April is Autism Awarenss month but how can I (little me) create awareness

When I say little me, I am speaking physically, mentally and emotionally. The thought of someone under 5 feet tall, emotionally unstable and mentally, well not a PhD candidate. I often wonder, "How do little people make a BIG difference"? History is full of small people making loud noises, huge changes and significant strides into making our world a better place.  

Awareness= knowledge or perception of a situation or fact. 

OK! So.... if all I have to do is have knowledge to bring awareness then even a little person can do that, so my post is about passing on the knowledge I have learned from raising a brilliantly feisty and awesomely stern young women with Aspergers (well now called High Functioning Autism or whatever other diagnosis the current doctors wants to attach to her).

What we tend to focus on most, is ALL the stuff we read and hear about what she can not do or the issues she has to deal with, for example: pick up on social cues, handle change, eccentric behavior, reciprocity, gross motor coordination and controlling emotions. 

When I look at adults and evaluate peoples movement and reactions, I realize that we all have navigated through life figuring out what we are good at, what makes sense, and where we fit in. If we try something that doesn't feel right we tend to move in another direction. We eventually end up as an adult that has leaned into our positive traits and found others that have the same or similar interest. Some times our path is directed because so many people tell us we can't do something or remind us of our failures.  

 

The same is true with any child that struggles in different areas of life, they begin to figure things out and migrate toward the areas that give positive feedback. As a parent, this makes my job a little clearer, I am not trying to force my child to overcome obstacles by trying a little harder, go to more and more therapy to fix something or constantly remind my child of what they can not do.  

My job is to provide a pathway for exploration so they can discover WHO they CAN be.  

Our controlled environment has its daily challenges, like every other parent we have found what works best for her today and welcome changes as needed. Opening our mind to the revolving door that constantly swings with her mood and mustering up all the patience to be damage control task force 24/7.  Giving up the unrealistic dreams that so many times we impose on our kids placing them in a box with boundaries of what we think they should be or do. The would of, should of, could of- syndrome of parenting no-no's. 

Filling in learning gaps with endless options makes a dim future seem bright and exciting and it may be as simple as turning over the confusing picture to find the imprint of the crayon made an abstract masterpiece.  There are two sides of a coin and of a child- the one we choose to see and the one the world sees or maybe even they see in themselves. If we ourselves can not see the other side it will be hard for them to find a path right for them. If we all ended up cheerleaders and quarterbacks the world would be missing the magical sound of the band. 

 Let them all play the sound of their own tune loudly, from the mismatched clothes that don't really fit right or the ear muffs that fade out the sound to help her cope, or the sweet way she hugs not to feel the discomfort of touching. Noticing and enjoying the sparkle in her eyes when the reptile collection adds a new member or a friend announces they love lizards! The very thoughtful notes that take my breath away explaining what she couldn't verbalize. The hat she wears every night to sleep because she says it helps her mind rest.  
The pink sunglasses sometimes see blue, OH how I love BLUE!

Pain + Growth = Intimacy with God

The walls closed in, like sand being poured over me, as I was being buried alive! The elevator door shut and I stood alone in my panic, I felt my breath begin to shallow and I slide slowly down the wall to my knees.  The realization of leaving my angel in THAT place was incomprehensible and the faint sound of her cries could still be heard. 

I have no idea how I made it down from the 5th floor of the hospital, to find myself at 2am walking down the sidewalk looking for a familiar face to give me a ride home.

The apprehensive smile looking at me from the window of her car reminded me that this was my reality. I wanted to run back inside and begin screaming "I want my baby back".  I was missing something, I felt so empty without her but on the other hand I knew deep inside I needed to let go tonight, trust and get some rest in order to face the new morning that would awaken me in only a few hours. 

The silence between us on the way home said what two moms didn't need to say, it's unnatural to leave your child in the hospital but it is instinctual for a mother to seek help for the needs she can not meet. Instinct wins over emotion this time and restoration is needed to survive the unknowns. 

The new dawn brought more questions and uncertainties, my body moved through the motions as if I was a puppet, being controlled by the man upstairs.  He gently moved my arms and legs in sync to help me take one step in front of the other, he gently pulled the strings up to place a smile on my face at work and he helped open my tired eyes to drive back to the hospital.

The gown wrapped several times around her as I heard her faint voice "MOMMYYY", oh sweet Jesus..... I wanted to run across the floor and wisp her up into my arms. How did we get here? Were the police flashing lights and ambulance ride the night before a nightmare, or is this now part of her survival story? 

 

She had a calm to her that I had not seen in awhile and it put my soul at rest. Where would this new road take us? The next step of our lives is not always visible or accessible, its just that leap of faith transcending darkness into light. 

"Mom, I really miss Skyler".

Traveling back and forth day after day to the hospital learning, talking, and wondering how this new direction would effect our life and the life of my son. 



He has been so courageous! The sound of his plea the night before "Mom please stay with me, she scares me sometimes". We both know she loves us more than she is capable of expressing and her intense emotions launch her into places she doesn't want to go but the truth be told I am scared too and in our fear we have reached out for help. 

Fear, a powerful emotion, can help us take action!

 

The connection between what I am learning to help my daughter has also helped me begin a new journey. 

The steps for helping kids that are on the cliff of disaster is the same road to help anyone seeking intimacy with God. I listened to the counselors talk about how to connect with different kinds of feeling, identifying the why's of reactions and how to express yourself in hard situations. They taught her a self care plan of sitting quietly EVERY hour for 9 minutes to tap into your feelings.  Spending quality time with oneself to build a constructive pattern and with that consistency it can then be used in time of crisis.

WOO! It hit me..... if I would stop for 9 minutes every hour and spend time reading the word of God, praying or listening to his direction for my life, I would also be able to have a strong foundation in time of need. This is when you realize that in the midst of pain comes a parallel of growth and change. Healing and hurting on separate sides of the railroad track moving in the same direction toward a final destination, wisdom.  

We still have an enormous challenge in front of us and I struggle daily with the burden of caring and making the right decisions for her but with a foundation built on solid ground I can withstand the storm. 

The day she came home!!!!!

It is amazing to re-read this almost exact experience  
Déjà vu! 

(Read October 22, 2008 Blog Entry) 

Making room for different can open a window to WONDERFUL!

She is only 9 years old..... nine years of living a life that has been surrounded by love, commitment and compassion. It is hard to comprehend the grey areas that turn to black for her when nothing visible is the cause. The darkness that grows in her is more than circumstantial and is exasperated by uncontrollable environmental factors.  What is a mother to do when she can NOT control her daughter's environment and she fears that the darkness will creep in, take a hold and never let go? How can I stop the waves of her struggles from pulling her under?

The memories of my own life are constant reminders of how real depression and anger can be, how debilitating and exhausting the fight is to keep looking up. What tools can be provided and taught to manage the cracks and what kind of supernatural glue can keep the pieces from breaking apart? 

Her voice became a faint whisper as I leaned in across the bed to hear,  "Mom I'm scared I may hurt myself", this unsure, helpless statement made my fear a reality.  

The darkness is trying to defeat her but it will have to go through me first. Immediate plan of action-fall to knees in humble, helpless prayer. Releasing what I have no power to control and letting go again and again of the idealism that a perfect life can fix a imperfect brain-that all the medication, therapists and doctors in the world may fail but the truth I grasp onto with all my might, is embedded in the one who will never fail.

If she leaves this world sooner then my time line for her,  I will know I have fought a damn good fight and I am reassured she will await my arrival in the glory of God's loving arms. Until then, the battle we rage is different then physical disability but similar in the challenge of the unknown. Mental health is the hidden disability that plagues so many; some have found a mask to wear that keeps them safe, others are labeled and others hide in isolation. The world judges from the outside and when the disability is not seen at first glance we make no room for error, weird or different. 

Laughter is a rare treat not be taken for granted, peace is a luxury not to be exploited, joy is the thing we search our whole life for and acceptance is the one thing that makes the heart keep searching. Making room for different can open a window to WONDERFUL!

I love the way my son LOVES my daughter!

 I think to myself, it can NOT be easy for him to ride the roller coaster of instability, the ups/downs of his sister's fluctuating moods.  It can NOT be easy to always be careful when she becomes upset or hide when she is angry. It can NOT be easy to listen to the screaming and it can NOT be easy waiting and waiting and waiting for her to get dressed. 

Where does that kind of patience, endurance and love come from? She says sorry for the thousandth time for hurting his feelings and in his sweet voice "its OK Skywer"! It can NOT be easy accepting apologies over and over for the same thing. It can NOT be easy to not hit back or use words that cut to the bone. Where does that kind of tolerance come from? Is it learned or innate?

How does he keep giving in and giving up to her ideas and tactics without wanting his voice to be heard or his turn? It can NOT be easy to get less time with mommy and daddy, less attention to detail  less direction...... less less less may be what helps give more more more. The spirit of a patient, compassionate and selfless soul is hard to teach. 

Will the time come when staying, listening, giving and being THE kid that gives in be too much come to an end?  Will the bond that was once there be able to sustain more years of sensory meltdowns and compromise? 

My mind floods with ways to intervene and control the environment, to try and provide some kind of stability, but is this the BEST way? Does having a stable, perfect life produce stable, perfect kids? I know the answer, but does not stop a mom from thinking it. 

My fear shows its ugly head by allowing what could happen later change how I parent. Can I release the apprehension of the future and live in today? Loving how my son loves my daughter, fostering consistent boundaries, providing opportunities for his growth and acknowledging his temperament to compromise. 

Today I will enjoy my son's easy nature in which he can change plans in a moment without a meltdown, celebrate his ability to amuse himself during the waiting and thanking God for a son that loves his sister well right now.  

I do not have a manual for the rest of this story but I have an idea for today, speaking truth, being open, allowing for chaos, moving toward simplicity, striving for more laughter and releasing my own fear and tension of the uncontrollable outcome of tomorrow. Trusting the Lord that gave me the gift of motherhood that he knows Best. God's got this, he already has the blue prints and I need to rest in his assurance.

I LOVE the way my son loves my daughter and I pray it never changes, that he will learn HOW to love deeper because she needs him to LOVE her just the way she is. 

Kendyl Clayton Fisher may your heart follow the one who wrote the book on how to love and may your life be a life that others will say "He loved us well". 

Finding Contentment

Can you actually find it, is it taught or learned?


I am not an expert by ANY means on giving advice concerning contentment or anything else for that matter so rest assured that even as I write this, I have a daily and life long battle of being truly content physically, mentally, emotionally and spiritually.

I was asked to give a self esteem talk to a group of 8-11 age girls and I was NOT prepared for the task before me. What I had been taught all my life about contentment was no longer enough to battle the pressures of today's world. I talked of course about learning to be content with being vertically challenged, that being a grown adult under 5 feet has its ups/downs, the fact that I had brown eyes and curly hair. It was very naive of me to think that these things were anything close to what these precious souls had to compete with. One girl started talking loudly that you could wear contacts, dye your hair, get a breast augmentation, buy high heels and on and on she went about all the things she could change to FIX what was wrong with her. My heart started pounding inside my chest what could I-little me, say to make a BIG difference. What if this sweet child could not afford to perform all these acts of self improvement or after she did she still wasn't content, then what? 

Think with me for a moment, True or False we want something, we then work, ask, steal, manipulate or create that object of our affection. Are we then content because we have worked so hard to obtain it and feel satisfied?  

Or 

If we think before hand, I really want ..... (you fill in the blank) so I ponder WHY do I feel the need to have this? Am I assuming it will bring me joy? Am I replacing a empty hole inside? Do I think people will love me more or want to spend time with me if I have this or look like this? You answer the above questions honestly and realize its not a need per say, just a desire that is possibly unhealthy at this moment because of the motives and live without it. Does this bring contentment because you have mastered your desire?  

Ok!!!! you have learned to live without A, B and C and your on a path of right motives and working hard for the right reasons and you end up acquiring all the above things you once desired anyway. Maybe in a different size or color but still in the same ball park so NOW are you content?

 A quote from my mom when I actually started listening to the things she said, impacted me.
"I saw this dress I really wanted today but I didn't get it and it wasn't like in the past when I would be resentful because I could not have what I wanted but for the first time there was something more important that I wanted to do with my money that allowed me to walk away being content with what I already had".  
AWWWWWW value in something more significant allows a seed of contentment to breed inside us. 

It comes up all the time-how do I learn to be content. Contentment vs Happiness vs Joy, it may not be as easy as adding or subtracting that equals the perfect end result. None of us are exempt from the thoughts of wanting what we don't have in any area of our life and we manifest the symptoms of discontentment different then others. Some internally struggle some externally scream look at me. It is highly probable that all issues of discontentment are initiated from that lovely word and feeling we pretend not to have, FEAR!!!! 
Fear of maybe losing what we once had or working so hard to achieve. Fear we may never have what we have so longed for. Fear of ourselves or others, fear of letting go of so much we lose sight of who we were or fear of who we will become. 

The contentment battle begins before we can even spell the word. We can see it anywhere and everywhere if we stop to observe children- they notice someone or something they don't have or do have, but want more of and off they go with plans to obtain what they desire either with brute force, manipulation or whatever tools is available for them to use to get what they want. This skill of resourcefulness is what I have patted myself on the back for having all these years and told myself or was told by others or society that it is a GOOD character trait to have or be blessed with. I am not disagreeing, however THE REASON for wanting what I don't have may be the ingredient that has led to discontentment. 

So when my I phone camera changes from taking a picture to me looking at myself and what I see staring back at me opens the flood gates of discontentment what do I do? When my child is throwing a tantrum in public AGAIN, what do I do? When my house is always dirty or work is tiresome and bills still can not get paid, what do I do?

Why do I need a flawless face, perfect husband, house, car, body, child, job etc........... Are my reasons to glorify myself, be glorified by others or glorify my God. Hmmmmmmmm When I stopped trying to manipulate and started to listen and really look deep at the reasoning for wanting, it was all selfish desire and mostly FEAR. Yes at times it was out of necessity and my fight or flight personality but let's be honest in careful analysis of some tough times, my fight has been to control out of fear and not being CONTENT.

If acknowledging our faults is the first step to creating change, NOW WHAT? 

 What is the magic formula that we all look for on how to fix ourselves? 

This + this = contentment!

Not Magic but insight-fulness, reasoning and evaluating with purposeful,  intentional and cognitive awareness of the Why's behind the Wants will help direct a heart away from the gloom of discontentment.  

Saving enough energy to parent well!

 
Remembering back to the time in my life when responsibilities and consequences were not as heavy as now. When working all day and playing all night with energy left to spare was a way of life for me.

Conserving energy was the LAST thing on my mind.  Being a natural work alcoholic is suppose to be a strength in ones life, but as you begin a family and taking care of others becomes a full time job your work ethic has to change. Well it doesn't HAVE to change but someone or something along the way will suffer if that self serving lifestyle is continued for too long.

The funny part is, I hear it all the time and it reminds me of myself, when a new mom or a first time pregnant mom says "well I am going right back to work, or they try to convince someone that they will be able to resume the current responsibilities in the workplace once the maturity leave is over". NOT!!!!

This, not even, 10lb little bitty human can rock your world from the first cry. That first glance into the most precious, miraculous face changes EVERYTHING! From long morning runs around the lake to long nights meeting her every need. From sitting and enjoying a hot cup of fresh coffee to sitting and nursing. From going to the movies to watching a movie at home. From brushed hair and shaved legs to I will just shower later. From adult parties to Chucky Cheese pizza. From a small compact car to a dirty mini-van. From afternoon bike rides with friends to holding up a bike for a 2yr old. From adult conversations to saying over and over "use your words". The list is truly endless what a parent gives up to raise a child.

In my personal journey these past couple years of motherhood, learning to conserve energy for the important things, I have had to almost die to self in order to provide my version of an ideal home life for my children. A home that will enrich and cultivate an atmosphere that will set the stage for adulthood. Is this necessarily a bad thing? Can not answer that question for anyone else but I can for myself and after careful evaluation and some long hard searching days, I have concluded NO,  it is not a bad thing. It truly has been a decision from the heart and maybe from the checking account....... but to start changing where I give, how much I give and to whom I give, in order to have something left over to give to my family has not been a bad thing. The results of being available mentally, physically and emotionally for my family is astronomical.  

It is not enough to give up the easy things, it is in giving up the hard things that you make the most significant difference. It is the extra 20 min back rub, the night after night routine that says I am here, the teacher conference that mess up your entire day, its the CONSTANT controlling of self to teach control. It is saying no to a $300 dress and getting one at TJMAXX so your daughter can have a new bike. It could be, NOT stepping in to save the day or refraining ones self from fixing a mess or cleaning a room to teach independence. 

It is in that moment when you feel like your drowning in a sea of heaviness and saying to yourself,  I can not do one more tub of laundry or clean one more paint brush or drive to one more game in this heat that I think about my life before kids and put a smile on my face and feel overwhelmed with gratitude that for this time in my life I have made the choice to die to self in order to teach, to serve, to give and to LOVE. All that being said,  I am not quitting my job but the point is I do not want to be defined by my job ( and you know how I love me some Pilates),  I do not want to be defined by the amount of activities I have signed up for or the amount of money I make; I want to define and be defined after a selfless God that taught us all how to serve others and in that serving I pray my kids will learn to serve and to love. I want to keep growing as they grow, to keep learning so they can learn through me and when the time comes for them to serve me in my old age, may the serving be joyful, not a burden.

From years of making bad choices to suddenly having a reason to make good choices I have found  freedom that brings contentment in the selflessness act of parenting. When every moment of our day is making choices from food, to appropriate clothe, to time spent, we have to choose to save and conserve energy to have back up to give when the heat is on. When the emotional, physical and spiritual bank account is empty and that sweet hand reaches up to meet yours and you meet it with fatigue or anger they know, they sense and they feel it to. I am learning to meet that hand with clarity in who I am and give the best of myself not the left overs. Choices....

Validation

Leaning my weight into the table as the speaker talked about invalidating your spouse, it was a marriage lecture I was attending, but I suddenly was applying it to parenting. Of course I was... that's what moms do, apply everything to parenting, could be one of the reasons I needed a marriage lecture (chuckle). 

Truth be told, I identified with this term INVALIDATING, in the way I spoke to my daughter. I understood at that moment that when I try to tell her she doesn't feel a certain way, or what she meant to say or do was this, it is invalidating. My daughter's emotional expressions were dealt with appropriately and I have responded inconsistently, which does not allow much room for confidence. 

The reflection of myself in the mirror of life, 
stung like a bee as I was reminded about the past corrections I had made as a mother. How thankful I am that it IS possible to change and our relationship can be nurtured back to vibrancy.

When change is on the menu where do you look to learn, to read, to follow, to get knowledge about what you need to know. In this vast world of easy access anything, it can be overwhelming to the searching mind.

Narrowing my search has made it easy to weed through the constant bombardment of media. The advice I seek, the books I read, the sites I visit and the people I want to emulate, all have a peace that comes from the Savior. We have already been saved from our poor judgement,  backwards priorities and our scaring invalidation. We have been set free to choose and I choose life, grace, forgiveness and most of all change. 

I want to validate others in all my relationships but mostly with my daughter, so she will know in the deepest core of her being that she is loved unconditionally not just by her mother, who is still being molded herself, but also by the potter, the creator of ALL heavens and earth! The journey begins to discovering who Sky truly is, who she is created to be and not who I think she should be. 

But now, O LORD, you are our father; we are the clay, and you our potter; and we all are the work of your hand.

Isaiah 64:8