Good company in a journey makes the way seem shorter. — Izaak Walton
Good company in a journey makes the way seem shorter. — Izaak Walton
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.
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”.
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 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.
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!
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.
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.
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/
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
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.