to stick together and make things work.

Ms.P and Kenden reading “Cat in the Hat”.

The end of March or the early part of April our school system decided to shutdown for the remainder of the school year. Kenden’s amazing teacher, Ms. P did weekly zoom meetings with him. He looked forward to their time to talk and catch up. she would read his absolute fav, “The Cat in the Hat!” He knew every word to the story. She didn’t do any academics just strictly checking in. We both knew online learning was not the best structure for him. However, she emailed educational material. Ms. P had no concern about regression. As for me, I was just trying to survive and make it through each day. I could not add another thing to my plate. Ms. P has been more than a teacher. She has been our rock. This summer I had to fire a nurse. In the beginning of the quarantine I had three nurses. By the summer I had one full time person. I thought she would work out but I noticed a change in her attitude and demeanor with Kenden. I no longer felt comfortable with her in my home so I had to let her go. The day I fired the nurse I called Ms. P. I told her I needed help with Kenden until the home health agency could find replacement. She said “no problem and asked what days would I need her?” I was so grateful for her willingness to help me.

Last year I found a special needs summer camp. They were absolutely amazing to Kenden. They were able to accommodate his needs and handle his behaviors. I knew this was the place for him to be during the summer months. I signed him up mid March for his second year of camp. With COVID-19 and quarantine happening I was unsure if they would still have camp. I prayed it would still open. Kenden was becoming increasingly bored at home which leads to severe behaviors. They made the decision to open camp however they would only take 6 children. Thankful Kenden was one of the six kiddos. I was so excited but unclear how I would pay the cost of camp. Late February to about early March I applied for grants and scholarships to cover the cost of camp. When I got word camp was still on I had not heard from any of the organizations I applied for grants through. I prayed and asked God to find a way and he didn’t disappoint. The Autism Spectrum Foundation covered the entire cost of the camp. I paid absolutely nothing out of my pocket. After two weeks into camp I heard from My Goal Autism. They gave Kenden a 1,000 dollar scholarship to use on whatever he needed. Since camp was covered, I opened Kenden a checking and savings account.

Before the close of summer, the school system made the decision to start school on the scheduled return date. However, the first two weeks of school would be a hybrid schedule. That meant 2 days at school and 3 days at home. I knew that wasn’t the best learning style for Kenden and to make it worst Ms. P wasn’t returning for the 2020-2021 school year. I was sad but happy for her. She has a gift that needs to be shared throughout the world. Without Ms. P I wasn’t sure how the boy would make it. For the last two years she has worked extremely hard to get him to behave at school. The progression and successes are all due to her dedication to Kenden. After I found out about the hybrid schedule I reached out to his education team. I wanted to know if Kenden could go full time because of the small size of his class and hybrid not being the best learning environment for him. They told me he could NOT go full time despite the class size and they agreed hybrid wasn’t best for Kenden. They assured me there wasn’t a need to stress. They encouraged me to do what I could at home and not to worry about the rest.

Ms. P and Mr. K. The picture was taken the day Ms. P told us about the death of her student and Kenden’s classmate.

A week before school started Kenden and I received the most devastating news. One of his classmates unexpectedly passed away. He was only 9 years old. I will never forget the day we found out. Ms. P came over and broke the news. She just cried and cried. I expressed my condolences. Kenden had no understanding what she just said as we had no way to help him comprehend the tragedy. Ms. P said “I just needed to come over and hold Kenden”. I felt so bad for her and had no words to make it right. She loves her students as if they were her own. I knew this loss was hard and would have a profound change in her life as death usually does.

Kenden completed the two week hybrid schedule. After the 2 weeks, the school superintendent decided that the special education students and elementary kids would return full time. I was happy with this new plan although he would not have an official teacher and no students in his class. Unfortunately one passed away and the other child would be learning virtually. The school utilized the special education teacher next door to oversee his learning materials. I was comfortable with that. She has had experience with Kenden and knew him very well. He still had the same assistants and engaged with the kiddos next door. He loved having an entire room to himself. He was able to receive one on one attention. About a week later he officially moved next door. The teacher they wanted to hire didn’t work out. Though it was lots of changes and transitioning, Kenden handled it well. I was pleased with the care and decisions made to fit what was best for Kenden and his learning environment.

Overall, our Mr. K is one blessed little boy! We have had several nurses throughout COVID but we finally have one awesome nurse and a great backup! Mr. Donnie is his full time nurse and Ms. Jerika is the backup. Both have been amazing to work with and take wonderful care of my kiddo! During COVID Kenden had a overnight hospital procedure. Everything came out fine and no major concerns. Ms. P is no longer his teacher however she will be our life long family and friend. She will be babysitting for me soon and I’m super excited. Autism parents know the hardships and struggles of finding someone to babysit your kid. We have experienced many losses however God has provided a way for us to witness and to be a light to the hurting. I have had the opportunity to have a couple of my written pieces published. I encourage you to check out Message Magazine and Autism Journey to read them. Kenden’s life has been encouraging and a blessing to so many. I’m so thankful we are able to share his Autism Walk with others. We want to give others hope, encouragement, and light! Please be blessed and look for my next blog soon………..

Below are the links to my published pieces!!! https://autismjourney.org/an-unbreakable-bond-between-a-teacher-and-student-ms-p-mr-k/ https://www.messagemagazine.com/articles/a-mothers-plea-for-autism-awareness/

Me and the boys ( Kenden, Shalita, and Jaylan)

Mr. K’s update #2

The pass few weeks I have been going back and forward with Kenden’s Gastroenterology(GI) clinic. Kenden has been under the care of this clinic before the age of one. He has acid reflux and constipation. Praises to God he is no longer taken medication for acid reflux. Constipation is still a huge issue. Unfortunately, Kenden holds his stool which causes blockage and backup. It is not uncommon for Autistic children to experience issues such as this. GI disorders are associated with Autism. I’m not sure why but, I believe it could be sensory issues.

Kenden’s constipation has been abnormal for over a month now. He takes daily medication to help him stay regular but the frequency and the look of his stool has been concerning for me. I contacted his nurse practitioner and she told me to take him for a X-Ray. It was discovered that he has stool in his rectum. I was instructed to give him an enema saline. I made the decision NOT to do the enema. Kenden isn’t potty trained and I felt an enema would make it difficult for me to change his pull-ups. I ran into a nurse friend and she agreed it would really traumatize him. She said to give him a suppository, less dramatic and easier to administer. I administered the suppository twice and it didn’t not work. I immediately called his GI clinic to let them know the outcome and she said to take him for another X-Ray and she needed a stool sample to test for infection.

I explained to Kenden’s nurse practitioner’s nurse that I am a working single parent and the hardships I have jiggling two kids and running back and forth to appointments. I told her I rather schedule an appointment to have them clean him out. It would be less traumatic and we could get everything done in one setting. She said she would discuss with his NP. About a week later, I did the stool sample but did not go for another X-Ray. On my way to drop off the sample I spoke to Kenden’s nurse practitioner’s nurse. I told her that I would not be taken him to get another X-Ray. He just had one plus the difficulties I have as a single parent. I told her it was best to just admit him in the hospital to be cleaned out. I said at this point it was best for them to do it because I didn’t feel comfortable. Again, she said she would inform his nurse practitioner.

The following week I called to get the results of his sample. Thankfully he had no infection, everything came out clear. I asked the next course of action and I was told that I would need to do a clean out at home. By this time, I completely lost it! I was screaming and crying at the nurse. I was literally shaking because I was so pissed that they weren’t listening to me. I have been saying for weeks I was NOT going to do anything else at home. Kenden has anxiety every time we go to the doctor. He is so nerves and scared because he’s wondering what’s going to happen. It’s a process taking him to the doctor. I have to explain to him we are going to the doctor, this is what’s going to happen, and if you are good you can get or have a preferred item. Me administering a clean out would be so difficult and hard to explain to him.

After weeks and weeks of the back and forth and me completely losing it, Kenden is being scheduled for a overnight stay to get the clean out procedure done. I’m not only Kenden’s mom but his advocate. I can spend hours on the phone to make sure he has what he needs while working and ensuring Jaylan is taking care of too. It is so hard and overwhelming. I believe I’m treated differently because I am a single mom. I think I can be brushed off or not taken seriously. Also, I think discrimination occurs because of the insurance Kenden has. He has Medicaid and I truly believe people have their own thoughts and beliefs when someone carries state insurance. I’m stubborn and I like to get what I want. My stubbornness is my drive and motivation to keep fighting. As a special needs parent you have to have fire under your feet. You have to make your name known and let people know you will not take any and everything off of them! Overall I’m happy because I got what I wanted for Kenden. I’m thankful for Kenden’s medical and education team. I know God has blessed them with knowledge that I don’t have. I will listen and follow their instruction but I know when enough is enough. We are a team but I’m the head coach of Team Mr. K! Giving up is never an option. I will always fight hard for Kenden and Jaylan.

Mr. K’s Big Brother

Mr. K’s Big Brother

https://mrkcom6.wordpress.com/2020/01/22/mr-ks-big-brother/
— Read on mrkcom6.wordpress.com/2020/01/22/mr-ks-big-brother/