Thursday, September 3, 2015

Delcared a 'No Fun' Summer

He declared this past summer a 'no fun' summer right at the end of the last school year and he stuck to it.  This summer was so much different than any other summer....ever. 

It all started in May.  We did the same as we did every end of school year and that is to make our giant poster board sized summer calendars.  In the past, if there wasn't anything in the blocks, we had to fill it.  He needed to constantly be on the go with no exceptions.  Then, on a separate piece of paper, we would right down all the other places and people we wanted to visit like the beach, favorite restaurants and stores.  All of this needed to be displayed so he could constantly keep an eye on it and what was in store for us that particular day.  Everything was ready but he had other plans.

 As soon as school was over he decided this was going to be our no fun summer.  He didn't want to go anywhere.  No vacations, no restaurants, no stores, no picnics, no parties, no public pool, not even going outside.  Well, at least he would maybe go outside at night when the sun went down.  He may be part vampire...not sure. 

We missed graduations, birthday parties, family and friend picnics. All I can say about that is thank you to everyone we had to decline.  Thank you for inviting us and thank you for respecting our decision not to attend.  It has been a difficult summer for our family in that aspect. 

As a family, we are treating this as a phase.  He used to love being on the go, seeing new things, exploring new spaces.  We tend to follow his lead.  He knows we are always there for him when he needs us so we took a back seat until he works this out.  Finding words to tell us what is going on is very difficult for him.  My theory is he works so hard all school year that this summer he just needed a total mental break before he starts middle school and I can respect that.

Now don't get me wrong, we did sneak some fun into our summer but it all revolved about what he wanted to do and when he wanted to do it.  He loves the movies so we saw each kid friendly movie this year and with that, we ended up going to Red Robin before the movies.  That was fun.  We also had a few sleepovers at our home with other kiddos and that was fun.  We rescued a puppy and for the most part, that was fun.  AND of course he discovered Minecraft and that was SO MUCH FUN for him especially when all the kids were playing on the same world.

The night before school started he apologized for this summer and promised next year we could at least go to the beach but it had to be cold with no sun and not crowded.  Sounds like fun to me. 

Not allowed this year.  Maybe in 2016. 

Tuesday, May 12, 2015

Our Trip to Disney World

We did it.  We actually did it.  We decided to take the kids to the largest playground in the world....Disney World that is.  Plan.  Boy did I plan, research and plan some more.  Went to all the blogs, read articles and took notes.  This was a big trip after all.  There would be driving, plane rides, a hotel, massive parks and tons of walking but we decided it was time.

Let me start by giving Krystina Steinhauser - Mickey Vacations a HUGE shout out!!  When hubby and I decided it was time to go I immediately contacted Krystina. I could've went to any travel agent but she had the 'ins' that I needed; she has a son on the spectrum.  We met in October to talk about the upcoming trip....yep, that would be 7 months before we were to leave.  I'm a planner.  She brought up things that were very helpful and I took notes, lots of notes.  During that 7 month process, any question I had, she answered it fully with additional things I should consider.  So I HIGHLY recommend working with Krystina if you are planning on traveling to Disney but especially if you have a special needs child.  Her FB page has lots of tips on it also.  Even if you aren't ready to plan a trip yet, like and read her page.

Hubby and I wanted to surprise the kids and that we did.  They had no idea.  Actually, we didn't tell people we were going.  We didn't want any slip-ups.  Daughter is very observant and would pick up on anything out of the ordinary.  Friday, before we left, I packed all of us up and hid the suitcases.  Kids thought I just needed to do laundry when they noticed clothes were missing.  Ha ha. 

Saturday at 4:30 in the morning, we woke them up and told them.  It didn't really sink in until I told them they didn't have to go to school that entire next week.  Then they were excited!!  I told them they could take one item from home and put it in their backpack.  Son packed his 3DS and charger and Daughter packed her stuffed animal, Tabitha. 

I was nervous about the plane ride.  Neither of them flew before.  Both handled the busy airport, security and waiting like champs.  No problems at all.  He loved the plane ride.  No problem with his ears.  He kept saying, "We not going down.  We not falling."  Bonus for him, he got to drink soda on the ride.  He enjoys his Coke but rarely gets it. 

After the plane ride, which was awesome, we hopped on Magical Express that takes us to the resort.  When we arrived the kids were so excited to check everything out and as soon as we were in the room, they picked out their beds and unpacked.  So far, so good.

Let me say the weather was absolutely perfect.  Low 80s, low humidity with a bright blue sky with puffs of white clouds.  It only rained once while we were sleeping.  Couldn't have picked a better week.


Whooping it up at the
Hoop Dee Doo Review
Son needs to have a full belly in order to keep his blood sugar up.  This I know.  We had the Disney Dining Plan which is fantastic because you get so much food!  My Disney Experience app allows you to plan your vacation and do research.  Boy did I research restaurants.  He eats anything but she is a problem feeder.  With such a limited diet I read almost every menu available and guess what?  She was able to go to any restaurant.  The parks were incredible.  We even went to the Hoop Dee Doo Review and the chef prepared chicken nuggets and fries just for her.  All you have to do is ask.  We had each dinner scheduled around the same time everyday so that part of his schedule was the same.  We ate in truly unique restaurants.  He had problems with two of them.  I thought he would enjoy them but there was so much going on all the time that he couldn't wait to get out.

Parks.  Let's talk parks.  They were magical and huge.  Lots of people.  Seas of strollers.  Crying babies.  All to be expected.  My son doesn't like crying babies.  He gets worried.  He needs to see the baby crying to make sure he/she is OK.  After a while, it did get to him.  There were lines but they were short and by short I mean we could be on a ride in 15 minutes or under.  He had no problems waiting for 15 minutes as long as it was in shade and most of the lines are under something. Misting stations were awesome for him also.  He would stand under them to cool off.  They also sold hand fans that sprayed water on you.  We did not buy any, he would go spray himself then continue on.

Fast Pass.  Best invention ever!  I didn't understand the use of Fast Pass and wasn't going to use it but Krystina asked me if I had booked my rides yet.  I told her I didn't want to research each ride to see if that would be something we would want to go on.  She asked if it was OK if she booked them for me and I said YES!  One less thing for me.  I gave her my email and password and she did it.  Above and beyond what travel agents do.  She did have the inside scoop after all.  She understood autism and sensory.  She saved us.  I had no idea how beneficial Fast Pass was and will utilize this program again.  Loved it! 

He tried all types of
sodas from all over the World.

Heat.  It wasn't that hot for us but it was for him.  We managed to find shade everywhere. So much so, our kids didn't even burn or tan or look like they actually went to Florida for vacation.  LOL.  EPCOT was his favorite park because most of the rides are inside where there is air conditioning plus, remember I told you about his love for soda?  They have Club Cool where you can try different sodas from all around the world.  This was so exciting for him.  He tried every one a few times.  Ah, so good!

When he was having a hard time he would tell me he needed a break and when he absolutely had enough we would get him to stay a bit longer because he knew we would leave the park after dinner.  That was acceptable to him. 

After he experienced each park one time, he had enough.  So much so that on Thursday, we were going to go back to Magic Kingdom because there was so much we missed the first time, he absolutely refused to leave the hotel room.  We tried everything but then real tears rolled down his face and we knew he needed a break.  Hubby stayed with him so he could regulate himself.  He didn't leave the room all day.  Not to go swimming.  Not to get anything to eat.  He had enough.  Daughter and I came back around 5pm and he was ready to go to EPCOT to get a bite to eat.  This was the night when were going to go to each country to try out a new food.  Of course he was excited to go and he did a great job eating his way through all those countries.  He even wanted to stay for the laser and fireworks show that night.

So, what I have learned. 
  • No matter how much planning you do, you may still have other things come up that you have no control over. 
  • Be flexible and have a back up plan.
  • I highly recommend dealing with a Travel Agent who understand autism.
  • If we ever go again, go to the parks early in the morning, break in the afternoon and go back early evening. 
  • I may consider going in March/April for cooler temperatures.

Over all I think he did have a good time but as we were in the airplane coming back home I asked each child a question and took a picture of their response.  I asked, "How do you feel about your vacation being over?"  Daughter gave me a sad face.  Son gave me a huge smile.  He was happy about going back home.  In fact, we came home after midnight on Friday and he stayed in his room all day Saturday and Sunday, only to come out to eat but if you ask him about his vacation he will tell you, "The Best Vacation Ever!"

Telling me
He Hearts Disney the first
day we were there.

If you have any specific questions about our trip to Walt Disney World, please leave them in the comment section so we can keep them all in one place.

Thursday, March 19, 2015

Ask. It's OK.

The doorbell rang.  As I answered the door I noticed our mailman, Tim, standing there with a big grin on his face with our mail and a pen in his hand. 

"Need your signature again.  In all my years I've never run across a school district who sends out so much certified mail," he told me.  Still grinning from ear to ear.

I laughed and told him there will be much more to come as long as my son goes to school here.  With that, he gave me an inquisitive look.

I went on and told him that my son was autistic and he is in an autistic classroom.  What I was signing for was probably the NOREP for him to go to ESY (extended school year).

His smile disappeared.  He paused. Then what I absolutely love came next, questions!  Lots of questions from Tim, the mailman.  This is where we, as parents, can really give someone a glimpse into what autism is. 

His first question or statement was, can you guess?  "Oh, autism.  That's where they genius IQs.  Asberger's? or something like that?"

Asperger's.  And yes, they can be really smart but so can nonverbal children.  (I really don't like functioning labels but this was the only thing he knew about autism.)  Autism is such a spectrum and every child is so very different.  I went on and told him a little about my son and his autism diagnosis.  Like he was non verbal and a couple of years ago he started reading.

Then he started shaking his head and what came next?  "Oh, so sorry to hear about your son.  How do you handle it.  So sorry."  I told him it's OK and he is a fantastic boy!  He is constantly learning and progressing and growing!

Tim proceeded to state that he doesn't ever see him playing outside.  I told him that my son is heat sensitive and when the sun is out, he is usually inside.  He hates to be hot and even in the deep summer months, he will be pale white.  Hubby and I joke that he will actually turn translucent one day. 

After a few seconds of quiet, he proceeded to tell me that his life changed so much when his parents became unable to care for his sister.  She is wheelchair bound and Tim took her in.  He told me it changed his whole life.  I assured him our lives had changed for the better.  He agreed and his smile returned.  And with that, he hopped back into his car and continued to deliver the mail.

It's the small conversations that have a big impact. Who would've thought that a simple piece of mail turned into some autism awareness.  I'm happy Tim and I had this conversation.

Ask me about my son's autism.  It's OK.  Grab some coffee and let's talk. 

Friday, January 16, 2015

Homework. Math. Ugh.

Homework.  Who likes homework?  Yes?  Then you are the minority.  Lol.  My daughter complains everyday about it.  My son hears it and then stresses over it because she stresses over it.  He is autistic and works really hard on his academics when he is in school. When he gets home, that's a different story.

Back in 2013 I wrote about how he voluntarily, wanted to do his homework and wanted absolutely no help.  It was a fantastic experience because I heard him actually read for the first time.  "In His Own Time"  ((Bragging here but that very blog was also included in a book called This Extraordinary Life by Rachel S. Quatkemeyer along with many other bloggers.  Click on the link to purchase.))

Back to his homework.

Homework has been getting more difficult.  Some nights are better than others.  Last night when I opened his folder and pulled out his homework, my heart sank.  Math.  We're talking addition, subtraction, money and multiplication all on one worksheet.  He gets stressed over a sheet of just addition and now there were all these other problems. 

He is remarkable because he remembers when has homework.  I never remind him.  I let him choose when he wants to do it.  Either immediately after school, right before bed or in the morning.  He chose in the morning.  Ugh. 

What goes through my head is 'there goes his school day if he gets frustrated', right?  So, as patiently as I could, I waited for him to say, "Time to do my homework."

Oh boy, here we go.  Pencil ready.  He saw the worksheet and immediately became stressed.  Pulled on his hair.  His face became red.  The whining started.

Quickly, I grabbed a blank sheet of paper, covered up the worksheet and was careful to only show one line at a time.  This calmed him down somewhat.  When he was done with a line, I would move the blank sheet down.  He eventually got through the entire sheet and was so relieved when it was all over.....so was I.

He did it.  He got through it.  So proud of him. 

Addition, Subtraction, Money, Multiplication

Thursday, January 8, 2015

An Inclusion Perk


My son has been in an autistic support classroom all of his young life.  This is what he needs in order to learn.  One on one learning is key for his education. 
 
He also needs to be with other NT children so he can learn social behaviors from them.  (All the good ones hopefully.)  With inclusion comes so many challenges but so far he is doing well. When he is in his inclusion classes, which consist of all the specials, science, social studies, and homeroom, he is challenged with his speech and social skills.  He does his best to fit in and pay attention to his peers.  This is exhausting to him. 
 
Have you ever walked into a room with people you don't really know and have to try to break into conversation?  It is difficult for typical adults to do let alone a child.  Where do you start with small talk?  What do you have in common?  He has been working hard on circles of communication.  This is the back and forth we NTs call conversation.  This has been a difficult task for my boy.  He tries very hard and is getting better. 
 

Back to the classroom.  Fifth grade can be brutal.  Remember those days?  The social pressure.  The teasing.  The 'wonder what she's saying about me' times?  OK.  Maybe not for you but for me, I didn't really like school.  If it wasn't for my very best friend always being by my side I'd be a wreck!!  (Love you Janel.)  Anyway...... my son.  He is in the inclusion classroom 39% of his day.  All of the classwork is modified for him, love his school and teachers.  When the room is divided up into small groups, he also goes off into one of those groups and always has partners.  Last year he was included in a PowerPoint presentation lesson and worked well with his group.  PowerPoint!  I don't even know how to do that. 
 
He doesn't get invited to birthday parties.  He doesn't go to a friend's house after school.  If you ask him who his friend is he answers his sister or his uncle. 
 
Where am I going with this? 
 
I opened up his backpack this morning, the day after his birthday, and took out a notebook I never saw before.  In his inclusion classroom, each child wrote my son a note.  Most of the notes were about him being a good friend.  How the kids enjoy his company.  Think he's funny.  And more importantly, hoping he gets a really good gift.  Lol.  This was an inclusion perk I really appreciated.  I read through them and started to get teary eyed.  (Can't stand being mushy!!)  I've included some samples of what the kids wrote.  I love each one.  When he is feeling down, we are going to bring this notebook out and read them. 



By the way, he said he had an awesome birthday and came to me at 12:30am, crying to tell me he wishes his birthday didn't have to end.  Or in his words, "No more birthday.  I have to wait for next year.  Bye birthday."  Then he sobbed his way to sleep. 

Wednesday, December 31, 2014

The Most Perfect Sound in the World

He is off to the left in front of the
microphone.
There he stood.  On the stage with a giant spotlight on him.  He stood with pride in front of his entire 5th grade class overlooking a packed auditorium.  The music started.  Waiting patiently for his cue to sing.  Then it was time.  It was his turn to shine.  A voice so beautiful filled the room.  His falsetto was breathtaking and his pitch was perfect.  I couldn't help my quivering chin.  My eyes filled with tears without warning.  Proud doesn't even begin to describe this moment in time. 

His music teacher told us he could sing.  He wouldn't sing for us. 

His autistic support teacher told us he had a beautiful voice.  He wouldn't practice for us. 

We put our faith in their hands that he could do it.  They said he could.  He did. 

He was diagnosed with autism at the age of 4 but we knew earlier.  He was non verbal for many years then slowly words came.  Scripting was and still is huge.  Verbal stims are everyday.  It is what we are used to and it makes him feel good.  We don't stop them.  We usually hear singing through his scripting and even then it is sprinkled with funny voices and stims thrown in.  But on this glorious night we heard an angelic voice fill the auditorium and it was the most perfect sound in the world. 

Singing his solo in front of a packed auditorium. 






Thursday, October 16, 2014

Art Room Paintings

We moved into our new home over 2 years ago and we had an extra room, an extra bedroom that is.  We don't get overnight guests so with some thought, my daughter and I decided on an arts and crafts room.  I wanted to scrapbook and she wanted to everything else Michael's and AC Moore had to offer.  Lol.  BUT I wanted this space to be for everyone so a bit more planning went into it. 

With my son's permission, all of his LEGO's and K'nects were organized and placed into a part of the room, then daughter decided she wanted LEGO's also so she has a section for hers as well.  I changed the closet into all craft storage filled with tons of labeled photo boxes and made a table.  Yes, I made a big art table made out of a door.  It gives us lots of space and overall it is working for us.  All my scrapbooking things are there but still untouched.  I'll get to it. 

While watching a TV show, The Real Housewives of Beverly Hills, (I watch it because of the drama....don't judge me) one of the women had shown a painting mural in her home.  It was a bunch of small canvas paintings her family and friends had painted over time and I really loved how it looked.  So I thought we could give it a try. Packed up the kids and off to Michael's we went for supplies. 

Side note.  Now, one of my favorite facebook pages is Autism Art Project.  That page is filled with beautiful artwork from the creator, Beth and sprinkled with artwork from her son.  She also shares her adventures into their world of autism.  It's one of the pages I do read often.  If you haven't checked them out, you won't be sorry.  She is an amazing artist.  

My family decided that once a season we would all gather in the art room and paint together.  The first time my son didn't really like it.  He took black paint and angrily painted 2 eyes and a mouth then yelled and stormed out.  We all remained calm and kept painting.  Eventually he came back into the room and asked to paint another picture, this time of a red flower.  He got another canvas and it came out beautifully!!! 

So, I am presenting our little family project representing spring, summer and fall of 2014. I'm hoping to eventually cover the entire wall with our work. 

Spring, Summer and Fall of 2014