The Great “Disconnect”

After watching a video the other day I had a "light bulb" moment. A 17 year old girl was discussing what it is like growing up and living with Aspergers. She is AMAZING and really helped me put something I have been struggling with for years into perspective. I have always had a hard time getting across to others exactly how Josh’s restricted and repetitive behaviors have impacted his daily life. I’m always hearing “but he looks fine” or “I don’t see anything wrong”. Let me start by saying he IS fine and there really ISN’T anything wrong with how he chooses to handle his daily routine. Hopefully by the end of this blog you will have a better understanding of what repetitive behaviors are and how Josh uses his to disconnect from our world while entering his own.

Restricted and repetitive behaviors and interests are among the three main symptoms of autism. They include repetitive movements with objects, repeated body movements such as rocking and hand-flapping, ritualistic behavior, sensory sensitivities and circumscribed interests (unusual preoccupations that are intensely focused). 

Josh has many restricted and repetitive behaviors. As he gets older he is definitely learning how to manage them better. He also knows how to control them, to a point, when out in public. This is when I hear from others how he “looks” fine, “I don’t see anything unusual”, or my favorite “he’s just shy”. I’m also always hearing from others that they were unaware because “he seems so social”. Josh can be extremely social but if you take a closer look you’ll notice he gets along much better with younger kids or family members. I have a theory on that… Josh tends to be intensely focused on things that are of interest to kids about two or three years younger than he is, probably because that is where he is on an emotional maturity level. The younger kids LOVE Josh, if given the choice to play with his eleven year old peers or an eight year old Lego enthusiast he’ll choose the eight year old almost every time. It’s not that his peers leave him out, because they don’t, he just simply feels more comfortable around the younger group. When he is with this younger group I don’t think he feels the need to disconnect from our world so much. It’s much easier for him to pull them into his world. My biggest concern is that as Josh gets older and his repetitive behaviors and interests remain the same it will become increasingly more difficult for him to find friends to hang around with. I’m hoping he will continue to surprise us all…

Now at home it’s a whole different story!!! At home when he is around all of his FAVORITE things he can easily slip into what is called an autistic disconnect. The anxieties of the world have taken its toll and now he needs to decompress. While on the computer playing Minecraft or completely engulfing himself in the latest video game craze you will always find Josh jumping and flapping his arms. I swear I will find him on the ceiling some day. He becomes completely obsessed and enters another world. Don’t bother trying to talk to him, he can’t hear you. Don’t question why he sniffs his hands constantly while playing, he just does. Don’t think he will eat if he gets hungry or drink if he gets thirsty, he won’t. Don’t think he’s trying to be rude or disrespectful, he’s not.

While in his world he is constantly trying to process what he is doing. When he gets “stuck” on something of interest and starts to obsess about it get out of the way and clear the hall. Here comes Josh running laps around the living room and then pacing up and down the hall. Up the hall… Down the hall… Up the hall… Down the hall…  Don’t bother talking to him; he can’t here you he’s “thinking”. Another way Josh processes information is through a repetitive behavior called echolalia. Echolalia is repeating or ”echoing” what another person has said. Children who are echolalic imitate what they have heard someone say in everyday life, lines they’ve listened to from a book, lyrics to a song, or a script from a show or movie. If you ask Josh a question listen closely, he’s more than likely to repeat that question before trying to answer it.

Now it’s time to leave his sanctuary and head out into “our world”. This can be a very difficult task. It’s not easy for him to leave the comforts of home. Welcome now to my world of rituals! Everything must be lined up and/or put in its correct spot. Don’t touch the Legos, it’s his newest masterpiece in progress. Computer door shut, bedroom door shut and one more check to see the Xbox and games are put away correctly. Now repeat. Now repeat. Now repeat, get the idea. Oh and I have to pinky swear, several times, that I won’t go into his room, touch his toys or go on to his Minecraft account. This is done EVERY DAY before leaving the house. And you thought you had a difficult morning routine…

Now he is out “re-connected” to our world. Playing with the kids on the playground while trying to manage his behaviors. If you pay attention these behaviors do pop up in public. He is learning how to manage them however, under extreme anxiety it becomes difficult. He may just need to take a snack break, go for a walk, do arm pushups (deep pressure really helps) or he’ll ask to go to the bathroom. This is a good time to warn all middle school teachers, beware Josh will ask to use the bathroom a lot. No he doesn’t have to really go it’s his way of saying I need to take a break and go for a walk. Just remember, even though Josh is learning how to manage in public now and then it is still necessary for him to disconnect into his world in order to reconnect into ours.

Thanks for giving me a moment of your time,

Ann

 

Always A Champion!!!

 

Too often I find myself envious of friends who have kids around the same age as Josh. How exciting it would be to watch him play ball, any kind of ball for that matter. The thrill of that first hit, striking the batter out or scoring the game winning run! Some days I would settle for getting him to simply ride a bike or just go for a little swim in the lake. I truly enjoy watching my friends cherish these moments their children will remember for a lifetime. However, that’s not my boy at all… Legos, video games and yes Minecraft is how he’d rather be spending his day. Too many sensory issues, lack of gross/fine motor skills and anxiety have kept him from enjoying many things most of us take for granted.

While going through some old photos I began thinking back on the earlier years. This is something I have avoided for several years now. Whenever a friend says “oh remember when they were little, don’t you miss those days?” I can honestly say yes I remember and NO I don’t miss a lot about those days. It makes me sad because Josh is an only child and I know I shouldn’t feel this way. Only another Mom of a child on the spectrum can truly understand what I’m trying to say here.

 During those early play group days at around 2 years old it wasn’t easy watching all the other kids play together while Josh, if we were lucky, played alongside of them. They began to talk and develop friendships while Josh was just sort of ‘hanging’ in there. This was when the parade of birth to three therapists entered the picture. For the next year, 3x a week, it was a speech therapist, occupational therapist or physical therapist knocking on my door. Believe me when I tell you they worked him hard! Before I could blink my baby was entering Pre-K at The Sherman School.

 As we begin to prepare for middle school I’ve decided to take some time to look back and really think about all he has actually overcome. Here are just a few examples.

Then

 In Preschool Josh didn’t speak very much. The first year was spent more running laps around the room, lining up toys during play time and how could I forget the daily ritual of walking up and down the fence each day while he chanted “cross the white line” over and over. This was a child who until he was four couldn’t figure out how to climb onto a chair without assistance. He didn’t like to swing on the swings, catch a ball or engage in play with other children without constant prompting from a teacher or a para.

There really is so much that he has overcome during his elementary days, I couldn’t possibly list them all here but I’ll share a few of the monumental ones.

This was a child who walked the halls, head down most of the time. When a friend, a best friend, would say hello to him he wouldn’t answer back. Until about the 3rd grade he needed us to prompt him to answer back when spoken too (actually, we still do at times).

Josh also learns differently than his peers and figuring out his style wasn’t easy. It took a lot of hard work on his part and on the part of his teachers, paras and therapist to find ways to best help him. I guess you could consider his teachers his coaches as well. With their constant guidance, support and their cheering him on he has begun to accomplish more than I have ever expected. We have a long road ahead but Josh has some of the best coaches a child could ever ask for!

Now

Well, I’m happy to announce he no longer runs laps around the room or walks up and down the fence…not that I know of any way (LOL). He still struggles with gross/fine motor skills but you can always find him running, climbing and yes even swinging or spinning on the playground with his friends. He has even discovered a new like for running. It’s not love yet but at least he’s involved in an actual sport now! I’m afraid his first loves will ALWAYS be Legos, video games and any computer gaming obsession of the moment. He’s definitely my techno kid…

School will always be a little challenging for him but unlike the earlier days he engages much more with his teachers and peers. This was a child who in the beginning of 3rd grade was barely reading on a 1st grade level. Through hard work, practice and help from his coaches I'm happy to say by the end of 5th grade he was reading on a 5th grade level. This was the first year Josh didn't need summer school for reading...an out of the park Home Run as far as I'm concerned!!!

As he has gotten older he has also become more confident in himself and who he is. Last year, with the help of a few of his coaches, he helped create The Sherman School’s first annual autism awareness day (“Light It Up Blue” day). As everyone wore their blue I was told that day he walked those halls head held high with pride! This was a turning point for him, he’s beginning to advocate for himself now. In an article that followed Sherman’s autism awareness day Josh was asked what did he hope his fellow classmates and teacher’s learned from “Light It Up Blue” day? His reply, “It’s nice for kids know it is okay to have friends with and without autism. I’m really not that different. There’s nothing wrong with how my brain works, it just work a little different.” Josh may never be involved in your ‘typical’ sporting events but he will always be my champion!!!

Now with middle school quickly approaching we find ourselves beginning a new chapter of our journey. A chapter that is sure to be filled with pimples, hormones and a whole new list of social skills that will need to be taught to him. Lucky for Josh that I have a lot of patience, lucky for me that he is a quick learner and lucky for us both that he has the best coaches helping him out along the way!

I feel like I have only scratched the surface when it comes to talking about all he has accomplished the list continues to grow daily. I could go on and on but it may begin to get a little 'wordy' here. Remember… I’m not a writer (not yet anyway), just a mom with BIG mouth who is more than proud of her child for being exactly who he is!

Thanks for taking the time read this… 

J Ann