Anxiety, Fear, and Chest Pains!

When you're doubled over with severe chest pains, yet you continue to cook dinner with your left hand and Google symptoms of a heart attack with your right (true story), something needs to be done!

For years I've put everyone else's needs first...well now it's mama's turn. If I don't do it now, there may not be a later. I truly believe this to be true! For fourteen years I've done nothing but worry about JJ and his future. Then I'd tell myself, nightly, "it's all good...he'll be just fine!" I do believe that but... How good will it get? Know what I mean??? At 14, entering high school, and having them talk (ALREADY) about "what do we see him doing after graduation...", has this lady's  mind in panicked overdrive!!! And guess what happens when you hold those worries close to your heart? Yes...anxiety, fear, and NOW chest pains!

If you've read some of my previous blogs, then you already know that JJ has just graduated from the only school he's ever known. For twelve years...many of the same students, teachers, special educators, and para professionals. And many of these individuals have become dear friends of ours. Over the years I have learned to lean on them for support, guidance, and reassurance that... "It's all good...he'll be just fine." But what happens when that suddenly goes away? Well, from my personal point of view, I can tell you it feels like the rug has been pulled out from underneath my feet and I'm running with socks on, trying to keep from falling, all while the room is spinning! It won't stop...

We were comfortable... They all knew JJ and his quirky ways. And with all the autism awareness spread at the school, I felt his peers really understood and accepted him. There may not have been a lot of play dates or phone calls to get together, but he was well liked and most of all accepted for who he is!

They've all graduated and are moving on to their various high schools. Only a very small handful of those heading to the same school as JJ. Will he adjust well to a new school? Will the teachers take the time to know and, most importantly, understand him? Will he make new friends? Will he be bullied, teased, made to feel unimportant? Will he find a path he'll continue on after high school? What will he be when he grows up??? And will his former classmates want to keep in touch with him??? The unknown is frightening!!!

All these questions are making MY anxiety unbearable now... I can't focus, I'm snapping at others, and my level of patience is at an all time low! Even JJ has suggested..."You need to see a psychiatrist and start taking better care of yourself."

These worries aren't going away anytime soon. And it's going to be a long four years of high school...so I better take JJ's advice. As usual, he makes the most sense of anybody I'll ever know!

At the end of 8th grade JJ was asked to answer some questions about his experiences and what he felt about leaving, and moving on to high school. His special ed teacher e-mailed the following picture to me.

Find a quote that personally connected to you. How could you use it as you move ahead into high school?
JJ ~ "just to keep calm and carry on even in the toughest times that you are having in life."

I'm going to try my best to take this advice. In the meantime, I've taken his advice and made an appointment with the Dr.! I know now, it's impossible for me to take on all the "will he" and "what ifs" without taking better care of myself FIRST. Thanks JJ for putting it into perspective for me, once again! You may not let me publicly call you my professor anymore, but you will always be my greatest teacher!

I'm sure there will be future posts about my adventures on "the couch"...but until then, I'm going to take long walks, take deep breaths, and keep calm. Just like JJ said! Wish me luck, I'm going to need it!!!

~ Proud Aspie Mom

He thought he had nothing to be proud of...

When he walked into the house, with a sad look upon his face, I asked him "what's wrong?" His reply... "I thought I did some good stuff this year, guess not."

Let me explain...The school year was ending, his final year at a school he's attended for twelve years (Pre K - 8th), and the kids were all excited for the year end activities! One of these events is an awards night where students are recognized, mainly 8th graders, for academic achievements and various other school wide achievements as well. Students receiving awards would receive a letter in the mail. JJ checked our mailbox for about two weeks before he realized, nothing was coming. I took the sad faced boy aside to have a little pep talk... Making him realize that there are very few awards presented that night, and that he wasn't the only one not receiving one, took some time. He soon just accepted it and moved on, like he always does, to the next thing on his schedule for the day...

I'm not going to lie here...it wasn't only a disappointment for JJ, I too felt a bit let down. At first I was really upset/angry...but then I remembered my talk with JJ. We talked about the greatest year he just had. A year where he stepped way outside of his comfort zone, not just in school but outside as well... No piece of paper/award was going to change that!

So he thought he had nothing to be proud of, after reading this post I hope he'll realize, what I already know, he has EVERYTHING to be proud...

The school year began with the kids being told, "this is your last year here, your last chance to do something you've never done before...make it count." My "Mr. Literal" took those words to heart and, what we called, the year of Josh would soon take off!

As I said before, this was his twelfth year at the school. JJ started just days prior to his third birthday in their preschool program, where he spent three years. Through the years he's never shown much interest in any of the school's extracurricular activities, EXCEPT Lego Club and Star Wars Club (Of Course). Never showed an interest in attending a school play, concert, talent show, etc...and speaking in front of a crowd was painful to watch at times. So Imagine my surprise when he came home last September and declared, "I'm running for student council president! I might try out for soccer too!" The desire to play soccer soon left his thoughts, but he DID run for president! He may not have won the actual election, but we all know he really did... He made posters (ok, I helped) to put up around the school. He even gave a speech, which he wrote, in front of the entire middle school with confidence. When he lost the election, he did so with grace...never upset for a moment, because he knew he did something amazing. Now that's WINNING!

Next up... "Hey mom, I'm auditioning for the Song to Symphony play at school." My first thought was, does he realize this will involve acting, singing, AND dancing? These are all things he's never enjoyed, but he was on a mission to give it a try. The long hours of rehearsal soon began to take its toll on him. He had to adjust his daily routine, which meant less time spent on his passions...video games, Star Wars, and Legos! After numerous text messages such as, "Pick me up NOW Please Please Please, I'm your only son!", and "I'm not staying until 5:00, that crazy!", he stuck it out... There he stood, center stage, acting, singing and YES...dancing too! As my husband yelled out, "that's my boy!", everyone knew what that moment just meant to us.

It was now December and the new year was quickly approaching... After the first of every year our family begins our annual mission to raise funds for those living with autism, through the Western Connecticut Walk Now for Autism Speaks. This is something we have done together for the past six years, and JJ really enjoys it! One of our proudest moments of this year was when JJ was asked to give a speech at the walk kick off dinner.  At first he said, "no, I already gave a speech this year, just one speech per year!" After thinking it through, he realized it was a new year and then said yes. He organized his thoughts, wrote a speech on why he walks, and then bravely stood in front of a room full of people where he gave a speech we'll never forget! Autism Speaks has recently posted the video of his speech to their national Facebook page and website! Yes...he went national!

It was now April, Autism Awareness Month, and time to get the school, once again, involved. For the past four years his school has "celebrated" Autism Awareness Month and World Autism Awareness Day on April 2nd! Why, because when JJ was in the fifth grade he asked them to do so. Since then, every April, the school has "Lit It Up Blue", helped raise funds with us for Autism Speaks, and educated students about the autism spectrum! This year the school went above and beyond... Autism Awareness Month began with the school dressed in blue and an assembly on autism. The students were surprised when a former student of the school, Ninja Warrior, "The Weatherman", Joe Moravsky joined them and spoke about perseverance, acceptance, and overcoming one's differences! This also kicked off a month of fund raising, which ended in a school wide autism walk of their own! Over $2,200 was raised this year by all the hard work done by all the students and teachers... JJ should be very proud of this, it all started with one little question four years ago..."Can we have an autism awareness day?"
We also have to mention JJ's fourth grade teacher Mrs. Jansen here, we thank her for all the help and support she has given us. She helped to get the ball rolling at the school, and because of her it's kept on rolling... Thank You!

The year is coming to end now and JJ is running out of steam. Wait... "I'm trying out for the school play!" More acting, singing, and dancing? Could this really be true? Not so fast... "I told them no singing and dancing!" he said. The play was Annie Jr., a musical, so no big roles here. However, he did have a small role as an apple seller. Just a few lines, but he participated! The rehearsals were long, and text messages longing to come home numerous, but he made it through... Success!!!

 Oh wait... How could I forget? School dances...he FINALLY attended some school dances! He even asked a girl to dance! She said yes... A small achievement in the scheme of things, but probably his proudest moment of all. ;)


It's now June, which brings us back to where we started here, and the year was was almost done. I think my pep talk sank in and I hope he now realizes, you don't need a piece of paper/award to tell you you're amazing! Recognize from within, not from other's opinions of you, how great you really are, and my dear boy...YOU are full of GREATNESS!


We sat and watched him graduate at the end of June, from the only school he's ever known, confident he will continue to make us, and himself, proud for years to come. This is only the beginning...look out high school, here he comes!!!

~ Proud Aspie Mom

A New Beginning

In what seems like a galaxy far far away, approximately a year and a half ago, I wrote my final blog post as Me and "My" Professor. A blog, and FB page, originally created to share what I was learning through my son's wisdom. How he saw the world through his simple, yet brilliant, outlook on life. Through life's little twist and turns, and after he read some hateful comments directed towards him, he wanted to take some time away from it. His reaction had me rethinking where I wanted to go with this blog as well, so I took a break too. Wow, how time flew... 

Since Josh has graduated 8th grade, and is preparing his high school journey, I've been thinking a lot about how far he's come in 14 years... From the lowest of "downs" to the highest of "ups", there has been one constant in all of it... I've ALWAYS been proud of him, and by sharing these stories, hopefully, I can show others that THERE IS ALWAYS HOPE...NEVER GIVE UP, because another PROUD moment is just waiting around the corner! As, a Proud Aspie Mom I know this to be a FACT, and it is too important to share these stories with others!

So...before we start fresh, there are a few ancient post from the old blog you may like... I'm looking forward to future posts filled with proud moments that will not only inspire me, but you as well!

And don't forget to check out, and "Like", our new Facebook page as well... https://www.facebook.com/ProudAspieMom ! :)

It's good to back where we belong! :)

~ Proud Aspie Mom

The Homework "Thorn"

Homework...a headache many parents of typical children have to deal with on a nightly basis. But throw it in the direction of an Autism parent and it takes on a whole new meaning... Here is just a quick little story of my latest battle to remove this seemingly permanent thorn!

Homework Hell... A place I've been to too many times before! And I'm pretty sure I'll be visiting again sometime soon! It's an unavoidable situation that isn't going away... We've been back and forth with his teachers on this, and just how important it is to have, or not to have, nightly homework. Yes, it reinforces what he's learned throughout the day but does it really???

After working hard all day, sometimes harder than his typical peers, his mind will soon reach that "breaking point". That moment when it simply just blocks out anymore information being sent its way, or as the Professor puts it..."I'm logging off!" He may want to "log off", but there's still another good hour of work left to be done. So he's pushed to that breaking point I spoke of... Ahh, the breaking point...where screaming, crying and the demands to be home schooled begin once again! Now he's well beyond exhaustion and any lessons he may have remembered before the breakdown are more than likely lost! This is the point I usually ask myself, What's the point?

We are very lucky to live in a small town where the teachers really do care about his, and my, mental well being. The lines of communication are always open and are OFTEN used... A LOT. Homework has been modified and re modified so many times I've lost count. The latest... All parties agreed the Professor has a lot on his plate in the evening and homework should be limited to no more than 45 minutes a night. The deal is, as long as he works hard and does his best to get it done, whatever isn't finished can be done the next day in first period. He has the BEST first period! It's set up that first period is with the Special Ed teacher who works with him on such difficulties as homework...

Well...that didn't last long! Why? It is IMPOSSIBLE to keep up with demands of middle school homework in only 45 minutes. And as the year rolls on, the demands become greater. Not even first period can bail him out of this sinking ship! Which brings us to last night...

I received the daily homework e-mail from his teacher and knew immediately there was trouble up ahead. Between the essay that was supposed to be done in school, and wasn't, to the Science, Social Studies, Math and reading...HOW is this going to get done in 45 minutes??? Answer...it's not!!! But here's the problem, you've told my rule loving, routine oriented, rigid boy he's only responsible for 45 minutes. If you tell that to him you better believe it is written in stone somewhere in his mind!

Now this is where I got a little angry... The boy gets into the car after school and the first thing he tells me is "mom Miss * told me to tell you that I'm not doing my homework very well, and if I don't finish my Social Studies tonight I will have to write an essay tomorrow." WTH? This is where I'm slamming on the brakes!!! I have watched him work on his homework independantly, as asked, and it's always more than 45 minutes. Obviously it's time to change the homework routine, but to punish him with more work? Yeah...that'll get him moving, I think not!

So we, the Professor and myself, put our heads together and made some changes. On a large piece of paper we listed everything that needed to be done. He could take an hour break after school but then he needed to choose two items off the list to do. BTW, those two items took him 50 minutes to complete. Two down and four left... By the time he was through finishing up the Social Studies, Science and LA we were up to almost two hours of work! And no, I didn't make him do the required 20 minutes of reading after all that. He said it best, "I've read enough words for one night!"

This morning I reopened those lines of communication with the powers that be and I was very pleased with their quick response! This lead to a very productive conversation and a new homework plan...again. Obviously 45 minutes isn't enough time to do homework on some nights, so take that time limit off the table. We can't have him looking to the clock all the time... The most difficult thing for him is anything related to LA, especially writing (he's dysgrahic). This will be the focus of his in school work first period. There will be certain areas of each homework assignment that must be completed at night. The rest could be worked on at school as well. It will be clearly noted what those areas will be! And we will monitor how long this will take each night. Wish us luck!

There is one very important thing I would like to point out and teachers PLEASE take note! Just because you see him working very hard at school, don't confuse this with his ability to continue that pace at home, he won't! Remember, his mind takes at least twice as long to process information and at the end of the day it won't be long before that "breaking point" is reached.

We'll see how it goes, I guess the only way to see what works is through trial and error. Hopefully we'll weed through all those errors and find a solution that will work well for him, and me, that carries him through high school. Is this the end of my homework "thorn"? I doubt it, but I'm keeping my fingers crossed!!!

~Ann~

Autism ~ The Importance Of Stimming

"Stimming" is a term used to describe self stimulatory behaviors in people with Autism. Some examples are arm/hand flapping (a favorite of the professors), body spinning, rocking, lining up toys (a.k.a organizing to a 13 yr. old), smelling objects or hands and vocal stims. To me a vocal stim could be anything from letting out loud "squeals" when excited, to constantly repeating back phrases heard by either a television show or something a friend has said or asked of him (echolalia).

Everyone stims from time to time. Have you ever found yourself tapping your fingers, chewing on the end of a pen cap or twirling your hair? I'm willing to bet it helped you calm down or focus better on a task you were trying to complete! I have several friends who enjoy running, and I bet they too find their feet pounding the pavement to be self soothing. Perhaps a sense of calmness comes over them?

This is what stimming does for a person with Autism. It calms them down, helps them to refocus. It may counter act something overwhelming in their environment (such as sounds, lights or smells). It can simply relieve them of their high levels of anxiety typically felt in their every day lives.

Should stimming be encouraged or discouraged? The answer could be both. Since stimming is an involuntary reaction there is no way to completely avoid it and I wouldn't want him to anyway... As it helps him to focus and get back on track I encourage it, most of the time. But we are learning there is a time and place for it. When he is in the privacy of his own home, his sanctuary, all bets are off... Do what you need to do as long as it doesn't  interfere too much with your everyday responsibilities!

I tend to discourage it a bit when he is out in public. Try to refocus the stim on something else. Perhaps keep a ball to squeeze on in his pocket. He actually prefers to keep a Lego man, to rub, in his pocket instead. As my dear professor gets older it has become almost instinctive to hold back on the stims in public. I do notice him slipping them in from time to time, but he is aware of them and will restrain himself. What is the downside from holding them back? Well... I get a VERY wound up boy at the end of the day, especially the school day, ready to EXPLODE and in DESPERATE need to stim. I'm sure this has a lot to do with our homework struggles nightly (but that's a whole different future post)!

So what has me thinking about stimming this morning? For the first time I realized Josh was aware of them and why he does them. He UNDERSTANDS!!!

While watching a movie this morning, an action movie with zombies, I noticed he kept pausing the movie. After pausing the movie he would run laps up and down the hall while flapping his arms and stomping his foot. My husband asked him why he was doing this and his answer simply amazed me..."My body is having a spasm. I can think better about something when I am having a spasm."

After we heard that, I sat him down and explained to him that those "spasms" he was having were actually called stimming. I went into detail about it with him and he seemed to understand the significance of stimming as it related to him and Autism. However, I am most impressed that he is able to recognize when a stim is necessary. And I'm sure the need to pause and stim during the movie was his way to comprehend all the action taking place.

Now I'm more hopeful than ever that he will continue to learn, as he grows and matures, when it is necessary to allow himself to stim and when it may be an inappropriate time or place for it... But to always know that it is normal to have these behaviors, and it's his body's way of calming down to refocus once again.

~Ann~

The Year In Review... Top 10 Accomplishments According To The Professor!

We've cracked open the accomplishment jar and WOW...what a year it's been!!! There are just too many to recap here, but our Professor has agreed to share his top 10 accomplishments of 2013. I really wish he'd let me share them all. Some are just too funny!!!


#1) I went skiing in February. It was my second time on skis, but my first time really going down a big mountain. Everyone cheered me on and couldn't believe I never skied before!

#2) I came in first place in the Star Wars trivia contest at my school's Star Wars club! Mom said, "that doesn't surprise me!"

 

#3) I continued to master my Lego building skills! My favorite creation was "Attack Of The Zombies!" I love everything that is zombies. My favorite zombie show is The Walking Dead but my mom won't always let me watch it!

#4) I helped lead the way in our school's 2nd annual "Light It Up Blue" day. On April 2nd every year we wear blue to show our support for people with Autism. My school also did a lot of fund raising in April to raise money for an Autism walk I do with my family and friends ever year. More than $1,500 was raised by the school, and my favorite fund raiser was the dunk tank. It was so funny to see the teachers get dunked by the students!!!

#5) I did the kids Marathon in June and ran the final mile of a real marathon!

#6) On June 2nd I helped my mom, and team, cut the ribbon at the beginning of the Walk For Autism. I was very proud to be the team leading the way. It made me feel very happy inside! I couldn't believe all the people who came...

#7) It felt really good to get some awards this year too. My favorites were the school award for commitment to my school's community, and the Autism Speaks Silver Team award for raising over $3,600!!!

#8) I finally made it through an entire baseball game with my dad. It made me feel good to see him so happy! Next we are going to go to a hockey game in January.

#9) Dad and I rode the roller coaster. I am very proud of myself for going on that ride. I'm happy I did it because NEVER again...NEVER again!

# 10) I turned  13 and went to my very first PG-13 movie! And my parents are letting me play a few more mature video games too! Whoo Hoo!!!
(Not too mature though!)

I am so proud of Josh and all of his accomplishments this past year, and I love all those he chose to share. There are SO MANY more...the list could go on, top 100 perhaps?!? And I can't stress enough what a great experience this has been for all of us. One lesson we learned was that no accomplishment is too small. Each is a stepping stone to a bigger goal... To see the joy on his face as he relived some of those forgotten moments was priceless!

So now I urge you to find an empty jar and start filling it with all your accomplishments throughout 2014 (It could even be a family jar). They can be big, small or even silly... Maybe you'll even overcome something you've been working on for years, like riding a bike...hint, hint Professor!


Thank you again for taking the time to read my little blog, and may this year be the happiest, healthiest and most accomplished yet...

~Ann~

First Rule Of Autism...TALK About Autism!

As time goes by I am often reminded of one of the best decisions we ever made as parents of a child with Autism. That decision...to always talk about Autism with Josh. To always keep our dear professor informed, and educated, about his diagnosis of Aspergers. Knowledge is power and as an empowered self advocate there will be no stopping him! Not just educating him about his Autism Spectrum Disorder, but making sure he realized what a large spectrum it is... NO two people with Autism are alike. I'm sure you've heard the saying, if you've met one person with Autism then you've met one person with Autism. Lesson number one...truer words were never spoken!

I'm sure I've mentioned this before but just to recap...
From the moment we received that "official" diagnosis in 2008 the subject of Autism was introduced to Josh Immediately. First they were just words without much meaning to him at all. Soon, as time went by, the meanings would become clear to him. So clear in fact that he now feels obligated to try to help those on the the spectrum with more severe forms of Autism by spreading awareness and acceptance. Not just at home but in his community as well. "I think it's important for me to help people with Autism who can't talk. I may have some idea of what they are thinking." ~ Josh
BTW, his favorite book on the subject... All Cats Have Asperger Syndrome by Kathy Hoopmann (I highly recommend it).

A lot has happened since 2008... He's gone from being diagnosed with PDD NOS to Aspergers in 2010. Then in 2013, under the new guidelines laid out in the DSM-5, he falls under the new category of Autism Spectrum Disorder (ASD). That's a lot to digest...The education of Autism will never end, I too am always learning!

It makes me so proud to see him in action. He takes great pleasure in doing walks for Autism, raising money and awareness for those in need. During his school's annual "Light It Up Blue" day he enjoys sharing what he has learned with others. Continuing to pass along all the valuable lessons he is learning along the way. I consider it a privilege to have a front row seat to his "sharpening" those self advocacy skills he is sure to need in the near future.

Why am I writing about this now? Well... While at a friends house yesterday Josh was playing with this friend on his new Wii U. His friend was excited to play with him, but Josh was also interested in the usual XBOX 360. Although we spoke about doing what others like to do as well, he still gets "stuck" on what he wants to do. This little boy he was with is so amazing. He told his mom that it was okay, and that he understood why Josh wanted to play something else. You see... this fine young man knows about Josh's Autism. How?!? Josh told him! WOW! I was thrilled that he spoke up for himself...and proud that it led this boy to ask his mom, "what is Autism?" And from there a discussion took place, making one more individual Autism aware. My boy...changing the world and he doesn't even know it. He's a natural at it!!!

When a parent asks me, "how did you tell Josh about his diagnosis?" I remind them of the first rule of Autism...TALK about Autism. Start off small and as they get older, and can understand more, share more. Before you know it you too will have a thirteen year old self advocate teaching you a thing or two!

~Ann~