Define Special Needs

I will never forget the first time someone labeled my daughter as "special needs". WHAT does that mean? When I was a therapist, we loved labels, it helped us know what to expect from a child and how to treat them but as a mother I did NOT like that term used for my sweet little girl.

NOW ..................................

I am so grateful to have a special needs child, she teaches me the true definition of loving unconditionally, that tone of voice matters, that eye contact is valuable and that down time is sacred. 

I shutter to think the kind of mother I would of been without all the lessons I have learned from her.  

I would of taken so many things for granted and allowed time to escape without stopping to really SEE her. 

She has taught me to STOP, LOOK and LISTEN like the fireman tell you to do when you see a fire.  That is what happen to me, I saw a fire in her and I had to STOP, LOOK and LISTEN. 

STOP blaming, or searching for the whys, stop wondering or worrying. 

Stop being anger at her all the time. Stop being angry in general. Stop listening to every one's advice. Stop trying to figure out what was wrong and missing SO many things that were right. Stop refusing help.

LOOK at who I was inside and out. Look for the ways I could change instead of trying to change her. Look at ways I could make her life more comfortable. Look up to Christ instead of at the world.

LISTEN to her. Listen to the subtle signs that being too busy we often overlook. Listen to the unspoken cry of a child in need of a mommy.

So really I believe ALL kids are special needs. They all have special individual needs that as a parent we have to STOP, LOOK and LISTEN to. 

 

Oct 5, 2008-Journal Entry to my Son

Oct 5, 2008

Kendyl, 

Son, you are my sweet boy. You saw mommy crying and ran to the kitchen to get a tissue and said "you all better now" and gave me a kiss. 

Your sister has been dealing with some mental health issues and you have been so patient and kind as we learn how to parent her. 

You still have no interest in being potty trained but oh well we will get there buddy. 

Love,

Mommy

My son's smile was a shining light in a dark cave, his soft voice and sweet kisses could transcend me out of a gloomy fog!

I will never forget him and I  hiding under the bed because Skyler was having an episode and we were both scared.  I wanted to distract him so he did not have to hear her screaming, so we hid under the bed and as I held him tight rocking side to side singing Amazing Grace I could feel his heart beat slow down.

Praise God the time has past that we have to hide under the bed.  Kendyl loves his sister so much that when he is older and can comprehend what role he needs to play in her life to be a BIG LITTLE BROTHER I will tell him all about it but for now I will enjoy the contagiuos giggles between the two.

Each day holds a new journey of sibling rivarly that we have to embrace with laughter and grace.

April 14, 2009-Journal Entry to my daughter

You are smiling more and more every day

April 14, 2009

Good Morning my love! You have been a shining star! The Lord has truly blessed us with people in our lives to help you enjoy life more. You spent the entire weekend with your cousins and had a BLAST. I love listening to you giggle. You are so loved, never forget that. 

Daddy bought you a bug house and you are crazzzy over these little bugs, you just love them. It is so precious to see you have a connections with God's little creatures.

Love 

Mommy

I am told that "Courage grows out of difficult circumstances" and I believe that to be true. When the ground shatters under your feet we have choices to make and I have to say I made the wrong choices. I allowed rage to control my life, my marriage and my mothering. 

My approach in handling my daughter was so far off base that it is embarrassing to admit.  What Skyler needed  was an authoritarian yet gentle voice and my calm spirit. 

I now understand what it means to walk by faith and not by feelings, to think before I respond, "to Stop, Look and Listen" as the firefighters say.  I want to keep learning, keep growing and keep being my daughters defender, cheerleader and mother. 

After March Before April 2009-Journal Entry to my daughter




SkySky Bug,

We have had such a rough time lately-not sure where to go from here. You have had some terrific past couple month but now I feel like we are back to square one.
I feel like it is me-I am so confused-I can not sleep-I am on my knees, "God give me wisdom".

Love you Baby Girl,
Mommy

Looking at this sweet face brings tears to my eyes. So many times she seemed to be smiling on the outside but struggling internally. I would ask what can Mommy do, are you OK, Do you feel mad, sad? Did someone hurt you, did I hurt you? She had no way of expressing to me the battle going on in her head.  I grew very weary and tired. Tired of mothering, tired of not knowing how to mother, tired of no answers. Just TIRED! 

My new normal was just to survive each day. I did not want to settle for just survival. I wanted more! I desired family time that did not end in complete chaos because my daughter had a melt down that would take hours to calm her down, to be able to go into a store without running out in a panic that she would run away into moving traffic.

I did not enjoy the feeling in my gut when my husband and I would have to take turns caring for her because it was so much work that you could only endure short periods of time without losing your mind. 

I know the old saying "Where there is a will, there is a way" but does will have anything to do with motherhood?  Can you WILL answers, change, direction or help?  

March 3, 2009-Journal Entry to my daughter

Skyler,

Where does the time go? Well baby girl you have been so happy lately, talking more, laughing and playing so well with Kendyl. You were making him giggle tonight and he kept saying "Again, Again" and you would do it again and he would giggle even harder. 

The doctor is trying some different medication for you and I really think this one is making the biggest difference. You seem to be more comfortable in your skin. Less anxious, less tantrums, less agitated and more smiles!


We had the BEST family day.  We all enjoyed just being together and I found myself walking through the mall crying tears of joy. 

You really are a beautiful wonderful child that I love more and more every day. 

Love,

Mommy

I live in gratitude that we have smiles on a regular basis now. A smile of comfort and true joy that every kid should be able to experience.  My SKY SKY is able to enjoy life because of medication.

On the other hand I live with a constant battle of right vs. wrong.  I am relying on drugs and with the risk of side effects and long term addiction am I making the Best decision. Mommy guilt is overwhelming when I allow it to consume my thoughts. Yes, Yes, yes, they all say but internally as a MOM, I will always wonder. 

For now I love hearing her soft tone of voice, sweet smiles and her ability to handle extra snuggles. The battle can continue in my mind as long as I see her making progress and enjoying being six years old.

Jan 23, 2009-Journal Entry

Daddy and Sky Bug

Sky,

I am willing to do whatever to help you. 

It did not go very well taking you off the full dose of your medicine. You have had some tough ups and downs but God has really helped me be more patient, kind and gentle even during the very trying times.

I feel so lost and scared. I wake up everyday not knowing what to expect.

I was just thinking about the first day I held you in my arms and since that day I have loved you more and more. Perseverence will be our new middle name.  

You have started riding your bike and you rode all the way to Cooper today. My hearts sings when your happy sweet girl! 

I love you,

Mommy

My current situation in 2010 seems so different from Jan 2009. When my daughter lets me fix her hair or allows me to briefly hold her in a tight bear hug or says hello to someone approaching us, my heart skips a beat. 

I notice the simplest things that would of passed right by me if I had not expercienced the pain in those previous years. Having a child with Aspergers is not strange anymore to me, it is normal. It is my normal and I am learning to embrace the challenges one by one. 

I am still learning to balance her needs with my sons and husbands so I am no longer consumed with HER issues, HER anger, HER disconnection but to blend HER into our family.  

With a marriage on the rocks and a son that needs a mother to be present in his life there is no time to waste.  Each moment has to count to ensure that I have no regrets.    

As Spurgeon puts it, "It is peace, sweet, deep peace which follows the horrible turmoil that once reigned in our tormented souls."

December 11, 2008

Sky Sky,

Mom and Dad have tried to ween you off half the medication you have been taking and we are pleased to report, so far so good. We feel so much better that you are not taking so much medicine and pray God will direct us in ways to eliminate all of it. 

I feel so helpless in trying to be your mom. It is so hard baby girl but perseverance and determination are my focus.

Your dad and I love you so much and we are not giving up, we will do our very best to teach, love and care for you. 

Love,

Mom

....As I end my day with a journal reading, I am reminded that some experiences are life altering! Everything that one seemed so important  has now faded and all new priorities have appeared. My focus, my energy, my time, my resources and my thoughts now are directed toward building a different life.  A life that my daughter can thrive in!