Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, March 30, 2012

And another first...of many more to come

Tonight Asher met another milestone. It's one I've been waiting and waiting for, wondering if it would ever happen.

When people ask me, "How's Asher adjusting?" I always say, "Oh, he is so easy! Too easy, really!" and he is. Asher is too easy. If you've never had a post institutional child in your home, you may not understand that it's possible for a child to be "to easy".

It is!

On Monday he got his MMR shot. It's a shot that HURTS, and when I told the nurse that I wouldn't even have to hold him because he won't react to it she said, "Oh, he'll react to this one. It really burns!" The nurse cried because Asher didn't even bat an eyelash. She finally understood what I meant by "No, he won't give any reaction to pain. Why, when nobody has ever responded to his tears?"

In Asher's life, he never learned that he could have an opinion. He never learned that he doesn't have to just accept whatever happens to him, weather that be hunger, being wet, or being in pain, or just not liking the activity at hand. Example: Yesterday at speech therapy, his ST and I were talking and he was trying to get her cabinet open. Neither of us could see that his fingers were pinched in the door. He never made a sound. He just "froze", which is an instinctual safety mechanism that both my boys employ when in pain or afraid.
Now, Angela has a slightly similar reaction, but hers is for a different reason, because she doesn't feel pain like you or I do. Asher feels pain, but the only way I know is because his eyes water.

Back to Asher's first...

We've upped the ante a bit on eating, now that we've started feeding therapy. One of the things we've done is ditch the sippy cups. They are a no-no in the world of Speech Therapy - which I knew but I wanted to get his swallow study done before moving to an open cup - and it was time to get rid of them. Now we've moved onto straws.

Now, I know that Asher can drink from a straw. He picked it up quite easily, really. But Asher doesn't LIKE to drink from a straw. It is work, requires more concentration, and because I cut the straw down to just enough to get his lips around it means he can't stick his tongue out to do it. I know, call me mean.

Last night at dinner Asher sucked his milk down through the straw in record time. This morning at breakfast his juice went down just as fast. Tonight was a different story. Tonight he looked at the cup in front of him with a look of disgust. He picked up the cup and tried to make it work like a sippy cup, but that didn't work so well. He KNOWS what to do with a straw, but he doesn't LIKE the straw. "Asher, drink your milk." He picked it up but didn't put the straw in his mouth. Tonight he decided he didn't want to.

This is a MAJOR MILESTONE in the life of a post-institutional child. Making a choice of "I don't WANT to." However, this milestone is multifaceted. Not only is it the first time he's challenged me on something, but it's also the first time I've had to put my foot down with him and say, "You will drink your milk."

Yes, it's "just milk", (3 oz of it in fact), but it is oh-so-much-more than that. So much more.

It was a moment when I had to decide if Asher was going to win this one or not. Was this the moment to allow him to voice his displeasure and say, "Oh, ok, you don't want to drink your milk. That's just fine." or was this the moment when I would have to say, "I know you don't want to drink your milk, but you're going to drink your milk." Sometimes it's hard to know which is the right decision, and you only have a fraction of a second to weigh your options. In my making my decision I had .08 seconds to decide if this was a situation that would repeat itself tomorrow. Yes, it was, so I had to set the bar now and not change my mind.  There probably isn't a right or wrong decision, but, once you make the decision, you MUST stick to it. "Follow through" is even more crucial now than with a child who's grown up with boundaries and limits. How did I know the situation would repeat itself?  Because dinner happens every night here, and the family rule is you drink your milk.

So Asher did what Asher does when he's afraid or doesn't know what to do. He Froze. I mean like a stone sculpture. (Axel does the same thing, though not anywhere near as much as he used to.) This is a safety reflex, kind of like the "Flight or fight"response, but "freeze" should be included in there. The freeze happens when a child is afraid of making a single move for fear of doing the wrong thing. It is a learned behavior, usually developed due to physical abuse. "If I don't move I won't do the wrong thing and might be safe."

Axel could hold the "freeze" for very long periods of time. Seriously, if we had a confrontation and I just walked away from him, allowing him to work through the issue on his own (which he sometimes needed to do) he would stand/sit/lean/half kneel in exactly the same position where he froze. Sometimes he needed to be left on his own to see that he COULD move and nothing bad would happen to him. Sometimes I would move him.

So Asher and his milk....

"Asher, you need to drink your milk."

Asher freezes with the straw 1/2 way to his mouth, staring straight ahead, mouth open READY for the straw, but the cup has stopped moving.

"Asher, put the straw in your mouth."

I guide the straw into his mouth, but his mouth remains slack, his eyes continue to stare straight ahead.

"Asher, close your mouth" (because it's on the straw now.)

He closes his mouth, eyes still staring forward.

"Asher, drink the milk."


"Asher drink the milk."


I remove Asher from the table to the quiet spot, but only for a few seconds. "Asher, we're going to sit at the table. You need to drink your milk."

We return to the table, Asher picks up his cup, puts the straw in his mouth and takes a sip. Dean cheers him on and he takes a couple more sips. I cheer him on and he stops.

Aaah...another twist. Another very common thing in the process of attachment. Rejecting the primary caregiver and doing pretty much anything the other parents wants them to do. The parent who is the primary caregiver is the one who deals with most of the discipline, and the other parent becomes the "savior" in the eyes of the child. When this becomes apparent, it's very important for the other parent to NOT take on the savior role and keep their expectations for the child where they are the rest of the day. Communication between the parents is crucial, deciding ahead of time (or taking a step out of the room for a quick pow-wow) what the expectations are going to be.

Do you see why I said this little event was multifaceted???? It's like someone could walk into my house and do a psychology study right in my dining room.

I removed Asher from the table again for about 30 seconds. This time when he came back he drank 1/2 the milk before I had him stop for a second, then he drank the rest. We had a party of course, cheering Asher for drinking his milk. I will place money on this exact same situation happening again tomorrow, Asher testing me to see if the rules today were the same as yesterday.

Yes, it seems militant sometimes. I think many adoptive parents of older kids will tell you people often say they're being too strict. I will say this: Wounded children need healing, and healing comes in many forms, spiritual, physical and psychological. Sometimes it's a hug, sometimes it's a prayer, sometimes it's learning that Mommies and Daddies are there for you no matter what, and sometimes it's learning that nothing bad will happen just because you were told to drink your milk.

Baby steps. Every day it's baby steps.


Hevel Cohen said...

It made me smile. Go, Asher, go!

Becca said...

Wow, this is so complicated, but so *perfect.* My husband works part time setting behavior modification plans in motion with the parents of children with behavior issues and special needs. He talks about a lot of things that remind me of this and all the details he has to ensure the parents are on the same page with. Not easy, but wow, it really works when it's put into practice properly.

I've said it before, but you guys are really awesome. I love reading about this. Your boys are really lucky to have such great parents who aren't willing to skip any of the steps in the process because it might be "easier."

Crystal said...

Oh my gosh, that milk incident sounds just like Kaylee. She did this for several weeks with fruits and vegetables, except, I had no idea what to do. She even did the freeze thing and refused to chew. And refused even more when I told her to chew. For her, the only thing that worked was to ignore it.