Oh, the Irony.

I find it ironic that the day after I made a post about needing to live forever, I got admitted to the hospital with a serious infection and got to stay there for the next three days.

In a nutshell, because people have been asking and also because I'm not one for gory details, I had a bump on my jawline that I thought was a bug bite or something.  It wasn't.  It swelled up to painful proportions, I went to the ER on Sunday morning, they tried to fix it and couldn't and sent me home with apologies and a band aid.  A few hours later I spiked a fever and had chills.  And went back to the ER only to get admitted for "IV antibiotics".

I am much better today than when I went in there, but I am told that I must take it easy and rest until I am completely over this.

I would love to say that while I was in the hospital, as I lay in the single bed looking at the clouds float by, I had time to contemplate life and realized what was truly important.

But I can't say that because I spent most of the time doped on Morphine or Tylenol 3, too tired to read a book and too sick to care about anything else.  I looked like hell and I have to hand it to my friend Kristy who gave me her biggest smile and said "You look fine!" with the enthusiasm of an auctioneer trying to sell off grandma's dime store china.  I love her.  This is one of the reasons why.

The other thing I did while I was there was worry.  Would Logan behave himself while I was gone?  What were the kids eating?  Is the house a wreck?  Did the dogs get to go outside or is there a special place on our floor now covered with doggie piss?  Did our four year old eat dinner?  Who gave her a bath?  The list was endless.

I really needn't have worried.  My husband took the time off work we would have used for a vacation and took care of EVERYTHING.  The kids were fed. They behaved themselves.  They got to and from school.  The house was clean.  The dogs were still alive.  When I got home, nothing was amiss.  A friend and also some family members came through with meals for everyone to eat.  We were taken care of, and my husband took care of everything else.

Which tells me that if I needed to realize anything, it's that I worry too much, and due to the outpouring of love and concern I received while I was in there, I am much more loved than I thought I was.

I am truly blessed to have amazing friends, and amazing family members.  I love you all.

The Biggest Fear

No one wants to outlive their children.  Nobody normal, anyway.  But I have to tell you a secret about parents of special-needs children.

We want to live forever.

We always vow to take care of our children for "as long as we can" or "as long as we are able". 

We have to live forever.  What will happen to them if we don't?

It's the biggest fear we have:  That something will happen to us, leaving our children in the hands of people who may not understand them as well as we can or know how to take care of them or advocate for them, even after they've reached adulthood.

I really wish this was different.  I wish that the world was made differently, that we, as a human race, understood that we are all born here, that we all do have a finite amount of time to get it right, and that we do much better if our hands are held together.  Can you imagine what it would be like to know that if something happened to you, an entire village would rise up to take care of the loved ones you left behind?  It's a nice story.



It's like the story of the spoons.  Have you heard this?  In the story, a group of people are invited to a fine banquet.  The food is sumptuous and delicious and plentiful.  But the only utensils they are given are spoons with handles so long that they cannot possibly eat with them.  The only way to enjoy this feast and feel full is to use your spoon and feed someone else, and hope that someone does the same for you.

Unfortunately, most humans aren't made this way. 

I know that I won't live forever.  The best I can do is practice yoga and buy a bag of baby spinach on a regular basis and hope for the best.

A Matter of Decision

 

The other day I was texting back and forth with a very dear friend of mine (hey, Kristy D!) and she was asking me what the hardest thing was about raising Logan, or something to that effect. And she remarked that it must be very hard on a marriage, because we don't have the time to do the things that couples do who have neurotypical children.

In some ways, that's true.  I've written a little about this topic before, but I think this time, I want to be a little more blunt about it.  If you Google "divorce and autism" you will see a lot of disturbing statistics...something like 80% of couples who are raising a child with autism get divorced according to some of these so-called reports.  But you will see, in greater numbers, articles debunking that myth.  Who knows if it's true?  You can make statistics say anything you want them to say.  (i.e. 80% of couples who get married both like the same brand of cheese!  or 20% of couples who get married disagree on their preferred brand of cheese!...it's the same statistic with a different spin, see?)  What's important is that yes, raising a child with any disability puts a great deal of stress on a marriage.

Why? you ask.  Isn't raising a child, period, stressful enough? 

Well, sure it is.  But here are some of the challenges we face that some couples with neurotypicals don't:

1) We can't find a babysitter.  What's more, we're leery of even hiring one. Parents who raise children with ASD or other disabilities are the quintessential overprotective helicopter parents.  We don't trust easily, and it's because ASD is such a mixed bag that we can't expect anyone to know exactly what to do for our kid.  And do we really want to inflict a hormonal tween who still indulges in cataclysmic temper tantrums on some poor 16 year old who probably has half the strength that he does?  No.  We don't.  The fact is that that probably wouldn't happen, but we know we can handle it.  We just don't know if anyone else can.  No offence to anyone who might be up for the challenge.

2) We parent differently.  A lot of moms and dads parent differently.  It can take months or years to figure out what works best for the ASD child.  And there will be disagreements on what works best. 

3) One parent takes on the mother lode of responsibility.  If you're a control freak like me, then it's easy to shoulder responsibility that you really shouldn't.  And sometimes, by necessity, one parent will take the lion's share of responsibility for that child because of the way schedules are...so while one parent works full time, the other parent deals with schools, doctor appointments, managing the child's schedule, finding a specialist, that sort of thing. This can lead to burnout and resentment for the parent doing all the work, and it can make the other parent feel uninvolved or not needed.

4) We can't go places as a family.  No, we can't.  Some children with ASD do not do well in certain environments.  Any place that requires extended periods of quiet are a no go for us.  Our child has verbal outbursts.  He can't help it.  So, that means certain restaurants, movie theaters, playhouses, and musical performances are out of the question.  The world simply isn't made for autism.  That's the way it is.  The things we do as a family are usually outdoors and involve the park, or a trip to a fast food place.  And yes, there is a way to train your child with ASD to tolerate those other environments, but it involves a LOT of patience and it involves going to that venue and placing them in that situation OVER AND OVER again for as long as it takes until they become acclimated to it. And most of us do not have the time or money to do it...it's easier to structure our lives around it.

5) We can't go places as a couple.  See number 4.  Seriously.  We can swing a date that lasts an hour or two, but we always feel rushed and there is always a sense of "is he ok? is he screaming?  do we need to go get him?"  And going on a weekend trip together as a couple, like for an anniversary or something?  You are out of your skull.  Not happening.

So, after reading this, it seems sort of hopeless, right?  We are doomed to fail, as a couple.  But you don't have to.  It doesn't have to be that way.  It's a matter of decision and it involves a change in perspective.  You see, we have this kid.  My husband and I.  He belongs to us.  This is a trial that we are facing together.  This is a challenge and a blessing that Heavenly Father gave to us.  Communication is vital.  Allowing the other person to be human is vital.  Forgiveness is vital.  If we don't have those things, then we will fail, as a couple.  It's not that I have married the love of my life and that our house smells like sunshine and flowers all the time and our children fart rainbows and ride unicorns to school.  It is never going to be easy and to the outside world it is certainly not beautiful.  But we decided. We decided that we are in this together, we chose to stick together, we chose what was best for our family and our children.  And to me, a conscious decision trumps happenstance or luck any day.  It would be great if things flowed easily, if there was no struggle and if we never had to worry about any of these things.  But then, how would I know what we were made of, if the hard times had never come?  I prefer the good and the bad.  I prefer going into things with my eyes wide open, understanding that life grants us both happiness and hardship, and it's up to us, as a husband and wife, as parents, to live life together and to not let go when those hard times come.

Overstuffing

(image from tntmagazine.com)

There are so many idiosyncratic behaviors associated with autism that it's impossible for someone to understand them all.  I've raised a child with autism for 12 years and I am still learning.

The subject of "mouth stuffing" came up today.  It was, in fact, his teacher that brought it up (Hey, Tiffany!) and I'm glad she did, because it's not something that I really think about.

So, here's the deal. Anyone looking at my son eat would think that we had taught him the most atrocious table manners.  He puts more food in his mouth than he can possibly chew and doesn't always use a fork.  Sometimes he will load the fork with his hands and then use it.  Not the way to go, I know.  But here's why he does it.

The problem, first of all, is hyposensitivity.  Not hyper, because that would be too much.  It's hypo.  Not enough.  He can't tell when his mouth is "full". It's a sensory behavior.  So he puts too much food in his mouth, or the bites he takes are too big. 

Using utensils is also hard for children that don't have fully developed fine motor skills.  It's hard for them.  It feels awkward to them.  It's easier for them to grab food and stuff it in. This is the same reason they have a hard time holding and writing with a pen or pencil or using a pair of scissors.  Their brains are just not wired that way.

So what's the solution?  We encourage our son to slow down and chew.  We encourage him to use his fork and spoon.  We recognize that what comes naturally to so many people is a struggle for him and we try to be patient.

I also ran across this article on the "Autism Speaks" site.  This article has some very useful practical advice, and also illustrates that mouth stuffing is not a problem unique to younger children with autism.

 https://www.autismspeaks.org/blog/2015/03/27/how-do-we-help-adult-son-autism-stop-overstuffing-his-mouth

How It's Going

A lot of people have asked me how it's going since Logan returned home, so here it is in black and white, unvarnished, the ugly truth.

It's going well.

If I was the kind of person who thought that mental disorders were like light switches that could be placed in the "off" position permanently, then I would be in a lot of trouble.  I think that what has changed the most is the way that we deal with it.

The old adage that "children don't come with an instruction manual" is true, and I think when you have a kid that is about to enter the teen years and battles multiple disorders, it's truer than true.  The realm of child psychology is still in its infancy, and we have a lot of catching up to do.  We have now exhausted every option with Logan.  We've come to the conclusion that one more specialist, one more therapist, one more medication, isn't really going to make a lot of difference.  That sounds like we're giving up but what we battle for him has no cure.

So we have to change the way we do things.  A child like him needs "superstructure".  Strict, simple rules that address problem behaviors.  Strict consequences and rewards that are put into place and not thrown out the window just because it's hard to maintain.  Someone asked me yesterday how long I thought I could "keep that up".  I wasn't sure what to say.  All I could think was, if this is what works, then this is what you do.

And usually, I'm the kind of person that takes a more "eternal perspective" on things.  I worry a lot about what's going to happen to Logan when I can't take care of him anymore, or if we have another stretch of months when his behavior spirals out of control in spite of our best efforts.  But for now, one day at a time is serving us well.  We consider each day, separately, instead of looking at this long stretch of life when things are just bad.  Because life is not all bad.  It's good too, and we are focusing on the good things, and sometimes that's the only way to do things.

Rome Wasn't Built in a Day or This Calls for a Cliche

I'm sitting here after an exhausting day of running errands back and forth, and in between times trying to get my son's room ready for his arrival from the hospital.

I sound like a mom-to-be.

I wish it was a nursery.  I wish we could start over.  In an odd way, it feels like that.  He's being discharged from the hospital.  I found this out on Friday.  We had a very intense family council about the best way to handle this and now, here we are. I'm excited and nervous and scared. A lot of people have asked me, What if nothing has changed?  And believe me, I have thought about that.  The only answer I have is that this is a one step at a time thing.  God is opening the doors, not me.

But yes, I am exhausted.  My house looks like a bomb went off, full of shrapnel made out of Legos and Barbie dresses and plastic dinosaurs. I ache all over and my nose is stuffy.  I want to crawl into bed and cover my head up and sleep and sleep.

But I sat down in this chair instead and thought, Rome wasn't built in a day.  I hate cliches.  "pretty as a picture" "cute as a button" "hotter than hell" I hate them...overused and so much a part of our vernacular that people don't pay attention to the way they actually sound. This time, though, it was appropriate.  I can't do all this in one day.  It would take a Roman army.  I might get up from this chair again and move some things around and say that I did something.

Or I might just sit here and relax. After all, tomorrow is another day.

Where Did you Go?

Losing a child is painful.  I  know this.

About a month and half ago, I had to admit my son to a mental health hospital.  I'm going to ditch all the vernacular and the jokes about asylums and straight jackets and what not, because right now, I'm not equipped to deal with it. People get cancer, they go to an oncologist.  They get burned, they get admitted to a burn unit.  They have mental health issues, they go to hospital that's made for that.  The end.

So, yes, I know he's breathing and well and taken care of.  But I stopped writing for over a month because I couldn't write about it.  When you take care of someone, night and day, for twelve years, and suddenly, they're gone, you mourn them.  It's just the way it is.  For a mother, this is so painful.  There are logically-minded people in my life who point out all the good things about what's happening, who chastise me for being "depressed", or who tell me it's not that bad.  But I've learned that those logically-minded people aren't that great at being understanding or supportive, so I don't listen to them so much.  You do get to a point where certain things, that matter so much, just don't matter anymore. Life is short, and maybe, lately, I've been more blunt than I would have been inclined to be in the past.

In the meantime, the sun still rises and sets.  That's enough for me.