Showing posts with label special needs child. Show all posts
Showing posts with label special needs child. Show all posts

Wednesday, November 16, 2016

Everyday Grace

Earlier this week I found myself driving downtown very early in the morning. I was tired and out of my routine. As I drove towards the sky rises and into heavier traffic I found myself looking inward and focusing on myself. Thoughts about the kids, school work, behavior problems, dinner, budgets, writing tasks and work crowded my mind. Typical working mother multi-tasking. If my brain were a computer I would have 20 tabs open at once. It is no wonder so many of us are just so tired all the time- our brains are always on the move!

I found my way to my destination and, in my typical fashion, circled the block a few times trying to figure out where I should park. As I drove past a well manicured green space something bright blue caught my eye. Foxes! A family of over-sized colorful, movable foxes were peeking out from behind a group of trees. Last weekend my family and I wandered into a group of over-sized and colorful snails hiding out in the downtown library courtyard. We then saw similar birds in another part of the city. The foxes made me smile, remembering the fun surprise happening across the snails had been for my boys. "These animals must be all over the city!", I thought to myself. For just a moment, those computer tabs in my brain shut down and a warm feeling crept in. 

I remained confused as to where to park and so I pulled in to a small lot. The attendant stopped me and I assumed he was going to take my payment so I began rooting around for my wallet, barely making eye contact with the bundled up gentleman at my window. "Good morning!". He greeted me happily. His smile beamed at me. Warmth crept in a little more. After taking the time to ask me why I was downtown he suggested another parking garage just down the street that would better suit my needs for the day, and that was less expensive. He lost business in his little parking lot because he was doing the right thing for me. Warm. Warm. Oh so warm!

As I pulled in to the parking garage down the street the attendant flung open his window. Again, my expectations for whatever interaction we were about to have were low. "Good morning!". Here was another human being smiling at me again. After telling me to have a "most amazing day" he waved me on. so.much.warmth.

Everywhere I went that day my interactions were the same. Police officers, city workers, cafeteria employees and fellow citizens were going out of their way to show kindness and respect to one another. Smiles were waiting down the hall as I turned the corner. Doors were held. "Please" and "Thank You" were repeatedly offered. And with every pleasant interaction any frustration I had carried with me into the city that day melted away. Sometimes our fuse is just ready, isn't it? There are times that one frustration after another pile up and before we know it we are primed to explode at whatever the next frustration might be, regardless of how small. Like many people, I am no stranger to the short fuse. Often, for seemingly no reason at all, I am ready to explode, anger living just below the surface.All the time, it seems. I am two inches from an angry outburst all.the.time.  But on this day, pleasant interaction after pleasant interaction slowly extinguished that fuse. Just think how much we could all move forward along whatever path we are individually on if we all treated each other this way. One big train of warm fuzzy feelings, winding through our families and communities. 

I was driving home that evening when the sunset painted the sky. I am usually inside the house during this time of day, especially during the colder months, when the sun sets earlier. I am rushing to finish my work day and then rushing downstairs to start dinner and homework, and then rushing out to after school practices and scout meetings. Sunsets are not usually on my radar. But on this day I had no choice but to enjoy the beauty. And it was spectacular. 

The grace of God is in the ordinary. In the every day. We know this, of course. In theory, we understand this and we have been told this many times in our lives. We see this ordinary grace in literature, we hear it in songs on the radio and our ministers share it with us over and over again. But I think we tend to forget. We tend to ignore the mundane and focus on the wait for the Big Sign

But what if that big sign doesn't come? What if we spend our entire lives waiting? What a tragedy that would be, to miss the every day grace. To miss a brief but tender moment with a child because we are rushing out the door. Grace lost. To lose focus on a conversation with a loved one because we are so focused on getting to our destination on time and so instead are thinking about the traffic that surrounds us. Grace lost. To miss sharing large, colorful animal statues with my boys, because I was annoyed at the change in my routine that brought me downtown in the first place.  Grace lost for sure. 

There is a bigger picture, though, than the simple fact that God is in the details. He is also in the pain and suffering and even the little frustrations we face every day. What if these hard moments are God's way of saying "Pay attention!". "Open your eyes and LOOK!". How many of those moments have I missed? 

"Pay attention! Your child's behavior is trying to tell you something!"

"Look at your husband, right now! Watch this gentle moment he is having with his son!"

"Open your eyes! Your coworker is hurting." 

Hard moments are tough. They can be physically and emotionally draining. They can sometimes feel like huge setbacks, or bring big feelings of disappointment. But they are also the times we so often remember. The moments that live in our hearts, whispering to us to make a change. Maybe it's an adoptive mother who will never forget the look in the sunken eyes of the children at the orphanage where her child once lived. That hard memory of having to walk away from all of those little ones, leaving them behind, knowing they don't understand why there is no love, yet, for them, might lead to a heart whisper that leads to a lifetime of working for orphans.  That call from a friend announcing the death of her marriage might lead to a heart whisper of thankfulness in a relationship and a desire to work harder to sustain a marriage. That hard moment of seeing another mother fall apart at the set backs of a special needs child, yet again, may lead to a heart whisper to get involved, to become a part of someone else's village. Yes, hard moments are tough. But they are needed. They are wake up calls from God to do something. To notice something. To stop running and just be, if only for a moment. 

Grace in the ordinary and hard moments bring His love for us alive. Maybe it's a warm feeling brought on by the goodness of others, a fox statue or a colorful sunset viewed from the windshield of your car in rush hour traffic. Or maybe it's a big push found in the heart whisper we hear as we sit in  the ruins of yet another disappointment or set back. They are easy to ignore, the warmth and the whispers. Open your eyes! Look! The moments are everywhere, aren't they? 


What warmth have you felt, or what heart whisper have you heard today? Share your comment below. 


Thursday, August 28, 2014

Ignore and Celebrate






School started last week. We are now a two kids in school family. We have been a two kids in school practice family for a few years, while our youngest was in preschool. Turns out, just as I had suspected, preschool was not so much a trial run for the real thing. Turns out, the real thing is much, much harder. So we have a two weeks under our belts.  Two weeks of packing two lunches, signing two homework folders, reviewing behavior charts and reminding two boys to put those backpacks away. I swear, between the shoes, the dog and the backpack, I am going to break my ankle.

And while it has been two weeks of school schedules and strict bedtimes and balancing football practice and homework, it has also been a week of utter emotional chaos. People, I have cried every day. Every single school day has brought me to tears. And to cheers, as I work hard to find the good and to celebrate even the tiniest of victories. We are midway through week two of the school year and I am ready to stop.the.rollercoaster. Please. I just want off.

But I can't hop off. I can't just raise the bar that is holding me in, hop out, and run over to the calmer merry go round my oldest son is riding through life. I watch him, with awe and jealousy, as he rides his horse up to the highs and down to the lows. Lows that aren't really all that low and that have a safety net- a floor between his horse and rock bottom. He hangs on to his horse as he travels around his world, going up and down, smiling. Sometimes I get to ride on that fun and peaceful ride with him, and I love it. I know sometimes it may seem tame to him, but I would love to ride the merry go round with him forever, until the day he hops off and runs for that rollercoaster of his own. Sigh.

Parents of kids with special needs have the added burden of educating yet another round of teachers and administrators about their child's specific brand of specialness. A by product of this is something I refer to as the "alphabet algorithm". SPD, RAD, PTSD, FAS... oh my goodness my son has an alphabet soup of diagnosis. You would think that all of those letters would mean that we would know exactly what is going on with my son. But I haven't a clue. It's a huge mathmatical equation. Is this (insert odd behavior here), casued by the RAD? Is it a sensory issue? Is it a flashback induced PTSD problem? Is he just being a typical five year old? Is it the color of the kitchen walls? Does he hate his socks? Does he hate me? Does he hate America? My head is going to explode.





I can't think of my son as an alphabet. He is a boy. He does not like changes to his routine. He does not like to go to bed when the rest of the family is still up. He does like to sing and dance, but only when he is alone with his immediate family. He loves to cook and clean and he is extremely attached to a stuffed dog. When in the right mood he can be funny, sweet, and thoughtful. Not that anyone else gets to see any of that. He has this deep yearning in him that I can't seem to fill. He can't seem to get enough of me, so much so that when I am with him I am torn between intense love and feeling as though I have been kidnapped, Is it love? Is it a need he has that has yet to be filled? Is is a RAD behavior? Is he trying to control me? Ack!

So as we wrap up week two of school I am ready to roll up my sleeves and get to work. Again. And I know this is only the beginning. I am staring down the barrel of 12 plus years of educating new teachers, advocating for my son, restraining myself, and, I hope, occasionally being totally amazed at the kind heartedness of others. I know along the way we will pick up other members of my son's village- a therapist here, a new friend with an understanding mom there. (Yes, I saw my son lick your doorknob. Nope, don't know why. I was hoping you didn't notice that he just jumped off your beautiful sofa and landed in the middle of your living room so hard that your sweet family photo tipped over on the side table over there...)

Near the door of our home that we use most often we have a white board hanging on the wall. This board proudly displays the words "We can do hard things". I have listed things like showing compassion, math, keeping our hands to ourselves. I think there is one more thing to add-  life. I can do this hard thing called life. And so can you. We can advocate. We can let go. We can forget the alphabet soup of diagnosis. We can meet with teachers, state, restate, and then, calmly, state again the needs of our child. We can weigh one school over the other. We can ignore behavior and we can celebrate awesomeness. You and me, we can do hard things.  I am not so sure that I believed this last week, but this week, I get it. I can do this- not alone, of course. My husband, family, church, teachers, friends... God- we've all got this.

So to all you special needs parents out there, the ones who have been fighting for their child for years and the ones, like me, who are just stepping into this world, cheers to you. I am in awe of you. Go on, you amazing people- make it a great school year!

Thursday, March 20, 2014

repairing the broken






It has been nearly three years since I stepped off that plane with a tiny 24 month old strapped to my hip. I will remember that moment for the rest of my life. Tired, I mean bone tired. Awake for two days straight, emotionally and physically battered kind of tired. Cranky, too. That tiny 24 month old had quickly proven to be quite a handful. After hours of holding his smooth forehead away from my body to stop him from biting me, after trying to soothe his screaming and comfort his angry little body, I was cranky. Worried, for sure. This tiny little life had already attached himself to my heart, as well as to my body. He hadn't let me out of his sight in two weeks. He had held my finger while I showered, not minding the water splashing over him as he stood there, patiently waiting for me to finish. He had held my hand through the slats in the crib, refusing to allow his tired body to sleep. He had broken the old white wooden crib the hotel had placed in our room with his near constant full body tantrums. Even if I held him until he fell asleep his body would jolt awake when I gently placed him in the crib, his tears already falling as he started to scream, again. Worried if I would ever sleep again. Worried about the collateral damage my new son had delivered on our Russian hotel room. Will be always be destructive? Will he always be angry? Will he hurt my then four year old son? Monumental worry. A bundle of nerves, tired, cranky and worried, walking off a plane at the end of a two day journey across the world. With a tiny angry baby strapped to my hip.

I have learned a lot these past three years. I have learned that repairing the broken is not easy. I have learned that it can take years to overcome neglect and trauma, if it happens at all. I have learned that love is not always enough. Patience. Forgiveness. Education. Advocacy. Energy. An endless supply of energy.

Three years in and that boy can still drive me wild. Wild with love and pride for him and his accomplishments. Wild with frustration. Wild with worry over his future. Will he be able to make it through a one hour Sunday school class? (He can, now.) Will he ever stop purposely breaking things that are important to others? (He has, mostly.) Will he ever just go to his room when asked, to give himself, and me, a time away? (Not yet.) Will he stop hitting his daddy and I out of anger? (He has, most of the time.) Will he continue to have multiple breakdowns and screaming fits daily? (No.) Weekly? (Yes.) Will he ever be able to step outside of his state constant vigilance to be able to learn? (Yes, slowly.) Will he ever be calm enough to sleep through the night? (Yes.) Will he ever sleep through the night without an herbal assist? (Yes, mostly). Will he be able to attend a family function without eventually getting so wound up that he hits a cousin? (Not yet.)

So many worries. And for the bulk of the past three years these worries have all been about him. Will he...? Can he...? Should he...? But then it hit me. This repairing the broken is not about fixing him. It's about helping him, yes. Helping him find the strategies he will need to cope in this world. Helping him to be successful in whatever educational setting works for him. Helping him to make friends and sustain relationships. Helping him. But not fixing him. There is no repairing going on here. Not on his end, at least.

The repairing comes in on my end. Repairing the hole in my dreams that began as a tiny little tear way back in that hotel room in Russia. The tear that grew a little with each swing he took at me and each shoe he winged at my head from the backseat of the car. The rip that became a gash with each argument between my husband and myself, for raising a child of trauma is not easy and maintaining a team spirit is difficult at best and downright impossible at times. The gash that opened further with each second guess and sleepless night. The second hole that appeared the day I watched my young son's entire special needs preschool class stand up and sing a song, sans my son, because he couldn't process what was happening and he couldn't stand still long enough to participate. That was the day I learned exactly how much time my son was spending walking around his preschool with the aid, due to his disruptiveness in class. That was the day I put my boys in the car in the preschool parking lot, drove them to a drive through smoothie place, parked the car, and cried, quietly, in the front seat as they chattered and fought and giggled and drank their smoothies in the backseat. The rip really grew that day.

Every day that tiny tear either grows or is repaired in some way. There are days when I think the tear is close to sealing shut forever, that the problem is lessening and the solutions are close. And then I am blind sided by a new behavior, a new fear, a new outburst of some kind. And I fall again, taking my young son down with me.

But there is more to the repairing that rewriting the story of my dreams. There is the repairing of my parenting. What comes easily with my oldest is a struggle with my youngest. It is easy to understand the concept of "parenting the child you have, not the child you wish you had." It is not so easy to actually parent the child you have, when the child you have is frequently physically and mentally incapable of molding to your ways. So I have had to repair my parenting techniques. I have had to reach out for help. I have had to advocate on behalf of my son, on behalf of my family. I have had to educate family and friends on our needs. I have had to justify my parenting to many who should not have a say in how I raise my children. I have had to explain why we don't want him to play organized sports, at least not right now. Why we watch him like a hawk during family events. Why we remove him from "fun" before he even shows signs of going over the edge. Why we don't want to hear that he is simply "being a boy". That, yes, early life trauma is a real thing. And no, it is not always reversible. I have had to parent in a fishbowl, instead of the privacy of my home, because much of my son's anxiety issues show up in public, masked as hyperactivity and disobedience. I have had to repair my thin skin.

I have learned grace. To give grace to others, especially to my boys. And to give grace to myself.

These past three years have taught me that "normal" isn't always better, and that repairing the broken doesn't always mean fixing the child. These past three years have broken me in ways I am just beginning to understand. But something that is broken can still be useful. Broken can still be beautiful. Broken can be made whole again. I have chosen to advocate for and support my son. I have chosen to help him learn the skills to get through life. I have chosen to forgive myself when I break, yet again and when frustration gets the best of me. I understand that sometimes adoption is about repairing the broken. But now I know that I am the one who was broken. My son? He is perfect in his own way.

Monday, December 30, 2013

This Clown Dancer is Your Mother!






I know that you are awake, over there in your room. You always hear the loud beep of your older brother's alarm clock. Your brother, he sleeps through his alarm on a daily basis, but not you. You don't need your own clock, not when your eyes pop open with the slightest sound from your brother's room. I wake up your brother and get him started on his morning path to his favorite cereal and TV- get dressed, put on socks and shoes, brush teeth...

I head into your room, my heart light. Today is going to be a good day!

As I round the corner of your huge bunk bed I see you are awake, squirming under the heavy gray blanket that you outright stole from your daddy. You are hiding, but I know you are there, I can hear you giggling. "Where is Alex?", I ask, in a sing song voice. "Come on out, baby!".

After five minutes of cajoling I finally get you to crawl out from under the covers and we start the slow dance of getting you dressed. I give you two shirts to choose from, knowing if I make the choice you may freak out. Today you want a third shirt in the mix so I pull another one out. You wander over to your window. I leave the shirts and pants on your bed and stand up. "Go ahead and get dressed, kiddo. I will be back in a minute." You scream. I turn around and sit back down. We play the "pick a shirt game" a few more times. Then we play the "pick a pair of pants game". My Super Six Year Old wanders in, asking what is taking so long. I point in your direction. "Oh, right."

I send you out in the hallway to go downstairs. You take three steps and stop, screaming at your loudest.  "Alex, the dog is not in your way! Just walk, please?".  I turn to my oldest son. "Please take the dog downstairs." The three of us proceed to tango through the hallway and down the steps, puppy underfoot and you screaming the entire way. Our feet hit the floor at the bottom and the four little feet head to the left, heading straight for the living room, toys, and the almighty TV. My feet turn right. I turn up the heat, walk through the kitchen, turning on the coffee maker, and head to the garage door, turning off the alarm. I walk to the back door, bracing myself against the cold as I shoo the puppy out to the backyard. "Shoes on!", I call out to you and your brother, both of you now in various stages of chaos in the living room. "Shoes on before TV!".

I stand in the kitchen drinking coffee that is too hot while both of you sit nicely, watching TV. Eventually the bliss is broken and I set my hot coffee on the counter with a sigh. I pull you off of your brother and sit you on the other sofa. After asking you repeatedly to get your shoes I gather them up myself and toss them in your direction. "Put your shoes on, kiddo!", I say, in a much happier tone than I am actually feeling. I make it a contest- which boy can put their shoes on the fastest? You lose. You scream. I sit you on the kitchen counter and put your shoes on. I give you a kiss and set you back down on the floor. I repeat the shoe game, only this time with your coat, hat, and backpack. I do my clown dance, my happy contests, my distraction techniques. Eventually both you and your brother are in coats and backpacks are on. I place my hand on the door, holding my breath. Can we make it out the door before any more demands come my way?

"I didn't have breakfast!" . "I want milk!". The demands continue. I weigh my options. Give in to your demands, make us late, or pick you up and carry you to the car, which will have long lasting repercussions. Be late, or spend the entire ride dodging shoes and listening to a screaming child. Sadly, I know I will not take the brunt of your  anger in the car- your older brother is the one trapped back there with you. Either option just sucks. Some days I choose to be late. Others I choose to take a stand and just push ahead. 99 percent of the time we are a screaming mess by the time we back out of the driveway.

I do my clown dance again to get you to get out of your car seat and back into your winter coat. More often than not you wind up laying on your back on the floor of the car, laughing hysterically. You think this move is hilarious. I do not. We make a game of getting in to daycare. We check the lunch menu and make a pit stop- we absolutely cannot mess with your routines! We find your classroom and I hand you off to the teacher. I peel you from my leg, turn you around, and deposit you into the arms of the waiting teacher. A quick kiss and then I walk, maybe a little too quickly, out the door. I can breath again.

I don't do my clown dance for anyone else during the day. Cashiers, phone operators, the UPS guy- these hardworking people do not get the best of me. Sometimes, not even my husband or oldest son get the best of me. And certainly, on most days, I do not get the best of me. I save it all for the clown dance. For the cajoling, the bartering, the distracting that it takes to keep you moving through your day. I'm not going to lie to you, little one. It is hard work. It is exhausting work. Worthwhile, but exhausting.

Nine hours pass. Maybe ten. Sometimes I pick you up early. Sometimes I could pick you up early but I don't. Sometimes I sit in the car, watching the dashboard clock click off the minutes. Sometimes. Always I feel guilty about this.

I turn into the parking spot in the daycare parking lot and remove the key from the ignition. I take a deep breath. My first stop is the big kid room to pick up my big kid. He takes his time putting his homework or toys away in his backpack. He asks me his every day question and I answer with my stock answer. "Yes, you have to wear your coat. It is cold outside." I help him push his backpack up onto his small shoulders and we walk down the hall to your classroom. "Alex!", I call out. You are sitting on the floor, reading a book. I marvel at this. You are sitting in a group of other children, who are also sitting. You are carefully turning the pages, taking in each picture. You are completing an independent activity! You are not ripping the pages of the books or throwing them around the room. Well, at least not yet. You look up, see me, and a huge smile spreads across your face. You stand up, throw the book at a classmate, and take off,  running around the room. I refuse to run after you. I want to. I want to run to you, grab you, stuff you under my arm and carry you out of there like a football. I want to ask you why you were sitting so still? Why were you reading a book? Why you run from me? But I know you will not answer. And I am all about not making a scene in front of the daycare teachers. (In front of my sister, yes. Teachers, no.)

Eventually you run past me and I grab you. I practically run to the door with you, calling over my shoulder to your brother to grab your belongings. We. Have. To. Get. Out. Of. This. Room.

I clown dance you into your coat. I clown dance you into the car. Past the front desk with the sticker box. Past the gum ball machine. Past the key pad on the door. I clown dance you out of your winter coat and into your car seat. I clown dance you into the buckle. I remove your shoes, sometimes, if I sense you will go over the edge during the drive.

I clown dance all  the way home. Distract. Deflect. Maybe, just maybe, I try to sneak in a real conversation with your brother. Usually you talk at your loudest the entire drive, making this conversation frustratingly pointless. Sometimes I try to sneak in a little teaching, or a little real conversation with you. You don't respond to my questions. You don't respond to my sentences with a sentence of your own that makes sense. You are frequently incapable of holding a conversation. But you love the clown dance.

I clown dance you into the house. Into the bathroom. Out of your shoes and coat. And then our evening begins. Homework, dinner, clean up, play time, TV time, bath, bedtime. I break up fights. I redirect. I dole out time outs. I give up on cleaning up. I give up on play time. I clown dance the medication down your throat. I clown dance your jammies on. I attempt to read you a book as you roll around your bed. You interrupt me a thousand times while I read. I offer you the page and attempt to ask questions about the book. I close the book. You scream. I clown dance a little more. My clown dance is slowing down. I am tired. I barter to get you to stay in your bed. I take away privileges when you follow me out of your room. Sometimes I yell. I don't mean to yell at you, my sweet little guy. A part of me understands that you can't help this. But, sometimes, I can't help my reactions either.

When my clown dance is finally over for the day I still have your brother's needs to meet. More snuggle time, homework, playtime, snacks, bedtime. More of me that is needed. More of me that I want to give. More of me that is not always available to give. But at least the clown dance has been put to bed for another night.

The next day dawns early and I head into your room, my heart light. Today is going to be a good day!

And if it isn't, if the clown dance doesn't work, if the clown dance is literally all you and I do today, that is OK too. We will have yet another chance the next day. And the day after that. And the day after that. And I am hoping that one day your mixed up mind will figure that out. That we will always have another day. Because maybe, just maybe, when your brain truly believes that, we can put this clown dance to bed and really get to know each other. I so desperately want to be more than your clown, dancing you through care giving and through your day. Being your clown is exhausting. Being your mother, truly being your mother, is also exhausting, I would imagine. I want to stop imagining. This clown is your mother, little one. Let me me your mother.