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.

The big D (disabled, that is)

When we adopted two years ago we thought we were taking on a (mostly) healthy seven year old, who was only a bit vertically challenged. As in, he might look like a five year old, but his behavior and cognitive function were mostly on target for his age range, if you give him a bit of extra leeway to account for his traumatic social history.

The last two years have been a humbling process as we have been handed diagnosis after diagnosis telling us what was evident right after we took custody. That our little guy wasn’t nearly as healthy or mentally stable as the Russian paperwork made him sound.

You’d think it would get easier after a spell, that you’d develop a thicker skin each time you accept a new name for a set of personality quirks; a label that helps professionals know how to approach your child. A special set of words that opens doors to extra assistance because your kid is qualified.

But it doesn’t. 

Each one comes like a swift kick in the gut. A chink in your armor. And the latest one isn’t any different.

Our paperwork is back, the board of disabilities has taken my son into their database. My son is officially disabled.

Disabled.

It is so easy to park myself on that word. To feel overwhelmed by its implications. To be not quite ready to call myself the parent of a disabled child (even though I embraced the roll a long time ago). To be emotionally blinded by a label that doesn’t change my child in the slightest bit.

And how weird it is that the only thing that this emotionally charged label really changes is how my son’s needs impact our finances. How many services that used to cost us money will now be provided free of charge because he owns a different word. A word that makes him qualified for government assistance.

Disabled. Such a bittersweet word.

This side of 2 years

So we commented a while back on the 2 year milestone we passed as a family of six. I thought you might find it interesting to note that as of this month, Max has been with us longer than any other set of care providers in his short little life.

We just passed Orphanage # 3 as his longest running source of food and stability. The orphanage he was in when we met him, his third of four that he called home during the seven years he lived in Russia. We think we counted as many as seven sets of Russian care providers who housed him, making us his eighth set. But who knows how many people cared for him off of his official record. Strangers who passed him on the street and turned a kind eye toward him for just a moment. People who played their own little part in keeping him alive until our names were called.

First off we’d just like to tip our hats to all those who came before us, surely God has raised a community to shelter this child. Two really, his first in Russia, and his new found one here in America. To you we say “thanks for doing what you could for our son”.

Secondly we can only wonder if our heroic milestone means anything to him at all. We’d like to think that we’ve proved ourselves trustworthy by now. We’d like to think he knows he no longer has any reason to fear rejection. That he no longer thinks we’re just a stepping stone in his path towards a “real family”. That we aren’t going to give up on him and send him away. That whether he likes it or not, he really is stuck with us until we all go see Jesus face to face.

These are the truths that I’ve been begging him to accept since the beginning. Truths he hasn’t yet been able to process.  Truths he may not be able to process for some time to come.

But truths we will continue to pray over him as we ask God for a revelation on our son’s behalf. Please God show what a family really is. And help him to forgive those who’ve failed him in the past.

2 years in...

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As Thanksgiving approaches we pause to remember a pivotal date in our family history. On the 23^rd of this month we will celebrate the second anniversary of our homecoming with little Max. The day we landed in the Detroit airport, weary and exhausted from nearly 24 hours of traveling with a terrified seven year old who didn’t speak English.

The day I finally let my guard down because I knew that the Russian’s could no longer state claim over what was rightfully mine. No long lost relative could spot us in a Russian alleyway and drag Max away from us, into the undergrowth causing him to disappear forever. The day that no Russian official could claim that my E’s looked a little too much like A’s and throw a year’s worth of paperwork into the trash. Condemning my son to a longer sentence of time away from the ones who loved him enough to fight for him.

How on that day, I thought I’d won the battle.  But little did I know that the battle had really just begun. That removing my son from the terrifying environment of a Russian orphanage would do so little to calm the fear that threatened his fragile heart, and that I would have to fight tooth and nail for an entire first year (and then some) as we continued to prove ourselves trustworthy and loyal.

And the big, scary decisions we would have to make about schooling and medication to get this kid to calm down enough for us to figure out what he was so afraid of all the time. Decisions I never thought we would have to make over one of our children. But so grateful that God gave us the courage to do so.

And I still feel like I’m peeling back the layers of this gift that God has dropped into my life. And how his adoption wasn’t nearly as much about my “rescuing” a boy from certain doom, as it was about him teaching me about what’s really happening outside my happy little homeschooling bubble. That pain, heartbreak, and courage aren’t just noble concepts to read about, but raw, life changing emotions that real people struggle with on a daily basis.

And traumatic social histories aren’t things to be cured in a day’s time. Or a month. Or a year.

And so we travel forward, bolstered with another year’s experience, another year stronger. Into what? God can only tell what the future holds for my special boy. I can only wonder what lessons he will teach us without even knowing it.

Maybe this year he’ll be brave enough to look at the pictures and remember where he’s come from. Maybe it’s still too early. I’ll let you know how it goes.

Thanks for following our journey…

(nearly) wordless wednesday

He's one less. 

The orphan epidemic can no longer claim my son...

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Kicking "crazy brain" to the curb

So since most of you are not currently raising a child with a traumatic social history and extreme anxiety levels let me just give you a peek into what my normal getting ready for school routine looked like a month ago.

8:15 Wake Max up and mention that he needs to eat breakfast before school. Upon which the boy happily saunters to the kitchen table, because he loves school and can’t really wait to get back to his happy place full of people who are paid (not nearly enough money) to pay attention to him all day long.

8:16 Max sits down to a nice big bowl of cereal, usually made by Mama. Even though the boy is 9 and perfectly capable of making his own cereal. But that’s beside the point.

8:20 Mom reminds Max that eating breakfast entails picking up a spoon full of food and putting it in his mouth. Because he hasn’t done that yet.

8:25 Mom gives up and sets the 10 minute timer. The boy is 3 bites into his cereal, still in his pajamas and no meds in the system. And Mama is ready to get this show on the road already.

At which point the boy freaks out because he’s afraid of being late.

Now you’d think the boy who’s freaked out about being late would A) eat his breakfast, B) get dressed quickly, and C) make sure those meds that help him not freak out so much go into his system.

But you’d be wrong.

What does the freaked out boy do? He hides under the table. He lies on the floor and screams. He’s even been known to bang his head repeatedly on the (really hard wooden) floor on the mornings where he’s really upset.

Because these are the things that a stressed out, about to be late (again) Mama really needs to have happen.

A normal school day usually entailed my son showing up in the parking lot (5 minutes late) without shoes on, with a Tupperware full of soggy cereal, and a tiny container of meds. Because asking him to do 4 very simple tasks in 30 minutes was just too much for him.

This is not the point of the story where you offer your sympathy or suggestions for improving our morning routine. I tell you all this so you can rejoice with me at what I’m about to say.

There are new meds in my boys system. And they are wonder drugs.

The anxiety drugs weren’t enough, we added an antipsychotic to his daily routine.

And before you freak out because my boy is on an antipsychotic med, let me tell you what our new normal is.

Max gets himself up, makes his own breakfast, eats the breakfast, asks for his meds and takes them, and gets himself dressed with shoes before Mama even sets the timer. There may be a few screams in there, but not enough to write home about.

And the part that nearly made me cry in the drop off line yesterday: the boy (who used to be physically removed from the car most mornings) gets out and walks to his teachers without their assistance.

People. Are you singing the praises of these meds yet? Because my baby got out of the car All. By. Himself.

For too long my son has been trapped by a suffocating amount of crazy, unable to perform basic morning tasks. Praise God for meds that help him cut through his personal prison and allow him to function like a normal nine year old. Meds that let him think about something besides his personal demons. Meds that will surely rewrite the course of his future, and allow him greater opportunity for independence as he grows.

And thank God he can be in surrounded by a loving network of family and friends who are willing embrace these scary sounding drugs as a part of his new “normal”. How much easier is it going to be for him to function as an adult knowing that he doesn’t have to live with the craziness that could blind him every morning. That there’s no shame in taking a strong medication in order to have a calm brain?

So for our family, a big fat YEA for Risperidone.

Raising a beggar, part 2

We’ve talked before about my Russian born son and his behavioral quirks that come from living on the streets and in an orphanage for his first seven years. We know he is intimately acquainted with the desperation that drives individuals to seek handouts from both strangers and friends.


While mostly a ghost of his past, the fears that cause these beggar tendencies still surface from time to time like I talked about here. We’ve learned a few coping mechanisms to help him feel more secure and not feel the need to ask strangers for candy or money.

So he’s mostly ok with not being a beggar anymore.

But then there’s the reality that other people in our world still face desperate circumstances that cause them to do whatever it takes to survive.

Like that pan handler on the busy street corner we drive past on a regular basis. The one I never stop to give a handout to.

The other afternoon little Max and I were out cruising around town in our little white minivan when we pulled up to that intersection. The one our resident beggar hangs out on, and Max asked me why he was there and what the words on his sign meant.

I wasn’t quite sure how to respond. Was this a time to learn the meaning behind responsible compassion? For him to hear the truth that this man didn’t need my money as much as he needed a job that helped him feel like he was contributing to the good of mankind?

As much as I wanted to explain the truth that I need to careful about who I financially assist I don’t want him to think that there are some people who aren’t worth helping. I also want to fully respect his social history and the fact that he can relate to that man’s desperation. I didn't want him to be ashamed of his past behavior, when we know he was simply trying to survive. That it wasn’t his fault his first set of caregivers didn’t provide for his basic needs.

And as I'm digging through my thoughts on how to approach this "teachable moment" for my son the reality hits me that perhaps God arranged this exchange to be a teachable moment for me. What if God gave my son the social history He did because He wants Max to understand the desperation of others, with resources to do something about it. That He wants my Max to be generous to a fault so that others don’t have to face the desperation that he’s known. And in doing so push my boundaries of acceptable levels of charity.

Sweet Jesus thank you for bringing a representative of the world’s desperation into my house. I want to give with reckless abandon in my best effort to curb other people’s acts of desperation. Show me the best way to use my resources. Amen.

We bleed chlorine

From where I sit in my little deck chair, I see the head tops of three Peterson children all gleefully bouncing around a shimmery blue swimming pool. I hear the loud spr-oing of the diving board as child number four does his umpteenth cannonball off the diving board.

And for a moment I allow myself to reminisce of days past when I was a little bouncing head, joyfully bobbing around the pool. Day in and day out, I was in the neighborhood pool across from my parents house. More days than not, all summer long.

As I sit here, all grown up, watching the children from my perch underneath the shade tree, as I’ve done just about every day this week, I think a bit deeper about this thing I call the pool.

I’ve always been the happy pool mama with wet towels flung all over the back seat, the mama who felt more alive wearing a slightly damp suit as she cooked her evening meal. The mama who gets a kick out of smelling chlorine on her clothes.

But as much as I’ve loved having access to a pool for my three healthier kids, I so totally love having it readily available for my special boy. My boy who doesn’t transition well. My boy who freaks out when things are a bit different than usual.

Greater joy has no mama than this chlorine junkie mama when the special boy hollers “POOL TIME!” as he approaches the car during the school pick up line.

Yes, little boy it’s pool time.

Go splash your worries away until your insides stop aching. Go pound your frustrations into the diving board. Be free for just a bit until you really do have to conform to Mama’s standard of living.

Let the pool be your constant companion. As you grow into your own skin realize what a healthy coping mechanism you’ve stumbled upon. Develop an addiction to chlorine. You need the pool and the sooner you realize how much the pool helps you the better off you are.