Thursday, June 13, 2013

8 weeks.


It hasn't been quite 2 months,but we have officially been home for 8 weeks. I'm about to drop some serious wisdom on y'all. Prepare.

I would not,for all the money in the world,go back and do these last 8 weeks over again. Nope. No. Uh-uh. Never.

Also, Down Syndrome? Not a big deal. At all. I mean, really. Down Syndrome is the absolute least of this kids problem. Here's the one thing I notice about DS. You have to teach the child everything,even basic things such as how to sit up correctly. They can and do learn,it just takes a little more effort. Other than that,whatever. Not a big deal.

Oh,and PLEASE,friends PLEASE,for the LOOOOOOOVE. Do not, under any circumstances walk up to someone with a child that has Down Syndrome,and launch into a tirade about how cute their child is,and how ALL people with Down Syndrome are angels,and are just the sweetest, happiest, most loving people in the entire world.

It's just not true. So stop. Don't think and,and certainly don't say it.

I mean,yes. I am assuming there are people in the world with Down Syndrome that are sweet and kind. However, Down Syndrome does not equal happy,kind,loving and sweet. Just like neuro typical children,they have personalities- that range the entire spectrum. Now you know.

Also, kids don't belong in orphanages. There's a reason why the United States eradicated them years ago. It's not a good system,and it doesn't work out well for the children. Unfortunately, Eastern Europe isn't there yet in terms of being able to take on the children in foster care situations,so they wait. In beds. All day. Every day. Reality.

Can you even imagine? I am not a sit still kind of person,so the thought of even being on bed rest during pregnancy made me crazy. Can you imagine being a helpless,vulnerable baby and laying flat on your back ever waking hour of the day. In fact,probably most of your hours are waking,because you don't really want to sleep,since you haven't expanded any energy. You just start dying inside. A little at a time. Except,maybe you have determination,and you're not ready to give up the fight.

So,what do you do?

You survive,that's what. And how do you survive?

You stim. Well, they stim. What does that even mean, you ask?

 The term "stimming" is short for self-stimulatory behavior, sometimes also called "stereotypical" behavior. In a person with autism, stimming usually refers to specific behaviors such as flapping, rocking, spinning, etc.

And this is the reality of my life for the past 8 weeks. Mistakenly,I thought that Pacey (being so young and all),would be docile,listless, and pretty much unable to do anything. I knew about 'stimmigng', but thought it was for the children who had spent years in institution settings.

WRONG. Just in case any other mothers who aren't there yet wonder this,too.

Pacey is a bit of an overachiever,what can I say?

We didn't realize until we brought him home,that he had a number of 'bad' behaviors from his time in the orphanage. The first thing we noticed was that when he put him in the crib to sleep,he would lay on his back and shake his head back and forth. Not just a gentle type of head swinging,but a very violent shake where his eyes would roll up in his head,and his mouth would hang open. It was painful to watch. We tried to stop him from doing it the first few days,but he could not stop. Erik and I tried it on ourselves one day,and were afraid that he was essentially giving himself shaken baby syndrome. About 3 days after we got to our home,I made it mission to get him to stop doing it. It was exhausting. He would do it when he sat in the swing. He would do it when he was in his car seat. He would do it when he laid on the floor. I literally could not leave him alone for ONE single second. I was determined not to give up,though. So,I started doing a number of things to combat it- putting him on his stomach to sleep,and patting him until he was in a good sleep. I put links and toys on the door by his car seat to keep him entertained in the car. I kept him busy as much as I could. It wasn't long before I was able to get him to fall alseep without doing it-but no sooner had I congratulated myself on a small victory,before I noticed a number of other things he was doing. He rocks back and forth, bites himself, pulls his hair, grits his teeth.....

Like I said,he's a determined little guy.

To be honest,I was really not prepared for it. It stressed (and still does) me out SO bad. I mean,it is pathetic to see a 10,11,12 month old hurt himself just to FEEL something. It's not right. It makes me feel angry, at so many things.

We are working so many angles while we find out more about why this is going on. Basically,once a child has learned something,it's hard to get them to unlearn it. Especially when the child is cognitively delayed. They don't really understand why they can't soothe themselves the way they always have. 

I wish I could say that he's all better now. That he sleeps at night like a baby should,and there's no craziness...but it's just not so.  There are times when I stand over his bed,patting his back for 20 minutes to get him asleep,and no sooner do I walk out of his room,he's in there rocking back and forth. It's going to take some [more] time. More patience. More research. More resources. More.

And somedays,I feel like I have nothing more to give. Nothing. I have never been this tired in my entire life.

But here's the wisdom that I'm going to leave you with:

God,in His sovereignty and glory will give you just what you need for each day. Never more, never less. And it's enough. It really is.

Continuing to live one day at a time,on His grace.

1 comment:

kate said...

Thank you for sharing the good, the bad, and the ugly. It helps me know how to pray for you. God continue to bless you and give you and Pacey what you need to get through this.