When your child is a burden...

After three years our Max has racked up enough “serious” diagnosis that we can comfortably say that he will probably need some sort of assistance well into adulthood. Maybe forever. Only time will tell exactly how independent he can be, but we have low expectations. In the three years since he was adopted, our little guy has progressed one year academically. At nearly 11 years old, he reads, speaks and writes like a six year old.

Which leads me to reexamine my personal views on what it means to be tied indefinitely to someone with special needs. I’ve been thinking about this a lot this week. How I used to view families in my situation, and I keep coming back to the same word.

Pity.

I used to pity those families. The families that have little to no hope for one of their own. For how devastated they must have been each time bad news came in. As they watched their bar of expectations sink lower and lower, until they finally stopped expecting things from their child. When they finally realized their loved one would never be much more than a burden to the rest of us.

So if you’ve ever thought that about my situation, stop. Right now. I don’t want your pity.

Here’s why.

In the past when I felt pity for another family with a special child, it was because I personally didn’t recognize that special child as holding the same value as a typical developing child. Like he was a lower class citizen because he would never be on the same playing field as the typical kids. Clearly being burdened with a lower class citizen is a reason to be pitied. Right?

Then that burden became my child. That lower class citizen became a member of my family. And my perception changed. Imagine that.

How could I possibly have held someone else’s special kids to a lower value? How am I ever going to say to myself that one of my children is worth more than another? Because one will excel and the other won’t?

What are you thinking woman? It’s never ok to evaluate another person’s worth for any reason. Ever. Sweet Jesus you’d think I’d know that by now.

Having a special kid isn’t devastating. It’s not a burden. It’s really just sort of normal. It’s different, yes. But you learn. As with anything you fall into a rhythm. A routine.

And our situation is different anyway. While it is true Max is adopted, it should also be remembered that we didn’t adopt a special needs child on purpose. We knew Max before we made our decision to include him in our family. We thought he was a normal kid.

Would our situation have changed if we’d had an accurate list of diagnosis before we signed up? Maybe. But I’m not going to dwell there. Because you don’t get to pick whether your children are healthy or not. The end.

So do I know what the plan is for Max? No. Is my plan to bend over backwards to get him the best education he can get to maybe eek out another IQ point. Not really. I’m sort of ok with the idea of having a son who stays six for the rest of his life. Because in the end it doesn’t really matter.   

If we hadn’t spoken for him he would have been cast out on the street at the age of 18 with all the others. Aside from the fact that he now has parents who'll fight for him; being an American citizen qualifies him for so much more assistance than he ever would have gotten if he’d stayed in Russia. My son is not going to die on the street alone and afraid because there was no one to help him.

So really, it doesn’t matter what the plan is. My kid has already beaten the odds.

Update on Max

A lot of you have been following Max’s story. He’s our youngest son, adopted from Russia three years ago at the age of seven.

Our first year with him was rough. Really rough. Like 2 hours of Max screaming on the floor every day rough. It’s funny to think back on my approach during this first year. How I parented him the way I parented my other children, even though I knew he was a totally different can of worms. How I wish I could go back to that mama and show her exactly what she was doing wrong. Because she was doing it all wrong.  

Our second year was better. We had a team of specialists hop on board to help us make sense out of this kid’s quirks. We were able to get some diagnosis that made a big difference in how we responded to him.

So now we’re at year three. And I feel like we’re settling in. At year three it’s not so much about standing our ground against the endless meltdowns or figuring out why we were having so much difficulty getting this kid to do anything. This year we can be more about pushing the boundaries that we’ve clearly established. Figuring out which boundaries are safe to push on and which are not. Which boundaries may never be ok to push on.

We don’t know what the future holds for this special boy. We don’t know that he will ever be able to set out on his own, fully independent from his parents and siblings. He may always need someone by his side ready to step in when his boundaries get pushed the wrong way. That’s ok.

11 years in - part B

Dear Louisa,

My funny, funny girl. You were the one who played pranks on us as an infant and at 11 years old you are still finding ways to make us laugh. You definitely have your father’s sense of humor and love to bring the funny. We love that. We need that.

Neither you nor your sister wanted to receive any gifts for your birthday this year. The only thing either of you really wanted was to have a friend spend the night without the boys around to bug you. Can’t blame you.

So, 11 is rough. I’m definitely getting the “tween” vibe from you and your sister. Caught in a place between wanting cute little stuffed animals on your dresser, but not really wanting to sit at the kids table any more. I definitely see you and your sister heading into new territory, but it isn’t necessarily the same territory as other girls your age. Which is good. I like where you’re going. Let’s stay on the path we’re on. Please.

As you are struggling towards independence I am constantly reevaluating my approach to parenting you. You are pulling away just a bit. Wanting to be more independent. Which is super. I want that too. You make good choices and I want you to have experience figuring out what you want for yourself.  

I want you to take the lead these next few years. I want you to take my hand and show me the path that God has planned for you. Maintaining common ground with you is such a high priority to me, but I don’t want to be the one who decides what our common ground is. I want you to pick the restaurant. I want you to pick the show on Netflix. I want you to think about what I might like when you make these little decisions about what we do with our free time, but ultimately pick the thing you want. Don’t let me decide what you want.

 What I want most is to be able to support you in these tiny decisions now, so that when the decisions get a little bigger you’ll let me support you with those too.

You are smart, clever and funny. You are one of my closest friends.

Love you much,

Mom

11 years old, part A

Dear Annie

When I sit down every year to write your birthday letter I always struggle to find the words to tell you how great I think you are. This year isn’t much different. But if I had to pick a word for you, I’d pick joy. You’re just a joy to have, a joy to parent, and a joy to be friends with.

This year our relationship has started the gentle shift towards independence. We are starting to give you more freedom and respecting your decisions. Because my darling, you make good choices. And they are worthy of our respect.

You’re a complete workhorse when it comes to your school. You consistently go above and beyond what is asked of you, completing extra work just for the fun of it. You are starting to like Math more these days, but almost always have a book (or three) in your hand. Just in case.

You received a sewing machine this year and took to it right away. You love figuring out how to engineer the design you have in your head. Like your mother, you have no real use for patterns, or trying to make something specific according to someone else’s direction. And I love that. Learn how to make things up as you go. Adapt. Enjoy the process. Don’t worry about having the perfect finished product. These skills will serve you well in life.

Love you,

Mom

the expectation gap...

So last week I shared a bit with you about how we were willing to face multiple layers of disaster in the name of obedience in relation to our housing situation. And the elation we felt when the situation worked itself out in our favor; even though the results weren’t exactly what we were hoping for.

But that sense of elation only lasted a short while before reality crashed back in. Not so much that I was unhappy about staying in our house, but more like feeling that God promised me one thing and delivered something else.

And here I am, staring down a gigantic chasm. A chasm spanning the gap between my God honoring expectation, and the reality of my life experience.

So what then? What happens when you go out a limb and dare to believe that God has made you a specific promise, and you pray circles around that promise, attacking it from each side, just so you make sure that you really understand all the ramifications that come with it. And it’s not all some fantastic daydream that your entitled suburban heart just wants to believe.

And it isn’t indigestion either.

What happens when you’re embarrassed when your friends ask about it, and praying about it is too hard. So you just pretend that you’re still elated. But really you’re confused, and tempted to think that God is the world’s biggest scam artist.

This isn’t the place where you throw some well worn cliché like everything happens for a reason. Because that’s just dumb. And it doesn’t fix anything.

This is the place where you make a decision.

Is my faith strong enough to get through this little quandary, or is this God thing some sort of elaborate joke.

I think God drops these circumstances on us just to see what we'll do. To see if we really mean it when we say we're in this relationship, no matter what.

 Or if we really just came to Him for a handout.

 If He sends us away empty handed the first time, will we have the faith to come back again. Will we come back a second, third or millionth time without a guarantee that we'll get what He promised us in the beginning.

And even if we never get what we originally wanted, will we still love Him anyway.

So I don’t know what is in store for our family in the future. I don’t know if we’ll decide to pursue a new house in the spring, or hold off for another year or two.

What does matter is that I’ve breached the expectation gap with my faith intact. And if I’ve done it once I can do it twice. I can continue to ask for things and know that the world isn’t ending when I don’t get them.

Staring down Tsunamis

You may or may not have been following the housing saga that our family embarked in last summer. If not, let me just summarize by saying it was three months full of wave after wave of the uncertainty of transition.

Leading up to the anticlimactic day that we decided to take our house off the market. But even after we made that decision, God had one last crushing wave to drop on us, just to see how we would respond.

Two weeks after we made that decision we received a very respectable offer. Two weeks after we decided the promise of transition was no longer worth the emotional uncertainty. Two weeks after we said ain’t nobody got time for this amount of crazy.

Two weeks after school started and fall activities caused my schedule to implode. And there was nothing on the market we wanted to look at, which meant that accepting the offer might have led our family into a season of homelessness; a season of perpetual transition without a clear finish line.

But in my heart, refusing the offer would have been an act of disobedience.

Saying yes = homelessness. Saying no = disobedience.

So here I am, staring down this wall of water that is going to crush me no matter what I do. If I stay, I get soaked. If I run, I get soaked. Either way, something bad about to happen.

So we accepted the offer. Accepted the fact that Jesus might want us to celebrate Christmas in a hotel room. Accepted the fact that our special needs child might be out of school for a month and therefore a hot mess-screaming disaster for at least two months. And even better, that our special little boy who spent 7 years of his life being homeless was about to be homeless again. If this is where our obedience leads us, so be it. SO BE IT.

We marched right up to that tsunami of potential disaster and laughed in the face of its threats. Oh yes we did.

And then the annoying buyer backed out.

I have never been so thrilled to not get what I wanted.

Survival of the most persistant

So I wrote a book, the title is Dissident. There’s so much to tell you. I don’t even know where to start. How about publishing. I had no idea what I was really getting myself into when I opened that word doc nearly two years ago.

To get a book in print, it’s best to go through an agent. At least for your first book. Querying agent after agent to see who is willing to represent it. This agent will find a publisher who will buy it and turn it into something amazing that people will buy.

And you can guess what happens when you’re an invisible first time author trying to get attention in a sea of others just like you. An endless parade of rejection letters. Or worse, just being ignored. I read somewhere that you should expect to be rejected (or ignored) 100 times before you find someone willing to take you seriously.

Not sure how true that is. But it was scare me away from the profession for a long time. Talk about a colossal waste of time.

But I also read that those who make it in the industry aren’t necessarily the ones with talent. This profession is all about survival of the most persistent.  Or in my case, relentless.

So at this date, I think I’m about a third of the way to my goal of querying 100 different agencies. After about the first ten it became a game of cut and paste. Each agent wants something just a bit different, but really it’s all the same. The same questions asked in a different order. Cut. Paste. Send. Next email.

Except for the guy who asked me what other ideas I had. Which made me laugh. Because he doesn’t realize that I have well organized outlines for about 10 more books on my computer waiting for my attention, and about 100 loose threads that are waiting in the corners of my mind for their turn to be woven into something that makes sense. And beyond that there’s a slush pile of random story elements that could be something. Someday. So we’ll just put the lid back on that can of worms and move on.

Survival of the persistent I tell you. Someone has to tell all these stories.  Make sense out of these pieces. I guess it's going to have to be me.

I’ll keep you posted.