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.

8. I'm Sorry ... What Did You Just Say?

I know there are a lot of blog entries about what not to say to parents with kids of special needs.  But this is my list.  It's a mix of general comments and then a couple very specific ones.  They were all said directly to me and I want to explain why each was impactful.  

When J was four or five years old, we were in Toys R Us to find a birthday gift for a party he was invited to.  Before entering the store, I told him that I was not going to buy him anything.  I knew if we passed by any of the Thomas the Tank Engine or train toys that it would be bad, so I took up a roundabout way through the store as to miss that section.  He ended up seeing it anyway and wandered over.  I immediately tried to redirect him, and he began having a tantrum.  So, I scooped him up, flailing and fighting, and took him outside.  We went to the side of the building and I let him cry it out.  We weren't near the door, I had knelt down, and J was screaming in front of me.  We didn't have our ASD diagnosis so I handled the situation the best I knew how.  I had removed J from the store, taken him outside, so for all intents and purposes, I was trying to be as thoughtful as possible to the other customers.  Yet someone still told me I needed to get control of my kid.  Thank you, sir, I hadn't realized there was something wrong with screaming in front of a Toys R Us.  My eyes, they are now open.
The same thing happened at a restaurant.  J began to have a tantrum, so I took him outside.  He resisted while we walked through the tables, and as we headed towards the door, a woman stopped me and told me to get control of J.  In both situations, I was shocked because I thought it was obvious that I was actively trying to do something about what was happening.  He was not having a screaming fit in the middle of the room while I ignored him.  Just ... are you kidding me? 

This was at the park when J was about two years old.  We were playing on the playground, as most parents do with their kids at the park.  A lady had her son there, who was about the same age as J, and  he was talking up a storm.  J was almost completely non-verbal at two.  I asked his doctor, but J seemed to understand everything that was said to him, even though he did not verbally respond, so he wasn't overly concerned at that point in time.  J did not avoid touch (at least with me), he loved hugs.  At that time, he was not in daycare and he did not yet to go preschool so I didn't really know how he was socially with other children.  He smiled some, but he wasn't an overly boisterous child, so I figured that was his personality.  He did have meltdowns at the slightest change, but again, he was two, so I figured it was part of being a toddler.  So that day we were at the park and this lady asked me why my son was not talking, and then said, "You should take I'm to the doctor, there's something wrong with him."  It wasn't said in a concerned way or even a sympathetic way.  And immediately afterwards when she said that not talking could be a sign of mental retardation?  Yes, I was done with that conversation.  Have a blessed day, ma'am. 

Do I think parents overmedicate their kids?  Do I think parents use the word "hyperactive" when really their kid is just being a kid?  Yes.  Of course I do.  I'm sure we all do.  Would I tell a parent who says their kid has ADHD that I think they need to calm down because their kid is fine?  Hell no.  I'm not an expert on anyone else's child but my own, so it's not my place to say.  I don't know what they're like at home or at school, so I cannot comment on their behavior.  For us, I had a therapist tell me that my son was one of the most severe cases of hyperactivity he had ever seen.  A lot of the manifestations of ADHD are so very closely related to ASD that they blend together.  But my son is unable to sit still to the point that he will knock things over, run into walls, or fall off the sofa.  He jumps in place, runs in a circle, and will shake his entire body until you make him stop.  I never thought I would medicate my children.  Then when J's therapist said he was severely hyperactive, I decided to try it.  Night and day.  No one forced me, no one asked me if I wanted to medicate him.  That was a decision we made for J and then sought advice about it from the therapist.  J is still extremely hyperactive, but he is manageable and because he is calmer, we are calmer, and I have immensely more patience now.  I'm not spending my time telling him to sit down, stop running, stop jumping, stop flailing, so I have more time to spend on focusing on more serious ASD symptoms.  No matter what, you do not know what the child's situation is, so never tell a parent their diagnosis is an excuse for anything. 

This one I can't even.  The phrase "over-diagnosed" was also used in regards to this.  Come live at my house for a while and tell me it's simply poor behavior.  I dare you. 

Because of the foods you let him eat as a baby.  Meat and dairy and GMO's.  Because you vaccinated him against the things that need vaccines.  Because of genetics, do you have autism?
Okay, look, right now, there's no definitive answer of what causes autism, but anytime someone tells me they think they know the reasons why, it always ends up being something that is MY FAULT.  Autism is nobody's fault.  Let's just reiterate that:  AUTISM IS NOBODY'S FAULT.  And if your name is Nobody, I do apologize for being blamed for so much. 

So this is very specific and may not happen to everyone, but it was said in front of my kid by, again, someone who doesn't know us or our situation.  It happened with the pharmacy tech at our local pharmacy.  I was stunned that not only would someone question my son taking a liquid medication vs. pills, but someone who works at the pharmacy itself.  So now you have just made my child very aware that YOU think he should be able to swallow pills.  And again, it wasn't said in a nice way or a concerned way.  It was said with a tone of disbelief.  Like there was something wrong with not taking the pill form of the medication.
What this person didn't know was that it had been a very long process to try and get J to swallow pills. It involved a lot of M&M's.  First, we got the mini kind and had him swallow those with water.  Then once he could do that, we moved on to regular M&M's.  And then peanut butter M&M's.  He does fine with pills that are "regular" sized, but the ones that are bigger than that, he would choke and gag.  Sometimes he could take them just fine, other times the pill and all the water in his mouth would go, well, everywhere.

My nine-year-old has such poor shoe-tying skills that I wouldn't classify what he does as being able to tie his shoes.  We were at Home Depot and his shoe came untied.  We always have him tie his shoes so he can get better at it.  Sometimes he can do it without melting down.  When he starts freaking out, I usually talk him through it, step-by-step, and he calms himself down and finishes it.  So I was talking him through it, I was calm and he was growing calmer, and a man passed by and asked me this.  In front of my child, the one crying over his shoelaces.  This is on par with the previous comment regarding the pills.  You don't know my son, you don't know what we go through so that he can tie his shoes or take his medication.  You don't know how difficult certain mundane tasks are for him, so please do not speak about him crying over shoelaces in front of him.  

I feel that this is somehow putting into question the accuracy of his diagnosis or the validity of his ASD.  He does look normal, especially when you've only seen him for five seconds.  And I don't like to focus on what's normal or not normal, because I do wish my son was a more socially-acceptable normal, and I'm not ashamed to admit that.  But I think I also simply do not understand what that statement even means.  He does not have a physical disability, so no, you would not see any physical manifestations of a disorder.  He does not have an extra eye or seven fingers on one hand.  No limps, no odd gait.  So yes, he looks normal.  That doesn't mean he doesn't have autism. 

Well, I'm calling B.S. on that one, because sometimes it is more than I can handle and I'll break down.  I'll have to ask for back-up, or give myself a time-out in to calm down so I can handle everything.  There was one night in particular, just a month or two ago, where Tiny was screaming for whatever his baby reason was (probably those pesky teeth trying to come in), and J was absolutely screaming and flailing and falling in the floor with his own meltdown, and I felt the walls start to cave in.  I had to get my husband to take one of them.  I can handle one screaming child.  Not two - not simultaneously!  I think this statement is very closely related to the one I hear where God must have had his reason to "choose" me to be the mother of a son with ASD.  That being a Special Needs Mom is a gift and I should cherish it.  If it's a gift, I'm gonna need that receipt.  (Haha, I'm joking.  Sort of.)

This is a lie.  If your child had a special need, you would and you could because when you're a parent that's just what you do.  No questions asked.  You would absolutely do what I do, and I don't believe for a second that you wouldn't.  Maybe not exactly motion-for-motion, but yes, you would do it.  I feel the statement tries to put me on a strange pedestal that I don't belong on.  I'm a parent just like any other.  I get overwhelmed just like any other.  I yell.  I cry.  I make mistakes.  But I love my children and I want to do what's best for them.  You drive your kids to soccer, ballet, and choir.  I drive mine to therapy, autism club, and monthly doctor visits.  Tomato, tomatoe.  Believe me, I'd rather be working out a schedule for extra-curriculars that had nothing to do with therapy, social therapy, and parent support meetings.

Well then.  It's a good thing none of your kids have autism, then.  Also, really sucks that you're telling me this when I am already pregnant.  But maybe if this baby has autism, I'll spontaneously not be pregnant anymore now that you mention it.  Or I'll just be sure to leave out all GMO's from my diet while pregnant and breastfeeding, use everything organic and natural, not vaccinate, and also dance around in circles on a full moon with the blood of a virgin on my hands or whatever ritual will ensure that my child will not have autism.  I know there are some families who have more than one child with autism.  There are also families with no children with autism.  And families, like mine, who have just the one.  However, are you telling me that autism somehow makes a child so much less-than that it's not even worth having another one?  Have you seen pictures of Tiny?  Because he's adorable and I am very glad I had him.  So, seriously, shut up and leave me alone.

People are so rude.  All these statements were made from either complete strangers, or people who don't know me very well at all.  I don't mind answering questions about autism or J from friends and family, where it comes from a place of genuine curiosity and sympathy, or trying to seek more knowledge and understanding.  I do not welcome questions from strangers who demand to know why my son is flapping his hands, or touching every single cereal box in the breakfast aisle and will not stop.  Those times it's best to just look straight ahead and keep on walking.

There are a lot of comments I haven't included on this.  I think we all have a tendency to jump to conclusions when we see other children and parents, and that is a normal human response.  I know I do it.  The difference is, I would not make comments to parents like these.  In today's world, you simply do not know who is struggling and with what, so it's back to that old saying: If you can't say anything nice, don't say anything at all.

Except, seriously, don't say anything at all.

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.

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.

3. Not-so eloquent intro of why this blog exists

When I was little I always said I wanted three kids. Two boys and a girl. I don't know if that was ever the truth; perhaps I said it because people always like to hear little girls talk about growing up to be mommies, after all that’s what little girls are supposed to want to be. Us girls could be tomboys and play in the dirt with fire trucks, but we were still expected to want to be mothers. I didn’t know if I wanted that. I thought I wanted to get married, but seeing how I wasn’t much bigger than Tiny when my parents divorced, I didn’t really know what married meant. 

As a little kid you don’t see a lot of marriage troubles in movies. A lot of princesses and princes falling in love and getting married, maybe a frog or two, but The End usually pops up around the time the wedding night is to commence. I didn’t know anything about marriage or siblings or babies to even know if I wanted any of it. What I did know was that I hated babysitting and I thought all children were dirty and I swore to god if I had to watch one more slimy boy pick his nose I was never going to babysit again. Thankfully I found a job as a waitress as soon as I was old enough to no longer be considered child labor. 

I was still a waitress when I found out I was pregnant. It wasn’t anywhere close to an ideal situation. Even though I wasn’t ready for a baby, I decided that abortion wasn’t my style. I felt intrinsically pro-choice at the time, but it wasn’t a choice I felt was right for me. I’ve made this statement before, about being very deliberate in my choice to have a baby in less-than-ideal circumstance, and often the response I get is something along the lines of:

That’s because you were meant to be 

J’s’ mother and have a special needs son.

Excuse me, are you on drugs? I’ve heard parents say how grateful they are to have a kid with special needs because they learn so much about themselves and how much they love their little balls of joy weird. But is that completely honest? Or honest at all? I love my son. I love having him around. When he has good days, we celebrate them, and those days bring me tears of joy. But when he has bad days, he has bad days. It’s the bad days that leave me contemplating all of the why’s.

I often don’t understand the why’s. Why can’t he tie his shoes? Why can’t he do his laundry on a day that isn’t Thursday? Why can’t he look us in the eye? Why do we have days where we’re both left utterly frustrated and in tears? Why me? Why him? Why our family? Sometimes life doesn’t seem fair or right or just. At the end of the day I’m often left wondering this overall question of why. Somewhere there’s meaning in all of this and I just have to trust that I will find out what that meaning is.

But these days I feel that we’re getting closer to things getting better. There’s some sort of light flickering in the back of this dark room, slowly growing brighter.  I feel all of us getting happier, even if the road ahead is long and seemingly never-ending.

I’ve wanted to write something about Autism for ages now. I used to write all the time: short stories and fan-fiction. I wanted to start writing something that was deeper for me, therapeutic for me to write, but hopefully therapeutic for others to read. Something that matters. But what matters? 

Well you know what? This matters.

If I’m struggling with these feelings of inadequacy and aloneness and fear then other parents out there must feel these things too. Some days I wake up and experience ALL OF THE FEELINGS that exist in the world just in a few exchanges with my son. The Autism, the hyperactivity, all the WTH moments we have in a single day. And I struggle. And I get angry. And confused. 

But I so rarely read these things. I rarely hear anyone say it. There may be a lot of parents who don't want to hear it, or want to admit it, but here I am, on my soap box ready to shout it to the world what needs to be said for those parents who are losing faith in themselves because they have no one to give their faith to:

BEING THE PARENT OF A SPECIAL NEEDS CHILD CAN BE CRAP, 

BUT THAT DOESN’T MEAN YOU DON’T LOVE YOUR KID, 

DOESN’T MEAN YOU ARE A BAD PARENT, 

DOESN’T MEAN YOU SHOULD GIVE UP.

IT MEANS YOU ARE HUMAN.

WELCOME TO THE CLUB.