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.

The day I didn't stab my eyeballs out.

As it was for many mid-western families, it's been a long month in the ol' Peterson abode. The kind that makes you want to stab your eyeballs out with a fork.

For those of you who aren't midwesterners, here's the scene: It's the tail end of a very long Christmas vacation, and a crazy snowpocolypse / polar vortex plops itself over your house. For four days the roads were closed to all unnecessary travel, leaving us trapped at home for way longer than any sane family should stay in close proximity.
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Did you catch that? 5,760 minutes. In my tiny house. With my family of six. Which yes, includes a special little boy who doesn't like it when you mess with his schedule. At all.

And I can't even send the kids out to play in that lovely winter wonderland, cause it's like -30*.

And my three homeschoolers still have school work to do, so they are not free to play with that bored, off kilter rascal who would rather lay on the floor and scream for an hour than pick up a toy to play by himself for fifteen minutes.

Eye roll.

So when I say it's been a stressful month, you can nod and smile and say "bless your sweet heart," when I confess that I actually drugged my youngest nine year old to get him to sit and watch a movie for an hour so I could think. Don't laugh. My doctor told me I could.

And I'll let you guess just how whiny and desperate my prayers sounded during those rough moments. Those moments where stabbing my eyeballs out sounded like a very good idea. Have you been there? Please say yes.

But as we all know, those are the moments where God comes closest, and this time was no different. I think I was on day three of my imprisonment when He interrupted my crazy stream of whining to ask me this:

Do you want Me to change the situation, or do you want Me to change YOU?

And in my finite human wisdom I countered with: Do you want me to answer that like an overly stressed out human being, or do you want me to answer it like a child of God? Because to be honest, right now I just want You to change the situation.

Which of course He didn't.The winds kept blowing, and the cranky boy stayed cranky.

He changed me. By the grace of God I didn't stab my eyeballs out. Nor did I feed my children to the snow drifts. I took it one moment at a time. And we got through it.

I'll bet you saw that one coming.

No thanks. I’m good.

Today I’m thinking about the things I do without. The things in my life that I may or may not ever get. Things that I’ve prayed over enough that the idea of praying for them a bit longer sort of feels like a kick in the gut.

Some people ache to hold a baby of their own. Some just want an honest job.

There are things that we all want so deeply; that we ache for so profoundly, that it hurts to consider discussing the desires with the general public.

And it’s really hard to admit to you that I too have cries that have gone unanswered. If only I could have a son who functions like a healthy nine year old, and a house large enough to contain my growing family. (Not a McMansion. Please, you should know me better than that. Just something where we aren’t tripping over each other anymore would be really great. And enough land that my neighbors won’t hear the screams of my trauma boy and alert the authorities because he’s decided that having to put on shoes is so unfair that he needs to raise a ruckus like he’s fighting for his life. Again. Eye roll.)

These are noble, justifiable requests, are they not? I like to think they are. Definitely worthy of divine intervention if you should ask me.

But these requests, and a handful of others are just desires that I’ve sort of resigned myself to just accepting as “no’s”. And the idea that continuing to ask for such things is mostly just folly. A waste of breath. So instead I channel my efforts into changing my heart. To curbing my own desires to a point where I am almost convinced I don’t really want them. Let alone need them.

No thanks Jesus. I’m good. Really.  It’s ok. Just go listen to someone else’s needs, I’ll shoulder on with my life as it is.

Sounds funny when I say it out loud, doesn’t it?

I’ll bet you’ve heard your heart whisper the same things. At least I hope you have. Cause otherwise I’d sort of feel like the only person on the planet who asks God for crazy things.

And we all know how I feel about asking God for crazy things. This little bloggity sort of acts like a museum for me to show off the crazy things that I’ve asked for and actually received a Yes. And if my life isn’t enough to prove that I serve a God who delights in the impossible, then just pick up your Bible. It’s so full of people who have asked for and received crazy things that I can’t even begin to count their numbers.

So whether my very noble sounding requests (and the less than noble requests that I am not about to share with you) ever receive a Yes or not isn’t really the point. The point is that I have the guts to keep asking for them. And to remember and believe that my God can do whatever He wants, whenever He wants.

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.

Sometimes the answer is no. Get over it.

Today I'm sharing a post with you that I wrote for my fellow adoptive mama Erin Martin,who writes at God has answered...

My little boy, he’s a bit on the special needs side. A colorful social history from before he joined our family has created an odd mix of developmental delay, behavior issues, and just plain weirdness. But he makes my world pulse with life that I didn’t know existed before he came along. He brings such a picture of faith to my line of vision. And being the dork that I am, I feel the need to share such stories with you. Like this one.

So here’s the scene.

Mom and Max bopping along in the minivan on our way to school. Aka Max’s happy place. And the rather petite nine year old is the picture of calm in his little toddler safety seat, looking at a Calvin and Hobbes comic book.

Mom suddenly remembers that she hasn’t brushed her teeth yet (oops) and reaches down for her not so secret stash of mints.

The reality of which doesn’t escape the extremely observant boy in the back. Who also wants a mint.

But he hates these mints, and it usually takes him about 30 seconds of sucking to remember that truth.

There's a life lesson in this. I promise. But you'll have to go here to find that nugget of truth... 

Maybe the sun WILL come out…

My youngest.

He kills me.

He loves his school, we all know that. The first words out of his mouth each morning, before his eyes are even open, are about his beloved school. He loves it. The boy lives, eats and breathes school. Which we all love.

So one would expect a boy who’s on his way to his happy place to be the picture of enthusiasm and joy. Right? Not so much. Well, almost never. Most days see me walking my boy through the process of getting ready for school, with a little too much support. Ok, way too much support.

More days than not, my very physically capable nine year old not only needs me to pick out his clothes, but also get him dressed, wiggly toddler style. Bless his teachers who don’t blink an eye when I hand them his shoes, meds, and soggy cereal that were just a little too much to handle, and not really worth starting a war over.

With that in mind, when a morning starts with a bright eyed boy who comes to the kitchen on his own, finishes the breakfast that mom made without a fight, and goes to find something to wear with minimal prompting you can bet this mama having her own personal dance party in a private corner of her brain.

Because the boy found something to wear. Without playing the wiggly toddler game that hates.

And the BOY. GOT. DRESSED.

Did you get that my people?

And hope dares to invade.

Perhaps we’re beginning to see the fruit of our labor. All the hours of wrestling the boy into submission. The countless second chances we’ve given him to get it right. The untold fears we’ve calmed with our consistent and predictable behavior.

Perhaps we’ve stumbled on the proper combination of medication, attachment practice, self soothing practice, and so forth.

Or perhaps it will all hit the fan halfway to school. And my boy will show up worn out from screaming for a good 10 minutes of the trip.

But today there is no soggy cereal dripping all over my kitchen table from a boy who waited for his chance to create chaos when Mom wasn’t looking.

And today my boy said “Mom are you ok?” after accidentally bumping into me. (Ok, he did panic for about 30 seconds before he was able to make that verbalization, but the fact that he did make it is a huge victory for him)

Wanna celebrate with me? There’s a party in the back of my brain.

An ode to special needs teachers.

As I sit here, listening to my very special, but very cranky - off kilter boy, my boy who’s voice is hoarse because of all the screaming he’s done this week; I can’t help but count the moments until extended school year starts next week.


And my son can go back to his happy place where he can be with the people who know how he rolls. The teachers who are not paid nearly enough money to deal with his incessant questions, toddler tantrums, and old fashioned fear-based defiance.

To those professionals who probably get just as frustrated with my child as we do, but never let it show, we would just like to say thank you.

Thank you for not calling me to complain when my son is very difficult. Thank you for greeting him each day with a smile and a hug. Thanks for working your little magic to make progress in the areas where I have failed time and time again.

And most of all, thank you for not giving up on my son, or letting me give up on him when I’ve been really really tempted.

You are miracle workers. Your skills make me want to sing a hopeful song and tap dance across the stage. There is a special place for you in heaven with long flowering robes, and children who don’t scream.

You are a special breed to be sure. The parents of your special students owe you a great deal. We know full well we can never repay you for the kindness you have bestowed upon our families. So on behalf of special needs Mamas everywhere, I’d just like to say thanks for your service.

Guest post: My child is a screamer.

I have a few words to share with my fellow Mamas at the (in)able & (in)courage blog today about being the adoptive mother to a special little boy. Here's a preview:

It’s not clear exactly what happened to our youngest son before he joined our family, but a special recipe of neglect, trauma and abuse has left our nine year old functioning at the developmental level of a four year old, both cognitively and socially. He doesn’t do crowds, he doesn’t do stores, and he doesn’t like it when life deviates from his picture schedule.
As his adoptive mother I’m new to this whole world of special needs parenting. It took me longer than I’d like to admit to figure out that my new son’s temper tantrums were fear based, not orneriness. I’m still sort of trying to figure out what will send my son into panic mode. It’d be so much nicer if my son would come to me 10 minutes before he had a meltdown to tell me “Mother, I’m simply over stimulated by the options at the grocery store today. If you would like to avoid having me throw bananas at you, you’d be wise to take me home soon.”
Yeah, that doesn’t happen.

So what happens when my son does start throwing produce at me? And what do we all have to learn from these delightful little exchanges? Read the rest here 

Not so summer lovin.

This spring life has returned to our house. After months and months of struggling to keep the members of our household safe and calm, our decision to stop homeschooling and enroll Max in his little school has allowed life to flourish in our house once more. Life in the form of creatively empowered homeschooling for the other kids and a Mama who could remember the joys of stringing words into coherent sentences. And it has been so blissful.


And like so many other good things, we knew it would our blissful life would eventually come to an end. In other words, summer vacation. As our friends have been gleefully counting down to the end of their captivity, my homeschooled children and I have been dreading it. For us it means dropping everything to tend to our colicky nine year old. It means hunkering down to weather the storm. It means the end of creative pursuits and the return to survival mode.

But it’s more than that. If it were only about our own needs for sanity we could do it. I think.

Unfortunately the end of the school year is a serious matter for young Max as well. The freedom of summer also means the end of certainty that comes with school. The comfort of doing the exact same things, in the exact same order, for the exact same length of time every day. It means debilitating anxiety from not having a picture schedule in front of him to rely on all day long. And the Mama guilt that goes along with not being able to provide the rigid structure he craves.

Spring break was a real wake-up call. Max was a hot mess all week long. He was confused, angry, and felt rejected by his teachers. He made it clear that we weren’t the only ones dreading the end of the school year. As much as we need for Max to go to school for our own sanity, his need to be in school is far stronger.

And the beautiful thing that makes me want to sing and tap dance across the stage? His school offers an extended school year. Same teachers. Same classroom. Same classmates. Same hours. Same picture schedule. Same peace. Isn’t that the best thing you’ve heard today? I’m telling you my three homeschooled children and I do a little dance each time we think of his beautiful teachers who have graciously accepted him into their fold. All summer long.

So while I’m a little sad that Max can’t gleefully celebrate the coming of summer vacation and the promises it holds, I can only be thrilled that he’s found a place that really understands his needs.

And praise God for special ed teachers. Can I get an Amen on that one?

Guest post - A special offering...

There are moments in time where you just feel like God is laughing at you. Not a cruel heartless laugh, but the lighthearted chuckle that parents often share over the silly little things their children say and do.

I have one of those moments to share with you today...

The other day our family chose to attend a special church service being held on a local college campus. It was in a weird building, without childcare, and a whole lot of people. And. My. Son. Hated. It.


We knew the service would be pushing the limits of what he was capable of, so we had all of our “keep him calm” tricks ready. We selected seats near the front where he wouldn’t have to be aware of the rows and rows of people sitting behind him. He had a handful of things to keep him busy, and his Mama and siblings were nearby for company, but the poor guy didn’t even make it to the opening song.

As the service got underway we tried a delicate dance of in for a bit and out for a bit. But it didn’t take long for him to decided he really just couldn’t participate and needed to be taken outside. Away from the noise. Away from the crowds, and away from the panic that was welling up in his little heart.

And I was so bummed.

So why did these moments make God chuckle? Get the rest of the story here...

Can't buy me freedom...

If a stranger passing us on the street were to give a casual glance in our direction he would probably see you the picture of a Mama with her healthy, sweet little boy, who looks about six years old. Perhaps the stranger would think my son was a bit on the clingy side, and chuckle to himself about the "mama's boy" before turning his attention elsewhere. Those of you who know him a bit better aren't particularly fooled by that image. The more informed in the group know that my baby is not actually six, but nine, and the clingy-ness that is so prevalent as I bustle around town is actually his very best attempt at keeping his act together until he can get home and have a proper meltdown in private.

Looking at my son, it is not obvious that he is trapped inside a cage. But he is. A cage constructed from fear, anxiety, disregulation, and anger. While true, it is not obvious that he is is fighting for his life as he attempts to claw his way out of his bondage using whatever tools he has available, which sadly, is usually cuddle time with Mom. 

Its easy to feel pity on my son. My poor baby with the sad social history. Years of neglect and abuse all built up to make him a basket case. Boo hoo. But I think if we look closer at his situation we might see a reflection of ourselves in his behavior. Perhaps if we study little Max's reality we could admit to ourselves that he's not all that different than we are. This little guy clings to his mother as a security net. His somewhat pathetic, imperfect Mama who quite often has no desire to hold him, especially when we're out in public. We can all see that while my nurturing does help, I'm not the key to freeing him from his cage. As much as I wish I could, I can not make my son's issues leave him alone. Trust me, I've tried. 

And isn't that so stinking typical? Aren't we all a little guilty of reaching for something concrete to cling to when the realities of life feel like an oppressive cage? Clinging to imperfect people or objects that really can't free us from whatever binds us? In the same way I'll never be the key to unlocking my son's cage, those chili cheese fries will never unlock you from yours. 

And isn't it so easy for us to see the flaws in my son's thinking patterns, while turning a blind eye to our own silly notions? I like to think that Jesus sends us these special kids for moments such as these. I can just hear Him chuckling over me as I make these connections. Mama, you might think your little boy is silly for acting that way, but why on earth are you trying to drown your troubles with those mint m&m's? Silly silly girl. 

Sorry Jesus. I forget sometimes that you're the one holding the keys to my freedom. My m&ms are pretty tasty, but their main flaw is that those packages just aren't big enough to make my yuck go away. Thank you for being bigger than candy. Amen. 

Included is such a beautiful word

My Max. He kills me. At 9 years old he’s a wopping 3 ft, 10 inches and 45 pounds (aka the size of a six year old) and strong enough to wrestle a bear. Which frankly I’m not convinced he hasn’t done in a former life. Not to mention he’s Russian. Where am I going with this? GYM-NAS-TICS.

The former gymnast in me looks at this child and is ready to sign him up for pre-olympic competition, no questions asked. Reliving my glory days through my baby? Um. Let’s pretend I didn’t go there.

While I can play out fantasies in my head about the perfect gymnast I “discovered” and “rescued” and how America will fall in love with my baby during those athlete spotlight clips they play during the Olympics I do have to remember that my baby is special. With a capital S.

The fact that he could be the star of the team if he’d just apply himself means nothing. The fact that he is physically capable of doing a standing back flip without assistance does not make him interested in trying a straddle jump.

My shining star is trapped inside a cage of fear, anxiety, immaturity, and disregulation. I can’t put him in a session of gymnastics with coaches who assume he’s “normal” because he looks healthy. Overstimulating environment plus unqualified coaches plus dangerous equipment equals a really bad scenario. A scenario that left my baby sitting on the sidelines, unable to participate.
 

Enter the Special Olympics. I’ve seen the commercials of the cute little girls with Downs Syndrome doing their little thing. Heaven bless them. I never thought my physically-able boy would qualify as “special enough” to participate. But oh yes, he is.

Armed with a doctors note and a copy of his IEP in hand, we recently marched ourselves to a local gym to meet up with a group of other special kids, who just wanted to be included.

I’m not saying my baby thrived in this environment. Far from it. His own personal cage kept him from trying many of the skills his coach demonstrated. But this time it was ok for Mama to sit on the sidelines, ready to hold him when panic overtook ability. Mama knew what his little brain could handle, and what it craved, so when the darkness started closing in she could take him off to the sidelines for a little sensory time until everything was ok again.

And  nobody thought that was weird.

Not only was my son included, met with his level of ability, but he was also appropriately challenged. By people who get him, and the fact that he’s not ready for his Mama to sit in the stands and play on her phone.

Maybe someday my baby will conquer his own personal cage and be able to do that standing back flip he’s quite capable of doing. When he does, you’ll all know the Special Olympics made it possible.

Thanks coach.