She’s not a fish

I’ve struggled with writing this post for several weeks. Then I decided to wait for an update before publishing. Then I needed a week to mull over my thoughts and recover emotionally after the update before I published. I found my “happy place” after an exhausting week with Nick at Children’s…. Sitting in a dark EEG room and long, traffic-ridden drives give the brain plenty of time to think things through.

Before the twins could begin school this year, we had to participate in a transfer admission, review, and dismissal (ARD) meeting with a committee that consisted of school representatives, teachers, audiologists, deaf co-op administrators and a speech therapist. I’ll spare you the major details, but towards the end, I felt unheard and misunderstood. I had repeated over and over the twins’ background, their intimate story, in the hope that everyone present would comprehend and feel to their core, as our family does, how important the boys are and how hard we’ve all worked to get them to the successful level they demonstrate today. I laid out what felt like every single piece of my heart on that conference table and when I didn’t get the response I was anticipating, I began to cry. My breakdown was clearly uncomfortable for many at the table, but one (yes, one) angel reached for a box of tissues. Everyone else either glanced down at their paperwork or wouldn’t meet my eyes. I felt as though my trust in this committee that would ultimately determine my children’s fate had been betrayed. And it hurt. It took me several days to regain my footing after the first ARD.

A month later, we have the 30-day ARD for both boys to review an encyclopedia’s worth of testing and determine best placements. I wrote my opening speech and spent days practicing. However, as soon as we entered the room, I lost my urge to help these strangers see our life and fully understand it. I lost the desire to share our story, because your story is shared with those who deserve to hear it. Entering that room, which had more in attendance than the first ARD, had me leaving our story in the lobby.

At one point, I did make an abbreviated statement as follows:

Parenting is a shame minefield. For all of us, but especially for those of us who were called upon and chosen to adopt a child with special needs. Someone thought our family would do a pretty darn good job putting these kids on the right path, so when we screw up, we feel as though the critics not only come out from under their rocks, but they’re also renting planes with huge banners that read, “These parents failed big time! Don’t be them!”

I imagine none of you have been on this side of the table, but I’ve been on your side. Guess which side cuts you off at the knees and leaves you open and exposed? Guess which side takes DAYS to recover from? This side.

I want to address my mental breakdown at the first ARD. I felt unheard, even though I repeated my story several times. I still honor my emotions, but I’ve shifted my trust from this committee back to those invested: my family. I’m putting trust in these little boys, who are happy. They may be frustrated at times and a bit confused, but at the end of the day, they are happy. THAT is all we care about – their happiness.

They love going to school. So, I thank all of you here. My family thanks you, too. Whatever is decided in this meeting I know in my heart and soul is right, because of the time, energy and effort everyone has put into these boys. Our family will not just jump in with both feet, we’ll cannonball into this.

I’m sure you won’t be surprised that none of this was entered into the meeting’s notes under parent comments. What WAS entered were my concerns of the behavioral approach used in one classroom, which was fine for one child, towards the other child and how he would respond. My comments and beliefs were not accepted well by the principal in attendance, understandably, but what followed was like a punch in the chest that literally knocked the wind out of me. She informed me that if having the twins in the same classroom was disruptive to the other students’ learning environment, she would move one child to a completely different school. I attempted to explain how a new school would do NOTHING to improve behavior and would be devastating for a child who had a long history of trauma and abuse. Her words, “I am not saying that is what will happen. I am simply letting you know ahead of time.”

I choked back the bile rising in my throat and the tears forming in my panicking eyes and said, “I am simply letting you know ahead of time that I will NEVER allow that to happen. I will homeschool them again before I allow them to be traumatized again.” I sat back, firmly, and crossed my arms, like a 5 year old. I suppose I did it as a body language message that I would not budge on my belief of protecting these kids at all costs. How could she NOT see how her statements made no sense for the child’s well-being? How could she NOT see how her statements of threatening trauma affliction to my family would cripple me as an adoptive special needs parent? I would have recovered from the chest punch quicker.

What I’ve realized this week is that there’s NO WAY she could see the effect of her statements. Because she’s not a fish (watch this brilliant TED Talk by Seth Godin for an explanation). Essentially, she’s not an adoptive special needs parent who has spent 7 years trying to right wrongs and doing everything you can, 24/7, to make life brighter and better for a kid who can only thank you in hugs. She’s not us, she’s not invested. She’s simply a school principal. So, I discarded my dislike of her for making such a crass threat. I will say, however, that as a fish who has swam through all but 2 of the 7 seas, she’s missing out on a great life adventure.

Truth: Michael has sailed 5 of the 7 seas

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Pint-sized perfection

The twins are in second grade this year, which in the Catholic faith means First Reconciliation and First Eucharist (Communion). It also means the first time we’ve feared a sacrament.

If you’ve met the boys, you are well aware of how…… how should I put this?…. of how ENERGETIC they can be. And they reserve a special kind of energy for strangers, the ones who think they can’t comprehend or understand. If you’ve met the boys and spent any time with them, you are well aware of their limitations, of their unwillingness to listen at times, of their unique level of “let me just see what I can do” view of life. Wrap all of that into a nice little package of total boy and visualize containing it in a small room with a priest for confession…. Or in a mass to receive communion. Yeah, I couldn’t imagine, either.

carey anne photography family

We’ve worked hard to teach the boys right from wrong, but it is finite. It has to be re-taught for each situation or environment. In order to be taught, it has to be observed and redirected appropriately as it happens, otherwise it’s not cemented in their brains. Take Nick for example: He’s like a shark when people come over circling for their phones. I can leave my phone out all day and he’ll leave it alone, but I spent LONG hours hiding and waiting for him to reach for and/or touch the phone to jump out and make my “angry” face while telling him, “NO TOUCH!” This rule doesn’t apply to anyone else’s phones even, though they are the same color and type. And it certainly doesn’t apply if he doesn’t get caught.

The idea of confession is not a function the boys are capable of. They will occasionally “tattle” on someone, but it’s a learned behavior rather than an end to a particular need. Expecting them to admit something they’ve done wrong or incorrectly is impossible. The concept of sin is foreign to them. Teaching these two how to confess to a sin in a room with a priest was turning into a foreign backpacking trip complete with granola bars and hostel stays for me.

carey anne photography family

At the boys’ First Reconciliation interviews, where they ask the child to explain sin and what the confession process is all about, my two precious, adorable boys tried to run out of the rooms. They refused to sit in the chairs, talked their nonsense chatter and acted like complete hooligans. I sat in the hallway between the two rooms and tired to hold back the tears. At the other end of the hall were the parents whose children held their workbooks (Matt liked to look at the pictures, Nick could care less) and answered the interview questions. They were also the parents who questioned me with their glances, probably wondering how I could let the boys act the way they were acting.

The interviewers were strangers to the boys, so they pulled out their biggest tricks. They didn’t understand why we were at church on a non-mass, non-CCE class day. Their ADHD meds had long worn off. And I felt helpless.

carey anne photography family

Enter our angel – the eduction director at our church. 

She politely pulled me into Nick’s room and quietly chatted with the interviewer before turning to me.

“The boys are incapable of understanding sin.” I replied that I knew this and braced myself for the bad news, because all I could think was that if you are unable to comprehend sin, then you can’t have First Reconciliation, much less First Eucharist. How was I going to explain to Matt every Sunday that he couldn’t participate in communion with the rest of us? We had developed a silent argument where he started begging to hold his hands out and I singed, “No. Cross your arms.” Every. Single. Sunday. Mass.

“Because they are incapable of understanding sin, there’s no need for confession.” My heart stopped.

“They can’t reason, so they can’t commit mortal sin. They are saints, Carey.” I dropped to my knees and began sobbing – out of exhaustion, relief and just a need for a good cry.

Fast forward to this past weekend and the boys’ First Eucharist after several months of prep classes. We have practiced for several weeks and they had it down. They’ve even practiced with one another using crackers, Cheerios, whatever was round and resembled a communion wafer. Their outfits included ties – a favorite for Matt. They were seated at the front of the church, pews 1 & 2 and the entire family sat with them. Both had impeccable behavior for the hour long ceremony and both were quite pleased with themselves afterwards.

carey anne photography family

I cried – out of exhaustion, out of relief and because I was just so darn proud! Proud of these two boys, proud of us as a family and proud of our church community for embracing our boys.

I believe that when God  brings a child like this into the world, the perfection He seeks is in the way people react to this child. ~ Where is God’s Perfection

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extended hospital stays are….

Tiring.

Behaviorally challenging.

Frustrating.

Boring.

Necessary.

Did I mention tiring?

To help with all of the above descriptors today, I tagged Michael out (we’re alternating nights) and presented Nick with his favorite item in the entire world – his GUITAR! The guitar, along with Linkin Park videos (don’t judge, he has a family that loves all types of music), brought on comfort and a willingness to eat some of his usual foods: carrots and crackers with hummus.

Consider for a moment what this image contrasts: a little boy with an NG tube eating a snack, a guitar in a quiet hospital and the devastating effects of a rough beginning that are unable to dampen a child’s spirit.

west of home south of sanity Nick hospital NG tubewest of home south of sanity Nick hospital NG tubewest of home south of sanity Nick hospital NG tube

 

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respect, roast beef and reciprocation

I have book OCD. Ask any packing and moving company that’s been blessed with an assignment to help our circus PCS (permanent change of station for the non-military folks) every few years. They’ll confirm that 40% of our boxes are marked books.

I share my books with friends, after I’ve written my name inside the cover (a habit taught to me by a dear woman to ensure my treasures are returned) with the exception of one. I never, ever lend out Have a New Kid by Friday by Dr. Kevin Leman. I refer to it too often to be without it during a crisis.

I flip through the pages occasionally as a reminder of what I should be doing, what I could be doing, what I’m doing right. I need constant validation of my parenting strategies, because, let’s face it, none of these children are sitting me down and declaring, “Mom, the way you handled my tantrum this week when I slammed the door after kicking all of my toys down the stairs was spot on. I needed your calm, reassuring approach to snap me out of my mood and make me see the error of my ways.”

One topic I’ve read and reread lately is respect. Respect, according to Dr. Leman, along with accountability and responsibility makes a family a family.

Teaching a child respect is done by example, which I’ll admit I’m not consistent with, but I certainly try to be. But can a mentally challenged child be taught respect? Can Nick be taught respect and is he capable of showing respect? Or is what we might perceive as respect simply his way of following set rules?

Nick has cerebral palsy and microcephaly. Rarely are Nick’s movements methodical. He resembles a bull in the china shop rather than a Bhuddist monk. He’s a black and white child with not much room for shades of gray. For example, he won’t touch my phone, regardless of where I leave it. A friend’s phone, however, is fair game. The “no touch” rule hasn’t been delivered for THIS phone whereas Mommy spent weeks hiding in tight, dark spaces waiting to scare the bejesus out of me as she propelled herself into my line of vision if my hand came within 2 miles of HER phone. Every. Single. Time. Over and over and over again.

In order for a “no touch” rule to be understood and accepted by Nick, it needs to be applied to each individual item in each individual environment.

Dr. Leman says respect is a two way street and parents should care about their child’s opinion. Hhmmmm….

A typical day with Nick begins with me telling him to wake up and go potty. No room for his opinion.

Then I order Nick downstairs for breakfast. He is given 2 choices for a food item. Sometimes his response is a simple, “NO”, other times it is “Maccaroni and cheese!” I suppose starting one’s day with mac-n-cheese won’t end the Earth’s rotation, so I give in if I have a container of the favorite stash in the fridge. Other days, I get a mix of screams and unrecognizable words. Perhaps I will try to listen to his requests on the rare days he stops his screaming protests long enough to deliver one in cognisant words.

The breakfast scene turns into a struggle on more days that I care to admit. Instead of respect flowing between parent and child(ren), I bark “eat” at them as I run around the kitchen like a rat on acid while packing lunches, clearing counters, feeding the pets, starting and folding laundry, making coffee, pouring meds down children’s throats and hoping to catch a piece of news while refusing to let the children stare at the TV…. Or the lights, which is Nick’s preferred way to pass the breakfast minutes.

After eating, it’s time to brush teeth. We’ve finally reached a point, after T-H-R-E-E years, where the child doesn’t scream about this. And it wasn’t even the actual brushing that would initiate the high pitched protests, it was the command “go brush your teeth”…. He at least transitions better these days.

There are still screams when he’s told to get dressed. He likes to wait me out, get as close to the time the bus is arriving as possible, so I will be forced to help him. This summer, I spent a great deal of time refusing to help and he may have finally gotten the message that mom isn’t going to step in for self-care. OK, with the exception of brushing the teeth. I don’t particularly like dentist guilt, but that’s an entire post for later.

School mornings for me are no picnic. I attempt to anesthetize my foul mood with room-temp coffee and a slice of roast beef as I make 5 sandwiches. How is this showing my body respect to begin my day with such high amounts of stress? If I’m not respecting myself, how can I even start to show a child respect and expect to see it reciprocated?

Mama’s Losin’ It

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KISS the mentally retarded child

5 facts about Nick:

he loves NASCAR
he will hug you
he screams – ALOT
he fixes mac-n-cheese
he is severely mentally retarded (MR)



Nick is my daily challenge. Some days he wakes up and is as happy as a hermit crab being released back into his ocean, and we sail through with smiles. Other days, the only sound emanating from our home are Nick’s screams and our frustrations. He screams about pain, but also about transitions. “Time to brush your teeth” WAAAAAAA! “Time to get dressed” WAAAAAAA! You get the point.

Added to his preferable mode of communication (screaming instead of making his mouth form words or use his hands to sign) is his extreme MR. Simple conversations cannot be exchanged with him. “How was your day? Did you play with your friends?” Every time the answer is a flat, “Yeah.” It would be “yeah” if we asked, “Did you fly a space shuttle to the moon and simultaneously find the cure for cancer?” 

It is overwhelmingly frustrating at times. And it’s not just that he can’t answer “How was your day?”, it’s that this is reality. He will NEVER be able to answer “How was your day?” He can’t think or understand that abstractly. We all find ourselves vacillating furiously between celebration for moments where “he gets it” and extreme despair for what this child’s future holds.

This week on our way to Nick’s PT, OT and speech sessions, Allen and I tried to explain to Nick to pull his shirt up over his left shoulder. He will let it slide off and his tiny body will eventually start to make it’s way through the neck of the shirt. Part “I don’t care”, part left-sided hemiplegia with his cerebral palsy. The situation was ridiculous. Allen and I are in the front seats, I’m trying to drive and look at Nick through the rearview. Nick is in the third seat, unreachable. “Pull your shirt up! Nooo, the other side. The OTHER side Nick.” This went on for at least 2 minutes and when Nick finally performed the requested task, I cheered like a crazy woman and assigned a name to the task, “Good job FIX SHIRT!”

Nick started with speech that morning and immediately launched into his “I’m MR therefore I can do what I want” routine with his rag doll impersonation. Great….. Yet another professional who will not like my kid because of his behavior….

As a parent, you take ownership of your child’s behavior. Society says that he must be the way he is because of how you’re raising him. Society doesn’t stop to ask, “Is this child adopted? Did this child suffer imaginable abuse and trauma that may never be overcome?” Society doesn’t get down on the child’s level, attempt to look him in the eye and ask, “What do you want? How can I help you?” Society simply gives the proverbial hairy eyeball and turns away thinking, “That mother can’t make her kid behave. SHE must be doing something wrong.” 

Putting it in raw terms, society places shame on why Nick is the way he is. Nick doesn’t know shame (either that or he’s followed along with me during my e-course on Ordinary Courage with Brene Brown), so he’s not at all worried. By default, the shame falls to us as the parents and probably a little to the other children. We’ve learned, though, to take a Nick-led approach and just let the disapproving glares roll off our backs as best we can. What those narrowed-browed people don’t realize is that this world without Nick would be a world without simple accomplishments, without a day full of hugs and slobbery kisses, a day without grace. Carrie, from daysofwonderandgrace.blogspot.com, shared this relevation recently:

…the invisible attributes of God may be more clearly manifest in the lives of people with disabilities and those who surround them because it is so patently obvious that grace emanates from God, not people. 

Back to the story. Allen and I had errands to run and when we returned, I quietly slipped into the pediatric therapy room and watched. The OT was bringing out a game Nick recognized, so he was willing and excited. During the game, she methodically and gently held his right hand while encouraging him to use his left. 

Pause, as his brain tries to tell the left hand to move. My breath catches and I try to hold back the tears of this reality for me. I know he can use that left hand (he was reigning champ last weekend on Mimi’s Kinect system in boxing!), but to see him struggle reminds me of just how much his CP affects his life. To see him struggle reminds me of the degree of MR he lives with.

And then he made a motion, may have taken all of a second, that makes me smile. He pulled his shirt up over his left shoulder.

He did it without my “official word” prompting. He did it without someone calling his attention to it. He did it without cue cards on the wall or someone signing to him. He did it without an encyclopedia’s worth of IEPs and a lengthy conversation with a professional on positive reinforcements – all things I’d spent the last hour worrying about. AND he did it with his left hand.

I’m watching from the other room feeling frustration and grief and anger when the lightbulb over my head flickered on. I need to just KISS when it comes to Nick. Keep It Simple Stupid. In this situation, the stupid applies to ME. Me, the one who over-thinks and worries too much. ME, his mom.
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