Heaven and Earth

Logan is home from the hospital for the time being.  I don't mind saying that this is a very stressful thing, but not for the reasons people may imagine.

The entire 2+ weeks he was gone, I didn't really allow myself to think about it.  Visiting hours in that wing of the hospital are very restricted.  I know that there were probably people who saw me out and about at different times of the day and wondered why I wasn't with him.  The answer was because of the visiting hours.  I could always call to check on him.  I could never spend the day up there with him; it simply wasn't allowed.  And even if it had been, it probably would have made it that much harder for him to cope with being there, since our presence was a disruption for him anyway.

So, now he is home.  He proclaimed on the way home that he was happy to be going home, that he wanted to see me, and that "mommy is cute". 

I started to cry when I saw him getting out of the car in the driveway.  I couldn't help it.  I felt angry and happy and sad and scared all at once.  It was too much. And I think that the stress comes from mostly not knowing exactly what will come next.  He's here for now.  He's having a very hard time adjusting to being home and has frequently said, throughout the day, that he doesn't feel good, that his head hurts, and that he's sad.  For anyone who doesn't understand this behavior, it's pretty typical of autism.  Moving a child from an extremely regimented, calm environment to the chaos of a six person family home can be very disrupting to that child and it may take them a couple of days to fall back into the rhythm of the household.  So, the behavior was not surprising at all.  I expected that. 

I know, that at some point, perhaps as early as next week, he will go to a different hospital where he will receive longer term treatment.  I have gone back and forth with myself over this so many times.  I have been told, by hospital staff and family members, that this is the best choice for him.  I agree.  But it's hard.  And it's not knowing that stresses me out and scares me the most.  We've never done this before.  What will it be like?  How long will it last?  Maybe something will happen and it won't happen at all?  These questions are the greatest source of stress.

So, to those of your reading this blog and still not understanding:  why would someone like me put their child in a state hospital to receive psychiatric care?

There's the glaring fact that I don't owe anyone an explanation.  But this is why someone like me would do this:  when your child has serious behavioral issues, and they can no longer be regulated reliably with discipline, in-home structure, and medication if necessary, then it is time to consider that option.  It's time to consider that option because as time goes on, those behaviors will regress and become a problem for the child and for the household he lives in.  It's vital to address it in a child with serious mental disorders, because if you don't, that child grows up to become an adult with serious mental disorders, and that adult may become a statistic or a story on the evening news.

In some ways that is being dramatic or borrowing trouble.  But in some ways, it is not.   There are countless stories in the news of how an autistic adult didn't interact with the police appropriately and got shot or mistreated.  There are countless stories of mentally ill or disabled adults who end up in the prison system, because they cannot make decisions and don't really understand consequences, and there is no other place for them in this state.  But that's a different post.

The point is, the reason someone like me would do something like this is because I love my kid, and I will move heaven and earth to help him in any way possible.  Even if that means plunging into the unknown; even if that means trying something new.  Even if that means being scared. 

This morning I woke up feeling sort of "blah", but I'm the kind of person that doesn't really pay attention to that sort of thing until it knocks me on my bum.  Now here I am, after 9pm, and I am feeling the kind of exhaustion and achy-ness that you only get when your body is trying to flush itself down the toilet.

Stress can make you physically ill.  If you're constantly running back and forth, trying to fulfill an inhuman amount of obligations, and you're in the middle of a family crisis of sorts to boot, then you may just be doing yourself in.  I recently had a conversation with a friend of mine, who is a nurse, and she confirmed that yes, stress can cause many physical symptoms.  While my hair hasn't started falling out, I think it's time to dial it down a notch. (Yes, stress can make your hair fall out. No, mine really isn't.)

Since it's spring break at my university, and I'm caught up on everything, and the weather is supposed to be super stormy and rainy and cold (thank you, Texas), I think it will be good day to stay in.  Maybe sit down and make something.  Perhaps *gasp* waste time watching a movie with the kids.

Sometimes you have to give yourself permission to breathe. 

image from screenrant.com

"We have to be strong because worlds literally depend on us."

The Posts that Disappeared

You may have noticed that there were a couple of posts that I took off of this blog recently.  I wrote those when I was really depressed and upset.  It's a bad habit I have, writing when I'm in a bad mood.  When I do this, my writing has a pretty black outlook.  You'd think I would have learned not to do that by now!

Anyhow, I took those posts away because of the above reason, and also because my mother reads my blog (hi mom).  I didn't want her to worry.  Yes, at my (advanced?  haha) age, I still care what my mom thinks and appreciate her opinions.  I feel blessed to have her in my life.

 

Up before 630 am on a Saturday.  Look at me, seizing the day and stuff. Carpe (yawn) diem.

I'm Going to Take Care of You

Tonight at my yoga class we ended the session, before savasana, with something called a reclined spinal twist.  It's really beneficial; it helps realign the spine and do all kinds of wonderful things for your back, especially if you have back pain.  But I was doing it wrong.  Our yogi had already turned the lights down in preparation for savasana (if you don't know what that is, google it...I love savasana), and she came around and started to reposition my shoulder and one of my legs because I was "crooked".  I started to move and she said, No, you don't have to do anything.  I'm going to take care of you.

And I said, Can I please take you home with me???

Because no one ever says that to me.  "I'm going to take care of you".  Those words are so foreign to me.

So is, You don't have to do anything.

I think that wives and mothers feel like this a lot.  We are caregivers, and the majority of what we do in our lives is for someone else.  A lot of times that gets lost in the shuffle.  We are cleaning a house, or making sure someone did their homework, or cooking a meal, or checking up on a friend, or laying with our eyes wide open because a family member is either not home or they are sick down the hall or right next to us.

I know that there are some people out there who would read this and say, So what?  This is your job.  This is what you're supposed to do.  And there are some who would say, she must like doing all of that or she wouldn't do it.

What people don't understand, sometimes, is that being a mother is all-consuming.  You give everything.  You give the body you had before you gave birth, and it's not the same again.  Even if you do fifty burpees a day, or do some other kind of exercise, there will be some change to it that will never leave.  You start putting other people first. The time that you spent doing all those hobbies and things you loved starts getting allocated to other things.  And that is not a bad thing, but being a mother is a sacrifice, also...because it changes who you are, and it demands your heart.

Did my yogi go home with me?  I wish she had.  She's a wonderful lady, and I always feel a sense of peace around her.  What I do take home with me is learning how to breathe during the tough times, and understanding that just because things are hard now, doesn't mean they will always be hard.

My heart is still breaking.  But it's also hopeful.

If you have a child like mine, then your child will alternate between loving you unconditionally and screaming, I hate you Mommy!!! when he doesn't get what he wants.  If you have a child like mine, he will fall peacefully asleep while watching his favorite movie...after an eventful day of shrieking and hitting himself on the head repeatedly.  If you have a child like mine, then he has hit you more than once, fallen on the floor screaming when his father tries to take him out of the room, or gotten so upset that he has made himself throw up.

If you have a child like mine, then he is the loudest child receiving psychiatric services at the children's hospital.  If you have a child like mine, he flies into a rage if you brought the wrong toy to the hospital, then yells at you to leave.  A child like mine will sit in your lap and tell you silly jokes, plant a garden with you, go for a walk, help you cook in the kitchen, draw pictures.  A child like mine will make up songs for every person he knows, and his smile is like the sun.  A child like mine will also scream at you when you ask him a simple question.  A child like mine is complicated.

I wish that "autism awareness" really was "autism awareness".  Because it's not.  They are not all savants who can play Beethoven's 5th after hearing it once at the age of three.  They are not all catatonic mutes who stare at a corner all day, unresponsive to any outside stimuli.  Many of them are like my son, where the lines between "autism" and "co-morbid disorder" get blurred in a serious way. For us, autism is not a "different way of being" as so many people like to describe it.  It's something we manage, because we know that on good days, our son is there, waiting with his gorgeous smile.  On the not good days, he disappears and he's replaced by this screaming child who cannot be calmed.

Eventually you come to the realization, as much as you've tried not to, that you cannot do this anymore.  You realize that the crisis mode that you, and your family, has been living in for years has spawned a plethora of other problems.  You are tired all the time.  You hurt, physically, all the time.  You do things to "escape" from the situation, like shopping or spending time outside the home or working yourself to death.  Your other children become affected by it too:  they don't come out of their rooms, and chaos management becomes the norm.  For years.

But what else could you have done?  The one person in the house who needs the most help, all the time, is also the one that is the most unaware of all of these issues.  Eventually, he becomes too hard to control, even for you, because sometimes, love is not enough.  Even though you thought you could do that.  That if you loved him enough, and gave him everything, then maybe, just maybe, the screaming would stop, and somehow, he would understand that he shouldn't hit you.

So, after his latest incident, you take him to the hospital, where a kind, soft-spoken family therapist gently leads you to the inevitable conclusion:  your son needs more help than you can give him, anymore.  Perhaps you would consider putting him in a longer-term treatment facility?

And you agree.  Because you are tired, because you know, that if the situation continues in the same manner, someone will eventually get hurt.  Because you are tired of living in a fox hole, waiting for the next round.  Because you hurt for him, and underneath all the screaming and the raging you can also hear his confusion and frustration, and try as you might, you cannot sort that out for him.

What this means is that when a space opens up, your child will go live somewhere else.  It might be for a week.  It might be for three months.  Who knows.  And if he can't get the help he needs at this place, then you may have to face the possibility that he can't live with you anymore. That his time with you, in your home, is limited.

I've had many people tell me that this must be a heartbreaking situation.  It is.  But sometimes you have to love someone enough to do what's best for them, even if it's not what you would have wanted.  Sometimes it's the only option left open to you. The ideal outcome would be that he goes and gets the help he needs, and that afterward, he's able to come home.  We may not have an ideal outcome.  It's too soon to tell.

I don't know what's going to happen in the future, with my son.  I can only imagine that there are hundreds of mothers like me, faced with these circumstances, who don't get the help they need.  I don't know what these mothers do.  I know that eventually, their children grow up, and they go to live in a group home somewhere else.  What I do know, is that no matter where he is, or what has to be done in order for him to be taken care of, I will never stop loving my kid, and I will never, ever stop fighting for him.