Good company in a journey makes the way seem shorter. — Izaak Walton
Good company in a journey makes the way seem shorter. — Izaak Walton
Mr. K’s Big Brother
I am so excited to write about my older son, Jaylan. He is an amazing young man. Jaylan is energetic ,talented, athletic, hilarious, and much much more!!!! I enjoy watching the relationship flourish between Jaylan and Kenden. Jaylan takes pride being Kenden’s big brother. Jaylan believes it is his responsibility to protect Kenden and teach him how to be a “MAN”.
Jaylan was 9 or 10 years old when I told him about Kenden’s autism. Of course, he had lots of questions but it didn’t change the fact that Kenden was still his annoying little brother and that he loves him. Jaylan’s love for Kenden is so special. I remember a time I took the boys to go get a haircut. A older lady walked in and she had a cane in her hand. Kenden saw the cane and immediately went for it. Unfortunately, I wasn’t fast enough to catch him, so Kenden tried to take the cane from the lady. The lady got upset and yelled at Kenden. Kenden could have careless she was yelling, he was still trying to take the cane. I finally got ahold of him and apologized. While driving home Jaylan starting crying and was extremely upset the lady yelled at Kenden. In the mist of him crying, Jaylan says “does she know he is autistic and he can’t help it”. I explained to Jaylan that Kenden’s disability isn’t visible, the lady had no clue. I told Jaylan to look at Kenden. He looked in the backseat and Kenden had a huge smile on his face. I told Jaylan that he had nothing to be upset about because Kenden was happy and didn’t care. In that moment I knew that Jaylan will always take care and protect his brother.
Jaylan is your typical pre-teen. He can be very dramatic and act like the world is coming to an end when he doesn’t get his way. I have learned through Jaylan, Kids that have siblings with disabilities have to be selfless. Many times their siblings needs have to come before their needs. There have been several times I have had to miss events, make arrangements for Jaylan to get to his activities, or have Jaylan stay with my parents so I can get Kenden to his appointments. Jaylan has always said “Mom it’s okay, I understand.” I’m thankful he has never been upset because it’s hard when you are not able to always be there.Jaylan is very compassionate about Kenden. He understands how great of a responsibility it is to care for him.
Jaylan is a tremendous help to me. Kenden is extremely fast and busy. Jaylan is able to chase him down for me. He helps me keep him safe. Kenden doesn’t understand the concept of danger. He will open doors and run away from you. We have taken all precautions around our home to keep doors secured but you know things happen. Thankfully Jaylan has the speed to prevent him from running into danger.
Jaylan is such a big influence for Kenden. Honestly, Kenden listens to Jaylan more than me. Kenden loves for Jaylan to be proud of him. When Jaylan teaches him new things, Kenden looks for Jaylan’s praises when he succeeds in the task. Jaylan tells me all the time that I will not have to worry about Kenden because he will always take care of him.
Jaylan was definitely unexpected but what a blessing he has been to me. He is my push and reason to succeed. I do worry and I maybe to hard on Jaylan. I just want him to be successful and conquer everything he sets his mind on. Jaylan’s strength is indescribable. I tell him all the time he doesn’t recognize his own strength. I’m so eager to see what God has for him. One thing I do know for sure is he will always take care of Kenden! That definitely gives me peace of mind and comfort.
Kenden has always had a hard time going and staying asleep. Sleeping has been an issue since he was born. When he was in his toddler stages his father and I would have to take shifts watching him throughout the night. He would wonder around the house and get into everything! Sleep was definitely not a priority, it was Kenden’s safety.
I will never forget the night I discovered Noah’s World Bed. It was one of the many nights/ early mornings I was up with Kenden and I decided I needed a bed to keep him safe. I Googled and Googled and thankfully Noah’s World Bed popped up. I read the story behind the creation of the bed which was identical to Kenden. I told God I wanted this bed for Kenden. I researched how to get the bed through medical insurance. I had Kenden’s Occupational Therapist and physician write a letter of need and I found a medical equipment company to help submit all the supporting documents to his insurance.
I had no issue getting the bed for Kenden. The insurance did not reject our claim. I believe they called me one time to verify some information about Kenden. 4-5 years later Noah’s World Bed is still in our home. Sometimes Kenden wakes up in the middle of the night or early mornings. I’m so grateful for this bed because it allows me to sleep while he is up partying through the night!
Several months ago I contacted the owner of Noah’s World Bed via email to ask how to order a new canopy for Kenden’s Bed. The zipper broke and the canopy had a few holes due to wear and tore through the years. I was shocked how quickly he responded to my email. He told me what I needed to do to submit to insurance for a new canopy. He checked on me throughout the process. I did have the opportunity to speak with him on the phone. I thanked him for the bed and told him how much of a lifesaver and blessing the bed has been. The customer service was fabulous. He went above and beyond to help me.
Without his Noah’s World Bed I wouldn’t know what to do. It not only keeps him safe but allows me to sleep. The bed is durable and Kenden Approved!. Kenden is a super hard kid. He’s rough and tough on his stuff. This bed has lasted and endured his abuse.Insurance did approve a new canopy and now Kenden has new canopy. We received the canopy yesterday. The canopy looks great but most of all the bed will continue to keep him safe.
One of the hardest things about having a child with Autism or really any disability are the doctor appointments and procedures that they experience. Kenden’s strength and his ability to handle what’s in front of him is simply amazing. As I write this I sit in the waiting area at Vanderbilt Children’s Hospital for an overnight EGG. Kenden’s team today has been wonderful. There were complications with placing his IV but thankfully it was decided an IV was not needed. Overall I’m just simply thankful God gives me the strength and the ability to be here for him. Being a single parent is overwhelming and trying but,to have a disable child along with being a single parent is hard and frustrating. This post is to give God thanks for just being him! He never ever fells and always provides supernatural strength when I need it!
These pass few weeks have been extremely hard for Kenden. His behavior has been out of control. He has displayed lots of physical aggression, lack of attention, noncompliant, and lots of stimming behaviors. Stimming is the repetition of physical movement, sounds, words, or moving objects. Pretty much stimming is an self soothing behavior. We probably all have stimming behaviors however autism stimming can be uncontrollable. Kenden stims daily however when his medication is regulated I am able to redirect those behaviors. If he had it his way, he would do it non-stop. I want to prevent stimming because it can be inappropriate and honestly annoying.
The first month of school was absolutely amazing! His daily reports were great. He was not having any physical behaviors and he was doing his work And learning. Here lately the reports have been very troubling. He has shown aggression, super hyper, and unable to redirect. His teacher and I spoke and we discussed the changes Kenden has experienced in the pass of couple of weeks. Me and the boys moved into our home, a new teacher’s assistant started, new CNA ( Certified Nurse Assistant), and new bus pickup location. I decided it was best to reach out to Dr. G, his Behavioral Specialist. Thankfully I have the doctor and his wife’s personal cell number. He called in an additional mediation but it didn’t work. Of course, I reached back out to him and he had me bring Kenden into the office for an emergency appointment.
Kenden was the last patient of the day. We were there for 4 hours. Dr. G asked about any recent changes. I told him all the changes and the behaviors he is displaying. I told him I felt his medications needed to be adjusted, they are no longer working. While with the doctor Kenden was in everything!!! The doc definitely agreed that his meds needed adjustments. He decided to increase two of the medications and add a medication for the afternoon. I truly felt better after talking with the doc. He told me two of meds have to be increase periodically because his body will get accustom .
Last week I decided to release the last CNA Kenden had. I just felt she wasn’t a good fit for him and our family. Thankfully the agency called me on Monday ( September 9th) to let me know they had a CNA that wanted to start that same day. I also had Ms. San helping with Kenden and available to train the new CNA. God provided what I needed because this week with Kenden has been very difficult. Kenden has 40 hours of CNA services. Since he has had the service I haven’t been able to get anyone to work the full 40 hours. The new CNA said she wants to work all the hours and will work on Sundays! I decided to blog today because I am mentally and physically drained. I literally wanted to cry and crawl in my mental hole and not come out. Sitting here writing this has reminded me of the blessings God has provided for me and the boys! I was able to see the doctor and fix his meds, he has a CNA that I believe will workout, and cutting his hair last Sunday was incredible! I have to remind myself he will always be with me and to renew my strength in him. These pass few weeks were trying but I made it!!!!
Mom asked me what does ASD mean. It hit me that I never explained what it stands for.ASD means Autism Spectrum Disorder. Someone can be mildly, moderately, and severely autistic. In Kenden case, he is severely autistic because of his communication and behaviors.
Kenden’s communication level is the age of an 18-24 month of child. It is difficult describing his communication. Sometimes I can understand him and sometimes I can not. We will use anything to communicate with one another. We utilize picture cards, a speech tablet (Dynavox), sign language, or pointing/ taking him or me to what he wants or needs. Overall, it can be frustrating for the both of us.
Kenden’s behaviors can be extreme and sometimes dangerous. He is a little dude but he’s strong as an ox. I believe some of his behavior stems from his limited communication. Kenden has repetitive/ restricted behaviors. He will obsess over preferred objects and words. He makes clicking and awkward noises with his mouth. Kenden has his set routine. If his routine is interrupted it will be major repercussions. For example, Kenden likes to say a word and then have someone repeat what he just said. If you don’t repeat what he says he will have a meltdown. Kenden’s meltdowns are major. It can takes hours for him to calm down due to his obsession with what he wants at that particular time.
Autism is Kenden’s super power because of his strength and mystery. Several months ago, Kenden was referred to a Geneticist. The goal of the appointment was to find out why he was Autistic. The doctor asked several questions about me, his father, and our extended family. They had to take blood samples from Kenden. We finally got back the results and they were inconclusive. They discovered a mutated gene but currently there isn’t enough research to explain why the mutation of the gene occurred. So……. we don’t know why he is autistic. I could have continued testing but I decided to stop ,the doctor agreed with my decision. Autism is difficult and stressful but it’s a indescribable special.
When a mother finds out she is expecting she begins to prepare for her blessing. A mother will decide which crib to purchase, pick out the safest car seat/ stroller, choose the theme for the baby’s room, and prepare for other essential things they will need before the baby enters the world. My preparation for Kenden was not what I expected but God’s designed plan.
In Jan of 2011, I started working for the Christian County School System. This was my first “ real” job after graduating with my Master’s in Health Service Administration from Austin Peay State University. I was hired to work in the special education department as a Special Education Assistant. I was assigned to work with one of the best teachers in the world, Mrs. Hargrove! She took could care of our students and me. She protected and shielded me from a lot stuff and I can’t thank her enough. My first year was a unforgettable experience. Each day brought something new, some days better than others. That year truly toughen me up.
During the summer I found out I was pregnant. I was a bit nervous to go back to work because of the population of special needs kids we served. After I returned to work from summer break I found out that I was assigned to work with one special little kid. The Kid was not in our classroom last year but I was very familiar with them from the previous school year. This was a kid with lots of energy and a handful! My responsibility was to go with The Kid to all of their classes to help stay on task and pretty much make sure they didn’t get into anything.
I was so scared to work with this kid.I knew absolutely nothing about autism and now I was expected to be their personal aide! Of course, I played it cool but I had all kinds of feelings going on. After a couple of weeks of school We started developing a relationship. I truly grew to love the kid as if they were my own child. They were super smart and intelligent but required lots attention and watching. The Kid had no concept of danger. If not watched carefully, they would be a flight risk. The Kid would easily walk in the middle of the street or run out of the school doors.
One of the things I loved about The Kid was their imagination and love for reading. They could read a book and completely transform into the characters in the story. The only thing is they enjoyed staying in character.I quickly learned that the child preferred to stay in their own mind. I constantly had to remind that was not acceptable. Sometimes ASD kids find comfort in their own world. That’s what keeps them isolated and withdrawn from the real world.
The entire year I worked with this child. It was amazing to see them meet and exceed the goals Mrs. Hargrove set for them. I must say it took a team of folks to help make them successful. Lots of patiences and endurance. Within that year I had Kenden and still worked with this child after returning from my maternity leave. I worked with this child for a total 2 years. I was so proud to see them grow and flourish because I played a part in their success.
The Kid graduated elementary and moved to middle school. I moved on to my next ASD kid and later on finding out I had my own child with ASD. I stayed with the school system a total of 5 years. 4 out of the 5 years I was a Special Education Assistant and then God blessed me to be the Family Resource Coordinator for the school I worked in. For 4 straight years I cried and complained about my job as an assistant. I was so angry because I had my master’s degree, making only 10.00 dollars and some change an hour. I knew that I wanted more and my education along required me to do more for myself and for my family.
I finally realized after Kenden’s diagnosis that God kept me with Mrs. Hargrove and our kids to teach me how to parent Kenden. He purposely placed me in that position to learn about my child. I know that I wouldn’t have been so accepting of the diagnosis if I had not worked with these kids.While working in the school system I noticed some parents were ashamed or unaccepting of their child’s disability which in the long run hurts the child. God knows what we need way before we ask. He knew that I needed the practice so I can always make the best choices and decisions for Kenden. I know my experience contributes to the mother I am to Kenden.
My preparation for Kenden Andrew was ALL God’s plan. I questioned God for years and asked him why I couldn’t get another job. I begged and prayed for God to get me out. Now I know it was ALL for the preparation for Mr. K!
The doc appointment I found out Kenden’s diagnosis.