Sometimes feelings lie

Those of you who know me well know that I go through seasons of self-loathing in my life. I think that everyone enters phases where they feel like the sun is hidden from them. To be frank, I talk a big game. The personality I present to those around me is so much larger than the person that I truly am. I drive myself to be and to do more than I am comfortable with. I press myself to go outside of my comfort zone. I encourage others when I am wholeheartedly discouraged with myself. I help others when I feel helpless and I put on a brave face when I am terrified of my own voice. I talk like I am in control and I know what is going on when, really, I haven’t got a clue. I lead others… sometimes when I’m positively lost myself.

Today, I’m silencing the negativity in my mind for a moment. Any other day I would look at a picture of myself and cut myself down. I would magnify every flaw and become angry with myself. But no, not today. Because right now I am choosing to believe positivity and I’m reminding myself that I *am not* a failure.

I'm looking up!

Tonight I am looking at a woman whose eyes are full of hope and optimism. I see someone who is looking forward to tomorrow. A mother who loves her children fiercely and whose heart is overwhelmed with pride. I am looking at a wife who can say, without a moment’s doubt, that she made the best decision of her life on the day that she said, “I do.”

Tonight I see a woman who has experienced the pain of loss but has not been defeated. I see someone who has been afraid but has not let her fears immobilize her. I see a woman who has held secrets in her heart to protect the ones that she loves. A woman who has known the heartache of abandonment but chooses still to love. I see a woman who lost her baby, alone, in a public restroom because her body wasn’t strong enough to carry her sweet, tiny child. I see a woman who vowed to never cry another tear unless it really meant something because life is too short to allow herself to be swallowed up by her grief. This woman is strong, and she is brave and she is kind. She is is broken and she is beautiful. She has seen tragedy but she holds onto hope. In this woman’s eyes I see peace that transcends the harsh realities of the world in which she walks. I see a woman who looks up to the heavens with triumph because she knows that death and hell and the grave have been defeated by an omnipotent creator. Tonight I am looking at a woman whose eyes can pierce through veils of deception and not allow herself to be overcome with fury. I see a woman who has let go of hatred and made a conscious decision to move forward in her life, seizing the opportunities she is given with gratefulness. I see a woman who is not afraid to open her heart to hurt because she knows that pain cannot consume her and love is stronger than darkness. I see a woman who has learned to find peace in the midst of the chaos that surrounds her every single day that she draws her breath here on this earth.

I see me.

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So Much Left Unsaid

My last post went in a completely different direction than I had initially intended. It seems that is often the case in creative endeavors, or at least in the creative endeavors that *I* undertake. I sometimes joke that I have crafter’s ADHD. Typically when I make the joke I hesitate and fall just short of adding the parenthetical “No. Really.” I sometimes hope that people assume I made the joke because there is some form of truth to it, other times I hope they un-hear what I just said.

In reality, while I predominantly am a very grounded person with both feet firmly planted on terra firma and a rather steady grasp on reality, I am also more flighty than a bird. In a constant pattern of migration. Or perhaps I am like a crow in the respect that if I see something glinting in my periphery I’m thrown completely off course, “Oooh, shiny!”

Being the bearer of such knowledge, you will understand me when I tell you that my thought patterns float along like an amoeba carried by the ebb and flow of the natural tide, a prisoner caught between the pull of the moon and the gravity of earth. My very clear intentions may be to bake cupcakes when I enter the kitchen but my family might end up eating fleur de sel caramels instead. I want to write about my day but I end up writing about the beauty that comes from fragmented sorrows. My attentions are diverted more frequently than not.

With that “disclaimer” (?) in place, I’d like to share with you what I had initially intended when I talked about embracing a circumstance in entirety. I wanted to make clear my feelings on my daughter’s recent diagnosis of Asperger’s Syndrome. I don’t know that someone who has not walked in my shoes can fully appreciate the scope of what I am feeling so perhaps it is futile to attempt to explain it to you. I shall soldier on, in any event, because it is my stubborn nature to do what I choose, no matter how unreasonable or how inconsequential the results may seem. You see, we are all complex creatures with unique life circumstances that have shaped our perspectives and natural thought processes but there is a chance that there is someone else out there who has faced situations and feelings similar enough to mine that maybe, just maybe, they feel a hint of what I feel. And it is comforting to know that there is someone else in this sea of humanity that can identify with you. It makes you feel strangely connected, as if by some invisible thread, and that tiny little scrap of invisible means that you’re not alone. And not being alone makes silence more tolerable. Not feared. Sometimes welcomed even. Because… well… you aren’t alone. Never completely alone.

So. Back to it. I’ve been contacted by several people in person, through the phone, email, social media, etc. regarding my daughter. I can only surmise that a desire to be supportive is their motivation but their actions land squarely in the comfort arena. I don’t really know how to explain it. It almost feels like people are trying to comfort me as if I should be in mourning. I’m not insulted by any means, but I find myself reciprocating comfort to them more than anything. I don’t feel the need for a shoulder to cry on.

Let me be implicitly clear on this: My daughter is perfect. She was fearfully and wonderfully crafted in the hand of the Creator and is beautiful in every way. There is not a single nuance of hers that I do not fully embrace. She is exactly what my family needs and God gave her to us because we are exactly what she needs. She is strong, bright, creative. She is an exceptional child, uniquely gifted. Her gifts are accompanied by challenges. Overcoming those challenges is not only strengthening her, it is making us a stronger family. It is making me a better parent and a better person. What others view as imperfections are the dimples and dangly parts that make her fit perfectly in the puzzle of our family.

Who is to say that my daughter is “different”? Like snowflakes, no two people are exactly alike. We are quick to acknowledge the differences in our genetic composition but even though we quip that “Oh, every child is different!” we hope that our own are as “normal” as possible. If every child is unique than doesn’t that mean that being different is being normal? The very essence of our differences is what makes us normal. They make us believable and genuine and… human. (The Stepford Wives, anyone?)

My red hair lumps me in with the ginger crowd. Your infinity scarf and Uggs lump you in with the trendy crowd. My neighbor’s oversized glasses and siphon-brewed Valhalla coffee served by a man wearing pants so tight you can easily observe that he has no testicles puts her, right along with her barista, in with a bunch of coffee-snob hipsters. My daughter shares traits with a group of people that have Asperger’s Syndrome. She can identify with some amazing people. How is that a bad thing?

The drawback comes in failing to recognize and acknowledge her needs. There is a tremendous benefit that I have been afforded by affirming that my daughter has Asperger’s. I understand her better than I ever have before. I am learning to communicate with her in a way that gives her the ability to understand me more than she ever has before. We are developing intimacy in our mother-daughter relationship that we are experiencing for the first time.

So don’t mourn for me. Don’t try to console me or comfort me with well-intentioned, over-used phrases like, “It’s going to be ok.” or “You’ll make it through this.” Everything is ok. And we are making it though this—whatever “this” is.

Embracing my daughter’s diagnosis of Asperger’s Syndrome seems perfectly natural to me. I have been given an incredible gift; a glimpse into her mind. Parents sometimes joke about wishing that children came with an instruction manual; mine didn’t come with a manual but there are some incredible people who have documented the commonalities of individuals with Asperger’s and made their observations available through books and websites and blogs. These resources have afforded me a heightened awareness of my little girl’s psyche. It’s like capturing a glimpse of what’s inside a rose without having to tear the delicate flower apart, petal by petal. What a fantastic opportunity for me. What a tremendous gift for her: Mommy can finally understand.

For those who are joining us on this journey of discovery, I am grateful. Grow and learn with us. But don’t ever look back. Don’t wish for what isn’t and don’t mourn for what is. Take your time and enjoy each rose: its beauty, its fragrance, the mysteries it holds. Embrace each moment and thank God for it. When I fall short, remind me of my words. When you stumble, I hope to be there to help you on your way.

Shrinking?

Tomorrow I will take my oldest daughter to the psychologists’ office for her very first counseling appointment. I have very mixed feelings about the whole experience. And it hasn’t even happened yet.

With all new experiences there comes a certain level of apprehension and curiosity. I really haven’t the slightest idea what to expect. Will they greet each other and do a puzzle together? Is tomorrow really just a meet and greet? I mean… she’s nine. She’s not depressed, not violent. Not anxious or manic. I shouldn’t have the butterflies that are fluttering around and tickling my insides right now.

I suppose that I carry a certain stigma with me that may be quite old fashioned. The “if-it-ain’t-broke-don’t-fix-it” stigma. The one that tells me that seeing a head doctor means that something is broken inside. That you’re mentally unstable. That you’re not strong enough to pull your crap together and hide the garbage that no one else needs to see. I may not have grown up in the 50’s but I remember hearing women whispering juicy exclamations of  “I heard that So-and-so is seeing a shrink!” in the same tones that they shared tidbits like, “Did you hear that they are getting a divorce?” and “I always knew that her son was GAY!” Excited whispers. Whispers that sounded forbidden and dirty and tantalizing all at the same time. The kind that you wanted to share with the first person you could lure into a private conversation.

Those conversations are long gone but the impression that they left me with is still the same. Just as much as the idea that pink is for little girls and blue is for little boys. Society has come a long way as medicine has adapted but I don’t know if my entire being has progressed. My brain says that this therapy will help her overcome some of the challenges that have come with her gift of being an exceptional child with Aspergers. But my heart tells me that she is such a vibrant child and she isn’t “broken”. I suppose that I haven’t fully connected the idea that seeing a therapist doesn’t have to be a healing process. That sometimes seeing a therapist is as simple learning new things.

Aspergers isn’t just something that affects my child. It has affected her for nine years. Learning about her diagnosis has not only taught me about her and helped me to understand her better but it has also taught me things about myself. This is a journey that I am happy to share with my daughter. A journey of exploration and discovery, understanding and healing. I wouldn’t trade our experience for anything else on earth.

 

Times of Transition

For years we have worked with our daughter as she has struggled at school. She flourished academically but interacting with other students was a sore spot for her. It has pained me to watch her interactions with her peers. She always seemed to be on the outside of the social arena, sometimes peeking in, more often though she wandered away to be by herself. I’ve often referred to her as my “loner” or “wanderer”, my “daydreamer” or my little “woodland nymph” because she seemed to feel more comfortable on her own in the woods behind our home than she was playing with the neighbors or her siblings.

I’ll never forget the day that I spoke to her about paying attention in class, “Your teacher says that you seem to have a hard time paying attention; that you’re daydreaming a lot lately.”

She hotly responded, “She’s lying! I’m not dreaming, Mom–I’m WIDE AWAKE!”

My sensitive little flower took things so literally, and often to heart. At school she went to the counselor to get some tips on “making better choices” by using the Kelso Wheel. Initially, we did see some progress and she seemed to gain confidence. After a few weeks she had regressed and was melting into puddles of tears daily from the verbal bullying of a bossy classmate.

As a parent I have often felt overwhelmed by a feeling most easily described as failure. Obviously, my little girl was struggling to make friends. She lacked what most would call common sense, even for her age. She was prone to fits of nearly inconsolable tears. Throughout her early school years something as simple as the flush of a toilet in a public restroom would terrify her to the point of near hysteria. A bit of a conspiracy theorist–she thought everyone sought to insult her. She could bore someone like no other; as Marilla Cuthbert once said of Anne Shirley, “She could talk the hind leg off a mule”, all while staring at her shuffling feet. I felt like I had done an incredible disservice to my child. Had I coddled her too much? Had I been too strict with her? Had I not taught her manners ?  Too many computer games? Not enough social interaction? Where had I gone wrong? Could I correct my actions, adjust her upbringing and salvage her frail feelings before the rigors of middle school and high school arrive?

After years of questions, last week we received one answer. One answer that opens the doors to many answers… to a whole new world of possibility for our little nymph. Our daughter was diagnosed with Asperger Syndrome. In the days since her diagnosis we’ve already heard from people who “knew it all along” (these are also the people that “have known for months!” when a woman announces she’s pregnant and in her first trimester). We’ve encountered people who were aghast and recommended a second opinion. People who have consoled us with well-meaning words of encouragement like, “She’ll outgrow it” or “It’s just a phase”. Some have looked at our daughter’s diagnosis like a death sentence. I look at it like a light at the end of the tunnel. A very long, very dark tunnel. This has given us hope. AS kids can respond rather positively with therapy. They can integrate into social circles with greater ease after learning how to decipher things like body language and other social cues. Something as simple as learning the meaning of common gestures can give someone with AS an incredible boost to their confidence.

We received a wonderful book in the mail yesterday, Can I Tell You About Asperger Syndrome? A Guide for Friends and Family by Jude Welton. After reading it I sat down with our daughter and explained a little bit about Asperger Syndrome and asked her to read the book. It’s a quick read and half an hour later she came downstairs, book in hand, with tears in her eyes. Frankly, I was worried. When I asked her why she was crying she replied, “I’m just so happy, Mom. I finally found someone else that thinks just like me. This is just a Really.Good.Book.” For the next twenty minutes she battled a lump in her throat and a quivering chin. The tears spilled out of her beautiful brown eyes several times and she asked to read the book again. She’s read it three times since and even tried to sneak it to school in her backpack this morning.

To the dear friend who purchased this book and had it mailed to us, thank you. From the bottom of my heart, THANK YOU. Through everything, God has been faithful. I am looking forward to the wonderful things that the future holds for our shining star.

Standards, Percentiles and Equivalents

Yesterday a team of four speech-language and therapy evaluators came to my home to take a gander at Captain Crazy Legs who, early on, had some hearing difficulties and has been a little bit behind on the communication spectrum. They ran him through a battery of tests, which were more like a series of fun games and activities for a busy toddler, and within moments of completion I had his personalized assesment in my hot little hands.

I will start off by acknowledging that, as a parent, taking the initial step to have a child evaluated for any delay or disability can be somewhat intimidating. You are looking for answers, wanting to be reassured that your child is “normal” or you are desperate for someone to affirm your fears that your child is needing intervention–alleviating your guilt for thinking that something might be “a little off” in your little one. Just knowing that you can help your child can be so empowering… on the other hand, not knowing how to help can be very frustrating, for you AND for your child.

Leading up to Crazy Legs’ evaluation I tried to make light of it. I didn’t mention it to our older children and we took the morning of his eval pretty slow. He slept in and was in his favorite pj’s when the crew showed up. A  few stray toast crumbs lingered at the corners of his mouth and he was tooling around with his newest toy car.

He played, stacked blocks like a pro, searched for Cheerios on command, scribbled on papers for the lovely ladies and stood on one foot. At the end of their hour long visit the therapist/evaluation team affirmed my concerns, telling me that my son was about 7 months behind in his communication skills and lags in all other areas as well. His skills ranged from an age equivalence of 18 months to 23 months, with most areas hanging right around the average 20 month old child. Then they informed me that he does not qualify for any intervention or therapy services.  On a percentile chart, his scores averaged to 29%… whatever that even means.

Before our team left I was given a helpful handout (note: sarcasm) titled “Shaping Communication”. The handout has some really great suggestions like:

Set Clear Expectations: …”I expect my child to talk.”

Play Dumb: Shrug your shoulders

Do Something to Get Something: …child has to give you the desired response to get the desired item.

Be Consistent: NO communication, NO item, EVERY time

I suppose my frustration stems from the lack of empowerment I had hoped for.  I am sure that every effort afforded to these women was made to help my child to the fullest extent that their program allows but I was left with more questions from their visit than I was given answers. I wanted to know how to help my child; the one sided sheet of tips I was given is more likely to help me paper-train a dog or shake off a pesky tourist. I want my child to feel like Mommy wants to help him, not that she doesn’t care enough to make an effort to understand him. I don’t want to pacify him, I want to encourage his growth and development. I want to foster independence, not dependence. I want to teach him to think creatively, not to act like a robot that pushes a button to elicit a response. Yes, I want him to behave. There is a difference between being strong-willed and having free-will.

Have you ever been in a place where your child was explained to you in terms of averages, percentiles, standards and age equivalents?

>Level Up!