The Smile in My Pocket: Special Needs Siblings

“Nichole, do you need the smile in my pocket?” As a little girl, my momma would offer me her “extra” smile when I was feeling sad. I had forgotten she used to say this until just the other day, as we all eventually turn into a version of our parents, I looked at my own daughter’s downcast face and offered, “Grace, do you need the smile in my pocket?” It was without thought that these words tumbled out of my mouth, and I couldn’t help but smile at the realization of what I had just said. But my little girl was not smiling. Not even close. 

It was not a look of discontentment or boredom that covered her face. There was no trace of selfishness. Instead, it was a look of deep sorrow—an emotion that flooded her heart and reflected in her eyes. I knew this look. I had seen it before. 

My sweet girl buried her face in her hands and wept. She wept for her baby brother. She was burdened for him as the new school year approached. She prayed that he would make new friends and that his teachers would love him; because it’s hard watching her baby brother try to find acceptance in a world where autism is still very misunderstood. 

This was the cry of a special needs sibling. 

We know that parents of special needs children sometimes need extra support and encouragement, but we often forget that special needs siblings also daily give of themselves, their time, attention, and love. They need support and encouragement too. 

Here are just a few things we have learned from our precious daughter. 

Special Needs Siblings Feel Deeply

Special needs siblings are exposed at a very early age to the lack of understanding our society has for people with disabilities; many times, they feel responsible to make a way for their sibling. Special needs siblings want so much to have a connection with their brother or sister; toys, movie preference, and activities take a backseat to the possible opportunity of simply winning a glance, a smile, or even a touch from them. Just as my husband and I sit and pour out our hearts to one another about the future and well-being of our special needs son, our daughter also loves her baby brother and is concerned for him, praying desperately for him to succeed. We should always keep in mind the deep heart aches of a special needs sibling. 

Special Needs Siblings Sacrifice Greatly

Therapy sessions, doctor appointments, procedures, and tests ... this is the life of a special needs family. We try to remind our daughter that she doesn’t have to be the doctor, the therapist, or the teacher. “Just be his big sister” we say as she prompts her baby brother with verbal cues before she will allow him to have another pretzel bite. Disability becomes a family affair. Our homes are not like everyone else’s. Our lives have a unique ebb and flow. In the midst of all this, we desperately try to make special time for our daughter. Time that is only for her. Because many special needs siblings, by nature, give of themselves relentlessly. 

Special Needs Siblings Need Encouragement

If you know a child who is a special needs sibling, please encourage them. They carry burdens heavier than many their age. They have also acquired beautiful gifts that take many of us a lifetime to learn. They recognize that love requires no words. They know the significance of being a friend to all people regardless of ability. They have learned to find the beauty in life amidst the struggle. They have learned to choose relationship over possessions. It’s true that special needs siblings carry a perspective of life that is weighty at times and yet equally as beautiful. The weight of these gifts should be matched by as much encouragement as we can give. 

Special needs siblings feel deeply, sacrifice greatly, and need our encouragement. Maybe you could offer them the smile in your pocket?

First Published at Irresistible Church

 http://irresistiblechurch.org/smile-pocket-special-needs-siblings/

 

First Day of School

First Day of School

Mommy Mondays

I would lace up the pink satin ribbons on my shoes, stand on the points of my toes, and gliding through the room, I could find happiness to the rhythm of a familiar tune.  In the midst of a chaotic life, I found order and grace. I wasn’t the very best dancer, but from the age of two years old through college, the dancing bar and stage were consistent fixtures in my life. Dancing was part of life, it was an outlet, and I loved it.

So, I bought the cute little ballerina bag with the toe shoes painted on the side of it, the tights, the leotard, and the shoes. I dressed my precious daughter in her dance clothes and fix her hair in a perfect ballerina bun. I couldn’t wait to share dance with her. I just knew she would fall in love. I pictured this being her “thing” with dance recitals and costumes for the next fifteen years at least.

She was good….really good. I was so proud of my precious ballerina. However, I began to notice that she grumbled a little each time we pulled up for practice. Her enthusiasm dwindled quickly. She didn’t like the itchy tights, the tight leotards, and much preferred to make up her own dance moves to her own music.  I recall a conversation where I said “Grace, you cannot quit, you made a commitment and we have to honor our commitments” to which she replied “But Momma, I don’t even know how to say that word!”

We finished out our dance year with a wonderful recital. Despite her excitement for the costumes and show, she sweetly declared “I do not think dancing is for me.” Fair enough. We had tried. We kissed dancing goodbye.

So, what next? We went through the list. Would you like to take piano lessons? Guitar lessons? What about a sport? Soccer? T-ball?

“Momma, if it’s ok, I think I would just like to be an ordinary kid. Can I come home from school and just be me?”

“Umm, yes, yes I think that would be just fine.”    …Ouch!

You see, I was trying to find something that would be just for Grace.  Our home is a revolving door of therapists and help for our son. Much time and attention is devoted to his care.  As the parent of a special needs child, it is a struggle to balance equal time and attention between a child that requires “more” and a “neurotypical” child. I wanted to make sure that Grace had an opportunity to have fun and to have a special time of her own.

I had to check myself. First, I never want to mistake activity for quality time. Second, I never want to allow myself to be pushed into the world’s mold of constant motion.  Although extracurricular activities can present wonderful opportunities for kids, there is no “parent code” that declares you a bad parent if your child does not participate in a bazillion (or even one) extracurricular activities. My sweet daughter had reminded me of the value of slowing down and to “just be.”

I did however, want to make sure that I reserved some time aside just for Grace. My solution: Mommy Mondays!  In place of a “thing”, class, or skill, I have made Grace my “thing” every Monday afternoon. It’s nothing spectacular, but its special time set aside for just the two of us to share some ice cream, talk about the day, or play together uninterrupted. I have tried to be intentional during this time about reaffirming to her who she is in Christ. This time has become so special and I am so thankful Grace chose to “just be” this school year.

I want both of my children to feel celebrated for exactly who God created them to be. Too many times parents place their child’s future within the confines of worldly expectations, based on parental interests (I was a football superstar and you will be too. Or I loved dance and so you should too), and influenced by social advancement.

I have struggled from time to time in “letting go” of my son’s future. Because he has Autism, I have no idea what the future holds for him. I have had to look reality head on with the understanding that he may live with us forever, he may or may not hold a job, he may or may not ever get married or even be able to speak in complete sentences. I pray for a breakthrough. I pray for the bondage of Autism to be broken.  At the same time, I celebrate who he is, just the way he is. I cannot make comparisons but rather embrace his precious personality and rejoice in even the smallest of his accomplishments. Having a special needs child has allowed me to understand the importance of celebrating a child’s individuality.

Who knows what Grace may choose to become, how her interests may change over time, or what she will want to do with her time in years to come. For now, my sweet girl wants to “just be” with her mommy. I am thankful. We will celebrate this season.

Grace may never grace the stage with pink point shoes and a sparkling tutu, and that’s just fine. But we will dance together through this journey called life. We will celebrate every accomplishment, find joy in the good, pray through the tough, and “just be” so as not to get lost in the every-day-hustle of life’s demands.




"Is It Ok To Ask God To Heal My Brother?"

Our morning began just like every other morning. There was not enough coffee drank, mismatched socks, lunch kits hurriedly packed, hugs and kisses, and the Frozen soundtrack belted out at the top of our lungs as we drove to school this Wednesday morning.

The pause between two songs brought an opportunity for my six year old daughter, Grace, to speak up. “Hey Momma,” she said almost questioningly (I turned off the music). “I want to ask you something but I don’t know if it’s ok to ask. It’s about Ezra.”  

Ezra is my precious four year old son, who has autism. All at once a rush of thoughts overwhelmed my heart. Grace knows she can always ask anything. I want to make sure she knows that she can especially always ask us about her brother. She needs to ask questions. Questions are good….I wondered what she was going to say.

“Grace, you can always ask us anything, especially about Ezra.” There was a long pause for thought as my daughter collected herself and breathed a heavy sigh.

“Is it ok to ask God to heal my ‘Ezra Brother’?” She continued, “Cause I’m beginning to think that he has a disease. I don’t think he understands us and I don’t always understand him, but I want to and I want him to too.”

Such heavy thoughts for such a little girl. My heart instantly began to ache. She had obviously wrestled with this question for some time. Her words streamed from her lips as though they had been stored up under pressure and now there was no holding back.

“Yes, you can ask God to heal Ezra. You can ask Him because He can do it. He is able to heal Ezra. But Grace, God may choose not to heal him and that’s ok too. We trust God. Grace, I want you to know that God does not ever make mistakes. I believe God knew that you would be the perfect big sister for Ezra. You have such a huge heart, you are so loving, and you help take such good care of ‘Ezra Brother’. You and Ezra are both perfect just the way God made you. We will love Ezra no matter what.”

 “Yes, I will love him no matter what too! But I just had to make sure that it’s ok to ask God for that,” she said very matter-of-factly.

“God wants you to come to Him with your questions, Grace. It’s ok to ask. I do think we should be careful how we talk about it in front of Ezra though. He does understand us sometimes; probably more than we realize. I don’t want Ezra to ever think that he isn't wonderful exactly the way he is.” We were pulling up to the school building.

“Yep! I agree! Dear God, please heal my ‘Ezra Brother’ and make him all better. I want him to understand me and I want to understand him too. I don’t like to see him struggle. I want him to know I love him. Amen.”  She seemed completely satisfied and relieved, like a heavy load had been lifted from her. She gathered up her things, gave me a kiss, and hopped out of the car as though we had been just chatting about ice cream.

I watched my happy-go-lucky girl bounce down the breezeway and into the school building…and then I let it go. I sobbed the deep sobs of a broken momma’s heart.  I sobbed the kind of sobs that leave one feeling depleted of any kind of energy. My heart was heavy for my daughter, for my son, and for this thing called Autism. Did I say everything that should have been said? There is no manual for these types of questions and I am certainly no expert in such matters. Such heavy thoughts for such a little girl.

Friends, let me tell you something. When sadness tries to grip our hearts, we have two choices. We can either allow sorrow to overwhelm our souls, or we can fight for faith from our Heavenly Father.

I knew what I needed. I needed Jesus. I needed Jesus and a Pumpkin Spice Latte (just being honest people).  So, I sat sipping my latte and had a good long visit with my Jesus.

Instant peace. The Lord so graciously brought to my attention all of the beauties from my seemingly overwhelming morning.

Faith. My daughter had demonstrated mature faith this morning. She wasn't asking me if God could heal her “Ezra Brother”, she just wanted to make sure it was ok to ask.  What a great reminder for me as well. I know that God is able, but sometimes I just forget to ask.

Hope. My daughter’s hope was not crushed. Do you know why? Because we serve the God of the universe who truly Is Able to heal. I didn't have to lie or offer up some cliché to cover up hopelessness. I was able to share truth with her. The truth is that God is all powerful, all mighty, healer, and He is in control. The truth is that He wants us to bring our hurts, requests, joys, and sorrows to Him because he loves us. The truth is that God’s plan is perfect. The truth is God does not make mistakes. I can boldly share hope with my daughter about her “Ezra Brother” because my God is good.

Love. The love that my daughter has for her special needs brother runs deep. It runs deeper than words, deeper than actions, and deeper than any diagnosis. She pursues Ezra will her love. She loves him enough to bring his name to the feet of Jesus and to ask for healing. She loves Ezra no matter what.

After finishing every last drop of my latte, removing the black smudges of mascara from my face, and trying to make myself look human again, I went about my day. As I thought more and more about our Wednesday morning conversation I became more and more thankful for it. I pray that seeds of faith were planted deep in Grace’s heart. I praise God for such precious children. I praise God that because of who He is, I can speak truth. I am thankful.

It was "Western Day" at school last week. Ezra was not too sure about his pearl snap shirt, boots, or the camera! Grace tried to cheer him up!

It was "Western Day" at school last week. Ezra was not too sure about his pearl snap shirt, boots, or the camera! Grace tried to cheer him up!

The Window

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There he sat starring out our living room window. He sat there for at least thirty minutes. Some of the time he was silent and some of the time he chattered away in his own little language. I wondered what he saw. I wondered what it was that had so captivated his attention.

It’s interesting isn't it?  It’s interesting how two people (regardless of ability or disability), can look out of the same window, and yet they see such different things.  

I love to keep my windows open. The first thing I notice when I look out my window is the sky. I love how the heavens declare the glory of the mighty God that I serve with their inaudible praise. Then, I might notice how the sunlight perfectly shines on each drop of dew on the grass. I notice the motion of the wind and I notice how the leaves have been swept across the drive from the night before. I take all this in and it refreshes my soul.

And so I wondered, on this day that my precious son sat beside the window, what is it that he sees? Because he cannot tell me, I speculate…Does he take it all in as one beautiful picture? Or does he look at each tiny detail? Every blade of grass? Every cloud in the sky? Does it bring joy to his soul as it does to mine, to marvel at the beauty of God’s creation each day? Or does it overwhelm him to take in so much? What does he see?

In many ways, this is what life is like when you have a child with Autism. You are both looking out the same window, and yet you are both seeing such different things. Ezra and I live in the same world, but the way we experience it is so very different.

As much as I want Ezra to see what I see, experience what I experience, feel how I feel, learn the way I learn, and love the way I love, it is not always that easy. What’s even more, who says that there is one “right” way to experience life? I have learned far more, grown far more as a person, and have developed a deeper level of compassion and love by trying my hardest to learn about Ezra’s world instead of demanding he conform to mine.

Certainly there is an importance for him to learn from an educational and behavioral standpoint. I am so very thankful for the group of amazing teachers and therapists that have rallied around our sweet boy to help him achieve his very best. But as he learns from us, we must never forget that there is so much for all of us to learn from him. He has a beautiful mind that is constantly at work. What a tragedy it would be for us to take for granted the blessing of a precious child because he does not fit into the cookie cutter of what society deems as “normal” or “acceptable”.

I want to become a student of my children. I want to see what they see when they look out the “windows of life”.

About a week after my little boy had sat so fascinated at the living room window, my little girl sat with her play computer at the very same windowsill and was “working” hard. I asked what she was working so hard on and she replied “I’m working on my blog”. (I have no idea where she got that from)

As she sat and banged away on the keyboard of her little toy computer, she began to “read to me” the blog she was working so hard to write…

“My brother has Autism. I don’t know why God let him have Autism. But that’s ok. I guess He let him have Autism so that I could help him and love him. Sometimes my “Ezra Brother” struggles, but I am here to help. The end.”

Grace lives in the same world as you and I. Grace sees the world differently than most six year olds do. Why? Because our family has embarked on a beautiful, but sometimes very hard, life-long journey of Autism. Grace’s experiences as the older sibling of a baby brother with Autism has caused her to think about things, pray about things, and see things differently than many children her age.

Sometimes, it’s good to try to “see” what others see when they look out the windows of life. We can all learn so very much from each other.  Our faith, our life experiences, our victories, and our defeats all contribute to how we each “see” life.  We would be wise to become students of one another. We would be wise to celebrate the beauty of a mind that “sees” differently.




"Ezra Brother"

I had always said that if we ended up having two children, a boy and a girl, that I hoped the boy would be the oldest. I wanted him to be the protective older brother. As life turned out, we do have two children and we do have a boy and a girl…but Grace came first. How thankful I am that His thoughts are not my thoughts and His ways are not my ways. How thankful I am that Grace is Ezra’s big sister!

Being the big sister of a brother with Autism is quite a special job. Being the big sister of a brother with Autism means many family trips to doctors’ offices and waiting rooms, listening to the same songs over and over again, joining in on therapy sessions, sleeplessness when brother has had a rough night, and having your princess dolls beheaded and catapulted across the room. Being the big sister of a brother with Autism takes a lot of patience, unconditional love, selflessness, compassion, sacrifice, and understanding. That’s a lot to take in for a five year old little girl!

There are definitely times that Grace struggles. Often times she will have to give up something that she is doing because Ezra is having a rough day. Our family is not able to go and do some things that the average family is able to go and do. Our family does not necessarily look like an ordinary family. But with all of the sacrifices and struggles involved, Grace handles them with such compassion and thoughtfulness. I believe the Lord is using Ezra to develop a maturity in her that can only come from having a sibling with special needs.

Sometimes I wish we could all be as accepting and caring as children. Grace very lovingly refers to Ezra as “My Ezra Brother” and likes very much to introduce him to everyone she meets. Although Grace does not necessarily understand the word Autism yet or know all of the “Spectrum” lingo, she does understand that her brother is a little different from other kids. It almost seems that because of this difference, she has made it her own special mission to introduce him to the world as her very special “Ezra Brother”. Grace will remind others “Say hello to my Ezra Brother” and “Don’t forget to say goodbye to Ezra!”  She is always looking for ways to include him as much as possible.

Grace daily impresses me in the way that she interacts and responds to her baby brother. I believe there is no greater therapy for Ezra than to have his sweet sister “get into” his world. Grace pushes him to interact, she initiates play with him, she knows how to help calm him down, and she knows how to cheer him up. We do a lot of Sign Language in our home and Grace has become our “Sign Language Police”- she knows just about every sign and corrects us frequently! Sometimes I have to remind Grace that she gets the great honor of being the big sister but she does not have to be the Mommy and Therapist as well- she is always so eager to work with Ezra. I believe Ezra knows without a doubt how much his big sister loves and adores him.

Not too very long ago I spent a good hour sitting on the floor outside of the kids closed bedroom door, just listening. We had put the kids to bed and it sounded like Ezra was probably going to have a rough night. He began to cry and hit the bedroom walls. All of a sudden I began to hear Grace’s sweet voice singing at the top of her lungs. She was belting out as many of Ezra’s favorite songs that she could remember, one right after the other. I sat outside their closed bedroom door and just listened as Ezra grew calmer and calmer. That night Grace sang her baby brother to sleep and I just sat with tears streaming down my cheeks on the other side of the door. Thank you Lord for moments like these!

I am so thankful that His thoughts are not my thoughts and His ways are not my ways.  I am so thankful for the very special way that the Lord designed our little family. I am so thankful that Grace is Ezra’s big sister. I am so very thankful for the sweet relationship that Grace and Ezra have with one another.  

Although it is hard at times, I am thankful for the opportunity that Grace has to learn to Love in a Different Language- I believe it is all part of God’s great plan and is helping to shape her into the very special person He has created her to be.

“For my thoughts are not your thoughts, neither are your ways my ways, as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” Isaiah 56:8-9

Grace and her "Ezra Brother" celebrating the 4th of July

Grace and her "Ezra Brother" celebrating the 4th of July