The Sibling Factor

The sibling tends to get left out quite a bit when you have an "extra needs" child. "Extra needs"= my new name for special needs!!!! 

During our experiment of eliminating one of the medications that helped Skyler cope, it became so evident to me the lack of attention and teaching moments my son truly gets. It became more about surviving then parenting. Within less than a month we had regressed back several years into daily violent tantrums, changing the course of our plans each day to match her temperament. The high demands for attention and structure left us on constant edge.  Morning kisses turned into snarls and lack of hygiene, followed by outburst of screaming, hitting and running off. The lack of communication, the lack of ability to cope in crowds, handling noise and following any kind of direction became nonexistent. 

The sibling relationship was slowly dwindling from laughing and playing together, to my son pulling away from her in fear and anger. His inability to comprehend the nature of the situation made him frustrated and retreat.  

The enormous amount of energy it started to require to manage the basic tasks of life left little time for family togetherness.  The bubble that we had lived in years ago started to form back around us. Isolation, confusion and anger characterized the behind the scene picture. I started to question my judgment on trying to live drug free. It seemed like the RIGHT thing to do. everyone talks about natural, organic, drug free, dye free, meat free, milk free BUT we are not FREE. Skyler was in bondage.

The change in her was so dramatic, so undeniable, so apparent that she needed me to make a better choice for her.  Her and I had a talk about how she felt now compared to before and how she was so confused why she could not handle things and she told me she was so sad and mad all the time. She was scared to leave my side at camp and church, places she goes all the time. The darkness in her eyes began to speak to me and I had to listen to her crying out for help.

So what may be RIGHT for someone is not RIGHT for everyone. The truth is within 24 hours of her first dosage back on the meds, my daughter hugged me for the first time in three weeks. She laughed with her brother, could look in my eyes and respond appropriately. I am not giving up hope that my baby girl could live without assistance from pharmaceuticals one day but for now to see her happy in her skin, living, loving and laughing means more to me than being RIGHT!

The makings of a Champion

 

 

The past couple of weeks my daughter and I have had our own Olympic training to do.  See.... for the past 3 years she has had the aid of a very powerful drug called Risperdal (Risperidone)

Risperidone is used to treat the symptoms of schizophrenia (a mental illness that causes disturbed or unusual thinking, loss of interest in life, and strong or inappropriate emotions) in adults and teenagers 13 years of age and older. It is also used to treat episodes of mania.

Risperidone helps her deal with the little annoyances of this world that overwhelm her.  Our hope has always been that she could manage one day without a class D medication, by use coping skills to live life. The same world we all have to learn to live in, navigating in and out of challenges, using a variety of coping skills, some destructive and others that are constructive. I am learning along the way,  how I have habits that have become my coping skills since I was her age.

The journey began with vigor and tenacity on my part and little perceptive on what this would entail. Sounds like many Olympian hopefuls!

 

So let's take a short trip inside the brain where your sensory system takes input from touch, sound, taste and hearing to send a message to the brain and the brain tells the body to react to the stimulus. The reaction from this input can be positive or negative based on the brains perception. SO! She has had trouble since around 3 dealing with certain stimulus and reacting appropriately. The medication gave us time and has allowed us to teach her coping skills using speech and other forms of therapy to reinforce positive habits that are constructive. With the aid of medication she was able to adhere to such programs and continue to make progress and mature. Fast forward the clock now to current day and time. She is about to be 8 years old and has had a significant amount of time to learn and grow. She has had a long smooth patch of good behavior, good decision making and appropriate responses to stimulus. The time has come to stop aiding her with a class D medication and rely on coping skills and a class A drug (example: anti-anxiety).

It is now one month before school starts so the time is right to begin training for the GOLD! To date it has been three weeks without Risperdal and each day has been a progressive downhill slide of anxiety, deconstructive reactions and negative responses to stimulus. I have had bread, crackers and ice thrown at me, constant NO for a response, loud screaming responses to simple questions, clinging to my leg when asked to go camp, more affection toward animals then people and the latest was an attempt to run away. It grieves my heart to watch her go from glowing with independence and maturing in character to slipping back into isolation and constant irritation.

I have been thinking about what makes a champion! What gets us from where we are right now to where we want to be without losing our mind along the way. Is a champion made by a GOLD medal or do we associate the arrival of perfection the end of the competition. After we have the initial to add to our name then what?

What makes a champion is one that wins the GOLD and realizes that it is NOT the medal but what they do with it that makes them the winner.

Where do you go after you win, how do you love others after you have been the best, how does living the mundane affect you after the exciting wears off and how do you let the thrill of the competition go for the skill of handling everyday tasks. 

How do I choose what is best for her? Which road do I take? What does a champion do when faced with a major decision that will affect others lives? The paved road or gravel for my training ground? 

My answer: God already knows where I am going, the plan has been set before me. He is the true Champion, he is my protector and provider and I need to seek first his will not mine then the path will be right, whether it is paved or not. 

Her new best friend Toady!

Allowing others to teach my kids what I can not!

Sometimes as Mighty Mom, I want to teach my kids all they need to know, BUT truth be told for me that may be more about control and pride. Allowing others to teach my kids, what I can not, requires trust, faith and humility; none of which I can say come easy for me.

There is the school teacher, music teacher, skating teacher, best friends mom, grandparents, aunts, uncles, doctors, therapist plus all the other folks that throw insight into my children's path that influence how my kids perceive life. It is overwhelming to let this little human, that you brought into the world, lean into others advice.  

Summer time brings a whole new set of anxiety for me because we now have less influence of others teaching my kids and more of ME!!!!  Asperger kids tend to strive on structure and summer time is far from structured! It seems almost suffocating to imagine as May begins to unwind, remembering back to last year when the summer was one of the hardest times. Balancing the free time with activities that would not over stimulate while working full time and dealing with appropriate child care issues. The thought of going back to possible meltdowns or regressing from such a productive year was something I refused to dwell on.  This summer is going to be different, BETTER!

............................................................................................................

My daughter agreed to go to soccer camp IF her brother would go with her and my heart raced with delight. A group sport, with a ball, new people and it requires coordination. All of which is extremely hard for her. She really has the hard part, overcoming all the fear and anxiety, I had it easy...TRUST!

I thought to myself after staring at my kids backs and reading the quote Trust God No Matter What, that maybe someone was trying to tell me something. Not just trusting when you have a savings account or your kids are not fighting or your feeling fit or when your car starts. It means trusting when they leave your home for Grammy's for a week, when they go to camp, when they ride their bikes, when they are fighting non stop, when the car will not turn over or when there is no money. Its every day, every minute, every inhale and exhale. My son was talking to me as he rode his bike never looking back to even see if I was there, he just trusted that I was and it hit me.... I need to live like that more. 

On day three of soccer camp Skyler was a little uneasy and as I probed her for info she started bawling and telling me that a kid laughed at her and stuck his tongue out because she kicked the ball the wrong way. A surge of anger that I have spent years trying to tame roared up inside me. What kind of lesson can I teach her out of this? What does she need from me? How can I teach her to be strong along with validating her feelings? How do I trust in this situation? I preceded to sit in open gym the next day with her to see for myself this KID! who he was, what he was about and who did he think he was. Well Skyler and I observed him for awhile, to realize he was just a wild kid all around and I asked her "want me to say something to him" she sighs and says "No I think he is just a mean kid right mom"?

Day four a true miracle!  "mom mom mom I met a friend today"! I replied "really how?" Sky says a matter of factually "mom you don't know how to meet a friend?" I laughed and said "yes I know how to meet a friend but I want to hear how you met a friend".  She says well I did what Mrs. Hicks (her speech teacher) told me to do, I said "Hi my name is ________________ fill in the blank Skyler" OMG I almost fell face first into the sidewalk. "Skyler" I said "that is great, then what did you say"?  She said "well I am suppose to talk about my day and I did". I said  "well what is her name?"  "Oh I don't know"  The smile on my face turned to a giggle. What if............................ I had not trusted in the doctor who pushed me to do speech, what if I had not allowed the camp to happen out of fear, what if........ I had run from a diagnosis? What if................................I had allowed her to stay in her bubble. What if I tried to teach my kids everything? Skyler met a friend today and that to me was a miracle. She was proud of herself and I was proud of her for taking a leap of faith. 

 

I reached out to hug my daughter as she returned home from a week at grandmas, my heart was aching for a genuine bear hug, knowing very well she is incapable of that kind of affection, I still longed for a quick moment as her blue eyes raced past the front door, past me and into the kitchen as she fell to the floor sucking face with the dog! Oh well I had my miracle this summer I cant expect too much!!!! Her week in Seattle gave her the confidence and independence I so hoped for, I so trusted in. It started with THE climb straight up the muddy path and to me I love a good challenge. It looked so fun and inviting so of course my mom and I started charging up and she followed.

As her feet slipped out from underneath her, I felt the crippling fear paralyze her body and she says "I can't make it". I started pushing her bottom the rest of the way up the hill and as I looked up that shirt AGAIN starring me in the face. "Geez doesn't my kids have any other clothes to wear" No just kidding ... I said "Sky trust mommy we can make it, dig your feet in to the dirt and push baby girl you can do it".  She held on tight as she looked down at her pop pop &  smiled. 

The going down was harder for me because we both slipped and as she felt my grip loosen around her she screamed and I lost the rock my foot was securely on and down we slid. I tried to get her to laugh once we were at the bottom joking about all the mud on our clothes and shoes and how fun that was but her response was "we are NOT doing that again, that was NOT a good idea MOM".

............................................................................................................... Trusting started as I let my son walk out our back door, knowing he was flying alone and then continued as I was getting on the plane in Seattle, leaving my daughter for the first time. It was a leap of faith that yielded huge returns.

Proverbs 3:5-6

The tools my Mother gave me!

As Mother's Day came to a close yesterday, I thought about all the tools my mom has given me. The tools we need to survive, to live, to love, to give, to fight when necessary and the tools to teach our own children.

I want to thank my mom for thinking about my future. She trained me up in the way I should go but you need to know.... I did not take the exact path she so diligently prayed and worked tirelessly for. Putting that aside when the fire of life breathed heavily down on me in high school, then college and into adulthood and now motherhood, I have her to thank for the hope she gave me.

She has passed on the tool of perseverance, the tool of not living by feelings but by honor and commitment, the tool of fighting for what is true and right for my family and for myself. The tool of bravery, the tool of consistency and the tool of always looking inside FIRST. The tool of encouragement and servant hood and the tool of self respect. The tool of how to become a wise women, the tool of admonishing myself and not giving into shame and guilt. The tool of loving without judgment, the tool of forgiving without condemning and the tool of believing without seeing. 

Now that being said I do not always use these tools she gave her life to teach me but having them rooted into my being helps to practice them and pass them on to my children.

I closed my eyes at the end of the day hoping my children can say that I gave them a similar tool box for life, necessary tools to withstand the snarls of cruelty that will appear and a joyful spirit to enjoy the laughter in between.

Thank you Mom for a job well done, for never giving up on me, for continuing to pray for me and spur me on, for parenting with joy and supporting the passion in me to pursue a life worth living.

I love you, I love you, I love you,

Your Grateful Daughter

In the glory of the moment

It is a day of all green lights. You know what I mean, when you hit the streets and all lights are green. You get to work with a smile creased across your face.

That is my week thus far - all green lights. One moment of glory following the other days of discontentment and I am left with yes mams and no thanks you's coming from the mouth of babes.

How do we celebrate moment of glory in the middle of a lifetime of chaos?

I choose to celebrate by sharing the moments with you to remember and reflect later.

The new chore chart up and they run to check off the boxes, the morning breakfast with no spills and helpful cleaner uppers. The bed time routine followed without whining or crying. The early evening quietness that relaxes the nervous system.

The days began with eagerness to learn more and completed with a verse that has been memorized with nagging. Sibling sharing without expectations!

The devil must not be attacking the A Team (my family nickname: Aspergers, Asthma, Addiction & Anger) this week.

The dryer and washer empty, the floor cleaned, the dishes done, the dogs walked the bills paid and the day still has time. 

In the celebration should come preparation for the flood- resting mind and body to withstand the next downhill slide stemming from human nature (selfishness and overdoing). 

 My preparation must include time with the God of Glory, music, laughter, sleep, exercise, open conversation with a genuine friend and stillness. 

May I reread to remember in the heat of battle against the threats of this world My moments of glory!

If pictures could tell the REAL story

If I showed you a picture of how I thought Easter weekend should look like from my expectations and it had a story behind it, it would look like this: Waking up to music playing as I start cooking all the organic recipes I had per-planned, then the Easter story reading before breakfast, each one of us getting ready for a day full of celebrating the resurrection of the King and gratitude would ring in my ears. The perfect picture of matching Easter outfits plus inviting friends over to celebrate into the wee hours of the night ending the day with a gleaming smile of thanksgiving.

Learning Lesson #1 

Take nothing on its looks; take everything on evidence. There's no better rule.” ~ Charles Dickens

 I thought instead of putting a bunch of pictures of us smiling and allowing the perception to be that we had a perfect day of celebrating Christ, I would write the real story behind our not so perfect picture.

7:30am "mommy", I respond  "Hey Kendyl want to grab my phone and play a game so mommy and daddy can sleep a little longer"?
BUT what I meant to say was ...

"Good Morning Little buddy"  it's time to take Jesus (a figurine we have) out of his tomb today. He runs to the scene of plastic figures and tell Jesus in a funny voice to RISE!

Reality is, the fighting began immediately, over how to unwrap him (Jesus), where to put him, what to do after he is out and so on.

Inappropriate non-spoken response from Mom (wooh this is going to be a loooong day)!


Learning Lesson #2  “If you want to make God laugh, tell him about your plans.” ~ Woody Allen

I know I should not even try to get my sensory daughter in an itchy Easter Dress and pretty bows in her hair with cute sandals and a matching purse BUT I did! I thought I had given up on trying to make her wear certain things just for pictures. " I want to see my baby girl wearing it and so does Grammy and Daddy".  Not gonna happen!!!!

First the No! then the crying , then the trying to tolerate it and ripping it off and scratching all over and MOMMY GUILT sets in, "why would I even try that I know she does not feel comfortable in that"? Uuurgh! 

Learning Lesson #3

 Don't worry that children never listen to you; worry that they are always watching you.  ~Robert Fulghum

  
We ended up in a t shirt,  deadlocked hair, sandals (that she took off after 30 min because they hurt her feet) but we did get a black skirt on (black? really on Easter)!

The let's not make any plans and just relax today routine does not work with Skyler. She immediately said upon opening her eye balls-"ok Mom tell me in order mom, did you hear me, in order what is the plan for today?"  Well the thought of us not having a plan was too much for her brain to handle so she tried to place every things in a time line from eating to getting dressed to what are we doing for lunch and what time is bed time. "Skyler sweetheart we just woke up, it's Easter a very special day to Celebrate can we relax and enjoy the moment"?  


Learning Lesson #4
Life is what happens to you when your busy making other plans.  ~John Lennon

Lunch ends up with crying because Sky Sky having a brilliant mind that loves to organize everything wanted to put name place settings for each one of us and wrapped the silverware so tight in the napkin we could not use our utensils. Then when one of us sat in the wrong seat she fell to the floor crying that we messed it all up. We survived a Whole Foods Pre-Made Easter Lunch with 15 yucks and two spills.

Learning Lesson #5
If we are what we eat then I am fast, cheap and easy!

We were able to make it through the remarkable 2 minute Easter story with candles telling them of Jesus  (the Lord of Lords) dieing for us and coming back to life, like a magic candle his light never goes out!

 Then she heard thunder and now the story of rebirth turns into fear and anxiety of what happens if we get struck by lighting and panic sets in. 

Perfect time for learning lesson #6

 Be anxious for nothing because God already knows how our life is going to play out so why waste energy being anxious ~ Philippians 4:6

Really it is only 1pm and 4 meltdowns..........

Ok I give up and I think to myself,  if Christ gave his life for us, I can at least give up my dreams of the perfect day for the love of a child. "Skyler" I say "what would you like to do"? AND we went to garage sales, face painted (yes my face was painted like a bunny), then

No laughing

I held her hand for an hour an half while we ice skated. 

Even though she continued to nervously chew the edge of her shirt off until it was hanging down past her chest line, she was smiling and not worried about getting struck by lighting. 

Meanwhile the boys got to do BOY stuff, video games, ride scooter and build legos.

Learning Lesson #7

There is no perfect day, perfect life, perfect child, perfect body, perfect house, etc.... there is only a perfect GOD! 

A Happy Cry!

 

My daughter is a child, I am told, that has to learn emotions from a chart!

 A child that practices changing her tone of voice to learn how to express herself better. 

So......when she asked me what a Happy Cry was I paused and thought here is a teachable moment. 

We were eating dinner on a special Mommy and me date night and looking into those big blue eyes, I had a flash back of sitting in the back of my car bringing her home from the hospital.  I brushed my fingers through her hair and I said "oh I remember the day I brought you home from the hospital" and a tear ran down my face.  

Her response "Mom why are you crying", I said "it's a Happy Cry".  

"What is a happy cry?' she asked me? 

"A happy cry is when you are so joyful, so happy in a moment that your emotions take over and you start to cry". She is silent and very still, I can see the wheels turning in her head, then she says "I want to happy cry!"  

She says "ok here I go I am going to happy cry" then nothing happens and she repeats a couple times and she says "I can't do it". 

"Sweetheart" I say, "it is not something you do it is something you FEEL  And I hope you have tons and tons of those moments in your life." 

A week later we are laying in her bed and she starts kissing me and saying "mommy I loooove you" then would pause and stare at me and say it again. Strange behavior from my daughter especially and I said "what are you doing silly goose?" She said "I want you to happy cry again". I could not believe the impact the happy cry had made on her and how she wanted to duplicate the moment. 

 It was delightful to sense her sweet nature and know that she does NOT need a chart to learn feelings or expressions but people in her life that had feelings and showed real emotions with true expressions.

 A job I COULD do!