What I'm Grateful For

I don’t really like to write, but I promised my mom I would write something for her blog if our Facebook page, Me and “My” Professor, reached 1,000 likes before Thanksgiving. She told me I need to keep the promise I made to her. She thought it would be a nice idea for me to write about what I am thankful for. That is what Thanksgiving is all about, but I don’t want to use the word thankful. I am going to make a list of what I am grateful for. I hope that is alright. And thank you for liking the page. Sometimes my mom has good things to say. And sometimes she has to remember to ask my permission before posting a picture of me.

Are you ready for my list? Here it is:

1.     I’m grateful for my cats, Rusty and K.C., Rusty is my favorite. He just gives me loves all the time. K.C. can be grumpy but I love her too.

2.     I’m grateful for my mom. She really takes good care of me and makes sure I am happy. If I get sad she tries to make me feel better, even if she is the one who made me sad. She say’s “no” a lot!

3.     I’m grateful for my dad. He likes to play with me. We have Friday night guy night where we stay up late and watch CSI.

4.     I’m grateful for the Sherman School. They have good teachers who teach me well.

5.     I’m grateful for the good friends I have at school. I think everybody likes me.

6.     I’m grateful for my mom’s Bunco nights. When mom goes out to play with her friends dad and I get extra guy time!

7.     I’m grateful for all my cousins. I don’t have a brother or sister so they are like brothers and sisters.

8.     I’m grateful for everyone else in my family too.

9.     I’m grateful for all my Lego sets. I have a lot of them.

10. I’m grateful for my XBOX 360 and all my video games. Halo 4 is my favorite right now.

11. I’m very, very, very grateful for my new room! It is HUGE! I have all my stuff very close to me. It’s organized too!

12. I’m grateful for my fast feet; they make me a good runner.

13. I’m grateful to have breakfast, lunch and dinner every day. It makes me sad that there are kids who don’t have food or a home.

14. I’m grateful to live in a country that has given me the right to free speech, and the freedom of choice. I’m going to use the freedom of choice soon to choose to stop writing. My hands hurt me now.

15. I’m grateful that I have Aspergers because it makes me a one of a kind person who is unique. And It’s nice to have a page about Aspergers.

16. The last thing I want to be grateful for is Christmas!!! I love Santa Clause and will always believe in him. If you don’t believe you won’t receive, that’s what I always say. I feel badly for the parents who have to buy their non believing children presents. Santa only has time for believers!!!

I have run out of ideas, If I think of anything else I’ll let my mom know to tell you. I hope everyone had a nice Thanksgiving.

 

Josh (but my mom calls me the Professor)

 

 

Puberty...HELP!

You know you’re in trouble when your son, then almost 12 years old, asks “just what is the fascination with boobies?” And then that same evening follows up with, “can somebody please explain to me just what exactly a prostitute is?” You would think the hubby would help, isn’t he the expert on all this stuff? From the moment I heard him yelling “honey”, I knew it was time… Time to have ‘The Talk’! And, like most things, I’d have to take the reins on this one too. What to do? Well hit Facebook of course…  As I asked for advice friends were, as always, more than willing to help.

I had numerous book suggestions and lots of advice from parents who had previously endured this pain before. But I needed to be careful. Dr. J, our Neuropsychologist, had explained to us how delicately we need to approach this. Josh’s obsessive tendencies could start him on a path that… well let’s not go there if you know what I mean!  I sat in the Dr.’s office while he explained the importance of ‘parental controls’. And that it’s possible he could someday get addicted to porn if he encounters certain video games or websites… SERIOUSLY!!! I closed my eyes, pictured my baby (then 11), placed my hands over my ears and began chanting “la la la”! Not really, but that’s what I wanted to do. At that time I did what most parents would do, I ignored him!

Fast forward a year and the boy’s got questions, lots of questions… After reviewing several books and websites it became clear to me. I would have to handle this just like I’ve handled everything else, baby steps.

Step one… No more CSI episodes on Friday night with daddy, especially CSI Miami! Nothing against CSI, I love the show, but for my 12 year old… way too many prostitutes with big boobies for me to have to explain!

As I slowly explained to him how his body works and the differences between the male body and female body he exclaimed, “Stop! My ears can’t take this much more, they’re burning.” I soon realized he wasn’t ready for a whole lot more than the basics!

I need HELP my friends! How should I approach this? Every time I begin to take a few more baby steps on explaining his ever changing body he exclaims, “Stop! My ears…”

He’s getting older and I’m not sure how slow I can take this. We’ve gone the book route, pictures and all, but he seemed well…”Stop! My eyes…”  How do you get your Aspie son to truly understand ‘the birds and the bees’?  Maybe I’m trying too hard. He is after all a few years emotionally behind his peers. What do you think? I think I’m going to have to take my cues from him…

As you can tell, I’m one clueless mama when it comes to ‘The Talk’. How do you get started when all you hear is “Stop"? I’m open to all suggestions!  Maybe for now I should be happy we’ve started with a solid, though basic, foundation. Each day we’ll build on that until he is fully informed on ALL aspects of ‘The Talk’. This is turning out to be my biggest challenge to date. I’m sure there will be MANY more blogs to come about this journey into puberty… UGH… I’m so not ready, but I know with each day there needs to be a new lesson to teach him so the journey can become complete. Seriously… HELP! 

Josh ~ “Mommy I know what the fascination with boobies are, they are soft and squishy like stuffed animals. I love stuffed animals!”

Me ~ “Yeah, let’s go with that!”

 

Thanks again and HELP!

Ann

A Fact of Life (Death of a Loved One)

It’s been just over a year now since my father in law’s passing and two months since I lost my Mom. I’ve wanted to write about this for awhile now; I just didn’t know where to begin. After almost three weeks and no new blog I thought I would just start… Let’s see where it takes me.

As we all know kids with an ASD don’t like sudden changes in their lives or routines. And something sudden, like the death of a loved one can be, and was, terribly traumatic. So back in July 2010 when my father in law was diagnosed with Pancreatic Cancer we knew what the most likely outcome would eventually be. How do you prepare your child with autism for such a fate when you’re not prepared to deal with it yet yourself? We had little time to waste. It is such a horrible disease that works very quickly… As with many kids with an ASD Josh pays very close attention to details, no matter how small they will be. My in laws live just ten minutes away and seeing Pop so often we knew there would be no hiding this from him. I want to make it perfectly clear that I am no expert on the subject of explaining death to a child with autism. I can only tell you how we handled it, very slowly and in stages.

Stage one: Full disclosure

From the moment Pop was diagnosed the word cancer was introduced to Josh. He is a very inquisitive child and would definitely be noticing all the changes that were about to take place in Poppy’s appearance. There would be many questions and he would get very honest and REAL answers to all of them. As we learned what Pancreatic Cancer was and how it affected the body he too would learn. No soft answers, nothing but the truth! I followed the number one rule in our house, say what you mean and mean what you say! Some of the answers were very ‘technical’ but with some serious explaining he began to understand the nature of this nasty beast. I remember about a month before Pop passed away they were coming to our house to split wood. It was getting late and Josh wasn’t being too cooperative that morning. He stood there, not dressed yet, as I called his name…again! “Hurry up and get dressed” I said to him. He then replied, “I’m sorry Mommy I was imagining that I could take everything out of Poppy’s stomach and then put him back together again without the cancer.” Ahh… I didn’t expect that!

Stage two: Learning to ‘share’ Daddy

My husband John and Josh are very close. With John working all week the weekends were always their time to have ‘quality time’ together. That was about to drastically change. My in laws live on a farm with a house, two barns and LOTS of property that needed maintaining. Pop was VERY particular how he did things around there and John knew how much it would mean to him to make sure things continued to run smoothly. Explaining to Josh why daddy couldn’t do this, or why daddy couldn’t go there would prove to be the most difficult part of this ordeal. For fifteen months our family stayed close to home, no big family vacations, so John could be there when needed. We explained to Josh that daddy wouldn’t have his father for much longer and that it is very important he spend this time with him now. I wish Josh could have gone with him too but his autism and obsessions would have had him begging to go home just ten minutes after getting there! He once said, “I understand why daddy has to go to Poppy’s a lot but I’m still a little jealous of Poppy.”  I would often catch him looking out the window into the darkness just waiting for daddy to come home. He was supposed to be sleeping but…

Stage three: What happens to someone when they pass away?

Throughout this ordeal Josh had a lot of questions. “What will happen when Poppy dies?” I tried to keep it simple. We talked about the human spirit. How it lives on forever even after the human body is too tired to continue living here on earth. We talked about how even though the body stops working our souls, our unseen true selves, never die and go on to heaven to be with God and other loved ones who have passed on already. He seemed to find great comfort in knowing Poppy would get to see his mom and dad again soon. We talked more about this as we knew time was running out. One day while Josh was in his bedroom, door closed, he lined up all the stuffed animals on his bed. I heard him talking, or should I say teaching them, about death. “When you die your soul or spirit, call it what you like will live on forever in heaven. You will be missed but never forgotten by everybody who loves you.” That is what HE said!

When Poppy passed away on September 25, 2011 although prepared he took it very hard. His body went limp as he fell to the floor. I let him cry it all out and then we talked about all he had learned over this last fifteen months. He spent the next week at home consoling his dad like the little boy with the old spirit that we all know and love.

One problem… Josh had been to many wakes before. He knew the whole process and what was to be expected. However, my father in law was cremated and we forgot to explain that to him. He scared the crap out of my nephew Chris at the wake when, after wandering around a bit, he whispered “hey Chris I can’t find my Poppy.” Chris got nervous and said to “go talk to your mom”. When Josh came to me and asked where the casket was I had to explain what had happened and showed him where the ashes were. Maybe I should have been a little more delicate with my words, but I was completely honest with him. After learning about cremation, on the spot, he wasn’t too happy with the idea. He didn’t really have time to process it.

Stage four: Acceptance

This stage was easier for him than my husband, who is still working on it. Although he still misses Poppy he was well prepared by the end to fully understand what was happening. During those last days my father in law was surrounded by my mother in law and all of his four children. Even though we knew the end was near it was extremely important to John that Josh see Poppy one last time to say I love you (good bye) and give him one last kiss. I wasn’t sure about Josh seeing him in the condition he was in but John insisted he finish out this journey with us all. As Josh lay next to his Poppy in bed, Pop gave him a kiss and whispered “my special boy”.

Just two months ago I lost my mother on August 18, 2012. Although she had been suffering for years with many ailments this was sudden. Josh was sad but by this time was an unfortunate expert on the subject. At her wake he was the perfect little gentleman. Shaking hands and greeting people he had never even met before (I know wow). This time instead of consoling his dad he would console my father. He was always checking in on him, “are you okay Pop?”  And then in a very calm voice said, “at least she’s not crying for mercy anymore. Her body was just too tired to handle the pain and it was just time for her to go to heaven now.” HE said that!

I’m glad I FINALLY sat down to finish this (I started three weeks ago)! It feels good having shared this with all of you… Thanks for taking the time to read it!

Ann

Assistant Principal for a Day (and a little Autism Awareness too)

I must admit that when I bid on the “Pal around with A Principal” at our school’s annual SPTO dinner dance I had more than one agenda in mind. First I thought what a great way for Josh to feel important and special for a day. Second I thought what a great way for an administrator to spend an entire morning with Josh getting to know who he really is. Not that he wasn’t already known, our school is K-8 with only about 450 students in the entire school. And the cherry on top was that our Assistant Principal, Michael Pascento, is one of the nicest guys you’ll ever meet. He truly does care about the well being of the students in our school. You immediately get that feeling when you meet and speak with him for the first time. I knew he’d make this a day Josh would always remember.

It was April and how appropriate as it was also Autism Awareness Month. And as Josh prepared for his special day he could barely control his excitement. I’m pretty sure this stemmed more from missing class than anything else though. We bought a new dress shirt and tie and he was ready to roll.  I have to confess I was a bit sad to be missing this very special day for him (oh to be a fly on the wall…). At this point my anxiety levels were much higher than his. Thankfully I had spies set up around the building with smart phones and cameras ready to go. And with the technology today I was able to get pictures almost immediately, thank you Facebook!

The night before Mr. Pascento had given me a heads up to just a few things he and Josh would be doing. First on the list was a Dunkin Donuts beverage. Apparently the day can’t start without it… Attending the SPTO meeting and also visiting a former, and I must say much beloved, 4^th grade teacher’s class for a classroom observation were next. And don’t worry Mrs. Jansen he’s still giving you two thumbs up! Later there would be a trip downstairs to visit the middle school. This would be a good introduction to the teachers he would be having the next year (bonus!).

When you ask Josh what his favorite part about that day was you might be surprised by his answer. No it wasn’t missing class; it was receiving a ‘Principal for the Day’ certificate. Just the day before he said, “you know mommy I don’t think I will ever get an award. I’m not really good at school and I’m not really good at sports. You have to be really good at something to get an award.” I wanted to cry. Oh wait… I did cry! How sad that he was feeling this way. But wait… during the SPTO meeting he was presented with his certificate or as Josh said “my very first award ever!!!” Mr. Pascento sent me a picture of Josh with his certificate. I could barely recognize him. I don’t think he has ever smiled so BIG before. Way to make a kid feel special! J

Now I’m going to talk about my favorite part of that day. The school was aware of an autism walk we were doing in June and they were also aware that Josh knew all about his diagnosis of Aspergers. Since it was April it was also suggested that Josh help plan our school’s first annual autism awareness day. I spoke with Josh and he was all for it! The two sat down and sent an e-mail to all the teachers. April 30^th would be “Light it up Blue” day at the Sherman School. All were encouraged to wear blue that day to help create a sea of blue through the halls of our school. Josh would even be selling blue Autism Speaks bracelets for the occasion to help raise money for our walk in June.

I was told that day, April the 30^th, you could see the pride on Josh’s face. He had helped to do something that had never been done at the school before. Although after being interviewed for the local paper about it I think it went a little to his head. I would like to share a response to a question Josh was asked with all of you though.  When asked what do you hope your fellow classmates and teachers learned from “Light it up Blue” day? He replied “I hope they learned about what autism is and that they should be aware that people with autism sometimes need special help. It’s nice for kids to 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 works a little different.” As a mom of a child on the spectrum I can’t tell you how important it is that he gets that!

The awareness doesn’t end there... I have been reassured that from this point on the Sherman school will continue to acknowledge autism awareness month, and "Light it up Blue" each year!!!

 

As always I thank you for giving me a moment of your time.

Ann

 

 

 

 

 

Friends Helping Friends

Last Friday night was my monthly get together with an awesome group of ladies who know exactly what it’s like living with and raising a child /children on the autism spectrum. Just like the FB page it’s great to have people to laugh and share with, and more importantly get another perspective on what someone may be going through.

A friend was bringing her son with her and I was more than happy to have him come and hang out with Josh. However, he is 4 years younger and not very verbal. Not a problem…  Josh and I spoke about how the little boy has autism too, but he may not answer back when spoken to. Josh replied “That’s alright mommy I remember learning about the different kinds of autism. Remember we watched a video about it?” I love when he remembers important information like that!

Personally I think it’s extremely important for kids on the spectrum to know their diagnosis and to understand it the best they can. Since eight years old Josh has know he has something called aspergers/autism. He didn’t know what that was but by just introducing these words to him was a start. As the years go by he becomes more aware and is able to comprehend more on this subject and how it pertains to him. As he learns more about this disorder he also learns, and understands, that some things like obsessions are out of his control. He no longer blames himself or calls himself stupid for seeing the world differently. He understands it’s the disorder not him… His brain is wired differently. He gets that.

It was great to watch him in action with this little boy too. He was able to put aside what he really wanted to do, play Xbox, and instead he kept the little boy occupied. Not a hard thing to do since the young man has just discovered Lego’s and we have LOADS of them in the play room. That, with a Toy Story movie marathon running in the background He was all set! It was a very proud moment for me. Just watching him put aside his obsessions/preoccupations to help another, younger child with autism, showed me how much he is growing up and understands! J

I’m beginning to realize the importance of those on the spectrum, especially a high functioning autistic like Josh, becoming well educated on all the autism spectrum disorders. And as Josh’s mom I take educating him on this a very serious responsibility. Being well informed will not only allow him to continue on through life as his own best advocate, but he will hopefully be quick to stand up and advocate for another on the spectrum who may be having a harder time finding his/her voice to do so themselves.

At the end of the evening, when all was quiet, I noticed Josh stimming quite a bit. Running up and down the hall and humming mostly. I tried to get him to go to bed but he said, “I’ve been thinking about Xbox all night and I can’t go to sleep until I finish thinking through the next level of my video game.” He also said, “I really liked playing with the little boy tonight. It was a lot of hard work though! He didn’t talk that much but somehow I think I knew what he wanted to do. It sure is hard watching after a kid with autism!” He seriously said that, and thanks for noticing buddy!!!

About an hour or so later he was FINALLY asleep! Not much rest though; up at 6:00 a.m. ready to begin the new level of that Xbox game he had been obsessing about the night before. And so began another “typical” Saturday in our house…

 

Thanks again for giving me a moment of your time,

Ann

 

“Thank You” 

It’s been awhile since my last blog post. Life took another unexpected turn when my mother passed away on August the 18^th. After a LONG trip down south for the funeral, with eight of us packed into a Tahoe, and Josh starting middle school the day after our return home I wanted to focus on making sure he was prepped and ready to go. I’m pretty sure he’ll be fine; after all he has been at the school for nine years already. I’m the one having the “middle school” anxiety! Then last night before going to bed I checked in on the new Facebook page I created, Me and “My” Professor (shocking…I know). I have found this to be a wonderful place where I can share what I have learned about Autism/Aspergers while learning from others as well. It’s off to a slow start but little by little I am connecting with other parents of children with Autism/Aspergers as well as individuals with this disorder themselves. I have received numerous messages from parents and adults on the spectrum encouraging me to continue on. I thought I would take the time this week to write a little “thank you” note to these individuals and to the autism community for offering me such a warm welcome!

First I would like to thank all my Facebook family and friends for putting up with all the “Josh” posts through the years. When he says something funny and insightful I just can’t help myself. When I come across information on Autism/Aspergers I am compelled to share and I’m sure at times it’s annoying. I wouldn’t be surprised if some have hid me from their newsfeed, LOL! That is why I decided to create my own page named after this blog, Me and “My” professor. It has become a place where I can FREELY post about Autism/Aspergers and share some of what Josh has taught me both past and present. Thank you to all my friends and family who hadn’t already hidden me from newsfeed and *LIKED* and shared the page. This is where it all begins.

Next I must thank ALL the other Autism pages that have *liked* my page and shared it with their followers. It’s an amazing feeling when I receive a message from another person on the spectrum telling me how they can see themselves in my Josh and that even though they have endured some difficult times they turned out more that okay, they turned out AWESOME! It’s a great feeling to know I can now, at any time of the day, ask an ASD related question and get feedback from those who have gone through it, are going through it and made it through . I trust you all completely and it’s comforting to know that I am not on this journey alone, none of us are, although at times it will still feel that way.

There are still those who don’t understand why I do this, many of which are family and close friends. To them I say, educate yourself on Autism/Aspergers. Until then you won’t understand. I am doing all I can do through this blog and the FB page to help, the rest is up to you!

I’m making this short and sweet today but I’m also making a promise to myself and all of you to try and blog at least once a week (emphasis on TRY). There are so many topics to dig into these days… He’ll be twelve in twelve days and I have slowly been having “the talk” with him. I guarantee a good blog out of this one! Just last week during one of our conversations he said, “STOP I’ve heard enough for now. My ears can’t handle it and my stomach feels like I’m going to throw up!” All done in very dramatic form, and that evening he did throw up! This from a child who hasn’t done that since he was three. Coincidence??? Hmm… I’m thinking first a blog on how he handles the death of loved ones. For someone so young you’ll be amazed how mature he is. (Just a couple of teasers for you.)

I’m closing with a final THANK YOU to all of you again. I’m hoping to reach 250 *likes* on my page by October 1^st (Josh’s Birthday). With everyone’s help I’m sure to get there and will continue my never ending journey of educating myself and others on Autism/Aspergers. I already have more *likes* on my ASD page than I have FB friends on my personal page. I’ll consider that a small accomplishment, for now. J

 

Thanks for giving me a moment of your time, and until next time take care! J

Ann

 

 

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

 

 

The TRUE meaning of friendship

What does friendship mean to you? For those with Aspergers/Autism it means something very different. Those with the most friends tend to be the most outgoing/social right? Aspies (a term sometimes used by those with Aspergers) will have a difficult time in life both making and maintaining friendships. It’s not that they don’t want them in fact they most likely value friendships more than their “typical” peers. If you have an aspie as a friend count your blessings and consider yourself lucky. These friendships are as true as they come. They come without judgment, without lies and most important they come with the purest form of loyalty. However, making friends is a problem for them. Without being able to fully read social cues or understand the complexity of the English language it makes for what can sometimes be a very painful process. For Josh I know he would rather spend his days playing Lego’s or video games by himself. Or you might find him cuddled up next to his best friend, as he puts it, Rusty “buddy” Jordan (the cat). Kids with Aspergers/Autism can sometimes be the perfect targets for bullies. It is extremely important that they learn early on the difference between a “toxic” friendship and a “true” friendship. Without being able to understand social cues they may not always be able to understand when someone is making fun of them or even using them. We have had to deal with this early on with Josh and I am hopeful that he is learning to understand the difference. There was an incident in the third grade when another child wanted something of his. It was something of great importance to him, an R2D2 Lego figure. If you know Josh you know that his Lego’s mean the WORLD to him! This child told Josh that if he didn’t give it to him he would tell the principal and that Josh would get into a lot of trouble! That afternoon I found him in the playroom curled up in the fetal position crying his eyes out. I didn’t know what was wrong. Was he in physical pain? It took the entire afternoon to get it out of him because he didn’t want to get his “friend” in trouble. I will never forget the look on his face when he told me he had no choice but to give it to him. When he finally calmed down I sat him down to have a talk about how friends should treat one another. I also thought that it was important for him to know what had just happened was, at least to me, a form of bullying. If anyone threatens you in any way, shape or form they are not trying to be your friend but rather they are taking advantage of you. Now you may think I am overreacting but the year before there had been another incident with the same boy on the playground at school. Apparently this other boy had an ongoing feud with another student and decided to get Josh involved as his accomplice. Well this was Josh’s introduction to “a visit” in the vice principals office. He didn’t like it very much and was terrified of getting into trouble. I don’t think he’ll be back anytime soon, I hope!

Early on Josh always gravitated toward the more rambunctious kids. From the story above you can see that didn’t always work out too well. However, there are a few kids who do accept him and probably don’t see any “differences” in him either. These are the kids who have always, since pre-school, reached out to him. They tend to make the first move to get Josh involved in playing. I have even caught them looking behind to see if Josh is keeping up with them. If not they’ll call his name and pull him back in. One of Josh’s teachers told me of a day when Josh was at the back of the line and a “true” friend yelled back to him, “Don’t worry Josh you’re still my best friend”. Great Kids! There have been days though when Josh has come home sad because no one played with him that day. Sometimes he might just follow a kid around expecting them to understand without words what he wants. He is still learning how to approach and ask if he can join in. It’s not that the other kids don’t want him to play; it’s that they don’t know he wants to play. He’s getting there though…

I’m trying to keep it short and sweet but I find myself rambling on again and losing focus! The point I am trying to make is this, through the years, especially high school, how many of us have tried to change something about ourselves to try to fit in? I know I did. I thought too it was more important to hang with the “in crowd”. I envy those with Aspergers. They know immediately who they are. I ALWAYS tell Josh it is the quality of friends not the quantity that is important. Of course it took some time for him to understand what that meant! Not everyone is going to like him or want to be friends with him. Those who do choose his friendship, no strings attached, will never wonder where they stand with him and they’ll have his loyalty for life! I wish it didn’t take me 42 years to learn that, but I guess it was going to take a very special little boy to teach it to me.

I can only imagine what my life would be like right now if I knew then what I know now. Hopefully not much would be different, but if I had “always” been myself 100 % of the time perhaps I would have been able to make and maintain more lasting “true” friendships myself. I’m learning though…   

Where It All Begins...

Okay, here I go... I’m not sure where to begin and to be honest I’m a little scared to do this. I am not a writer and after 11 ½ years I have so much to say and share. I’m not going to start with the usual “from the beginning” stories. It was the usual not meeting all of his childhood milestones. Preferred playing by himself rather than others etc. etc. etc.

Skip forward to May of 2011. After a second visit in three years to his neuropsychologist (after the first he was diagnosed with PDD NOS) we received the current diagnosis of Asperger’s Syndrome. For those of you who don’t know, Asperger’s Syndrome is an Autism Spectrum Disorder (ASD) that is characterized by significant difficulties in social interactions alongside restricted and repetitive patterns of interest and behaviors. Also, many have a lot of sensory issues as well. Josh is extremely sensitive to smells, tastes and touch. He tends to eat the same things every day and yes he can tell if you switch brands! However, he has an extremely high tolerance for pain. If he says something hurts we pay close attention!!! He also sticks to the same routines every day and likes to follow a certain schedule. He has come home filthy from head to toe but refusing to take a shower because “he doesn’t shower on Fridays”. Transitions are difficult for him. If there is going to be a major change in his routine we warn him ahead of time. The same is done at school. The TOUGHEST thing for my Josh is his restricted areas of interest. If you want to see an 11 ½ year old fall apart, just move his 'stuff'! It’s not a pretty sight and the meltdown can last… Lucky for the public at large he chooses to have these mostly at home.

Although he struggles socially he is very well like by his classmates. It may often look as though he is playing with them when in fact he is playing alongside of them. Yes, there is a difference! I have been told, and have also seen for myself, that he prefers to play with the younger kids who he can relate better socially to. When you first meet him you don’t notice anything but a polite and extremely well mannered young man (I wish I could take credit for all of that but). Spend the day with him and you’ll soon realize he has some differences.

Most of us think before we speak (at least we have the ability to do so). People with Aspergers don't do this. There are no filters in their minds so watch out you may be surprised at what comes your way. I now have to learn to live with Josh in a literal world. That’s not easy when the world is full of sarcasm, slang and irony. I must admit it’s hard to get mad at a kid who can insult you and apologize in the same breath. Here’s an example, out of the blue one day last year Josh said to me “Mrs. Jansen is prettier than you mommy. I’m sorry I’m not trying to hurt your feelings but I just had to tell the truth.” I laugh every time I remember that! I could write for days about Josh and his “truths”. He can’t help but be honest. If he does tell a lie you can count on him ratting himself out at some point. It could very possibly be at 3:00 a.m. (that’s happened).

Okay this is quickly turning into a biography on Josh and that’s not my purpose. My purpose and the purpose of this blog will be to share what I have learned through Josh and his unfiltered beautiful mind. You can only imagine after all these years what I have heard and learned from this child. He makes me stop and rethink everything. How does someone his age hold so much wisdom? He has no idea that he has been the greatest teacher I will ever have. My father in law used to say talking to Josh was like talking to one of his older friends. Where does he come up with this stuff???

For those of you who are on facebook you know I’m constantly quoting Josh. I can’t help it. He’s so damn funny while being extremely serious.   I always here are you writing this down or keeping a journal, and I wasn’t. Now I am and I have realized there a lot of lessons to be learned from Josh and all kids on the autism spectrum. In the weeks to come my hope is to continue writing about what I have learned from my very own “little professor”. He has a very unique take on most subjects.

I feel like I am leaving you without really getting started. There is one lesson though I would like to share with all of you. I have learned that individuals with Aspergers should not be thought of as having a disability but rather a different ability, and perhaps the world would be a better place if we all could try to be more like them instead of the other way around.

Thanks for taking the time to read this intro to my blog. In the upcoming weeks I hope share special lessons I have learned from an Aspergers point of view. I hope you’ll learn something too while having a few chuckles as well.

Ann