Friday, January 23, 2015

Lifers


Recently, a mom with several bio kids as well as several adopted kids asked me if I was a "lifer," meaning, did I plan to keep my children home with me for their entire lives. My answer is no. My plan is to teach my children to become responsible, contributing, independent adults who will one day strike out on their own and build a life for themselves, come by and visit, gather on holidays, perhaps marry and have kids, etc...

But what if a child never reaches that point of independence and self-care ability? There are group home options through many special needs programs. But what if your child doesn't qualify for intellectual impairment? Say there is one category where they come up below average in (below average is still in the average range) and it blows all qualification. Then what?

Today, I'm writing from a dark place. It's the place where, when I look at my kids, I see the profound damage that is the result of being neglected babies, left lying in cribs, never cuddled, never loved, poor nutrition, abuse, inappropriate exposures, lack of medical care, lack of education, and more, more things than I can ever even imagine. The adoption books, every single one I read, failed to convey, probably because the authors truly didn't experience or know, the extent and fullness of what it's like to live with children like these. These aren't children setting fires and torturing pets. These aren't bad children. Not at all. They are good children. Innocent children. Children deserving love and family. But these are profoundly damaged children and the results of that damage are staggering, never-ending, compounding, a bottomless pit of diagnosis waiting to be diagnosed.

For every accomplishment, every step of progress, another can of worms is opened because the progress should lead to one thing, yet it leads to another and what comes up is often harder than what we just went through. For example, it's not enough that a child can read if the child can't comprehend. Comprehension of words isn't enough if the child can't understand the meaning of the words when they are put together into sentences and paragraphs. This is beyond knowing a language, I'm talking about logic and reasoning. If you do this, this will happen, right? For these kids, it's not right. It's not even consistent. Do the same thing day in and day out and they still expect a different outcome each time, not even the same different outcome each time, but different ones each time. That, by Einstein's definition, is even beyond insanity.

Change one thing in the day, just one, like do PT after breakfast instead of before, and my kids are thrown into a tailspin of confusion that lasts all day. But they appear to function very well because they are polite in public and appear engaged. Appear. Give them multiple choice questions and they already have a percentage of success built in by the nature of multiple choice. Ask them to come up with an answer on their own and they can't - even when the answer is directly in front of them in white letters on a chalkboard and I keep pointing to it using very large gestures. They don't see body language. At all. After all this time home. I have a witness to this - finally!

Where is hope? Do I see it in the faces of my children? No. I did an experiment over this last month. Every time I saw a child out in public or at church, I engaged them with either a look or by talking to them. In every single case, I got more out of that child, a stranger, than my own children give. They understood a look and a communication exchange took place, there was engagement. They conversed, answered and asked questions, even 2-3 year-olds! Toward the end of the experiment, I asked my children to observe what I was doing. They were amazed, or at least appeared to be. We also watched online videos of children receiving bicycles under the Christmas tree so they could see what a normal reaction should be. Again, they appeared to be surprised.

So, where is the hope? Is there any? Of course there is. I believe in Christ, therefore there is always hope. It is not my place to give up. I don't know what I'm going to do. Yet. But I'm not going to give up. Meanwhile, I'm nixing everything that isn't helping, from any type of therapy that doesn't show results or isn't more than what I'm already doing at home to useless check-ups and tests that won't change the course of treatment regardless of results. To quote a title of a book, "You're either in or you're in my way."

And if anyone wants to tell me this is what I "signed up for" when I adopted, or that this is "normal," save it, stuff it, choke on it. I don't want to hear it. It's definitely not what I signed up for. It's definitely not normal. But it is now my life and I am mother to these girls and that's not going to change. This is parenting in the trenches and I've recently discovered that I'm not the only one using that term. In fact, I'm in good company with a large majority of moms raising children just like mine. HERE is a link to the best article I've read so far on this subject. Unless you've lived it, you just DON'T KNOW and CAN'T EVEN COME CLOSE TO IMAGINING what it's like. You don't have a right to judge me, but your support of me in my efforts to be the best mom I can for my girls would be very welcome.

9 comments:

Renate Jackson said...

I can't imagine what you are going thru. You are right,all we see is beautiful children. I know you are doing everything you can. I pray you find some way to reach them.

Karen said...
This comment has been removed by the author.
goodiego said...

You are doing a great job, you get it. You are spot on when you say you should drop the things that don't work for you. Find what works best for your family. Make that your new mantra: "This is what works for us." It is hard to find the courage to tell folks that, especially when things that work for your family are not the norm for everyone else. Continue to always think outside the box when it comes to your girls. That is the best thing I think you have always done for them.

My second favorite mantra: "Consistency is Key". It took them years to become the girls they were when you met them, it will take a long time to lay new tracks down.
I think they do need to know what to expect next in order for their brain to be able to notice other things and learn about the other stuff going on. If they are always wondering what is coming next it gets in the way of noticing what you and I think are no-brainers. For example, once when DD was struggling with simple math facts (we were in talks with her 2nd grade teacher deciding if she should be left back or not) DD told me her brain was too busy just trying to learn how to be a girl in a family. I am happy to say she is now an awesome quirky daughter, thriving in 8th grade.

Thank you for always being so truthful. I really appreciate your blog. For what it's worth, I found DD learned a lot from movies and tv characters. She was able to observe normal interactions between people and learn from them. She will still watch some "baby" shows even now as a teenager. Watching tv or movies was a safe way for her to figure some social cues out, it's observing without being excluded. We watch together and talk about it too.

You have a beautiful family.

Anonymous said...

Hang in there. I can't say it will get better because I don't know. But you have some great support from those of us who follow your blog. Keep your chin up! I don't know if you have support from your church or friends, but know you have it here.

Anonymous said...

Is your youngest daughter struggling too?

Anonymous said...

You are going way beyond what many people will do for their children. You are a good and caring mom. I have commented here many times because I have adopted children similar to yours in many ways, and I appreciate and support your struggle. The only difference is that I have been doing it about 10 years longer. So I want to be sure to let you know that you are not crazy or judgmental or overreacting to what you are seeing. So many families struggle like we do, but fewer are families formed by single moms like us who wind up receiving at least 3 children with these damaging issues. Not severe attachment or RAD issues; long term neglect issues. Sometimes I ask God what He was thinking when He put us all together. But I know in my heart that He knows exactly why He designed my family the way He did.

One good outcome for me has been that my expectations have changed. Not just for my children, but for our lives in general. I used to run with the idea that my children would excel eventually and have a "good standard of living" in the American landscape. Ha! I bought into thinking that was flawed without even knowing it.

From watching my children "fail to achieve" I've learned from them that it is a blessing to be content without striving, to be happy just because they have everything they need, it's wonderful to automatically like everyone they meet because they don't have the ability to judge others, to forgive and not hold a grudge against anybody who tries to make up with them, to have their needs met easily because their expectations are so ridiculously reasonable. These are characteristics that we "thinking" people don't possess because of our complicated thinking processes.

You children will have good lives no matter where they end up because you will make sure of that. They will be content and they will be happy. It may not look like everybody else out there, but they won't care about that. They care about the moment they are in.

They will bless you in many ways. Even though you will live with much work and heartache. It is all okay. Because it is all okay with the One who created them. He loves the way you love them. God job, mom!

Penny said...

K, please look into www.integratedlistening.com . This is a therapy that will actually help to re-wire your kids' brains and build new connections. As a mom with SN kids they would allow you to take the training and you can then buy the equipment administer the therapy yourself.
You are an amazing mom!

sammmomtoliv said...

We have some similar issues with our 8 year old son - adopted at age 7. Socially, he is awkward. When we go out of the house, suddenly his body becomes limp and he leans on me as we walk, or even falls on the ground. He won't look people in the eye or talk when spoken to -- OR conversely, he talks to strangers loudly and out of context. And, academically, something is just off. He can learn a concept really well but then cannot transfer it or generalize on it. If he learns "2 +3" on a flashcard, that does not translate to the same problem in a workbook, or a word problem that i say out loud. I feel frustrated on one hand, but I am also accepting that this is just where he is. I can't do much more than I already am (believe me, we try a lot!). It helps that we have a few 'typically developing' kids, so he has models for behavior especially. But even our son adopted at 22 months has many issues. I real see it as brain damage. Not in the way we usually think of the term, but institutionalizing babies and traumatizing them the way the Chinese medical community does (the treatment can be just brutal and totally ignores children's emotional needs) has its affects. For life.

So sorry for all of your struggles. I am praying for your family.

Anonymous said...

Hang in there Mama, take it one day at a time. You are doing an incredible job and naysayers have no place in your life!