Not For The Faint Hearted

Living the life of an Autism Mom is not always easy. Today I thought I would share with you some of the scariest moments I've had being a mom to a son with Autism. I don't share these to make you feel sorry for us. I share them because it's part of our reality and I've chosen to share as much of the reality as I can.  Now one of the characteristics that is common with autism is they are a flight risk. As a parent of a child with autism we are often faced with the fear of what can happen if Johnathan has an impulse to run. While we haven't had many experiences with this the ones we have can really bring on a hyper awareness of the what ifs.

The first instance happened in April 2010 when Johnathan was 2 years old. We had gone shopping at a local grocery store and was getting ready to get in the car. I was opening the door for Johnathan to get in the car when he suddenly turned and ran. He was little and hadn't really mastered running yet luckily. I only had to take about 3 steps before I caught his arm as he was just pass the end of the car. A second later a car went rushing by inches away from Johnathan. I grabbed him up and held him tight with tears in my eyes. I remember telling him he should never run in a parking lot. After that we always made sure he was holing Jim or my hand anytime we were in a parking lot. Even to this day he still usually holds a hand or our arm when walking in a parking lot.

The next instance happened when Johnathan was a little while later and again taught us a valuable lesson. All our doors had the white capped child safety door handles. Johnathan was always too smart for his own good and he had figured out how to stick his fingers in the sides to be able to open the door. This came all to real one day when I was home with just the boys. The boys were playing in the living room and I got up to go in the other room. As I walked back out, here I see Johnathan coming in the front door with a lady I didn't know. It seems Johnathan waited for me to leave the room, got up, and snuck out the front door. He ran out to the road and sat down. The lady had stopped and followed him as he ran back to the house. Thankfully Johnathan was not hurt and we learned a huge lesson that it only takes a minute for things to happen. That was the night that we installed chain locks on all the doors in the house.

Do you ever have that moment of terror when you turn around and your child is gone? I will never forget when that happened to us with Johnathan. Our family is very active in the local fair and spend many hours at the fairgrounds in our town. Johnathan has gotten so use to being there sometimes he gets way too comfortable. Two times we've had that moment of pure terror as we turned around and Johnathan was gone.
The first one happened when Jim & I decided to take the boys to an event at the grandstands. We were at different spots on the fairgrounds and we agreed to meet at the grandstands. When we arrived we both looked at each other and said 'Where's Johnathan?' It seemed with both thought the other had taken Johnathan with them. We immediately spread out in search of him making the office (where my sister was) aware we had a missing child on the grounds. I rushed back to the last place we remembered Johnathan being: My mom's vendor booth at the exhibit hall. No Johnathan! My mom joined the search and we were off again looking. I headed out one door as she headed out the other. I walked down by the carnival rides (because the boys had gone on some earlier) thinking maybe he would be out watching them going. I happened to glance at one of the rides and there was Johnathan. To this day I don't know how he managed to get on that ride since he didn't have a ticket. I was just so relieved to find him I didn't ask.       

The second time he wasn't gone as long but still was just as scary. We were working at a food stand at the fairgrounds. The boys had been sitting hanging out one minute then I glanced over again and there was just Charles sitting by himself. Once again we went into the panic of trying to figure out where Johnathan was. We all spread out and searched the surrounding area. Moments later we found him in the beer garden that was across from us. There was a jukebox in there and Johnathan had heard the music and ran inside to listen to it.

Since that time Jim and me usually 'divide and conquer' with the boys. Any time we go somewhere we take a boy that we are suppose to keep track of. With two boys that are very different and like to do there own thing it makes it easier if we know who is following who. Like I said Johnathan doesn't usually take off on us but we also know that he could at any time. It's better to be prepared than take the chance.

The time that Johnathan scared me the most though happened right beside me and I never felt so helpless. It happened on Black Friday in 2017. We were shopping at Menards and as you can guess it was pretty crazy in there. The boys and I were standing at the front of the store waiting for Jim who had gone to grab a few more things. I ran into my best friend and we started talking. All of a sudden I felt Johnathan kind of fall back against me. I went to push him back up but his body was kind of limb. I turned him towards me and his eyes were kind of rolling back in his head. I laid him down to the ground with the assistance of my friend and a few people stopped to see if they could help. The whole experience still comes to me in choppy memories as I think I was in a bit of a shock. The main thing I remember is people asking Johnathan a million questions and my constant answering 'He's non-verbal'. No one knew what was going on and though Johnathan seemed to be back to normal everyone wanted to be sure. An ambulance was called and I watched Johnathan be loaded onto a gurney and wheeled out to a waiting ambulance. I got in with them and we headed to the local hospital. They tried to get some vitals and blood drawn but Johnathan was less then agreeable. We arrived at the hospital and were put into a room to wait for a doctor to come. Once he got settled into the room I stood talking to Johnathan stroking his hair and he fell asleep. Jim arrived and then my mom came to get Charles as we waited for some answers. In the end the diagnosis was acute bronchitis and we were sent home with the directions to have him rest. The more important thing was that there was nothing they were really concerned about.

Since that time we have worked on Johnathan being able to answer questions when he is asked. Thanks to the help of his teachers Johnathan is able to give his name, address, and phone number now. He can also tell you what his parents names are. I'm thankful he can do this but still worry that a person will ask questions too quickly and Johnathan won't be able to share the important information that he does know.
 
I want to believe that as Johnathan gets older that flight instinct will all but disappear but there are no promises. I live with the worry that I could turn around some time and he'll be gone. I worry about the dangers that are out there that he is oblivious to. We don't live in fear of what ifs because that's not the way to live our lives. We also don't forget that there is always the chance of something happening. Sharing the highs and accomplishments in Johnathan's life will always one of my favorite things to do. I know that our life is also filled with those scary moments and failures that we strive to get through also. Sharing this part of us with others can be scary but we must acknowledge that it is part of the journey. 

Thank you for all of you that have been a part of our journey or taken time to read about our journey. Your support, kind words, and presence in our lives does help us through those tougher days.

Want to hear more on the things a parent has to think about when their child might flee? Here's an article a fellow autism family wrote that captures their perspective on dealing with a child that is a flight risk.     https://www.goodtherapy.org/blog/autism-flight-risk-and-keeping-your-child-safe-0417124

What It Really Means To Us

Today I post not only as a mother but as an educator. This year marked my first time having my own classroom and classes. It was suppose to be a year of learning, teaching, and helping my students reach their full potential. Yet March 15th it was announced that all schools would close down for two weeks to allow cleaning of whole schools and prevent the spread of the coronavirus.

As a teacher this was such a sad experience. Our students were being forced out of their classrooms and away from their teachers. I remember that following Monday pulling together learning packets for my students in hopes they would complete them to avoid any loss of skills and what they had learned. A faculty meeting after school was so somber as we all faced uncertainty and felt so helpless. In the coming weeks the return date was extended to the April 7th, then the 30th and now they announcement that schools would not reopen this school year.

So here I sit thinking of the many things this means for students, their parents, and all educators.

As a Parent: I cried many tears for my boys knowing what it means. It means the stable and familiar schedule that they need has been taken from them. Their friends and teachers that bring them so much joy and happiness aren't allowed to be with them. It means that while they may continue with an e-learning curriculum they are losing out on almost 6 months of classroom instruction until they
ll hopefully be allowed in a classroom. They don't understand why they can't go to school. They feel like they are being punished and deprived of so many things that they should be experiencing. They don't care if people 'feel for them' because that doesn't change how horrible this whole situation really is.

The Students: My heart breaks for every one of my students and all they are losing out on. I can't help but be sad for my 8th graders that are missing out on milestones they deserved to experience. They deserved to be able to enjoy the last few months of their middle school years in a classroom with friends not confined to their homes. We were suppose to have this time to be all together before their new beginning in the fall. I think of my Kindergarten students who are missing out on classroom activities, hands on learning, and friendships that they were just starting to build. For all the students at our school that can't see their teachers and friends and are having to learn in new ways. I think of the students that might not have the best of home lives and school was their safe place. I think of the students that are losing out on services and socialization. This isn't a minor inconvenience to them it's a huge part of their lives.   

As a Teacher: Teaching has always been my life's passion and when I walked into my classroom for the first time I knew I was finally getting to live a dream I had for so long. To have it so cruelly ripped away at no fault of my own is so disheartening. While I continue to 'teach' my students from afar it isn't the learning that they deserve. It certainly isn't the teaching that I want to be doing.

We will all make it through this time and yes it'll be an experience that we will never forget. Still I hope people understand why there will be great sadness, anger, and great loss for many as we wait and wonder what's next.

Johnathan's Real Superheroes

Today marks a month since schools have been in session due to the Coronavirus shelter at home order. It's been a difficult time for us as the boys try to adjust to at home/ e-learning instead of being in their classrooms. It has been extremely trying on Johnathan as he doesn't understand why mom is giving him work that he does at school. Coronavirus is certainly out of his understanding and this change of roles is to. He's been completing work little by little and that's all we can ask for at this time.

Taking on the role of at home teacher hasn't been the easiest for any of us. We are all tired of being stuck at home not being able to see the people that play important roles in our lives. I guess I'm blessed that my boys have such incredible role models as teachers. Their continued support for my boys through their teaching has helped them succeed in many areas. Let me tell you a little about these real life superheroes. 

Mrs. Kelly was Johnathan's kindergarten and 1st grade teacher. From my post the other day you probably could see we didn't have the greatest start with his schooling due to our incredible boy being under estimated by others Mrs. Kelly was incredible and truly made a difference in Johnathan's life. She allowed him to blossom and grow while he was in her classroom. He wasn't always the easily to deal with because he still tended to shut down when life overwhelmed him. Yet her love and support gave him a stable launching point for his education. She saw his strengths and helped him grow. When it came to his weaknesses she was patient and caring letting him be active in figuring out what his learning style was. It was so hard when we got to the end of those two years and had to say good-bye to her. I'm happy that Charles was able to have her a year also before she retired. She gave my boys an amazing beginnings to their learning journeys and for that I'm forever grateful.   

As Johnathan moved onto his new school I was thankful I knew his teacher he would have for 2nd-4th grade. Mrs. Buettner (Mrs. B as all the students call her) was a fellow classmate of mine who I had been lucky enough to observe her teaching several times before Johnathan entered her classroom. If there was ever a teacher that deserved superhero status she is it. Her skill and grace as a special education teacher is truly unmatched. Her ability to bring a calmness to her students and find their inner strengths with such ease is astounding. From that first day that Johnathan took her hand and walked into school I knew great things were ahead for him. In a world were so many want to underestimate Johnathan she saw his greatness. She helped him find his voice, made him believe in himself, and gave him so much love and support along the way. I could truly brag about her many wonderful traits but it wouldn't even touch how truly incredible she is. Johnathan loves her so much and he still gets so excited when he sees her. Once again we have been blessed that now Charles gets to have her as his teacher.   

When it comes to Johnathan's list of favorite people Mrs Johnson (Known as Mrs J to my boys and Mama Jean to me) is definitely on that list. How many people can say their child receives pure, unbridled love while at school? Well thanks to Mrs J Johnathan did every day. Once again like with Mrs B,  I was fortunate enough to have known Mrs. J long before my boys were even born. She has been a part of my life since I was a little girl. Having her be a part of Johanthan's life (and now Charles') is wonderful. No matter what the task Mrs J always brought a smile and encouragement to it. She knew how to bring the best out of him. He knew how to push her buttons and try her patience, yet she never let it show. That's why we love her so. Knowing I couldn't be there for Johnathan as he navigated through those 3 years could have been so hard if it wasn't for people like Mrs. J and all the other teachers/aides. The best thing was that Johnathan received so much love and support that he often felt ready to face anything. I'm so glad that Mrs. J can continue to be a part of Johnathan's life even now that he's gone from that school. He still lights up when he sees her and reserves some of his biggest smiles for her. I know years from now she'll still be a part of his life and I'll always be thankful for the role she played in his learning journey.      

 Mrs Hemphill (known as Mrs H to my boys) was one of Johntahan's morning buddies when I dropped him off at school. She'd be there waiting for him and he'd get the biggest smile and going running to her. In previous years I always had to walk Johnathan to his classroom and often there were tears as I left. This rarely happened when he started at his new school and had Mrs H waiting for him. He knew she would take him to class and they'd have a great day together. 

 Mrs Woods started at the school when Johnathan was in 4th grade. He would always light up when he'd see her and give her his best smile. (Ignore his look in the picture - that is his 'mom will you stop taking pictures and just go' look) This was the year that Johnathan had a huge growth spurt. He'd always laugh when Mrs Woods would tell him he needed to stop growing or he'd be taller than her. (I'm not sure but he may be taller than her now). 

As Johnathan goes into these awkward teen years I don't think he could have gotten a better teacher. Johnathan has always liked his teachers but there is something about the bond he has built with Mr Dalton. I think having a male teacher at this time is a great advantage to him. Mr Dalton didn't set out to be a special education teacher but wow is it the best job for him. He has built such a strong structure in the classroom and all the students love and respect him. That's not easy in the classroom that includes students who have a hard time making bonds. It's great that Johnathan will have the same teacher from 5th - 8th grade. Especially when it's a teacher that he likes and respects. The greatest thing about Mr Dalton was that the minute Johnathan became a part of his classroom Mr Dalton became an advocate for his education. As we faced some tough times the last two years that required a lot of adjusting and planning. We worked to find a schedule that was beneficial to Johnathan's educational and personal needs. Mr Dalton was side by side with us as we faced each decision and supported Johnathan and our choices. In this time with us facing 'sheltering at home' and e-learning it's been difficult for Johnathan not seeing Mr Dalton. Every day we go online to answer a daily question for Johnathan's attendance. On the page we go to there is a picture of Mr Dalton. We usually have to wait a few minutes for Johnathan is stop saying Mr Dalton's name and pointing before we can answer the question. How great is it that Johnathan has such a great bond with his teacher? How great is it that we don't have to worry each year about Johnathan having to build a bond with a new teacher?

We truly have been so fortunate to have had so many great influences in Johnathan's life. There are others that I have not named here that I count on that list to. No matter where he goes in life those who have been a part of his educational journey should hold their heads high. They have done a spectacular job with helping our boy find his voice and live the life he deserves. If you know these people you probably know how special they really are. If you have real superheroes in the life of your child don't be afraid to let them know what they mean to you and your child.

Are You Sleeping?

People are always surprised when they find out how 'late' my boys go to sleep and how 'late' they wake up in the morning. I figured this would be a great time to explain what it's like for us having a child with a crazy sleep schedule.

When Johnathan was born we were very blessed to have a baby that was a good sleeper. Most nights when we put him down he would wake only once to be fed and changed before going back to sleep. I wish that trait had continued while he grew but we were in for many long sleepless nights ahead.

As Johnathan started to grow he hit many growth spurts and they would all wear him out so much. Many days he would sleep most the day away. As a mom I appreciated these naps because I was able to do things around the house. I quickly learned that this was not a good thing because it made for many late nights.

Many days he would wake up from his naps and be refreshed. The problem was that this meant he didn't want to go to sleep until 11:00 at night. Now being that Jim and I are both night owls this wasn't always a problem because that was around when we would usually go to bed. Now going to bed that late meant that he usually slept in each morning. Sometimes he might sleep until 9 or later in the morning.

 As he continued to grow we learned the problems that this sleep schedule would cause. If we would put Johnathan to bed any earlier in the evening his body would treat this rest as a nap. It would never fail - he'd wake up and be up most the night. Being an exhausted mom who had to stay up with him wasn't easy. Remember he was non-verbal so there was no way for him to tell me that he wasn't tired. The other thing I learned was he was super sneaky. He'd wait for me to start drifting off and he'd be up and wondering around the house. When Johnathan would finally settle down it would only be if he could sleep next to one of us. I remember countless nights sleeping on couches or even the floor in Johnathan's room.

I look back on those sleepless nights and I would go back in an instant to enjoy those times with my little boy again. Together we learned the ins and outs of his schedule to assist us in making the best choices to help him get his needed sleep. Being a stay at home mom for the most part at that time gave us the opportunity to have a pretty open schedule. I'm sure that was probably the worst thing for him because we often didn't follow much of a schedule. I remember those endless days when I was pregnant with Charles and could barely function. I think that deep down Johnathan knew there were some major changes coming and it made him very clingy.

After Charles was born we had to start getting on a little more of a schedule. Charles was not as easy to get on a schedule and demanded a lot more of Mom's attention. Having a surgery a month after Charlie's birth also affected my ability to being there 24/7 for Johnathan. Johnathan mostly moved out of his room to sleep out in the living room with me or into the bed with Jim. With Johnathan starting the preschool we had to start adjusting Johnathan's schedule. He was in the afternoon class so he was still able to sleep in but now we had to structure his afternoon napping to prevent the 'night time parties'. This was not easy because Johnathan still needed his afternoon naps and did not like being woken up from them.

 By the time he started Kindergarten we knew we were going to be in for a struggle. We worked on adjusting his bedtime to earlier in the evening so he'd be a little more awake in the morning. This was a struggle easily trying to find the perfect time that he'd not wake up after an hour or two thinking he was just napping. Going from two hours of preschool to a full day of Kindergarten was also tough for him. He'd be so exhausted by the end of the day and still needed to nap. Several times I'd get the call from school that he had fell asleep and they couldn't get him to wake back up. By the time he got to 1st grade we had ended the naps after school but there were still sporadic days of falling asleep at school or early in the evening. When this happened it usually meant he'd be up in the middle in the night or looking for someone to stay with him during the night.

As the years have passed we have learned ways to adjust to Johnathan and his crazy, sporadic sleep patterns. We know it's important for him to get his sleep because it greatly alters his body and emotions control. It's important to put his needs ahead of ours sometimes. Here's a rundown of Johnathan sleep facts. 

     - We have learned that Johnathan is one that can sleep almost anywhere. (The pictures above are two examples: the 1st one was during a stock car race at LaSalle Speedway and the 2nd was during an auction) Sometimes it's nice that he can do this because that nap may be needed to get him 'back on track'. Sometimes it's not - like when he falls asleep on the cooler that we need to get into to get our drinks out.   

    - Johnathan takes an anxiety medication that one of the side effects is sleepiness. Since he began taking it we have noticed him sleeping more. Sometimes he'll nap half the day and then still sleep through the night. Some times he'll fall asleep at school and we must make the decision if he'll benefit staying at school or if it's better for him to come home and try again tomorrow. Last year Johnathan was doing half days of school and would come home, have lunch, and then take a nap before doing anything else. With us being quarantined at home right now he has certainly been sleeping a lot more.
     - To add to his tiredness we are also dealing with his crazy growth spurts still. At age 12 he is already 5'6'' and continues growing taller. Sometimes it's like he goes to sleep and wakes up several inches taller.
     - Charles and Johnathan shared a room for many years. They both had a twin bed for a long time but as they got more stuff and needed more room they switched to a bunk bed. This was a great idea because Charles couldn't climb up on top so each boy had their own space. We quickly discovered a problem though. On the nights when Johnathan couldn't get to sleep he would climb down the side and into bed with Charles. Charles was not a fan of brother trying to cuddle in his bed though. We decided to move Johnathan into our office so the boys would each have their own room.
     - This brings us to our present situation. Johnathan has a nighttime routine that we do with him each night to help him settle and go to sleep. He has a radio that we turn on because he sleeps better with it. He also has a fan that has to be turned on to blow on him during the night. He has a weighted blanket plus his other blankets on his bed. He usually does good with sleeping once he's had his nighttime routine.
     - On the nights that sleep just doesn't seem to want to come he'll leave his room. Sometimes he goes across the hall to climb in bed with his brother. (Charles is still not a fan of this). Most the nights when he can't sleep I'll awake to him standing next to our bed. For awhile I would attempt to get Johnathan back to his room but usually he'd be back in our room or I'd find him asleep on the couch. I'm someone that sleeps pretty good anywhere as long as I have my blanket and am comfortable. Therefore I usually will give up my spot in our bed. Johnathan enjoys that comfort that someone is there so he sleeps well. Lately as the weather changes and our schedules are off Johnathan has been doing this a lot more. We are use to this so we continue to make adjustments and strive to meet his needs without giving up our own comfort.

As I've said many times before we don't know what the future holds. Johnathan will be a part of our household for as long as he needs to be here. If I need to give up my spot in my bed sometimes than so be it. If I need to cuddle with a sleepy boy every so often; I'm happy to do it. It's not a perfect world but it's our world!     

Words Can Hurt Me

When we are young we learn that saying 'sticks and stones may break my bones but words will never hurt me'. Guess what that is not true. Words can hurt you and sometimes that hurt takes time to heal. Now the important thing is to rise above those words and remember they are just words. We live in a time where people purposely try to hurt others with their words and comments. On the internet they are called trolls. In life they can be called bullies and haters. The worst though are those that make comments not even realizing how cruel their words are.

It makes me sad to say that we have been subjected to this experience several times with Johnathan. It never gets easier to hear the things these people say. It makes me sadder to know that many of the worse comments have come from educated people. Sometimes people say things and they hurt but as time passes I forget about them. Then there are the comments that no matter how much time pass I'll remember forever.

The first comment was made shortly after we first found out that Johnathan had autism. I was sharing the news with some family and friends. Most heard the news and not surprisingly didn't have much to say. As we were still processing what this all meant I'm sure those finding out didn't know what to say either. Unfortunately there was one person when hearing the news chose to go into a defensive act approach. This person said the autism must be a genetic thing and wanted to know where these bad genes came from. As parents who just found out their child has autism you go through countless questions if you could have done something differently that might have helped you child sooner. Being 'attacked' by this person who seemed to want to accuse someone was the last thing we needed.  To this day I'm hesitant to talk to this person about things pertaining to Johnathan because it brings back the hurt felt during that initial conversation.

The next comment came while Johnathan was in our school's preschool program. We were at a parent-teacher conference discussing the progress that Johnathan had made in the program. A lot of the work that Johnathan completed in their curriculum involved task work. Johnathan would get a task box from an area and then go to a desk to complete the work. When he was finished he would take the box back to the area to get his next task box. Johnathan enjoyed this curriculum because it followed a constant order than was easy for him to understand. At the conference one of the instructors was telling us about this and how well he did with it. Imagine our surprise and shock when she said 'Johnathan will be a great button pusher in life'. We finished up the meeting and went home with neither Jim or I discussing what was said. Then one night Jim asked, 'Is that all we are hoping for Johnathan to accomplish?' Let me say no at 4 years old we did not feel like Johnathan's role in life was being determined by someone who obviously did not see the wonderfulness our son possesses.

That leads we to another comment that happened when Johnathan was in the preschool program. (Does it surprise anyone that despite the skills he gained in the program I have negative feelings towards it) Anyway we would attend a playgroup that was hosted at the school once a week. This was a great opportunity for Johnathan and Charles to socialize with other children of various ages. This could be an overwhelming activity at times for Johnathan so I always did my best to stay near him. One day Johnathan got overstimulated and I wasn't by him so he grabbed hold of another mother at the group to get his squeeze sensory fulfillment. It was a minor event that I didn't think too much about. That was until I was called into the office of the organizers of the program the next day. They felt that Johnathan's behavior was 'inappropriate' and felt that if the behavior continued it could cause problems. I explained I was sorry and would be a little more observant in the future to hopeful prevent it from happening again. I explained I felt the playgroups were very beneficial to Charles (and Johnathan). I'm said to say her response was "well could you just leave Johnathan home and just bring Charles?" Just let me say I lost almost all respect for that woman that day and to this day when I see her I still get a bit angry that she had the nerve to say something like that.         

Like I said most of these comments happened early in Johnathan's life and we have been blessed to not deal with much of that ignorance anymore. Yes people make comments that still get under my skin, people say things that are offensive, and people in our lives still do stuff that is annoying. The nice thing is that I have learned from the past and not let things cloud my picture of who Johnathan really is. Those three comments made me a better parent to my son. The ignorance of the first person reminds me it doesn't matter what causes Johnathan's autism because his autism is not what defines him. The second person ensured that we always let Johnathan know he can be whatever he wants to be and we'll support him as he figures it out.

As for the last person I think that comment impacted our lives the most. See I was not going to let anyone tell me to leave my child at home. Since he was little I have always made sure Johnathan has gone to many different places and done many different things. That is how he learns to deal with different social situations and interactions with many different people. I don't want to ever give him the idea that he can't go somewhere because he has autism. We have dined in fancy restaurants, attended events throughout the state and others, and driven in a car for over 13 hours with few stops along the way. Yes sometimes Johnathan gets overwhelmed, sometimes we've had to plan ahead, and sometimes we've had to postpone an activity until we think Johnathan is ready for it. Let me tell you want we've never done - left Johnathan at home because someone told us it was for the best.

 

It's All Part of the Puzzle

Since I was little I have always loved puzzles. My grandma taught me that it is best to get the outside pieces put together first to give you the framework and then move on to the details. Anyone who has worked on a large puzzle knows it can take a long time to complete. You start out with a idea of what your goal is but it takes time for all those pieces to come together to make that completed picture. So is the way with Johnathan and his sensory issues.

 
When we first discovered Johnathan's delays and learned that he was autistic we were only just starting to construct the framework of Johnathan and his inner workings. As with any child the big picture takes a long time to construct and sometimes you have to work a little bit at a time. It was no different with Johnathan as we had to navigate each small section to discover how each part comes together. We were told to expect some sensory issues and that there would be no way to know which he would have until he reacted to those issues.

I think a lot of people don't understand that sensory issues can not only be a hyper-sensitivity (over-response) but also a hypo-sensitivity (under-response) to a stimulus. Anyone can have sensory issues though the responses may not be as profound as some of the sensory issues an autistic person has. Remember autistic people process things differently and due to many being non-verbal it's harder to communicate what stimulus is affecting them.

Piecing the parts of Johnathan's puzzle together hasn't always been easy. I like to think of Johnathan as one of those puzzle that contain large areas of the same color and you have to distinguish those tiny little details to figure out how it all goes together. Sometimes we would find parts that came together with ease and then boom nothing wants to fit together anymore.   

Sensory issues are tied to the five senses and most of Johnathan's sensory issues are sound or texture sensitivities. We continue to learn about what things may trigger Johnathan and work to limit these sensory overloads when we can.  We have worked with various therapist that gave us skills and activities to help Johnathan control some of his sensitivities better. Over time we've found ways to limit the stimulus that caused Johnathan the most strain on him. Let me tell you about some of the sensory issues we have and/or do observe with Johnathan and how we found ways to help.   

Sound: Often people see Johnathan working headphones and they get the wrong idea. The headphones are not playing music, he can hear when he has them on, and they are not something he is required to have. We have Johnathan wear his headphones because we have found this is a great asset to him. When Johnathan wears his headphones it does help muffle all the sounds that he has around him. Being able to filter sounds allows Johnathan to better focus on what is going on. Imagine sitting in a room and every sound happening around you was at maximum volume. For those with a sound sensitivity that is what it can be like. We have found that Johnathan is able to deal with new experiences much better when he has his headphones too. We have learned to pick up on the indicators that tell us when Johnathan would benefit from having his headphones. We often carry a set with us in the car just in case.

Another common misconception is that Johnathan doesn't like loud noises. If you've ever seen Johnathan at the race track or a demolition derby you know that is not true. These are two of the loudest events that we attend and Johnathan is always right up there next to the track to take it all in. I often share the story of a time when Johnathan was with his great aunt at a derby. She was watching him for us while we worked at the derby. While we were cleaning up she called me to tell me something was wrong with Johnathan. When I got over to them Johnathan was crying and fighting to get away from her. She said she was taking him back to the motorhome to sit down and he started crying and fighting all of a sudden. It only took me a second to realize what was wrong. There were still derby cars out on the track waiting to be hauled off. Johnathan could hear them running and see them on the track so he thought the derby was still happening. I carried him inside and set him on the dashboard so he could see the track. He immediately stopped crying and was perfectly content. Soon as the last car was off the track he jumped down and went to play.    

Anyone that has seen Johnathan has probably seen him covering his ears like the picture above. We have people ask us about this a lot because he will do it even if it's quiet. This is more of a coping mechanism for him. Johnathan has sensory issues with this ears (especially the left one). When he was younger he would get upset if anyone would get by his ear. Things like taking his temperature, cutting his hair, and even getting clothes on sometimes was a struggle. It took a long time to get this sensory issue under control but we have. To this day though he continues to sit for long periods of time with this hands over his ears. 

Textures: As I previously mentioned in the post about Johnathan's therapies Johnathan has many issues with textures. Johnathan for the longest time did not like his hands to be messy at all. He always felt the constant need to wipe his hands off if they got anything on them. There was no finger painting, eating with his hands, or even playing with playdough. Even his love for going to the beach was plagued by his sensory issues. He hated how the sand and rocks felt on his feet. As you can see from the picture above he would avoid his feet touching the ground any way he could. I always joked he had such great core and leg strength because he could sit with his legs like that for the longest time. For awhile he would wear his socks down to the beach and once he took them off we had to hold him until he was in the water and could float. Then when he got out of the water we had to carry him back to our stuff, clean and dry his feet, and put his socks back on. He has gotten much better dealing with these sensory issues thankfully. While they'll never completely go away his ability to handle them grows with each new experience.     

One of the most interesting sensory issue we have noticed with Johnathan is he does not get dizzy. He loves to spin on different playground equipment. It amazes me how he'll spin for the longest time and get off and walk away like nothing. Yet Charles will get on, not even spin as much, but get off and almost immediately fall over because he's so dizzy.

We know that Johnathan's sensory issues will always be a part of who he is. While we have been successful in assisting him in dealing with many of the issues we still have days when they get the best of him. I'm thankful that we have learned so much about his sensory issues and have been able to find positive solutions to help when we can. We will continue to help piece his puzzle together and bask in the uniqueness of every piece.

Love You Big Like the Moon

Every night before he goes to sleep Johnathan and I have a routine we go through. It involves hugs, kisses, and a few favorite sayings. One of those is 'love you big like the moon.' I started saying this to Johnathan a couple months back. Obviously it has made an impact on Johnathan because he has added this saying into the routine. It makes my heart smile every time he says it to me.

A common myth is that anyone that has autism can not show affection to others. There is a good reason for this myth because due to sensory overload many with autism do not like to be touched and/or hugged. Prior to having Johnathan I had only worked with autistic students that had the 'no touch' rule in place. Any contact could be painful or just too overwhelming for this person with autism. It was hard to see these students trying to navigate their days while surrounded by a world that felt so overwhelming.

As I watched Johnathan show more signs of his autism my memories of these students were at the back of my mind constantly. Johnathan had always loved to cuddle and couldn't get enough of being close to us. I think that is how I 'fooled' myself for so long that it wasn't autism because Johnathan was so affectionate. Even now our days are filled with lots of time together cherishing our moments and making memories. When Johnathan is sensory seeking he seeks out hugs or squeezes from those around. Often it will be Jim and me that he comes to at home. At school it's his teachers and the classroom aides. When hugs and squeezes are not appropriate Johnathan likes to shake hands. These hand shakes are more of a strong squeeze then a real shake. 

Again I know how fortunate we are that Johnathan can show us all the affection that he does. When the days get rough it's amazing that Johnathan can pick up up on this and offer extra love. That amazing feeling when he comes up and gives me a hug or a soft pat on the back.releases so much stress in our bodies. He not only shares his affection with us but others including several family members who are on his favorite peoples list. Others like the waitress whose hand he cuddled, our dog who gets her own hugs and kisses, and even those classmates that bring out bring out Johnathan's smiles even with he's feeling overloaded. 

Sometimes Johnathan has rough days where he can't control the overload of his sensory input. I'm not going to lie that these days are easy to control. They aren't and we all come away exhausted and often quite drained. Still we know that tomorrow is another day. We can hope for a better day but if not we know we'll face it together. We know our child loves us and that he knows we love him. Maybe we don't get to always show it the same ways that others do but we do show it. Our son finds a way to show love that makes us so proud and hopeful. Those who are lucky enough to experience that love I hope it brings you the amazing hopeful and joy it brings to us. 

Want to learn some more - here are some myths that are associated with Autism. 

https://acadianaautism.com/facts-and-myths/