28. I Forgot

Behind me, J is doing is homework.  It's 6:45am and when I went to look in his binder from school, I noticed he hadn't finished his spelling packet, which is due today, and he hadn't even touched his math worksheet.  He also had a packet from last Friday of missed work that he hadn't touched.  

When I asked him why he hadn't done his work, he said,  "I didn't see it!" and threw his hands over his head, almost knocking over his bowl of cereal.  

I didn't see it.  

I have heard that phrase so many times.  And it truly baffles me.  The spelling packets are always the exact same exercises, in the exact same order, every single week.  4 pages (2 front and back).  Unchanging.  So the idea that one week he doesn't see a page that is always there makes me want to call "bullshit" on it.  The same with the math.  His math worksheets are front and back and labeled with the days, so that he gets his weekly homework at one time, but doesn't have to complete it until whatever day is written across the top.  Again, it never changes.

This is where our fun world of autism really makes me stop and go "hmmmm."  Because as much as this probably screams AUTISM to many people, to me I don't buy it.  For someone who thrives on structure and consistency and rules, this homework should have been perfect for him.  Structured.  Consistent.  Straightforward.  No guesswork.  And yet he can't complete it on time.

Because he didn't see it.

It's times like this that I truly struggle with autism.  J gets so many concessions for having autism, so much is bent and conformed to help him through the day.  I think because of all that we end up doing for him, when he just doesn't do his homework I get overly annoyed.  I didn't yell or anything, but I made him sit down and finish it before the bus.  I told him he doesn't get his pebbles for having a good morning and that he won't be able to play on his new tablet after school because he has to complete the entirety of the work he missed last Friday.

When he said he finished his homework last night, I believed him and I didn't double-check.  It's exhausting double checking every aspect of the kids' lives.  Chores.  Homework.  Bedrooms.  Even smell checks after showers!  Because we have two older boys who love to take soap-less showers (which is nasty, you're a boy, CLEAN YOURSELF PLEASE).  So sometimes when I hear "I'm done with my homework" I take it for what it is, and don't check.  If I had to check every single thing, I would never sit down and probably never sleep.

Things aren't all bad, though.  J has had several practices for Academic Bowl, which he has seemed to really enjoy.  He watches Jeopardy now that I record for him on TV and sometimes he gets the questions correct (which he really likes when he can answer before the contestant on the show).  He's had a couple of golf lessons as well, which he is enjoying.  I don't know if the golf will even go anywhere, but it is nice for him to be able to be exposed to something fun.  He likes it.  Even if he just stays on this level and does a few more lessons on this level, I am fine with that.  Right now, it's not overly expensive and lets him experience something new.  He will never be an athlete, but I do think sometimes that bothers him, that he can't throw or kick or run as well as the other kids.

J also won a tablet from school!  He read the most minutes in the school Read-a-Thon!  It's a great prize, although one that we have had to set many rules around because he does tend to get obsessed with things.  He will focus on one thing and continually ask to do that one thing.  Whether it's drawing or reading or playing his DS.  That becomes the focus and he can't function doing anything else.  So we are very careful with the things we let him do and try to break up the monotony of whatever it is he has become obsessed with.  So now, the tablet is something that he has to pay pebbles in order to play on (unless it is to Skype with family members only) and I don't let him play on it every day.  Which as much as that last part frustrates him, it also calms him.  I've been in the world where he obsesses so much over something that he becomes unable to function unless he is drawing or reading or playing his DS.  It's a scary world.  And denying him those things or lessening the time he is able to do them, does seem to really help overall.

In other news, I took Little Iron Man to open studio at the local art studio last week.  It's actually nice spending time with the kids one on one without the other one around.  I think it helps them to feel special and he was in a really good mood the entire time we were there.  He loves art, but he's not quite as good as J, so he never wants to draw or paint when J is around.  He's starting to get really good at sports, throwing balls especially.  He's still scared of catching because he doesn't want to get hurt by a ball, but I really think if we can convince him to actually play a team sport that he would thrive.  And then he'd have his own niche to really excel at and help set him apart from J.  They're just so close in age that often there is a bit of competitiveness that cannot be avoided.  But when it was just me and him painting, he definitely had fun.

He wanted to paint Halloween pictures, and wanted me to join in on the fun.

27. A Month Smashed Together

It has been almost a month since I wrote anything.  I find that unacceptable considering so much of my life centers around autism.

We started our Friendship Club a couple of weeks ago.  It's so nice to have J go to a group for kids with autism while I go to a support group for parents.  It's so hard, but it's so nice to know other parents are going through the same thing I am.  Stormy doesn't really want to go; he thinks he may offend someone because he isn't as rainbows and butterflies about autism as some.  I think he'd be surprised at how many others sit there and say, "Autism makes me insane!  I'm at my breaking point! I just want to take a shortcut home from church without someone questioning my driving!"  Really, I think he is more concerned about potentially offending me.  Because as accepting as he is of autism, he still struggles with many aspects of it.  We all do.  As accepting and understanding as I am, I still have a lot of struggles with autism

I had J's IEP meeting at school.  It went pretty well.  As well as I expected, at least.  I dreaded meetings like this at his old school, but the people here are so much more caring that I don't leave in tears anymore.  About the same time, we got two kittens from the shelter.  It was totally Stormy's idea - at least to get two of them.  They're brothers and in the essence of keeping our house as nerdy as possible, we named them Draco Meowfoy and CT-5555 ("Fives" for short, thank god).

Look how ridiculous they are.  I should get some better pictures of them, but there you have it.  They're actually pretty fun to just watch because they're still kittens so they play and horse around and run around the house like a couple of nuts.  They love when my husband comes home because they use him as their nap time bed.  He gets a lot of kitten love.  I think the kids like them.  Tiny thinks they're animated stuffed animals so I always have to keep an eye on him when the kittens are around.

About three weeks ago, J came home with a permission slip to try out for the Academic Bowl at school.  It was only open for fourth and fifth graders.  I signed it and he went through some rounds of elimination before making it onto the team!  He is very excited.  His first practice is this week, and I have to go at the very end to find out about uniforms, practice schedules, and meet schedules.  As much as that doesn't sound particularly thrilling, I am actually looking forward to see what the Academic Bowl is going to mean for J.  I really hope he does well.

I'm finishing up this entry this morning before the bus comes, and I keep getting distracted because all J is doing is that auditory tic that I love so much.  It's still here and he's now saying, "I can't help it, it's a tic."  I understand that may be a reason for the noise, but it's not an excuse.  We are trying to get him to be more aware of it because it does nothing positive for anyone.  It annoys and frustrates everyone in the house, and also everyone at school.  It is an absolute constant and yet inconsistent enough that it isn't a white noise.  I'm about at my wit's end with the noise.

I feel I have been so overwhelmingly busy.  The baby started a 1's class at the church down the road and he has a blast going there, which has given me a couple of free hours twice a week to work on my own projects.  I'm trying hard to work on projects and hopefully start an etsy shop in order to create some sort of cash flow.  I'd rather do something creative than drive to a job where I am under someone else's rules and schedules, but I also really enjoy being home and being able to keep an eye on the kids.  I like knowing all the different aspects of their day and being there to help with homework or chores, and being there to do fun stuff, whether it's play outside, watch a movie, or just read.  The first seven years of J's life I had to work and I realize how much I ended up missing out on.  I don't want to have to continue to miss out on things, even if it's just one day a week.

Tiny, after stuffed animal day at school.  Hobbes is his favorite.  During nap time or bedtime, all his other stuffed animals get thrown out of the crib, but Hobbes stays inside until it's time to wake up.

26. Tick Tock

It didn't take long to remind me why I hate the school year.  I don't really mind waking up early, because it does help to give a head start on the day.  But getting up at 6:10a every morning only to be angry, annoyed, or stressed by 6:25a isn't really how I want to spend the early minutes of my day.  

J has had trouble sleeping these days so he's usually cranky in the mornings.  It's a battle to get him to sit down for breakfast and then afterwards brush his teeth.  He has plenty of time to get everything done, but each step seems to be a battle.

He goes through tics every few months, where one will go away just to be replaced by something new.  It's always been a physical tic, but now he makes sounds - constant sounds every 5-10 seconds. The sounds slow when he reads, but otherwise he can be sitting at the table eating and in between bites he makes the noise.  We'll be watching television and he'll make the noise.  It is so constant and loud that it is beginning to disrupt everyday life.  It is not something that is easily ignored.

I think I am more annoyed than anyone else in the house by the tic.  Maybe it's because I am around it most, and I feel that since I deal with all these other fun aspects of autism, I don't also want to deal with one that is just a persistent noise.  His therapist understood my frustration and understood why it was disruptive and worked with J to find a technique that would at least lessen the volume of the noise.  Except J doesn't want to work on it.  The kids at school don't comment (according to him) and so he doesn't see a need to stop or change.

This tic seems to have lasted longer than the others - but that's probably because it far more annoying than anything else we've dealt with.  While I write the next couple paragraphs, I'm going to point out every time I hear the tic.

He's always walked on his toes (tic), but now he (tic) also kicks the backs of his own heels as he walks.  I haven't (tic) figured that one out yet, to be honest.  And it (tic) may not be a tic in the traditional sense, but it (tic) is (tic) something new that (tic) has crept up in the last couple months.  It will probably go away as all the other tics do (tic).  When he gets overwhelmed in groups of people, he does stem, but sometimes it will overlap and even when he's home he will continue to do it for a few days (tic) as though (tic) it (tic)(tic)(tic) has turned into a (tic) tic (tic)(tic). (tic) Normally when he's in crowds (tic) he (tic) will (tic) (tic) start to roll his eyes around in his head, as though he is truly struggling to focus on something and instead his eyes are focusing on everything at once.  He only does it in crowds or closed spaces (tic)(tic)(tic)(tic)(tic)(tic) so I do think it's a form of (tic) coping with this, except a few days later, he will still do it until it slowly dissipates.  (tic)(tic)(tic)(tic)

I started writing the above paragraph at 6:50a and stopped at 6:55a.  During this time, J was tying his shoes.

Maybe one day I will learn to ignore the tic.

*snort*

Sorry.  I just realized that I know that won't happen.  I wish I could 100% accepting of all tics and noises and fun aspects of autism, but I can't.  This one drives me crazy.  I keep my cool so well overall, but this tic has taken all enjoyment out of watching a movie together or playing a game.  I want that enjoyment back.  I don't know when I will get it.

But I don't want to end this blog post on a negative note.  So I will end with two pictures of Tiny the baby who started the 1's preschool class at the church up the road!  He has his very own backpack and spends the morning with seven other little 1's, learning shapes and colors.  He had so much fun on his first day of school!  The pictures are from the very first day of school.

25. Temple Grandin

The other day Stormtrooper and I watched Temple Grandin.  I put it in our Netflix queue ages ago and it finally arrived.  I really didn't know what to expect from watching it, but I am glad I did.  It was somewhat painful at times because you really saw the pain and awkwardness that people with autism face.  As a parent of someone who has autism, this was particularly difficult because it makes you sad to think that this is what your kid is experiencing.

Temple didn't speak until she was four.  J didn't speak until he was three.  She ended up going to a boarding school because she got in trouble for hitting another child, but her mother, who seemed to be an advocate for Temple, said she never hit unless provoked.  This has been something that has been a worry for us.  We've often wondered what J would do if provoked by other kids and honestly the outcome could be disastrous.  I think I've spoken about it before, but J's view of reality is so different from actual reality that he could think he was in danger, but actually be fine.

Moving on in the movie, Temple goes to college.  She doesn't want to go, but her mother makes her.  And honestly, I make J do a lot of things he doesn't want to do, and I hope he'll be a better person for it later on in life.  There's a scene where Temple is upset because all the other girls have roommates, but hers hasn't arrived yet, so she has to be all alone in the dorm room.  She's very upset by this.  It was sad because these kids know they're not normal and while they're okay with it at times, other times they just want to be like everyone else.  She knows she's different, yet she wants a roommate.  All the other girls have roommates, why can't she?  I have to answer questions like this frequently with J and sometimes I don't even have an answer that's adequate.

Temple is awkward in class but obviously thrives because she is so smart.  I don't even think she realizes she is smart.  J has no idea he is intelligent.  He never studies, he half-asses his homework.  He doesn't even attempt to look at his spelling words.  And yet he has straight A's.  I think last year, his end-of-year averages, when you took each quarter and averaged those grades, his lowest was a 95 in Reading.  Hopefully this will continue to transfer the older he gets, but because he has no study skills and you can't teach him study skills right now, I have no idea what middle school and high school will bring.  Since he is so resistant to things that don't make sense in his mind, trying to talk to him about studying would be fruitless.  Why would he need to learn to study if he doesn't need to study?  One day he might, and I guess I'll end up dealing with this later.

There's a couple points in the movie where Temple has to really think outside of the box.  It's a pretty amazing feat to watch because autistic people are so literal and there's a scene where she changes cars, changes her new car's appearance, and changes her own appearance in order to gain access to a cattle farm because she's a woman and they don't allow women on their property.  (I should probably preface all this by saying this movie took place several decades ago.)  She is able to really think on a different level than neurotypical people which allowed her to design different and more efficient tools for the cattle/meat industry.  She also said something that was very significant to me.  She said that nature is already cruel and we kill animals to eat, but there's no reason why we have to be cruel to them.  There's no reason why they can't die in peace.  And I think that is very important.  It shows respect to all living things and shows respect to those giving their lives for us, especially because these animals give their lives to us unwillingly, so it would be nice for them to be able to have a decent life and a decent death.  So she incorporated that ideal in a slaughterhouse design that kept cattle calm and allowed them to die with some dignity still intact.

We watched that movie and thought, we hope for these things with J.  We hope he's able to accomplish something greater.  He is so smart and while he is oftentimes the most self-centered person I know, he has a lot of kindness in him that allows him to really shine and stand out.  He always has ideas of things he wants to do when he grows older and some are realistic and others are not.  He doesn't understand that he has autism yet.  He knows he has it because we tell him, but he doesn't really understand what it means yet.  Temple was able to grow to a place where she could advocate for herself.  I want the same for J.

Maybe this is all like a glimmer of hope, a glimpse of what life perhaps could be for J.  I want the best for him, as all parents do for their children, but sometimes in our dark days with meltdowns and tantrums it's hard to imagine that he would ever conquer those things enough to be self-sufficient and highly educated.  Maybe he will surprise us all.

24. School Again!

Today was the first day of school.  Alarms went off at six this morning, which was the earliest I have gotten up since May.  The morning went well, zero incidences.  Tiny usually sleeps until at least 8:30a and the bus comes a little after 7:00a, which gives me a lot of time in the mornings.  Last year I went back to sleep, but this year I thought I should be more productive and use this time to my advantage, so I've decided to start exercising during this time.  I do hope to lose weight, but also just get in better shape.  It's nice to have a lot of energy to run after the kids and I do enjoy being active.  

Last school year I had a list on how to earn pebbles (our reward system) for having good mornings and this morning was a very good morning, so pebbles were given!  We had over fifteen minutes of free time before having to go wait for the bus, which doesn't always happen because J has so many difficult mornings.  This was a great way to start the year!

Yesterday was the first Open House, where we went to meet the teachers and sign up for the After School Program (ASP).  J wants to do Science Olympiad, which is on Tuesdays, and then he will go to ASP one afternoon a week to have fun, play with some of his friends.  J's teacher has experience in special education and when I introduced myself to her, she was fully aware of J and had already spoken to his teachers from last year.  Everything I said to her about J she wrote down in her notes so I felt she was really listening and paying attention.  I left with a good feeling ... and a huge stack of papers to fill out for the school year.

Then we went to see the gifted teachers.  We got more information on the things they are going to do this year, and we also left with more papers to fill out!  The coolest part of the gifted program this year is that the kids are going to make a Lego amusement park.  I don't know all the details, but I know Legos are a big deal in this house!  So anything with Legos will be awesome.

The scary part of school is that it's almost eight hours of not being with J, six and a half hours of school and two half-hour bus rides.  I don't feel the need to always be with him, but I get so many emails from teachers about incidences at school that I often feel lost as to how to respond.  I can talk to him when he gets home, but once something is after-the-fact, J doesn't want to talk about it or he won't talk about or he'll just say "I don't remember."  I can give teachers advice or encouragement, but if I'm not there to help, guide, or correct in the moment then there's often not much I can do from home.  I hate the feeling that my child is a burden on the teachers, but that's often the feeling I am left with.  Last year his homeroom teacher was really great and understanding, but this is one of the only times I have felt comfortable with J's teacher.  Usually I am left with "Please address J's behavior."  Right.  Thank you.  So I'm praying this year will be great!

To give the boys more responsibility, this year they are both going to make their own lunches.  J was a little nervous because he wasn't sure how he would know what to pack.  So I made an easy chart so everyone would know what to put in their lunch boxes and it's on the front of the fridge.  Both boys find making their lunch really exciting.  

I am hoping for a good school year.  I am still working out therapy schedules so that everything can fall easily into place and be on a very set schedule.  It's a work in progress, but I am remaining hopeful.  I'd like to have everything happen on the same days of the week, but we will just have to see how that works out.  Tiny will be in the 1's class at the church around the corner two days a week, so for six hours a week I will be childless while everyone is in school!  Hopefully I will be able to get some work done at the house and run errands more quickly since I won't have children to get in and out of the car and direct around stores.  It'll be very relaxing to just do my shopping with a baby yelling at the other customers (he's very friendly, but very loud!)

Gryffindor backpack again this year.  And a Star Wars t-shirt.  

We like for our fandoms to collide around here!

23. The Meltdown

J had his first major breakdown since camp today.  He took the green outside trashcan to the end of the driveway since the garbage is collected Wednesday mornings.  He somehow tipped the can over and half the trash bags spilled out, amongst other items.

The first thing he did was start to cry, which honestly neither surprised me or bothered me.  I knew it would be a painful process getting all the trash back into the bin, so I went upstairs to put Tiny down for a nap before coming back outside.  Stormtrooper had righted the can so that it was standing again, which was great.  The can was still full of trash and would have been difficult for J to put back upright, especially while crying.

Stormy and Iron Man went to fix the ramp up to our shed while I stayed at the end of the driveway to deal with the trash.  We live on a cul-de-sac so at least while J had his tantrum we didn't have to worry about cars or any passersby.

I told him he would not be able to go inside until all the trash was picked up.  He didn't want to do it. There were flies around the garbage, and J's biggest fear is anything regarding bugs and insects.  He was hysterical, tears and snotty nose, screaming and flailing.  I kept my calm and did just what the therapist said - to have him complete the task through to the end without giving into the tantrum.  

I mentally divided up everything on the ground and pulled out my cell phone.  I set the timer for one minute and told J which pieces to pick up and gave him one minute to do it.  At first he refused, he kept his feet firmly planted on the ground, and screamed.  The first thing he picked up was a small box, which he tried to throw into the trash can, but he missed and it fell back on the ground.  At that point a fly flew right by his ear and he took off running around the cul-de-sac, screaming.  Not crying or yelling.  But screaming in fear, a sound you would expect to hear from someone in agony.

Two of our neighbors came out of their respective houses and watched.  I ignored them and waited for J to stop running.  Then I made him come stand back next to me.  I put him in a time-out outside, which was more to stop the overstimulation and calm him down.  He faced the side of the house, hands by his sides, eyes closed, and I told him to breathe.  He stood there for a few minutes, and once he stopped shaking and crying, we went back down to the bottom of the driveway to continue to pick up the trash.

We were down at the cul-de-sac for about an hour.  There were four kitchen-sized trash bags, one small box, three Starbucks cups, and a couple of envelopes from discarded mail.  That's all that fell out and yet it still took that long.

I tried to find the words to convey how this meltdown was, but words cannot describe the extent of tho particular tantrum.  Crying and screaming, of course, but if you were not there, screaming is not an adequate word.  I stayed calm and talked him through picking up all the pieces off the ground, held him next to me as protection when he was flailing his arm, trying to shoo away phantom flies.  Time sort of stopped in my brain when it was all happening.  I knew our neighbors were probably wondering what on earth was happening at our house, but it was more important to help J through this.

Afterwards, my husband and I joked that one day our neighbors may call the police if they hear another meltdown like that.  It's no telling what they think is going on.  Unfortunately, it wasn't much of a joke and is actually a small fear in the back of my mind.  When people first see J, they see someone who looks normal and perhaps even speaks normally.  They don't see the autism until later, which in this case may be more of a curse than a blessing.

Also afterwards, I didn't allow myself to calm down, I just refocused on the family chores that we were doing when the meltdown began.  Once all three boys were in bed, Stormy and I watched television and then went up to bed.  I kept thinking about it and playing the image of J running around the cul-de-sac while screaming as though on repeat.  Sometimes these things are have huge effects on me, sometimes it takes its toll on me mentally.  It's so hard to stay strong all the time because autism isn't something that goes away.  When J has a good day, it doesn't mean he had a day without autism symptoms, it just means he had a day where those symptoms weren't overwhelming, a day without tantrums.  But even the good days have small bouts of stress.  It's a never-ending thing.

While J had his meltdown, Stormtrooper took the opportunity to have a conversation with Iron Man about autism.  He pointed out that J's meltdown and tears were directly linked to his autism.  

"Does that look like fun?  Does that look normal?"

Of course he said no, and Stormtrooper explained that just because J got to go to summer camp for kids with autism doesn't mean that autism is fun.  J wasn't having fun, he was scared and upset and sad and angry.  He was such a mix bag of emotions that he was nearly impossible to calm down.  Iron Man forgets about those times when he says things like, "I wish I had autism."  Stormy said it seemed to click a little more with him that having autism isn't something to want, isn't something to be jealous of.  For a little kid, I can understand the frustration where your brother gets a lot of attention because of his antics, where he gets to go to summer camp, and gets to get special line-jumper passes at Universal Studios and Disney World.  However, I do find it disappointing that he has difficulty separation the so-called "perks" from the obvious hardships and downsides to having autism.  I think the understanding will grow the older he gets, but it will be something we continue to work on with him.

We were supposed to go to our autism group get-together, but we had to cancel because of the meltdown.  I'm sure that they understood since all of their children also have autism, however it is still one of those realities that not all parents understand.  I've had friends who don't understand, friends who hear the phrase, "We're going to be late because J is having a tantrum," and wonder why I let my nine-year-old be such a brat.  God forbid we have to cancel something.  It doesn't happen often, but it does happen.  Thankfully we do have a close-knit group of friends and family who understand about J and don't question his bad days, they accept them as a part of our reality.

Maybe one day I will find the correct words to fully describe how terrible this particular meltdown was, but I am glad that it's over.  Hopefully our next tantrum will wait a while.  I don't know if I can handle any more tears.

22. Three Weeks of Summer

When I went to pick J up from camp, one of the first things he said was, "Can you sign me up to come back next year?"  I was so happy that he had a great time.

He came back from camp ... different.  He came back happier and more talkative.  He's always been fairly talkative to me, but less so to my husband.  Of course, I am home all the time with him, and my husband works around fifty to sixty hours a week.

It's been a week since J has been back from camp and while he still has a debilitating fear of bugs, he didn't have any other tantrums.  He was a little hyperactive from time to time, but he listened and did his chores without complaining - sometimes even initiated his chores without me having to ask.

When we went to the park with his baby brother, he played with him on the playground very carefully.  He blocked any openings where he might fall, he steered him away from the slides that were hot (he even tested the slides himself first to see if they were too hot).  On the slides that were cool enough, he carefully helped him so he wouldn't fall off the bottom of the slide.

For a week, he didn't play his DS or on the PlayStation.  He didn't play with his Legos.  Instead, he spent an entire week spending time with me and his brother.  He did some arts and crafts with me while the baby slept, we watched the Lego Movie (more than once), and in general just spent time as a family.  Everything was relaxed and quiet.

When he was at camp, I know the counselors said his name and said hello every time they passed him.  I wonder how much of that came back with him.  He has certainly been much more open to saying "good morning" when he wakes up and "hello" when my husband wants in the door from work.  Whatever happened at camp that helped him to come back a happier person, I welcome it and am grateful for it.

For now, we have three weeks left of summer before school starts back.  We do get out before Memorial Day, but going back the first week of August seems really early as well.  I know I will be glad for school to commence, but part of me is really going to miss having the boys home all the time.  We will have to make the most of our three weeks and the little time we have left!

Kings of the Playground

21. Summer Camp

If there's one thing that most families with special needs kids don't have, it's an excess of money.  We're fairly lucky overall because J doesn't have any physical needs that require a lot of money, but we do pay for medications and therapies.  We buy things to help him cope better at home, and often end up spending our excess money on things to help balance the house out.  So when it comes time to look for summer camps, the ones geared towards children with autism tend to be outrageously expensive for our budget.

Then I got an email from someone in our autism group about a camp that only asks for $100 donation for a week-long sleep-away camp.  

Are they serious?!

We signed J up and he was accepted.  The activities are very stereotypical summer camp stuff: canoeing, archery, horseback riding, and they even have a rock climbing wall.  The big difference is that the counselor to camper ratio is extremely low, which will really help ensure J has a good time.  Whenever I sign him up for a neuro-typical activity, I always worry because what if the teachers/counselors/adults in charge don't know anything about autism?  What if J has one of his more violent tantrums where he screams and pounds on the floor or walls?  By going to a camp where every single adult there knows and understands autism will help not only ease my mind, but also ease J's mind.

He wants to learn archery.  That's all that he talks about, so hopefully they can help him learn.  It is something that I could see being a huge issue because if he can't hit the target then the situation has the potential for meltdown-mode.  Luckily, the camp should be completely able to handle any mishaps like that.

Our other big kid was not happy that J gets to go to camp.  He thinks it is unfair that he doesn't have autism.  But all he knows at his young age is that autism gets the ability to "cut lines" at Disney and go to fun camps.  He sees the tantrums and the hardships, but I think his young brain doesn't process it the same way we do as parents.  I can understand his frustration since he wasn't able to go to the same type of camp, but we still sent him to different camps - camps that may be harder for J to attend because of his special needs.

I feel like I need to process these thoughts regarding a child wishing they had ASD a little more in another entry.  It's rather disheartening to hear, but somewhat understandable.  It also goes back to my thoughts on making sure that your special needs child does not become the most important person in a family, and I think because J inevitably gets so much attention (albeit not always positive) because of his ASD that our other boy does not always feel as important.  From my eyes, I can sometimes see it, but other times it really frustrates me because he gets so much other focus.  On Mondays my husband takes him out to dinner, just the two of them.  He went to a camp - just him - that specifically I did not sign J up for.  We always reinforce the good things he does, and the things he is good at.

Anyway, I dropped J off at camp yesterday and he was very excited.  Which I know he was excited even though he showed no outward signs of it.  We had his bag all packed and ready, put it in the car, and drove the 50 minutes to camp.  We checked in, he got his temperature taken and answered a few regarding his medications, and then we walked to his cabin.  He picked out a bed and I helped him get his sheets on.  He brought his pillow pet, which he prefers to use as a pillow than a regular pillow, and his Star Wars sheets.  He gave me a hug and was ready for me to leave so he could have a good time and play!

I wasn't emotional dropping him off because I knew he was excited to be there.  I was very happy for him and very happy that he would get to have a normal camp experience surrounded by kids who are just like him and adults who have worked with autistic kids before.  We are very fortunate to have been given this opportunity.

Before he left, J picked out some notecards and I put addresses on them and gave him some stamps.  But if he doesn't write because he's having too much fun, I am okay with that!  I would rather him forget to write home because he's having a blast, but if I get to see a note from him then that will make me happy, too.

I still have three more full days before I go pick him up on Friday.  Here's to a great week at camp!

20. Top-Secret Vacation Day Three/Four

The boys, especially J, were super crabby after being out so late at the Magic Kingdom.  So we gave the boys a day off from parks.  They stayed at the hotel and the pool for almost the entire day.  They slept in late (J almost 'til 11am) and just relaxed.  Even swimming all day was less tiring than if they had gone to the parks.

We left the boys at the hotel in the afternoon/evening with my niece so that Stormy and I could go to Epcot and have some adult time.  We ate at a Mexican restaurant, rode some rides, and then headed back to Hollywood Studios once again for our fourth round of Star Tours and second of Tower of Terror.  We love our kids, but it was nice to be able to escape for the evening.  Even at home, we don't get to out on many date nights, so this was so nice for us.  We ended the night eating ice cream (Stormtrooper is obsessed with ice cream) and fell into bed and slept.

Monday we all woke up and went to breakfast and then headed to Universal Studios.  My husband got to geek out at Star Tours and Star Wars weekends, but Universal has the Wizarding World of Harry Potter and that is my thing.  I was so excited.  I loved it.  It was fantastic.  We rode the rides and got some treats from Honeyduke's.  The boys have both read the Harry Potter books and seen the movies, so they were excited about going, too.

J had one meltdown while there, but it was definitely nothing we were upset about.  My niece, husband, and I wanted to ride on the dragon ride, but J doesn't like roller coasters that do the "corkscrew" kind of turns.  And our other boy is just terrified of any rides (which we didn't even know until we went to Disney and he was scared to ride on everything that was on a track).  We weren't going to force either of them to ride something they were scared of, but we still told them they had to wait in line with us.  When we got to the front, I asked one of the employees if there was a place they could stand and wait because they didn't want to ride.  Jokingly, the guy said, "Oh, no, everyone in this line must ride the ride."

J burst into immediate tears and just buried his face right into the middle of my chest.  It took a few moments to get him to calm down, but he did, and he wiped the tears away and waited while we rode on the ride.

We rode water rides and got completely soaked.  The boys seemed to enjoy that.  I was skeptical about J enjoying it because if he gets uncomfortable he will complain for ages, but he seemed to like being wet!  My husband took the boys on some sort of spinning ride that was similar to the tea cups.  Since my husband nearly killed me on Saturday on the tea cups, I sat the ride out and let him torture the boys to sickness on it!

Universal was nice.  We also spent the day with one of my old friends from Starbucks who moved down to Orlando a few years back.  It was great to reconnect with him and his wife - and also get some inside scoop on working for Disney!  We hopped over to the other Universal park so that we could go on the Transformers ride.

I think the boys enjoyed Universal more than Disney because they were much more familiar with the movies and rides.  Some of the rides from Disney were still old-school characters, like Dumbo or Peter Pan, and that is not as relevant to them as Harry Potter, Spiderman, Jurassic Park, or Transformers.  Over all Universal was really amazing and I am so glad I got to see Hogwarts, and I am glad the boys were able to share in that experience.  They got to watch Stormy geek out over Star Wars, and me over Harry Potter.

We drove home on Tuesday, and we got to see Tiny after five nights away from him!  And now on to the rest of our summer!  Which looks like it is going to include a new swimming pool, clay camp for Iron Man, and autism sleep away camp for J.  So much of the summer has already passed and yet we have so much more left to experience!

19. Top-Secret Vacation Day Two

Our first day was really pretty successful, and looking back, I don't have any complaints about it.  It was a really long day; we got back to the hotel very late.  We were out for about fifteen hours that day.

On Saturday, we slept a little later.  Stormtrooper went to Hollywood Studios for the parade while my niece, the boys, and I ate breakfast and went to the pool for the next couple of hours.  The boys splashed around and enjoyed cooling off in the water.

Once Stormtrooper was done with the parade, he picked us up from the hotel and we went to Magic Kingdom.  Since we already had our disability pass, we were able to set-up our Fast Passes for the day.  The boys had a blast driving the cars in the speedway and we were able to try out the new seven dwarves ride.

This day I saw a lot of J's symptoms come out.  Once his medication wore off, his hyperactivity was in full force.  He was also very, very tired, but when he gets cranky, there's nothing to sway him away from it.  He reached a point where he stopped caring about the rides and wanted to spend his Disney gift card and go back to the hotel.  He was tired, we all were, but he became argumentative and very snappy.  I know he had fun, but towards the end, Stormy and I wanted to ride the Haunted Mansion one more time, and Iron Man wanted to ride Thunder Mountain, and J didn't want to do either.  My niece took the boys to Thunder Mountain, but J refused to get on so he had to wait until they were done, and my husband and I got to enjoy some kid-free time at the Haunted Mansion - which, coincidentally is both of our favorite ride.

My husband had one negative encounter that day.  He was talking in a group of Star Wars folks and it was mentioned about the new Seven Dwarves ride.  The Fast Pass was used-up for it, so if you wanted to ride, you had to wait in the line (which was 120 minutes when we were there!)  My husband said that we were going to ride and use our disability pass to bypass waiting in the actual line.  And someone said they did not think it was fair that we could just walk to the ride for free, no strings attached.

So let's revisit that for a moment.  With the disability pass, I walked up to the ride, and asked them to sign us up for a return time.  The return time is comparable to the actual wait time for the ride.  We didn't get to immediately cut the line.  We rode other rides and walked around until it was time for us to return to the Seven Dwarves.  It's not a free pass to cut lines, but also if you're a stranger, you don't know what other families go through.  You don't know how we deal day to day, our frustrations, worries, fears, or even our strengths.  So to make a blanket statement of how things are not "fair" is ridiculous.  When J's hyperactivity kicks in, he is so all over the place that waiting in line has the potential to be disastrous.  When we walked around the parks, he bumped into people and wandered (never far, because we kept a close eye on him).  I was very careful to continually check in on him when we were in a line or in a ride, to make sure he was okay because the last thing any of us wanted was a meltdown in the middle of the park.

I think Disney tries to make the experience the best it possibly can be for every family going.  From what I saw, they took disabilities, including food allergies, very seriously.  They seemed to try to take the worry away from parents over whether their children would have an enjoyable time.  For that, I was extremely appreciative.  To the man who wasn't compassionate at all, my husband replied with, "Oh we deserve to use the pass ... we pay for it every day living with a kid with ASD."  It can be very difficult having a child with special needs and when a place like Disney wants to help eliminate some of the stress, we welcome it with open arms.

On day two, we got to ride a lot of rides in the Magic Kingdom:  Astro Orbiter, Big Thunder Mountain, Buzz Lightyear, Haunted Mansion, Tea Cups, Jungle Cruise, Pirates of the Caribbean, Seven Dwarves Mine Train, Stitches Great Escape, Space Mountain, Speedway, and of course, the train that took us around the park as well as the Monorail.  That's a lot of rides for one day, and it's no wonder the boys got tired.  We were exhausted, too!  We got back to the hotel and finally fell asleep after midnight.  Such a long day, but so much fun.

18. Top-Secret Vacation Day One

Last Thursday, May 29th, my stepmom (whom everyone calls "Grams") came to pick the boys up.  Her BFF was also there with her grandson, who is roughly the same age as our boys.  They went off to play while Stormtrooper and I got the boys' stuff together.  Unfortunately, I had a really bad cold, so I packed the boys' clothes and car-stuff together and my husband set it all up properly in the car while I took a quick nap.  We also had to pack Tiny's things because he stayed at my parents' house.

We got in the car, filled up on gas, and went to my parents'.  We exchanged Tiny for the big boys and started driving.  We told them we were going to a Star Wars event, but they've been to so many parades and things that they weren't upset about being in the car, or too inquisitive about where we were going.  

After about three hours, we asked them if they had any idea where we were going.  Once we finally told them we were going to Disney World, Iron Man got super exited and bounced up and down in the seat.  J was very neutral, as I expected he would be.  When I asked them if it was a good surprise, J said, "No, not anymore," since I had just told them.  Still, he was excited.  Later on in the vacation he told me that inside his brain he is excited and happy, but he doesn't know why his brain doesn't tell the rest of his body to express how his brain feels.  

We got to the hotel around 10pm Thursday, went to bed, and got up early the next morning for breakfast.  Stormy had to go to Hollywood Studios early since he was part of the parade.  The boys and I waited to meet some friends of mine who worked at Disney so we could spend the day with them.

The first Mickey we saw!

The boys in front of the lake while we waited for the ferry.

We took one of the ferries to the Boardwalk and the boys got to see parts of Disney before everyone was awake and at the parks.  I got to explain how different parts of Disney work, how some people stay in different resorts/hotels while they visit and how the buses, trolleys, and ferries work.  When we got back to Hollywood Studios, I went to Guest Relations.  I was originally so hesitant to use this because I always feel there are people who are so much worse off than we are, who need it more, but at the same time, I could envision meltdowns and sensory overload if we were in a line full of people.  Also, at the end of the day, J's hyperactivity kicks in because his medication wears off, and he starts to wander, starts to rock back and forth, flail about, and standing in line with people could have gotten really terrible if he started knocking into people because he cannot stand still.

We got the pass and I am really pleased we did.  The Disney cast member was very nice and helped with the whole process.  We ended up getting a pass that allowed us to wait for a ride without having to wait in the actual line.  Instead of waiting for two HOURS for the new Seven Dwarves ride, we were given a time to come back and bypass the long wait.  The staff is supposed to write down the time so that we would wait as long as the others in the actual line, but because there's always a small wait to get on the ride anyway, they usually wrote our return time for less than the stand-by line.  It was extremely helpful.  It allowed us to get something to eat or drink, visit a store, or wait in shorter, more manageable lines.  

At Hollywood Studios, we were able to use the pass for almost all the rides we wanted to go on, which was especially useful for the Toy Story ride, which always had a line longer than an hour.  Overall, J did really well.  He went on Tower of Terror (granted he said he never wanted to ride it again, but he at least gave it a chance).  My husband walked in the parade in the morning and joined us in the afternoon for the rest of the day, along with my seventeen-year-old niece who we brought to babysit the boys if we needed it.  

That day, everything went pretty smoothly.  We didn't have any meltdowns or complaining.  Both the boys were happy.  I did have to have a conversation about what Autism is with Iron Man; afterwards he looked at me with a glazed look.  I don't think he's ready to understand/accept anything about Autism yet.

We ended the day with fireworks and then we all went back to the hotel.  All in all, day one was a great success.

17. Vacation Vacation

School's out for summer!

This is the first weekend of no-school.  We let the boys stay up way too late the last two nights, and we didn't have them do any chores.  All they did was play, play, and eat.  

On the last day of school, there was the awards ceremony to help celebrate the kids' accomplishments in school.  Little Iron Man got one for attendance, one for being a star student, and one for A/B Honor Roll.  He has his own struggles, mostly with impulse control.  Sometimes he acts out for attention, and he certainly misbehaves in school way more than he does at home.  He is extremely intelligent, and I think his behavior definitely affects his grades at times, but overall, he is a very good kid, and we are certainly proud of how well he has done.

At school, the kids have to take Accelerated Reader (AR) tests on the books they read.  J got an award for getting over 100 AR points, which apparently is difficult to do when you're in third grade.  However, I'm not exactly super proud of that award.  I'm pleased, of course, but each quarter, the kids were given an AR goal and they had to reach so many AR points each semester.  J would see how many points he would need, find ONE book that would give him those points, read the book, take the test, and then wouldn't take any more tests the rest of the semester.  It's a backwards way to be really lazy.  The books he chose weren't necessarily easy books, and he had to read and absorb the books so he could get all the points for the test.  He loves taking shortcuts.  Or maybe he's really a genius in hiding.  I don't know.

He also got a penmanship award for having the best cursive in his class.  He told me he knew he was going to get that one because it was just "so obvious" he had the best handwriting.  I've heard this is strange with kids with ASD, but J's talent is art, and for as clumsy and uncoordinated as he is with everything else, he can draw.  He can't tie his shoes, but he can draw very intricate things.

As far as honor roll goes, J got the A Honor Roll for getting all A's for the entire school year.  So far  he has never gotten a B.  When we had the conversation about his grades, he was not really sure what a B meant.  We briefly discussed grades and averages (which he understood better than I thought he would have) and I showed him his report card, which had his averages for each semester as well as his end-of-the-year average.  He was really disappointed in his Reading grade (a 95) and upset that in the third quarter he got a 99 in science, which was the only quarter he didn't get a 100.  I told him if his lowest grade is a 95, then we really have nothing to worry about.  He was pleased that the stamp on his report card said he got to graduate to the fourth grade.  

Third grade brought on a lot of ups and downs.  There were a lot of changes, but I feel that it was a great year of growth.  We found a new therapist that we like, J started going to the gifted program at school, we found a parent autism support group that was coupled with a  social-skills club for kids with autism, and because of all these different things he has greatly improved as a little person.  I have received a lot of comments from his teachers, family, and friends regarding his behavior, his improving social skills, and the way he integrates his new coping mechanisms.  

Hopefully we can continue to help him learn and grow this summer.  Therapy is the only thing that will continue; the rest will pick back up with the start of the new school year.  We are very excited to see where this summer takes us.  

Well, in FOUR DAYS it takes us to DISNEY WORLD, so the rest of the summer probably won't even be able to compare!

16. The Talk

I kept starting a blog post, writing a few words, and then deleting everything a few days later.  We've been so busy lately.  I did a Mother's Day project where I made cards for most of my friends who are moms, which means I handmade close to thirty cards.  Then I have been preparing for an arts project at the elementary school for the End of the Year Party, so I had to prep everything, which included cutting sheets of colored tissue paper into thousands of tiny squares.  Not hard work, but time consuming.  Since it's the end of the school year (only four days left!) I decided the kids would have a Beach Party.  They will make stained glass jellyfish for arts and crafts, eat pineapple, watermelon, and goldfish for snack, drink fruit punch, and listen to luau music.  After tomorrow, I can put that project under my belt, and then my focus will return to ensuring that everything is in alignment for our big trip to Disney World!

Summer brings other changes, including Autism Support Group being over until the start of the next school year in August.  I will honestly miss it, and I know J will miss going to his club.  The structure of the support group is wonderful; the ASD kids go to a class with other ASD kids and they're able to talk and learn about the struggles that having ASD can bring, the siblings can go to a childcare classroom, and the parents all gather for the support group.  It's wonderful.  It was nice to be surrounded by people who know.  Even the days I didn't speak much, it was comforting being around parents who were still talking about things I could relate to.  The parents of middle school and high school aged kids still had things to offer me as a parent of a third-grader: their experiences when their children were J's age and their experiences now that I may need to prepare myself for.

One of the issues that was brought up during our very last meeting was one we had experienced in our own house just last week.  I was shocked that other parents had gone through the exact same thing.  Our two older boys are getting older and beginning to be mildly curious about bodies, about girl bodies, about boy bodies, about bodies older than they are.  We found out one of them had Googled about bodies on his Nintendo DS, back before I had set any parental controls on it because I hadn't realized that Googling things was on it possible.  The other, we caught stark naked in the bathroom examining himself in the mirror.

None of this really bothered us as parents.  We  know our boys are growing older and are going to be curious about these things.  Stormy took one kid and I took the other, and we've explained that curiosity is normal, the feelings about girls (or hey, boys, we don't discriminate) is normal, but they can't Google what they're curious about because they're too young to understand how to filter through the results - and let's face it, Google can be a very dangerous place for a child who is curious about growing up.  We can go to the library and check out age-appropriate books if they're too embarrassed to ask us.  Anything that we need to do to keep them safe but informed.

Little Iron Man is neuro-typical, so he took the conversation well and just said okay and moved on.  J, on the other hand, is definitely going to be a more on-going process to make sure he understands.  I asked his therapist about it, because we didn't want to offer him information that he wasn't ready for, but it's obviously become something we need to start discussing.  She was very adamant that sex, puberty, and changes were something that we needed to talk about with J - with any child, but especially J.

Since J doesn't understand social constructs or the implications of his words and actions, it's especially important he understand the things he can/cannot do or say in social situations.  We've heard of other ASD kids getting in trouble for things that were innocent in nature for them, but other parents did not see it that way.  Quick examples are, a girl was curious about what boys looked like under their clothes, and asked the boy next door.  She was twelve, he was ten, and afterwards, all hell broke lose from the boy's parents.  Would it have happened if she had been a typical child?  I don't know.  I know that oftentimes parents of typical children are scared of what they don't know, uncomfortable about the differences between their child and one with ASD.  The other example is a sixteen-year-old boy was curious about this "sex thing" everyone was talking about, so he looked to the internet to find someone who would "show him" and he took the family car and drove fifty miles to meet-up with that person.  He didn't understand the implications of what he was doing, nor did he understand what would be happening when he did finally meet up with them.  He just wanted to know what "sex" meant.  (He was fine in the end, nothing bad happened to him, but it could have, very easily.)  Kids who are more neuro-typical understand why they're getting in trouble, why they can't do what they did.  Those two kids still haven't fully realized what their actions meant.  Nothing bad happened when I drove fifty miles, so why can't I do it again?  There's always this underlying logic with ASD kids; if it's logical to them, they cannot see anyone else's point.  The girl in the first example had never had a conversation about bodies, changes, or sex, so her actions were fueled entirely by curiosity and seeking to understand.  The boy had been talked to about those things, he wasn't a stranger to it, but again, he sought a greater understanding.  Which isn't by itself unnatural or bad, however it's the way he went about trying to quell that curiosity that was the problem.

The therapist said we have to talk to the kids in an age-appropriate way and slowly escalate the conversation as they get older.  We shouldn't over-talk the subject or they'll stop listening.  If we over-talk it they'll either get embarrassed because they're not ready for the conversation, or they'll tune us out, as kids often do if they feel lectured.  But it's important for them to know we are here, we're not scared of the subject, and we want them to be safe and happy.

It's been interesting figuring out the right verbiage to use, the right way to say it.  We never want our kids to feel ashamed of their bodies, of the private parts that make them distinctly male, which I think ends up being what happens to a lot of kids.  They get embarrassed or feel shame over their bodies, their curiosity, their feelings - both emotional and physical.  We all experience it in one way or another, some earlier than others, but it happens.  We can't be scared of our kids experiencing it as well.  If we want them to grow up into healthy adults with healthy relationships and/or marriages, then we have to help prepare them for that now.  If we get embarrassed about the subject or make them feel badly about it, then they may grow up associating shame and embarrassment regarding sex and their bodies.  That doesn't lead to healthy adults who have healthy relationships.

When we realized the boys were curious enough to Google certain things, albeit somewhat innocently, we weren't mad.  We didn't want them to associate anger with their curiosity.  We didn't want to scare them away from what they were feeling.  As parents, we want them to be healthy and safe - both of which can be hindered by Googling the wrong thing or finding something scary or illegal on the internet.

Little Iron Man will be more ready for the changes to come than J will; J is so immature because of his ASD in so many aspects that I can imagine that puberty will be far more confusing for him.  Or maybe they'll shock us and both will be equally lost or equally ready.  All I know is that I hope they both grow up to be well-adjusted and healthy adults, without shame or embarrassment.  I think that Iron Man will understand the implications of his words or actions more than J will.  I hope to get J to a place where he understands what is appropriate and inappropriate, even if he doesn't understand why, so that we can feel safe that even if he doesn't agree or understand something is inappropriate, he won't do it because he will know not to.

I should probably start getting some books to help facilitate the coming conversations that are going to happen over the next several years.  At least when I Google these things, I know how to filter through the results.

15. Autism Day at the Aquarium

This past Sunday we went to Autism Day at the Aquarium.  It was sponsored by Autism Speaks, which I know is a controversial charity amongst families who have children with autism, but this event was free.  If we had gone on a normal day, to pay for all of us to get in would have cost $131.80 before tax - and that is not including Tiny because he would be free.  Which basically means we wouldn't have gone because for a family of five, spending that sort of money on tickets is out of the question.  Having special needs kids always comes with a host of expenses and often the fun things get pushed to the side to pay for the necessary things.  So whatever the feelings over Autism Speaks, they provided us with a free day at the aquarium.  

Normally the aquarium opens at 10a, but they opened two hours early for those on the autism list.  It didn't mean it was less crowded, because it was a complete nut house, but what it did mean was that of all the kids who were different, no one batted an eye.  The differences were so normal to everyone that we didn't feel uncomfortable.

J behaved really well.  I had to reign him in a couple times when he would pace and walk in front of other people without realizing it.  He has a way of touching his fingers when he feels uncomfortable and he did that the entire time, but he didn't seem too overwhelmed.  He was really quiet, which happens when he is out of his comfort zone.  

It was fairly noisy, but J seemed okay with it.  A fair amount of kids had some sort of ear protection, like noise-canceling headphones one might wear at a shooting range.  Stormy and I both wondered if those might not be a bad idea for when we go to Disney.  I wonder how different J's behavior might have been if the noises weren't so overwhelming.  I wonder if he would have been more energetic or animated or excited.  

The vast majority of families were very friendly and accepting.  If a child did something, like bump into someone, or start to have a meltdown, or refuse to get on an elevator, the parents would apologize, but everyone was extremely gracious in their responses.  That's okay or I understand what it's like, you don't need to apologize.  

I think you do need to apologize.  You need to acknowledge that your child has done something and apologize for it because that's the polite thing to do.  J walked right in front of someone and I gently pulled him back and said, "I'm sorry," to the man he walked in front of, and to J I said, "You need to remember to watch where you are walking."  The man smiled and said That's okay, you don't need to apologize, but of course I did and I needed to.

So while most parents were accepting and understanding, a tiny percentage did not apologize for their kids, let them run around, and did nothing to either curb the behaviors or even apologize when those behaviors negatively impacted those around them.  One child knocked into me so hard that I had to take a step to right myself.  I wasn't angry or upset, but the mom just shrugged and ignored it and said nothing to me whatsoever.  I saw enough of this that it made me wonder - are these kids' behaviors worse than my own ASD child because they have a more severe form of autism, or are these kids' behaviors worse because their parents use the ASD as an excuse and don't try to stop the negative behaviors?

The positives in the experience vastly outweighed the negatives.  It was also the first time I had done anything like this.  Normally I would not have signed up for an autism day or accepted free tickets, but it was nice to be able to go with the whole family and have everyone participate in something that we may not have been able to do otherwise.  

Mostly I left feeling pretty good - good that the older boys were able to have fun and have fun at something they could both really enjoy and good that the entire experience was so positive.  I didn't have any feelings of stress because I knew that if J had any sort of episode or negative reactions to anything in the aquarium that those around us would understand.  No one would stop and stare and wonder what was wrong with my kid, because what is wrong with my kid is what is wrong with their kid, so there was an air of acceptance in the entire place.  And whether people likes Autism Speaks or not, for one day they were able to help me provide something for my family that was wonderful.

J and Little Iron Man in front of the jellyfish.

14. M-I-C - See you real soon - K - E -Y - Why? Because We Like You. M-O-U-S-E

In six weeks we are leaving for Disney World.  We are leaving Tiny with my parents (bye, Tiny) and are just taking the older two boys.  We have a (evil) genius plan.  On Thursday morning I am going to drop the boys off at my parents house for a playdate while I go home and pack up the car.  When Stormy gets off work, we will get in the car, pick up the older two boys, and start the drive to Florida.  But the boys won't know where we are going.  The whole thing is a secret.

I just bought them new duffel bags with their names embroidered on them which I will pack full of their clothes and things for the trip.  I have small packs for them to take to the parks that we can fill with snacks and souvenirs and a new water bottle that I bought for each of them.  They each have a DS and a handful of games, and we also have a dual-screen dvd player in the car, so I will also pack the car with a couple of movies.

We are really excited to take them to Disney, and also excited that they have no idea that we are going.  I didn't realize that Disney offered any special services for those with ASD until I started hearing about it on the news and how angry certain families were over the new regulations.  I'll be honest, I have no idea about this.  I never considered looking into whether there were any special services for J at Disney.  It never crossed my  mind.  Perhaps that is rather naive of me, but I usually don't seek out special services outside of his school.

I think I have a certain amount of guilt when looking for services.  I wonder, does he really need it?  Am I exploiting his disorder?  Do other people need this service more than we do?  I get an odd feeling whenever I use the ASD as a reason or excuse for something.  I don't know why.

So I looked up Disney's disability services and bean reading through their brochure about Disney and ASD.  It was definitely interesting.  They broke down the attractions into different sets of senses for those who have sensory issues.  Touch.  Smell.  Noise.  Flashing Lights.  Restraints.  Etc.  It was great and very relieving!  J has been to Six Flags and he likes a certain number of the roller coasters.  He doesn't like not knowing when he is going to go upside down, but he is surprisingly okay with that part.  He would rather sit in a normal seat than ride something where the straps come over his shoulders.  All of those rides are outside, too, and he sometimes has issues with lights, but mostly just has issues with sound.

In the mornings when we make coffee, he closes his ears so he doesn't have to listen to the grinder.  When I used to make baby food for Tiny, he would close his ears whenever I used the blender.  At school, he cringes when the bell rings, but he does okay with it because he knows it's coming.  I'm not sure how he is going to do with some of the rides that might have loud noises.  My husband brought up the Lilo & Stitch ride.  I haven't been to Disney since that ride came about, so I can't even begin to assess how J will do.  Luckily, we can look through the list of rides and get a better idea of ones we need to help prepare him for.

He has done fine with the lines at Six Flags, so I think he'll do all right with the lines at Disney, but my concern is I don't want to force him to wait in a line for a ride that I'm not sure he'll enjoy.  That's where I think we will use the disability services.  I would rather have him be able to ride as many rides as we know he'll enjoy and perhaps that will offset the rides he won't.  I hope that the rides that will be fun will help his overall mood and lessen any potential problems we have for meltdowns or etc.

This year is a big year for me.  I joined an autism parent support group.  I signed up for an autism walk to raise awareness.  I signed up for the autism day at the aquarium, which comes along with free admission for families with a child with autism.  And then now, going to Disney and using their services.  I've never been a fan of doing things like this.  It's never been out of embarrassment, but perhaps more out of just wanting to make sure those who are worse off than J can have access to these things before us.  But we deal with autism every single day.  And even the days that are great, we are still dealing in some aspect with autism.  It never fully goes away.  It is never cured.  Because of these reasons, I think I decided that I needed to start using more services to my advantage.  Be more aware and more comfortable with it.

Either way, we are going to Disney and we are going to meet Mickey Mouse!

13. Off the Autism Clock

This week past week was spring break.  The two older kids are with other family members, so it's just been me and Tiny at the house, and Stormy when he's off from work.  First of all, I don't have to wake up at 6a to get anyone ready for school.  That is the most amazing part of this week.  Tiny sleeps until at least 9a, sometimes 10a.  He didn't sleep for almost the first entire year of his life, so he's making up for it now.  

Honestly, it's been a very nice break.  It's given me a chance to relax and only focus on one little person.  It's let me think about the things I want to do, need to do, things that are just out of reach and how I need to grab hold of them.

Whenever I get small breaks from the kids, whether it's an evening or a day, it allows me time to be ME.  Not the me who is a mom or the me who is an advocate, but the ME who is ME.  It's nice to be able to breathe and not always feel as though I'm just trying to catch my breath.

We get breaks like this every so often, but we always have at least one of our babies at home.  Usually the baby, since he's so little still.

It's times like this week, when I get to be calm and laid-back that I gain strength to deal with the chaos that sometimes erupts in our house.  Us parents of special needs kids aren't superheroes.  We're just regular people and these are the kids we have.  We didn't choose them, they were given to us, whether by God or nature, but it wasn't our choice, so sometimes we need a break.  

There was a period of time where I tried to be that superhero, where I tried to implement all the suggestions from the therapist, implement advice from autism articles in books or websites.  I tried to do anything and everything that was supposed to help J.  But I reached a breaking point.  I felt like an emotional mess inside; I was a fraud.  I was trying to keep it together, trying to show how strong I was, how brave, how together, but tiny things made me want to cry.  Or they did make me cry and I couldn't figure out why.

For me, it boiled down to needing help and support and not feeling as though I was getting an adequate amount of either.  I tried to do everything and keep my cool and calm, but sometimes all the stress and emotions overflowed and I had to let it all out.  There is something to be said about allowing yourself to cry.  I remember several months ago when I let it happen.  It was last September and I was in the middle of a painting project in the house, and I had a very limited amount of time to get it finished.  I had thought Stormtrooper was going to tape everything off so I could finish, but it wasn't taped, and I looked around the room and felt this overwhelming pressure build up in my chest, throat, and behind my eyes.  I probably shouldn't have been so upset about blue-tape, but it was the final thing that made me lose it.  I sat down in the room and cried.  I cried for a while, everything came pouring out of me, and the pressure slowly began to dissipate.  Then the tears stop, I picked myself up off the floor, went to the kitchen and drank two large glass of water, and I immediately felt stronger.  I went into the bedroom and painted as much as I could before Tiny woke up from his nap and I had to stop.

That day, the tears were very violent.  I haven't had a breakdown like it since, but I have also used my words to really convey the times when I need extra support.  My husband has also been more giving when it comes to times that I take for myself away from the house, away from the kids, so not only do I get more emotional support at my house, but also more support when I need my time away from the house.  Those times are very important because it's time to relax and not have to be a mom - a normal mom and a special needs mom.

I've wondered if my husband doesn't fully understand what it's like being at home since he works for 10-12 hours a day, but I think it's a learning process for both of us, to find the balance of understanding and support so that neither of us gets overwhelmed in the roles we play in our family.  It has taken time, but he's become an advocate in his own way for both me and J, and also he's become more understanding and supportive.  He's relinquished a lot of the apprehension over what he doesn't understand and has allowed me to take the reigns.  Of course there are times where he disagrees, but overall he has a much more open mind to the therapies we do, and the hardships we face along with the celebrations we make.

I know not everyone is as lucky as we are to have family set in place who will help take care of any of our three babies so we can get a break.  It's still a somewhat rare occurrence, but a blessing nevertheless.  We are also lucky that our ASD diagnosis wasn't severe so that our family is unable to help us out as much as they do.

My favorite times are when the family is all together and happy, but I have enjoyed the time off the Autism clock this past week.  I've gotten to a place where I am not embarrassed to be open about the hard times we've had with ASD.  A lot of my strength has been learnt during times of darkness.  And the ugly truth of ASD is that there are a lot of ugly times, a lot of emotionally overwhelming times.  But as much as the time off has been lovely, I'd rather have my sweet ASD kid home and I'll give him a huge hug when I do finally get to see him!