Her and me and SPD.

I don't think you understand, she never stops crying. It isn't normal, is it? When I turn on the light in her room, she recoils, like she's in physical pain. Whenever we go for a ride in the car, she throws up. Her Dad coughs and she jumps, like she's afraid. Trying to get her to eat anything is a huge, huge struggle. She screams when it's time to get dressed. And she cries and she cries and cries. She never stops. It's more than crying. It's life-halting, room-clearing, ear-piercing, screaming. Everything overwhelms her. Everything. I don't know what to do. I don't know what I did wrong, but I must be doing something horribly, horribly wrong.

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. --SPD Foundation

My daughter was recently diagnosed with Sensory Processing Disorder. I’ve known (or suspected) that she had sensory issues for a very, very long time. From the moment I brought her wriggling, screaming, uncomfortable little body home from the hospital, I had a gnawing feeling deep down in my Mommy gut that something was just a little off. It's not usual for babies to sleep in 15 minute increments for months. It's not typical for children to refuse anything but breastmilk beyond a year. Bathing and dressing and walking and just, everything...it wasn't normally like this. There were signs, but it took me over 4 years to get the nerve up to take her in and get a diagnosis. Why did it take so long?

Because I was afraid.

I was afraid of what they would say about her. That she’s different. That she’s not “normal.” That people would find out what she has and focus on that instead of seeing her for the wonderful and brilliant little human she is, in all her pink, sparkling tutu'd glory. That they would hear she was diagnosed with SPD and automatically judge me. I've heard people say it's not a real thing. A name for what people used to call "spoiled rotten," a brand that reflected more on poor parenting skills than on a child in a constant state of overwhelmed chaos.

I was afraid of what I would think of her. What would it look like if we found out, indeed she did have SPD? From that day forward, would I treat her differently? Be too soft on her to make allowances for her difficulties? Be too hard on her to force her to overcome obstacles that most 4 year olds don't face? Would I be too focused on fixing her to recognize how wonderful she was just the as she was? Maybe my biggest fear: what if there's nothing wrong with her and I'm just a horrible Mom...

I was terrified.

But one day, after a particularly difficult morning on a loud, hot and overwhelming soccer field. After yet another epic meltdown that had me fuming and cussing and wishing I'd never been born (much less birthed this glorious creature into the world). After more crying and screaming and helpless feelings than I'd ever like to admit; I'd had enough. THIS. WASN'T. WORKING. It wasn't working for me and it really wasn't working for my precious, sensitive little girl. 

So, I pulled on my big girl panties and made the call that I'd been dreading for years. The very next day we were in with the OT and literally 3 minutes into testing, the kind girl looked me in the eye and said, "I can already see some sensory issues. We will get you the official results after testing, but yes, we will recommend she start therapy."

Justification. Disappointment. Relief. Anxiety. Guilt. It was all there. 

My thoughts swirled and I talked myself up and down, praying through the emotional roller coaster: Yes, my little girl has SPD. Yes, she will always have SPD. No, things will never come as easily for her as they do for other kids. I am not a failure as a parent. I couldn't have prevented this. People will think what they think and we will have no control over that. And she will be fine. We will be fine. We will gain the tools we need. She will be successful. She will be capable of having deep, meaningful relationships with friends and peers. She will rise above the added challenges that she is faced with. She is a conqueror. She is a tiny woman of Christ.

And it is a blessing to know. Now that we know, we can see these "overreactions" to seemingly average life circumstances are not just naughtiness or the result of poor parenting. We can finally get the tools we need to help her through life without the screaming and kicking and emotional hardship. We can aid her to a life of success. (That's the hope, anyway!)

Because, you see, there is nothing really wrong with my little girl. She is brilliant. She is intuitive. She is kind. She is compassionate. She just feels deeply. She is sensitive. Sensitive to everything. And sensitivity is a treasure, not a disability. 

But we need to prepare her for a world that doesn't have an extra half hour to talk her out of a panic when a train passes by and it is too loud and she falls to the ground in a heap. Acceptable at four, perhaps. Never at 44. The world doesn't care that she gets physically ill from the smell of coffee brewing or a public restroom. The world doesn't care that the sounds of children playing and laughing and squealing make her anxious and therefore, she would rather just play alone. The world sees anything aside from normal as weird. And the world doesn't have time for weird. The world is hard on us all, and as a Mommy, it's my job to make sure she is ready.

So, here's to being brave enough to admit that my little girl has SPD. Here's to being brave enough to admit it out loud, to others, but mostly just to myself. Here's to being ready to leap over hurdles that often seem too high and too wide and too impassible to even begin to run at. Here's to hours of occupational therapy and to gaining "frustration coping skills". Here's to patience neverending. Here's to sore knees and dewy eyes and years and years of prayerful parenting. And here's to celebrations over little victories like 4 bites of chicken (even though the white part is stringy).

And thank the Lord for little victories that make life so much easier as she get's older. Nothing makes me happier than glimpses of a future where Rosaline's heart and her desires can overcome the chaos of her confused senses.

"Rosaline, please sit down and eat your breakfast."

"Mommy! I can't! I'm too uncomfortable!!!"

"What's uncomfortable, Rosaline?"

"My back!" "Ok, it's a new shirt and it is just the scratchy kind. Should we change your shirt?"

"No, Mommy. I love this shirt. It's just so uncomfortable."

"Would you like to be comfortable or would you like to wear the new shirt?"

"I want to wear it."

"Ok, but no more tears. Let's eat breakfast."

"Ok, Mommy."

Victory.

A Prayer for Rew

My oldest is four. Newly four this March. She's brilliant. And I'm not just saying that because I'm blinded by a Mother's Love (not that I would know, since I'd be "blinded" and all...) but I think she's especially bright. She is observant, witty, and gut-bustingly hilarious. She's sensitive and emotional. She's outspoken and never shy. She will tell you like she sees it. (And she's usually right.) I told her the other day that it isn't nice to tell other people what to do. Her response:
"Why not?"
"Because sometimes people like to figure out things for themselves and they don't need our opinions."
"Well, what if they're wrong?"
"They still won't like to hear you tell them."
She thought about that for a long moment and replied, "I think I'm going to tell them anyway."

That's my little Rew. Strong. Bright. Witty. But painfully and brutally hard on herself and often times overrun with emotion. And it hits a little too close to home. And it breaks my heart.

I worry for my little Rew. I worry that she will always be so hard on herself, she will be afraid to try new things because she will be worried that she won't have them perfected the first time. I fear that the shame of self-disappointment will leave her feeling undervalued. I know all too well the frustration that comes from pushing yourself and pushing yourself and still falling short of some unattainable goal. And it hurts. And I don't want that for her.

And, oh, her sweet, tender heart. She is emotional. She is like looking in a little mirror sometimes. Everything affects her. She feels everything deep down to her soul. When she is happy she is happy from the tips of her toes to the ends of her golden hair. And when she is sad, disappointed, frustrated, ashamed, surprised, embarrassed, angry...well, she's a mess. She's on the floor in pieces. Inconsolable. Flailing and screaming these screams that have every head within a 500 yard radius turning and looking and judging. She can't form words. Can't form thoughts. She's out. of. control.

And it hurts even more. Because I know that she isn't bad. I can honestly say she is the least malicious child I know. I know that she is sweet and caring and sensitive and brilliant. I know that she is probably crying because she tried hard to get something right and she is feeling upset at herself--like the other day: I found her under the kitchen table covering her head and screaming hysterically. I ran up to her and pulled back the chairs. I crawled in beside her and wrapped my arms around her and said, "What? What's wrong? Are you hurt? Tell me what happened. Tell me!" And she just screamed and pointed into the living room. I scoured the room, looking for something out of place. Did she drop something and break it and now she's ashamed and afraid she'll be punished? Did a toy she was playing with fail to cooperate in her make-believe game? Is she out of juice and screaming instead of calmly asking for more? Every option was highly viable. But I couldn't see it. I couldn't see a problem. The toys were exactly as they should be. Her juice cup was full. Little Anna was sitting on the floor, staring wide eyed at the scene unfolding before her one-year-old eyes. After a solid four and a half minutes of hysteria, I ran out of patience. My quiet voice all used up. My ears ringing with shrill screeches. I raised my voice, "Rosaline! Stop it now! Use your words and tell me WHAT IS WRONG???" She looked at me with shocking blue eyes and screamed back, "SISTER!" as she pointed to the quiet and calm little creature at my feet. It was then I noticed, she had tried to put her sister's shoes on her pudgy little feet and accidently gotten a few of the toes stuck on the outside of the sandal strap. Clearly, little Anna was unhurt and really unfazed by the entire event. She idly chewed on her dolly's hand while I removed the shoe. I climbed underneath the table again and scooped up this shaken and emotionally spent four-year-old and rocked her as I calmly showed her how to unstrap the sandal first and place it on Sister's foot properly. Her sobs subsided as I rocked her slowly and she held me tight. "Why were you crying, Rosaline?" I asked. And finally she could respond, "Because I couldn't put Sister's shoe on right. I thought I hurt her foot. I thought four-year-olds could do big girl things on their own. And I can't."

And my heart broke all over again. Because no one told her she had to be big enough to put Sister's shoes on. And no one is pressuring her to be perfect. And Sister wasn't hurt or scared or even upset, but the fear of those things sent my sensitive little girl into a panicked fit that took half an hour to recover from. A fit that recurs every few hours or if we are lucky, every few days. She is just so so sensitive that it is physically painful for her. Her emotions are so acute that her heart breaks over matters that are seemingly inconsequential for most people.

And it scares me. Because I know the world will not have the patience for daily (or hourly) meltdowns. I know that her peers and teachers and coaches will not be in tune with her like I am and they will misunderstand her outbursts as tantrums or naughtiness and not cries for understanding and patience. But my job as a Mom is not to follow her around for the next 85 years and explain to everyone around her that she isn't being bad, she's just feeling really big feelings and she's not sure how to process them. My job is to prepare her for a world that, sadly, doesn't care how she feels. If I could go out and change the world for her, I would. But I can't. So, I need to give her the tools that she will need to get through this life thriving. And I don't know how to do that. I'm at a loss. I'm ill-equipped. I have a tough enough time harnessing my own feelings, much less managing someone else's. I feel like I don't have any answers as to why she is wired the way she is wired, high strung and emotionally volatile. I don't even know if there are any answers this side of heaven.

So, I pray.

Lord, thank you for my little girl. Thank you for creating her to be strong and wild, intelligent and capable. Thank you for instilling in her a strong work ethic. Thank you for giving her a sensitive spirit. I am so blessed to be her Mommy. I ask now that you would grant me wisdom as I raise her in You. Continue to fill me with patience, because too often I feel like I've run out. Grant me forgiveness when I fail her and endurance when I feel I'm about to. Please bless our home with peace and happiness. Let the words that come out of my mouth be uplifting and encouraging to Rosaline's little heart. Give me the tools I need to teach her how to be a woman of Christ. Help me show her, through my actions and words, how to be filled with sensitivity and compassion as well as self-control. Speak your kindness through me during the long nights and loud fits. Guide me and show me how to better love her everyday. Give me peave and comfort during these seasons of relentless doubt. Thank you again for the precious gift of motherhood and for the brilliant little lights you've placed in my life. I love you, Jesus. Amen.

And I pray again a verse over my sweet girl. To be my mantra during the shrillest moments with her:

"Grow in the grace and knowledge of Jesus Christ. And to Him be the Glory Forever. Amen." 
2 Peter 3:18

Dear Rosaline

Dear Rosaline,

You're four years old. Four. That's a lot, huh? You are such a big girl now and I am so very proud of you. Four years we've been together now. Four years of laughter and light. Four years of dancing and twirling and pink tutus and bright blue eyes. Four years of questions, and sometimes, doubts for Mommy. Four years of struggling to get things right. Four years that have been the best of my life.

Sweet Rosaline, I want to tell you thank you. Thank you for making me Mommy. This is the best job in the world, even when it's also the hardest. I'll never forget the first time I held you. Five pounds of radiance, two days old and brand new to me. I'll never forget the way my heart felt: heaviness lifted, joy like I never knew existed, fear and doubt that I hadn't seen coming. And when you opened your eyes and they met mine that first time, my soul sighed, Oh, there you are. I've been waiting for you. And the enigma that had been my existence until that precious moment settled. And my puzzle-heart fell into place. And I knew, this is why I was here. I had always been waiting for you. I was made to be your Mommy. So, thank you, Little REW, for making me Mommy.

Thank you for teaching me. You've taught me much more about life than I've taught you, I think. It seems backward and almost unfair, doesn't it? The Lord gave you to me to teach and lead, not the other way around. But, no. You've taught me about myself, about life, about patience, about choosing peace over chaos. Thank you for teaching me to look up when all else fails and the crying just doesn't stop and the joy doesn't quite seem to exceed the pain. Now, when you are kind to your sister and polite to your teachers and creative and excellent in whatever you set your mind to do, I see all the efforts and prayers paying off and I know you've taught me a great lesson in perseverance. You've helped me grow up over these last four years while you were growing into such a wonderful little girl. I have a feeling you'll teach me much, much more in the next 14 (and 24, and 54...) So, thank you, my Punky-Doo, for teaching me so much. Please, never stop challenging me to be better.

Last, I'd like to say thank you for teaching me about love. I never knew what unconditional love really looked like until I met you. But the moment I saw your perfect, tiny face, I understood. Now, you know I am imperfect. I lose my temper and raise my voice sometimes. I don't always act like the best Mommy. I am sorry for that. But I know I've done one thing consistently right in these last four years, I've always always always loved you. I am always for you and your sister first. I can't help but be head over heels in love with you. When you cried all day and all night for three whole months after you were born, I loved you. When you grew so fast it took my breath away, I loved you. When you walked and talked and changed and became this gorgeous, fascinating, sensitive individual, I loved you. When you made me laugh with your quick wit and cunning humor, I loved you. When you stomped your foot and told me no in front of our guests and made my face and ears burn red, I loved you. When you hugged me tight and told me I was your best friend, I loved you. I have always loved you. Always. Every moment. The easy ones and the astonishingly difficult ones; I've loved you. And, you know what, precious girl? I always will.

So, thank you, Rosaline Elizabeth. Thank you for teaching me all about love. Thank you for being my first precious girly. Thank you for being the brilliant and funny, sassy and stubborn, sensitive and loving, creative and kind little girl that you are. Mommy loves you so. Happy Birthday, baby girl.