29. Long Time No See

For the last several months I've struggled with what to write about.  I've started this entry four or five times only to delete it and start over.

Our family has had some major changes, some of which have been good ... others .... not so much.  But we hang in there and keep on.

I quit my job.  I gave two weeks' notice, said goodbye, and left.  I miss some of the people there but this was the best decision for me personally.  I don't handle drama well, I can't shut my brain off to negativity, and I felt work was such a negative influx of energy that it was really affecting my home life.  It hurt somewhat financially, and while sometimes I question if it was the right decision, I think our family has really benefited from it in other ways.  I'm now home all the time to take care of our three boys.  The two older boys have doctor appointments every week that I can now schedule and take them to without stress of conflicting with anything else.  And while we didn't have the baby in daycare in the first place, I'm now home to take care of him all the time so he never has to see a babysitter.  I did most of the shopping and errand-running before, but now that the weight of other things is off my shoulder, I feel more free to do those things without worry or concern.

The worst part of quitting my job isn't so much having one income, but knowing that my husband has the added stress of carrying this family's financial success on his shoulders.  We've discussed a few times about me finding another job, but our relationship feels better and stronger since I am home when he is off work.  In the past, we would sometimes go three or four days without seeing one another except a brief passing because he would come home from work just in time for me to leave.  I'd come home at 11:30pm and he'd be in bed.  I'd wake up the next morning and he'd already be at work.  It was weird, living in the same house but not seeing each other for days.  I didn't like it.  He didn't like it.  Now is definitely better.

I try to work from the home, making vinyl decals for folks or sets of cards/notecards, invitations, etc. It goes in cycles where I won't have any projects for a few weeks, and then I'll have seven all at once. It's an interesting balance for sure.  It doesn't really bring in much, but it helps keep my brain busy and I enjoy it.  I don't have any desire to go back to a "real job" right now.  I like being even more involved with the kids, knowing what's going on every day, helping with homework, and getting to watch them grow and play and learn.  It's most significant with the baby - who I really need to stop calling "the baby" because he's two years old now - but I still feel I can see it with the older two as well.  

J's behaviors have greatly improved.  I go to my autism support group and while I have things that I would like to change, things that I find annoying, we don't have any glaring autism-related problems right now.  J still has his verbal tic.  He's still clumsy.  He still can't move from one topic to another.  He still focuses his brain on one thing and can't transition to anything else.  But we've learned how to handle those things so well that, while annoying, I don't consider them to be issues anymore.  I'm sure things will come up in the future, but right now I feel we are in a really good place.  (Knock on wood!)

Maybe that's why I've struggled to write lately.  I don't have much to talk about.  Even though I have so much to say.  It's hard to find the balance between what you want to say on a public blog and what to keep off the internet.  How do you know when you've said too much?  What's the line?  Is a toe okay to cross?  A whole foot?  Maybe I'll figure it out and can flesh out what to say, because it looks as though we may be adding in another acronym to our household.  But only time will tell ...

13. Off the Autism Clock

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

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

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

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

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

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

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

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

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

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

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

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.

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.