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.

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.

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.

11. To School or Not to School

The topic at the house for the last couple days has been public school or homeschool.  Stormtrooper is adamantly against homeschooling, so there's that hurdle to jump across.  And a rather large one at that.  I have a list of reasons why I think it would be a good fit for our family, but maybe I'm blinded because it's my idea.  Perhaps Stormtrooper is blinded against it because it's not his.

First, to get it out of the way, I never thought I would homeschool.  I never thought I would think about homeschooling.  Second, I don't want to create my own curriculum or anything of the sort.  I want to enroll J in an online, cyber school, with me to be there to help guide him through the classes at a comfortable pace.  There are a couple of options in our state of online public school.

So why homeschooling?

J has certain struggles in school.  Academically he is doing fantastic, but I always wonder if his behavior doesn't keep him from striving further or excelling more.  I think allowing him to learn at a different pace would give him the opportunity to work through his best subjects more quickly, giving him more time to work on the subjects he has more trouble with.  Which, as a straight-A student, he doesn't struggle with much.  On his most recent report card, he got a 92 in Reading and he was unhappy with that grade.  I know there have been times during Reading or Language Arts where he has started to meltdown or couldn't transition because he was struggling with some of the themes they were working on.  He loves to read and reads at a high grade level, but when it comes time to what motivates characters, what they are thinking or feeling, he has an extremely difficult time figuring it out.  When it comes to creative writing, he almost cannot do it at all, and it's a struggle and a fight with his teacher to get him to even attempt to try.  For subjects like that, a more unlimited timeframe for him to finish those tasks/subjects would probably make a world of difference.

The problem with a lot of children with high-functioning autism is that they are special needs kids, but because they're of average to above-average intelligence, they don't belong in special education classes.  Yet, they should be taught a special way.  The schools out there for kids with autism tend to be incredibly expensive.  (The one near us is $25,000 one year, every year.)  I know there are teachers who are fantastic and really try their best to teach J, but I also know there are teachers who do the bare minimum because, honestly, they signed up to teach children, not special ed kids.  Teachers who want to teach special ed have degrees in it.  I feel we really try to mold and force kids like J to be as normal as everyone else, to fit in perfectly, but they're a puzzle piece that doesn't fit quite right.  We can't treat them as special needs kids half the time, but then force them to go to schools that aren't equipped for their special needs.  We can't have them be special and normal simultaneously.

There are a few things J has a strong interest in and I wish I had time to help foster those things.  Art is the main one; J is an amazing artist.  I've wanted to have him take art classes/lessons for the last couple years, but between therapy, his new autism friendship club, and my work schedule, I don't have the time to also schedule in an art class.  It actually makes me kind of sad, because I think it's very important for a child like J to really have something he excels at.  So often he hears what he is doing wrong, how he needs to fix his behavior, that he needs to change something, do something different.  I'd like to be able to focus on something he is doing right - and doing well.  If I could schedule J's therapy or art any time during the day, so much time would be saved.  As it is now, he gets off the bus a little after 3pm, so the time we have to do things is very short-lived, especially when we have to do homework and school projects during that time as well.

I imagine if I had time during the day to focus on J's school, then in the afternoons, I could focus on Iron Man's activities so that we would have more time for his wants and needs.  Is that realistic?  Or feasible?  I don't know.

I know there are kids who make fun of J now.  He's only in third grade, but there a couple kids who tease him.  It's not malicious, and I'm not even sure he understands what is going on, but it happens.  Kids can be mean the older they get, especially in middle school.  I would rather be proactive than subject J to a school year of misery.  He's beginning to realize he is different and he's beginning to question it.  Why is he different?  Why aren't the other kids all different, too?

The socializing aspect of homeschool is not something I am concerned about.  We are involved in an autism group that allows friendships with kids who are like him.  There are homeschool art and music classes, homeschool co-ops for field trips and get togethers.  There are homeschool clubs and sports teams.  There are enough socializing resources out there that I don't think we would have to be concerned for his socialization.  Besides, he is socially behind all the other kids in his grade because he is a few years behind them maturity-wise, so allowing him more time to mature and grow before being around people his own age might end up being helpful for him.

Stormtrooper doesn't believe in the preemptive pulling of J out of public school if he's doing "fine" now.  That we should wait to see if he's bullied or if he struggles in his classes.  And he's probably right (to an extent).  Of course, he doesn't believe in pulling him even if there are struggles, because for Stormtrooper, J has to learn how to deal with real life.  He can't run away from all his problems or expect a parent to solve them for him.  I agree.  However, I would hope that when the time comes for him to get a job, that he will be upfront with his boss and tell him he has Autism Spectrum Disorder, and he will have a job that will be flexible in regards to the things J struggles with.  And if there are jerks who make fun of him, I hope he has a job with a strong HR department who will take care of the problem.  But we don't necessarily have those advantages in public school.  There is also a wide range of what "fine" is.  Is fine simply surviving school?  Is fine excelling?  Is fine doing the minimal, passable work?  Is fine having no friends, or no friends who will stick up for you?

What is fine?

The other issue Stormtrooper and I have gone back and forth about is the worry that by homeschooling J, I would forsake the other children (and husband!) in the house in an attempt to teach.  That I wouldn't have time for focus on anyone else.  I wouldn't have time for housework or regular work.  I wouldn't have time for Slytherin Mama type things.  I don't know if this is true or not.  I do know that I require less "me" time than Stormtrooper does and I am happier being at the house doing house-children-type things than he.  I think finding time to do things I want to do, or need to do, would probably take forethought, but parents manage to homeschool all the time without their houses being condemned for lack of cleanliness or losing one kid because the focus is schooling another.

For me, mostly it boils down to two things.  First, I don't think that public schools are fully able to allow the time and resources to teach J in a thoughtful way since he is a special needs kid but not one that belongs in a stereotypical special needs class.  I think his teachers do a great job - this year.  I don't know what next year or the next will bring.  I honestly don't know how much fight I have in me to make sure he receives the education he deserves with the resources they have, and updating IEPs and getting his needs met at school can often be a huge fight.  Almost every year I have left IEP meetings in tears because no one seems to care about my son.  This school was different, yes, but he has caring teachers.  Even then, his IEP is not allows followed and I have to write notes or emails pointing that out.  Second, I do have a large I-want-to-protect-my-children bone.  I want to protect him from the kids who will make fun of him before he is emotionally ready to stand up to them; I do want to protect him from the teachers who will resist helping him.  I've encountered those teachers and it's almost worse than the kids because they are the adults, the ones supposed to be helping.  But is it wrong to take him away from school before anything happens?  What if he ends up actually doing fine?  But what if he doesn't?  What if school starts to go south in October or November and I'm stuck keeping him in a school for months, waiting for the school year to end so I can enroll him in a different school for the next school year?

Since it appears most of the online schools only take applications in the springtime (before April really hits), we would only have a few days to make a decision for fourth grade.  So this is something we will put on the shelf until this time next year where we can make a decision for fifth grade.  Which is probably not a terrible thing; I think Stormtrooper is tired of talking about it.  Bless him.

Being a parent is so ridiculous sometimes.  I always want what's best for my kids, but since I cannot look into the future and predict anything with certainty, I'm left with making decisions with a lot of unknowns.  And the unknowns can be a very frightening thing.

10. Celebrations

For a while, we were having really bad mornings with J.  He woke up in really terrible moods, he had mini meltdowns when he couldn't tie his shoes, he freaked out when he had to brush his teeth.  He couldn't seem to handle simple things like putting his binder into his backpack.  

I wondered if something didn't trigger him when he woke up in the mornings.  He is known to obsess over things, sometimes just one small thing, and he can't get it out of his head until he fixes it, changes it, deals with it, etc.  He wouldn't talk to me about it, about how some mornings he's a happy little boy and others he is as sullen as a stereotypical teenager.  

So I made a list of How to Have a Perfect Morning and it outlines key things to do to have a perfect morning.  Wake up with alarm, get dressed within 10 minutes, make your bed, be ready at the kitchen table for breakfast, have your lunchbox on the table so mom can pack your lunch, and so forth.  I awarded a large number of pebbles (currency for our house) for a perfect morning, but he still gets rewarded for having a good morning, and if he has just a really difficult morning, no pebbles at all.

The purpose of the list was to help him not completely derail if one part of his morning goes poorly.  If he forgets to set his alarm, that's okay, he can still have a good morning.  If he forgets to make his bed, again, it's okay, he can still have a good morning.  Before, he would forget one thing and his behavior would completely go to hell.  As neurotypical adults, we can see that just because we forgot to make our bed, it isn't going to ruin our entire day.  But if one tiny thing went wrong in the morning, it would ruin the rest of J's day.  Bad mornings led to bad school days which led to a lot of notes or emails from teachers about J.  

The pebbles we use in our house are like currency.  They have a monetary value if the boys want to cash them in for real money to spend, or they "cash" them in to us to "buy" time to play on their DS's, the PlayStation, to draw, etc.

We tried stickers and points, and it didn't work.  I believe it didn't work because the rewards were not tangible and it made playing electronics or doing other fun things very vague.  There were times when we didn't feel the boys should or could play computer games because of their behavior choices, but now, as long as they have enough pebbles, they can do anything on the list (they do have to ask first, of course).  

Pebbles live in these jars on a shelf on the boys' desk. 

Pebbles!  Blue for J, red for little Iron Man.

I started this for J because getting his good behavior back on track was an undertaking, but it works well with both our big boys.  I'm sure if we gave Tiny pebbles, he'd just try to eat them, but it'll be something I will try with him as well.

Anyway, my mornings with J were going from kind-of okay, to not-so-good, to poor, to bad, to worse.  I had no idea what was triggering it.  I know that when he feels the pressures of time he stresses out and has a lot of anxiety.  

"Tie your shoes, we have to go wait for the bus in two minutes." 

< Insert meltdown >

But making a list has helped me to keep him on track.  Just because one thing goes wrong doesn't mean everything is wrong.  It has made our mornings a lot less stressful the last week or so.  I don't think we ever spend enough time focusing or celebrating the good behaviors, the small breakthroughs.  And I want to with this.  It's a small thing, but a lovely thing, and a thing that I know J probably can't appreciate himself, but I can.

This morning is a particular great example.  J had a fantastic morning up until it was time to put on his coat (it was 27 degrees at 7a, why?  Isn't it spring?!)  The zipper got stuck and he will never ask for help; he will meltdown, freak out, stomp his feet, etc.  I saw the beginnings of it, so I told him to come to me so I could take a look at his coat.  Part of having a perfect morning is no tears or melting down.  I told him he could still have a good morning so long as he calmed down right them.  I didn't know it was possible to get a zipper so completely caught and jammed in a coat, and when I got it unstuck, I broke it.  But J just said, "That's okay, I still can wear my coat, and I can just hold it together  while we wait outside.  It's not usually cold on the bus."  Yes!  Yes, you can.  What a great attitude!  This is something that a year ago would have sent him into tearful hysterics.  This year, he took a deep breath (and I assume counted in his head, because that's what he does lately), and then proceeded to find a silver lining.

He got on the bus in a great mood, and I went back into the house feeling pretty good.  Our morning interactions are usually about an hour or less, and in that short period of time, it sets the tone for the rest of the day for both of us.  When we have good mornings like this, and like we've had for the last week or so, it is something to be celebrated.

9. Simple Dreams in Complex Times

Today I took J to therapy.  He goes to therapy the next town over, in the middle of an affluent neighborhood.  The town has two sets of roads, one for cars and one for golf carts.  Roads where teenagers and stay-at-home-mom's take to do all their errands and socializing without having to go over 35 miles per hour or drive through traffic on the main highways.  It makes for a great maze of walkways for Tiny and me while J does his therapy.

My stroller has an auxiliary port, so I plug in my phone, turn on Pandora, and listen to music while walking down the path.  We pass a couple of golf carts, but mostly it's quiet.  Even Tiny stays quiet as he looks around at the sky and trees.  It's far enough away from any main roads to be very quiet, just a few leaves rustling, squirrels jumping from tree branch to tree branch, and the water from the stream moving quickly south.  Just as my music turns from Silversun Pickups to Pentatonix, my phone mysteriously shut off.  I had 50% battery and my phone isn't known for being quirky, but I can't get it to turn back on.  So it leaves me without any noise and nothing to sing to.  I like listening to music on walks like this because it allows me time where I don't have to think about anything.

We get to the end of this small bridge-like walkway and I stop.  There is such simple complexity to nature and I take a moment to appreciate it.  Looking at the woods makes me think of simpler times, not just in my life, but in the lifetimes before, when things weren't so overwhelmed by being on time, driving to here and there, planning and scheduling and looking at calendars, working to make money to pay bills and watching it all get spent away.  The times when people didn't have bank accounts, when they traded goods and there was cohesion in towns and communities.  A barn burned and everyone helped to raise it back up. 

Our lives get so focused on so many outside forces that we can't allow ourselves the time to look at the simple complexities in life.  I spend so much time trying to help J conform to a normalcy that he is not fully capable of and forget to appreciate his idiosyncrasies.

I read a lot of dystopian society books, futuristic where our futures are bleak.  What's appealing for me in a lot of them, our society reverts back to a simpler time, simple like these woods.  In these literary futures, we work the land, we contribute our strengths to the whole.  My husband and I watch The Walking Dead, and as complicated as surviving an apocalypse is, their time is simpler as well.  When the survivors had their community, they worked together - they had jobs hunting, growing food, teaching, cooking.  Contribution to a greater good, a larger whole.  In the latest episode, one of the characters killed another one because this girl was so far outside the social norm that she posed a legitimate danger to them.  That world is black-and-white.

The world we live in is full of various shades of gray, so where does that place someone like J?  How do I help him figure out where he belongs in a society that doesn't fully accept those who are different?  How will he figure out how to contribute, how to appropriately give and take?  And more importantly, if what he decides he wants to do for a job is so far out of his reach, who will be the one to tell him no?

Today, if you asked J what he wants to be, he will tell you a veterinarian.  And why?  Because he loves animals.  Today, he would be unable to put an animal to sleep.  Today, he would be unable to talk to an owner, tell them the truth, and be civil and kind enough in his tone for them to come back to see him with their pets.  He has trouble enough connecting with others and working in a group.  He doesn't realize it now, but it's not just about the animals, it's about their owners, and his co-workers, and a workplace cohesiveness that, today, he would be unable to achieve.  Of course, this is today; I have no idea what the future will bring.  What I do know is that I have the unique job to help gear him towards something that he can do.  

I believe in pushing him, testing his limits, and finding out exactly what he is capable of.  He has ASD, but that doesn't limit everything, yet it does limit some things.  As he grows older, we'll be able to watch him and see what he may end up being capable of, the contributions he will be able to make, so now we just smile and tell him being a vet is a great job, a job that takes a person with a special kind of heart to do.  When he's ready to enter college and graduate school (assuming we're able to get him that far), do we allow him to choose a path that we know he will struggle with or one he just will not be able to do?  Do we cheer him on and help him fly?  Or do we bring him back to the ground and tell him to choose something else, tell him he cannot do what he wants to do?  Would I be the bad guy for watching him fail, or the bad guy for not even allowing him to the chance to try?

I can liken this down to something smaller.  A few weeks ago, J asked me to help him learn how to play basketball.  I played when I was younger, and I know how to dribble and shoot.  I know the rules.  We played in the cul-de-sac in front of our house.  He was pretty terrible.  He is uncoordinated and clumsy, but we both had fun.  We've practiced a few times and I've helped him to refocus him.  He doesn't have to be the best dribbler or shooter, those are not his strong suits and he knows that.  We worked on picks, passing, and blocking.  Those are easier moves, ones he can actually do.  He'll never be good enough to be on a school basketball team, but if he wanted to try out, would I tell him no?  Or let the coach tell him no?  I could be the bad guy and save him the heartbreak and humiliation, or I could allow the coach be the bad guy for not having him make the cut.  Except if the coach says no, I would still feel like the bad guy for allowing him to go out there completely unable to play.  It's a concept I struggle with on many different levels because it's so multifaceted.

All parents play the game of when-my-son-grows-up-he's-going-to-be-a... a anything.  We play these games and insert jobs and careers that will earn our children enough money to take care of us in our old age, because don't we deserve it after raising them?  After at least two decades of birthing them, feeding them, clothing, sheltering, teaching them?  Of loving them, watching them, worrying and hoping and dreaming?  That game isn't so much fun when you realize that your son can't be a anything.  A something, a few particular things, but the world is not at his feet.  

Perhaps his uniqueness could find a happy place in a black and white world.  Perhaps he could hone and contribute the few gifts he is good at, and contribute them significantly.  Unfortunately, in our world of gray lines, there isn't a place for him.  Yet.  

Helping him pursue a dream that I am not sure is attainable is a premature thought since he is only nine years old now, but it's also a recurring one.  For now, I'll walk back to the building where J has his therapy and enter back into the real world.  I'll leave the woods and my thoughts for next week when I'll come back to the peace and complex simplicity again.

Images are from the Southern Conservation Trust.

7. Come Eat Dinner

The point of this blog was to share and document my experiences and challenges raising a child with Autism Spectrum Disorder.  But while I do most of the hands-on work because I am a SAHM, I am not alone, which is why I wanted to do a post about my husband and his and my relationship post-ASD-diagnosis.

Stormtrooper asked me if he was going to be the comic relief of this blog, and while he does often say really funny things, it's not all fun and games.  Actually, when it comes to the two of us dealing with things ASD-related, it can be very tense and angry.  At least, it was for a while.

I met my husband almost a decade ago when I waitressed at a bar.  He worked at Harley Davidson and rode motorcycles.  He had his ears pierced and his tongue pierced.  Such a bad boy.  Little did I know, he was secretly watching Star Trek reruns in his bedroom.  What a dork!  Now there are no piercings, no motorcycles, but at least the tattoos are still there, a small reminder of the past.

He asked me to marry him while I was half-asleep (probably so that I was too out of it to say no, ha!)  And then about thirty seconds later, I was fully awake once I realized what had just happened.  We eloped, because I had zero desire to have a "real" wedding.  Our day was perfect and lovely and I wouldn't change it for the world.

It seems like a good story now that I write it down, and it is, but not every step of the way has been easy.  My husband is very laid-back, which can be a fantastic quality, but when your mind is so used to going-with-the-flow, it can be very frustrating to deal with someone who cannot go with the flow.

Stormtrooper would say, "Come eat dinner."  Three simple words that would create a not-simple response.  Come Eat Dinner implies drop what you're doing and come into the kitchen now.  J wouldn't want to drop what he was doing.  He'd have to reach what he says is a "stopping point."  Whether it's in a book, drawing, or game, he has to reach a mental or emotional stopping point before he can switch tasks.  Often, a tantrum would ensue, a breakdown with tears because J could not transition.  He'd lock up, but then so would my husband, and they would be at an impasse. 

I would tell Stormtrooper, "You have to give him a warning.  Tell him he has five minutes before dinner, give him time to begin the transition."  

But he wouldn't do it.

To me, it seemed like such a little thing.  Just give J a warning, begin the process, and he would, and can, transition from one task to the next.  Since Stormtrooper doesn't understand the why's of the ASD mind, he has trouble accepting.  Personally, I don't understand being unable to transition from one thing to another.  I know that dinner is coming as soon as someone begins cooking, so when it's finished, I can go into the kitchen and eat. J cannot do this.  Even though he will see one of us cook, even if he has already asked what food he will be eating, if we don't say give him a timeline, he cannot stop in the middle of what he is doing.  I may not understand why he does this, but I understand that he does it, so I can adjust myself accordingly.  If Stormtrooper doesn't understand, he resists the adjustment.

One night I told Stormtrooper, "Either give him transitional warnings or stop complaining about his behavior because I'm no longer here to listen."  So he began to do so.  You have ten minutes and then you need to clean your room ...  Okay, now it's three minutes and then you'll have to clean your room ...  Clean your room.  And then?  It was like this epiphany.  It worked.  It's not a perfect system, there are still times J resists switching from one activity to another, but overall it's such a simple thing and now that Stormtrooper does it, J can transition well and they don't butt heads.

The funniest part of the whole thing was how Stormtrooper said to me a while later:  "Giving J warnings really works, we hardly ever have meltdowns anymore."  And he said it like it was his idea.  Which is truly fine, as long as he and J have easy-going nights when I'm at work.

Through this ASD journey, the thing I've learned about my husband is that he has trouble accepting what he does not understand.  He does not understand the way an ASD mind works, so he has trouble accepting the changes that come along with it.  When I first began taking J to therapy, Stormtrooper seemed resistant to almost every single change.  It didn't matter how drastic or how subtle, everything seemed to bother him.   Which, in turn, bothered me, so I felt we were battling more against each other than we were battling the ASD.

It took a lot of time for Stormtrooper and I to reach an understanding about J.  I think he is more open to accepting what he does not understand instead of pushing back against it.  I think I am more willing to allow him to modify the changes to help suit him.  I take on tasks and projects head-on and full-force.  That is my nature.  So when a therapist suggests doing something new for J, I am 100% all in and ready to go.  It takes Stormtrooper longer to adjust to these changes.  For months he would not update the schedule, even though J responded to daily tasks so much better knowing what was coming next.  So I became less rigid and accepting of Stormtrooper's looser, more fluid schedule, and he became accepting of doing the schedule in general.

There was a dark time several months ago, where I felt Stormtrooper pushed back against anything that was ASD-related, where I felt alone, like I had no one to talk to, no one who understood.  I dreaded leaving the house to go to work or run an errand without J because I wasn't sure what kind of crazy stories I would come home to.  I have no illusions that my son doesn't have bizarre behaviors and rituals, so I know the stories were not exaggerated, but almost every night was so negative that I wanted to quit my job just so I could be a buffer between Stormtrooper and J.  I cried a lot.  I felt everything was falling to pieces.  I felt like I was failing at everything.  Between J's behavior at home and school, stories from Stormtrooper and the teachers at school, I thought I was losing some invisible battle against ASD.  There was this bubble around me, filling with pressure and sadness, and nothing seemed to be able to pop it.

Then I heard Stormtrooper describe J to someone.

He's one of the most kindhearted kids you'll ever meet.  

He can be very sweet and caring.  

But everything in his world is puppy dogs and rainbows, 

and he drives me insane.  

Yes, J often talks to himself, sings and twirls around.  He'll have a conversation with no one, look up towards the sky, smile and laugh.  The puppy dogs and rainbows.  But I think it was the recognition that J can be sweet and kindhearted.  It felt like an affirmation.  It was something I needed to hear, to know that even though J makes him crazy, that he doesn't resent him.  And, yes, J drives me insane, too.

It took a lot of arguments, a lot of talking, and a lot of stress before Stormtrooper and I were able to reach a balance.  We are very different people, which means we are very different parents.  Underneath it all, we have the same values and ideals, so at the core we want to raise our kids the same.  We have the same ultimate goals for them (get jobs, move out, be self-sufficient, be happy).  One or both of us could have thrown in the towel.  We could have said NO MORE.  It would have been very easy, and I don't think we could have blamed either of us if we had.

Through all of this, I have learned several things.

• Do not shut yourself off from your spouse.  Keep talking.

• Everyone has a different journey to acceptance.  Some takes longer than others.

• If you're the one who stays home with the kids then you're always going to understand them better.  It's up to you to help your spouse also understand them.

• Compassion.  Compassion for each other.  I have compassion that my husband works 10 hours a day so I can stay home.  I have compassion that he misses out on so much of our children's growth to ensure that they are able to stay home with me, so that I can help guide both our neurotypical kids, and also the ASD one.  He has compassion for me that I stay home and deal with ASD, babies, diapers, dinner, errands, doctors' appointments, therapy, prescriptions, etc.  

• Recognize what the other parent does right more often than what they do wrong.  Sometimes what you may think is wrong is just different and not wrong at all.

In the end, I love him too much to let some stupid ASD stuff get in the way.  In the end, I had to learn to adjust myself to both him and our new ASD world.  In the end, he had to learn how to adjust himself to me and ASD.  In the end, we're a stronger unit, laughing at the puppy dogs and rainbows, and being driven equally insane.