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.

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.

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!

6. Pushing the Limit(less) Part II: Responsibilities

In my last post, I talked a bit about breaking my ankle and what that meant for J.  This post expands on that.  It was a terrible few months - and my terrible I mean there was anger, depression, sadness, loneliness, and pain.  Mostly physical pain, which I cannot even begin to describe.  

Stormtrooper has a job where he leaves the house around 6am and gets home anywhere from 6pm-8pm.  Five days a week.  So beyond working, he also had to do all the grocery shopping, cooking, and cleaning.  As I grew stronger, I could start to do a little more, but once I had the baby, healing was doubled because I had to have a c-section, so my body was healing from two surgeries in the span of a month.  Stormtrooper was stressed and overwhelmed, and the last thing he wanted to deal with was J having a tantrum over his shoelaces.  (Truthfully, the shoelaces are a huge point of contention because at nine years old, J cannot tie his shoes.)

So we started making J responsible for more chores around the house.  It was slow going and came with a mountain of tantrums and meltdowns.  

The first thing we taught him was how to start the water for his own shower, how to quickly adjust the cold/hot knobs to get the right temperature.  Before, he was able to wash himself, wash his hair, and dry off (mostly), but he hadn't ever done the water.  The first week or two, it would sometimes take him a solid five or ten minutes just to get the temperature right.  Now he can take a shower, in and out, in fifteen minutes - and that's including washing himself correctly, which was also a lesson we had to help teach him, and getting his pajamas on.

The first time he had to do the temperature himself, he cried.  He stomped his feet and screamed.  Because he couldn't get it right.  I was downstairs and still in a position where it was very difficult to get up and down the stairs on my own, so as to not risk my safety, I didn't go upstairs until Stormtrooper came home from work.  (Luckily, that only lasted about a few weeks and then I was able to move much more freely, albeit slowly and carefully.)  

That first night, J ran down the stairs, stark naked, with tears and snot covering his face, claiming the shower was broken because it was too hot.  We talked about turning the cold knob little by little until the water was warm.  A few minutes later, he ran down the stairs, stark naked still, with more tears and snot covering his face, claiming the shower was broken because now it was too cold.  And it went on like that until he finally got a temperature he could tolerate.

The next night was much the same.  So was the one after that, and the one after that.  Until finally, there wasn't any crying.

It was such a relief to no longer have tantrums about the showers.  I honestly cannot say how long I would have allowed his tantrums to continue if I hadn't been injured and had been in a place where I could physically intervene more easily.

After the shower was better solved, I began adding on more responsibility.  I taught J how to do his laundry, how to specifically clean his room or bathroom or parts of the kitchen.  I made chore cards that outlined, step-by-step, how to do every chore/responsibility.  I wrote and rewrote them, removing as many gray areas as I could without overcomplicating them.  Every step was a work-in-progress.  Sometimes we took a step back, sometimes we took two steps forward, but eventually we found an even plane where responsibilities were routine enough for him to follow.

Without the very specific outlines, J seems to be unable to complete certain tasks.  He is not an auditory learner; he absorbs information visually.  So we either hand him his chore cards, or place them on his bulletin board, which also has a white board for messages.

Iron Man also has an identical board and also uses the chore cards.  Sometimes he needs them just as much as J does!  I think a lot of that is just being a little kid, of course, but it also allows us to show them exactly what is expected of them when they do certain tasks, like clean their rooms.  

Next to the white boards is our daily schedule, which outlines the day.  We have several cards, most of which don't have times because putting times on things leads to a lot of stress.  For example, I have 6a alarm, because that is when he wakes up in the morning, but if I placed specific times on when to do homework and chores, it would not allow for deviation.  J does not do well with switching or changing his schedule, which is fairly typical of ASD.  If I gave him 30 minutes for his homework, then after 30 minutes he would stop and go on to his chores; he would not finish his work.  He can be very, very literal.  The schedule is more of a fluid guide, and it works well.

To someone who does not have a child like J may think that the cards seem overly strict, but that was never the point.  Perfection was never once the point.  The point was to have a visual aid to fully explain how to do things, how to do chores and simple things around the house.  The point was to help eliminate tantrums and meltdowns.  J's books on his bookshelf don't have to be in any sort of order, but when the books are stacked on top of each other or with the titles not showing, then J just leaves them there and won't read.  When he knows what books are in his room, he will read for hours, book by book, or chapter by chapter.  To tell someone like him, "Clean your room," he would have no idea exactly what that meant.  

Before, he would move things around, pile things on top of each other, clear the floor, but every other inch of the house would still be an absolute mess.  The best example of this was before I labeled his dresser drawers, he would mix his clothes.  Even though we decided shirts would be in the top drawer, I would find shirts in all four drawers.  Once I labeled them, shirts never found their way out of the top drawer.

J thrives best on routine and consistency, and that's how I treat the chores.  They are a list, step-by-step, and he is able to do them well because they are routine to him.

The schedule is not necessarily strict either, but is an outline for our day.  Before the schedule, he would often ask, "What can I do now?" and not always like the answer.  Now he is so used to the outline that he doesn't always pay attention to it, because it doesn't change too much, but the days he has therapy or his ASD club or we are going to run errands, like go to the grocery store, I put it on there, and he sees it, and becomes fully accepting of it.  Before, he might balk or fight against doing something he didn't want to do.  He still doesn't like going grocery shopping, but if he is expecting it, then he is able to mentally prepare for it, and thus, will go willingly without a tantrum.

A lot of the things he does around the house came about because of my fall and having the baby and needing him to be just a bit more self-sufficient.  A lot of what came afterwards was figuring out exactly what he was capable of and allowing him to actually be capable.  Which may sound odd, but I've met a lot of parents who don't have their children do anything - whether or not their kids have special needs.  When J does something well and I praise him, his body language changes.  He has a very difficult time expressing emotion, but I've learned to read him, and he loves praise.  There are still things he has a lot of difficulty doing, so for those things, I will help him with each step, or guide him so that he will hopefully learn.

That time period was a great learning experience for both of us.  I learned just how capable J was and I learned how to help push him to do more things on his own, but also learned to really read the signs for when he reached his limit.  Before my fall, I worked full-time, and I didn't have the time or the energy to devote to something like this.  I certainly do not fault any parents who do not have their kids do things like laundry or cleaning their own bathrooms; I certainly did not have the patience to deal with that before I stopped working.  But now I see his growth and responsibility and it does nothing but help secure my hopes that one day he will be able to be self-sufficient enough to move out and live on his own, happy and healthy.

5. Pushing the Limit(less) Part 1: The Most Important Person

I am a SAHM.  Two or three nights a week I moonlight at a coffee shop, but during the days I stay home and take care of my kids and my house.  I do all the grocery shopping and errand-running.  Take the kids for haircuts and doctors appointments.  I pick up all the refills of medications from the pharmacy.  Do all the budgeting.  Help facilitate the homework.  But that's my job so I don't mind it.  In fact, I love it.  I never thought I would, but here I am.  I'm lucky I can stay home as much as I do, lucky that my husband works as hard as he does to allow me to do so.

Of all the things I do as a SAHM, most of them seemed geared towards J.  It's so easy to slip into a pattern where he becomes the central focus of the house, but that's not realistic.  We have four other members who are just as important as he is.  Him being on the spectrum does not magically make him more important than anyone else here.  What it does do is make it more difficult for me to express how equal everyone is, and that is a challenge I work on daily.  In fact, it is probably one of my greatest weaknesses (but don't tell my husband that, I still like to maintain that I am without fault).

As someone who has ASD, J doesn't always seem to realize that he isn't the center of the world.  His actions and words can be very selfish, and when you try to point it out, he doesn't see it - or he doesn't understand.  Selfish is a word beyond his comprehension.  When he has a tantrum or meltdown, when he says "no" to a simple request because he doesn't want to do it or he doesn't want to do it on our timeline, it becomes quite plain that he is in his own world.  He is very much in his own world most of the time, where he walks around in circles or talks to himself, flails his arms and laughs.  As my husband says, "It's all puppies and rainbows in that boy's head."  Yes.  Yes, it is.  And it's hard to get him out of that world and back into this world.  It's hard to get him to separate himself from J-Land and back into Family Land.  It's probably more fun in his world, where he gets to make all the rules and be the most important person.  But in our world, he's still only one member of five.

Being the center of a familial universe is fluid.  On my birthday I'm the most important person.  While the big boys are away, Tiny is the most important.  When Tiny is napping and I am helping J with his homework, he becomes the focus.  It shifts and moves, but when you have a child with special needs, it's very easy to get lost in that child and allow everyone and everything else to fade into the background.

Do not let the rest of your family become background.

It's something that happens to me from time to time.  I get so caught up in trying to help J that my brain turns off to the others in my house.  I have to actively remind myself to spread my focus to everyone the best I can.  Not only do I want to make sure that my kids know I love them equally and my husband that I love him profoundly, but I do not want to give my son the false sense that he is the most important person.  When he goes out into the real world, when he gets a job or goes to college, he will have to realize that not everything can revolve around him.  If he goes out into the real world.  We hope we will be able to; that is our ultimate goal for him.

In April 2012 we got the diagnosis of ASD.  In May 2012 we found out we were going to have a baby.  In November 2012 we closed on a new house.  On November 18 we moved from our apartment in the city to the new house in the country.  A new baby and a new house and packing everything up to move is a lot to handle, a lot of change.  It was a lot for J to take in and deal with.  He did remarkably well with all the impending change.

On November 23, 2012 our world changed again and quite suddenly.  I was eight months pregnant, school was out for Thanksgiving break, and I fell while walking down the stairs.  We had only been in the house for five days and I demolished my ankle.    Let's take a moment for me to reiterate the severity of what happened.

My ankle broke in three places, called a trimalleolar fracture.  Those are two pieces that were completely broken off from the rest of my ankle. 

And here is the ankle reset, but not even close to being healed.

Ten days after I fell, I had surgery to add in screws and plates so my ankle could heal. 

Man, that is really nasty-looking.  

So now that we've officially established that this was a bad injury, let's delve a little further into what this meant for my ASD kid.  We had a routine established in the mornings when we lived in the apartment.  I would go into his room and wake him up.  I would make breakfast while he got dressed and ready for school.  Then when it was time, we would go to the bus stop and wait.  But once I broke my ankle, I was unable to walk.  I had crutches, a walker, and a wheelchair because I was not allowed to put any weight on my foot whatsoever.  Moving around was so difficult that for the first several weeks I could not go to wake J up in the mornings.  I had trouble getting down the stairs on my own since I could not walk, so I could not make him breakfast or pack his lunch.  I could not wait with him for the bus.

Suddenly he was thrown into a world where not only was he no longer the center of my attention, but he also had to be responsible for so much on his own.  

My husband would leave out cereal, bowls, and spoons out on the table if he had to leave before it was time to get up for school.  He packed the lunches everyday.  He was a godsend.  J's grandmother gave him an alarm clock and he had to turn it off in the mornings, get dressed, and go downstairs.  He had to wait for the bus on his own because I could not walk down the driveway with him to the bus stop.  Luckily I could see him from the front porch!  

Family and friends shifted their focus to me, to my healing, to helping me get to doctors appointments and physical therapy.  The focus that had usually been on him was no longer there. 

Four weeks after I had my ankle surgery, the new baby was born:  Tiny!  So now our house was dealing with a broken mama and a newborn.  If there was ever an equation for ensuring no one else is the center of attention, it's a brand-new baby and a temporarily handicapped mother.

I believe this period of time was very important in J's growth as a kid with ASD.  He had to learn many new responsibilities and coping mechanisms.  He had to learn to share, to wait, to listen.  I was unable to take him to therapy, so we had to work-through every tantrum and meltdown on our own, we had no expert to turn to for advice.  

Mostly he learned that he is not the center of the universe.  Now, does he still remember that now?  No, not necessarily, but he does seem to have a very realistic understanding that the needs of a baby sometimes take precedence of the needs of a nine-year-old.

Between my husband and my BFF, they'll both beat me to death with the silver lining stick, which after so many years has conditioned me to start thinking about the good things that happen in the midst of something bad.  There were a lot of things that I learned from the time I spent broken. 

• I learned that J was capable of way more than I ever gave him credit for.
• I learned that J is more kindhearted than I realized.
• I learned that I am very easily stressed and have to actively work at remaining clam and collected. 
• I learned that if my husband and I could survive three months of me not walking and a brand new baby at the same time that we probably can survive anything. *phew*

Once I was healed, I was able to more easily stretch my focus to each member of my family, something I had truly missed without even realizing it.  

I had set this post aside to reread later and edit before posting.  I had wanted to post it this morning, but J had a huge tantrum/meltdown.  He has trouble finishing his homework, so one of his teachers gives me next week's work on Fridays so we can work on it over the weekend.  He didn't want to do it so he began to lose it.  There are still times where he doesn't understand that the world does not care what he wants, the world will continue to revolve whether or not he gets his way.  Clearly this is still a struggle for him, but it is definitely better than it was at this time last year.  It reminded me that he is not perfect, nor will he ever be.  It reminded me that there are still times where I have to shift my focus from everyone else and focus on him.  It reminded me that the road ahead is still going to be long and difficult.  But when he had calmed down from his tantrum and sat down to do his homework, it reminded me that even though we hit road blocks, we can move around them to find a clear path ahead.  How long will it stay clear?  Not long, but the older he gets, the clearer it stays.

4. The Diagnosis

In 2010, J began kindergarten at the public school down the street from the apartment we lived in.  I didn't really have an opinion on the school at the time.  It wasn't the best, but it was far from the worst.  He was excited and I was happy that he wanted to go to school everyday.

Halfway through the year, I began seeing notes from the teacher about J's behavior.  I received phone calls from her during the day.  I realized that my kid was being labeled as BD (behavioral disorder).  Honestly, I was floored.  One of the things I have always valued about myself was that I felt my love for my child did not blind me to the fact that kids can be complete brats.  You tell me he had a bad day at school, I totally believe it.  However, the extent of his behavioral problems seemed utterly out of place to the child I knew him to be.

J was kindhearted and he prided himself on doing things correctly and making other people happy, even at a young age.  This kid was not BD.  I wasn't buying it.

Then I found out his kindergarten teacher was on probation anyway and her contract was not going to be renewed.  So I stopped listening to the things she had to say.  I shut myself off to anything bad that happened at school, simply because I figured she didn't know how to handle a classroom of five-year-olds - which was true, she didn't, but by shutting myself off, I also was not allowing myself to realize the common theme with his behaviors.

I had high hopes for first grade, mostly because it was a brand-new teacher.  After six weeks, she called a conference and laid it all out on the table.  I've seen kids like J before ... I think there's something else going on ... What have you noticed at home?  Well.  Certainly not what I had been expecting.  Yes, he had trouble with eye contact.  Yes, he did have tantrums.  Yes, he struggled with transition and change and sitting still.  His teacher began documenting J's behavior while I began my battle with the school.

I asked the school to evaluate my son.  Test him.  Watch him.  HELP HIM.  They said they do not do that sort of thing, which let me be very clear about that right now:

That.  Is.  A.  Lie.

For whatever reason the school had, they refused to offer any help.  So we did it ourselves.  I don't want to focus on what the school did or didn't do, that's a topic for another day, but I want to reiterate that public schools have a certain degree of accountability when it comes to the students.  Do not let the school bully you into thinking that you just have a bad kid, especially if in your gut you know this isn't true.  We struggled because J gets extremely high grades; he gets high grades because he's very smart, not because he pays attention or reads directions, and it seemed his school was less likely to help him because they didn't see an obvious academic impact.

We took our son to a testing center who focuses on diagnosing a wide range of disorders and disabilities.  Their goal is to facilitate testing and then offer suggestions for doctors and therapies.  They point parents in the right direction.  We filled out paperwork.  His teacher filled out paperwork.  J went in and took tests, talked to a psychotherapist.  It was a long process, but in the end, as I was called into the doctor's office, I was surprised at the mixed emotions that I received.

Your son is on the Autism Spectrum.  

We call this Autism Spectrum Disorder, or ASD.

I had to empty my mind of everything I had ever really thought of Autism, because J was not the picture I had in my head of what Autism looked like.  Not even close.  

My husband said something funny when we finally got the diagnosis in April 2012.  

This is very lucky, having a diagnosis is lucky.

Lucky?  How is Autism lucky?

Because at least he's not an asshole.

Yes.  Because at least he's not an asshole.  We have a diagnosable disorder; his actions are the direction cause of something out of his control; we have the beginnings of getting help and answers and therapy.  He is not acting out and having what, to an outsider, would be absurd behavior because he is not getting his way, but because he has Autism.  Or he can be, but at least we know that the root of most of his behaviors is ASD and not him, well, being an asshole.  Which was such a funny thing to say, but the more I thought about it, the more I realized that yes.  Yes, it was extremely lucky.  Let me expand on that.

I was a mom in her late twenties (whatever, I'm celebrating my 29th birthday again this year, so I will always be in my late twenties ... what?) with this kid who was constantly getting in trouble at school.  He had a desk separate from the other students and a teacher who was desperately trying to teach him.  He had tantrums that would last for an hour or two.  He couldn't deviate from a schedule.  Loud noises would make him meltdown.  He talked to himself endlessly, full conversations about everything and nothing.  The question of why he did those things was a constant thought, but with a 26-page report on the test results and diagnosis, I had my answer.  Why?  Because he has ASD.

So his behaviors weren't because he was just weird.  Or because we were bad parents.  Or because I was a bad mother.  Or because he was an asshole.  No, it was because he fell somewhere on the Autism Spectrum line.

There was a huge sense of relief that came along with the diagnosis.  I felt oddly free, lightweight.  I felt boundless.  That was all very short-lived, because as soon as I got home I began to really read through the report.  The basis was to rule out every possible disorder.  So many acronyms and disorders to go through.  Some of it was difficult to understand, some of it was difficult to accept.  So many of the symptoms of one thing bleed into another.

In the end he has ASD and ADHD.  He has many symptoms of OCD and SPD, enough to where we need to be mindful of those symptoms.  But now with the appropriate acronyms to apply to my son, I could get him into therapy and do research and begin to help better our lives.  His IQ was scored very, very high, so we had to keep that in mind as well.  The high IQ would be a struggle and a curse, but that's something I plan to expand on later.

The research began, endless hours on the internet reading articles and other blogs to find out what methods worked best for ASD kids.  I made lists of things to try to implement in our house.  We bought tools and created schedules and charts.  We overhauled our house, our language.  Everything changed.  Everything shifted.

A few months after the diagnosis, J had a terrible tantrum.  He screamed and kicked for over an hour. He pounded on the floor.  I was trying to take a nap and my husband was out in the living room with the big boys.  I was pregnant, so Tiny was literally tiny inside me, and I just wanted to sleep, but all I could hear was this utter chaos outside the door.  I didn't hear my husband at all, just the screaming tantrums of J.  And then the tantrums were slightly more muffled; my husband had picked him up and put him in his room so he could finish his tantrum there.  I don't know that I ever took my nap, but I did cry.  I began to mourn.

I mourned for J, the normal child that I lost.  All the hopes and dreams I had for him were being replaced by this new child, a child with a disorder, a child with Autism.  I would have to come up with new hopes and new dreams.  I would have to come up with a new reality, because the normal child I had was gone.  With a diagnosis came the realization that having a normal child was a thing of the past.  When he was a baby, I thought he was a normal baby.  A normal toddler.  A normal kindergartner.  I knew something was up, but I thought (hoped) it would be some ADHD and with a bit of therapy and possibly drugs, he'd be completely normal and have friends and a happy life.  Of course, even with ASD he can have friends and a happy life, but he'll have to work at it.  We'll have to work at it.  The whole family--

And that's the point where I began to mourn for my family.  We would never have a picture-perfect family.  Not anymore.  We would have to come up with a new definition of perfect, a new definition of a "good day," a new definition of normal.

So while parts of the diagnosis felt very lucky (after all, my kid is not an asshole), some still feel very heavy and difficult.  But all of that is okay, all of that is normal.  Even if "normal" has a brand-new meaning.