Confidence of a Five-Year-Old

I want to live with the confidence of a five-year-old.

That thought flitted through my mind while my grandson hauled out his art supplies the day before Halloween.

“I’m turning the kitchen into a haunted house because I just learned how to draw cats,“ he informed me as held up a picture. “I can draw them really good.”

The picture below is one his cats. At first glance, I thought it was a sheep.

He was so confident in his drawing ability, he took a break from creating masterpieces and gave his little sister a tutorial in how to make them.

She was awestruck by his skill. “Your pictures are beautiful,” she breathed.

I was awestruck by his confidence. “How did he develop such self-assurance?” I wondered.

He drew picture after picture, blazing through paper and tape as he hung them from every available space. I could see how the love his parents speak into him every day is building him up.

Tell us how that made you feel.

We love you because you are our little boy.

You’re a good problem solver. You keep trying until you figure it out.

Look at all the things you’ve learned to do.

We are so glad to be your parents.

Even when my grandson is at his worse, and his parents hold him accountable for his behavior, they cover him with kindness and love.

Everyone makes mistakes.

We will always love you.

Have I ever told you about when I messed up when I was little?

Whatever happens, you are our son.

We forgive you.

Every day, in every way possible, this grandson of mine is wrapped in kindness and reminded of his parents’ constant love. The foundation of security they continually reinforce gives him the confidence to learn to ride a bike, to tie his shoes, to ask for forgiveness when he messes up, and to trust that his parents will grant it.

I want to live with the confidence of a five-year-old, and I imagine you do too.

But how can we do that when parenting a child with special needs constantly exposes our inadequacies? When our inability to provide what our kids need makes us feel like failures?

We do it by imitating my grandson. By listening to the words our heavenly parent continually speaks into us.

In Jeremiah 30:3, our Father says “I have loved you with an everlasting love; Therefore I have drawn you out with kindness when his rebellious children were at their very worst.

In Romans 8:32, Paul describes our Father’s love by saying, “He who did not spare His own Son, but delivered Him over for us all, how will He not also with Him freely give us all things?”

In the Old Testament God built a foundation of security under his children. In the New Testament, he reinforced it in the shape of a cross. This security gives us confidence to pursue treatment options, speak up at IEP meetings, connect with other parents, make difficult phone calls, to seek forgiveness when we mess up, and to trust God to grant it.

For the rest of my days, I want to live with the confidence of a five-year-old. Thanks to the example of a little boy who draws cats like a budding Picasso and the word of God speaking truth into my heart, I can. So can you.

Written by Jolene Philo

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

Warrior Parents

The Lord will fight for you; you need only to be still.

~ Exodus 14:14, NIV

I really should have taken up kickboxing, or just plain old boxing, or something involving a punching bag. I guess I still could. If I’d known all the fighting—or what some prefer to call “advocating”—I would need to do for my son Luke, I just might have.

Luke had just turned three when he was diagnosed with autism, and that meeting with Dr. Davis, the neuropsychologist, was devastating. My mom came with me that day because Mike had to work, and I remember how mom and I wanted a plan: “Do XYZ and he will get better.” The doctor did give us a plan that included preschool through the school district, Applied Behavior Analysis (ABA) and speech therapy (Luke was talking at that point), but she said it was hard to say what the results would be. After many tears on my part and much reassurance and what I thought was denial on Mike’s part (I was wrong about that!), I hit the ground running. ABA, check. Special needs preschool, check. Speech therapy, check. Back then I didn’t realize that becoming a warrior parent would be required.

Instead of gaining more speech (he had about seventy-five words and some two word phrases from age two to about three), Luke began losing speech until we were down to one word: More! And then that disappeared too. He’s non-verbal now although we do hear from him occasionally. When he is mad, we often hear a loud “NO!”

Luke’s experience in our school district’s early childhood program was awesome. We were so thankful for his team there and that they had a class specifically for kids with autism. So kindergarten came as a complete shock—and not in a good way.

Before school started that fall we set up a time for Luke, Ana (his home therapist) and me to visit the classroom. This was a classroom specifically for children with autism and it was run through a co-op of another school district. His room had a new teacher. I knew we were in trouble when his teacher said, “I’m so glad you brought me this information. I really have no clue what I’m doing.”

Um. What? Come again?
And I’m sending my precious boy to your class, why?

It turned out to be a place where Luke and the other children weren’t taught anything. Where none of the plans were followed, no IEP upheld, and no data taken. So it was time for some fighting on my part. And I wish I had stepped in the ring sooner.

Finally, in February, after a tip from a friend whose son was in the same class, we hired an advocate and got him out of there. In April of his kindergarten year, we placed him at a school for students with autism called Giant Steps, for which our school district pays. It’s a much better place where the staff is actually trained in how to work with folks with autism.

But this didn’t mean my fighting days were over.

One of the hardest, most emotional battles to fight can actually be with our churches. Thankfully, our church is growing in the area of special needs ministry, but not without tears and struggles littering the path. It hurts.

Jesus reached out to those on the margins. He spent time with them, healed them, and had compassion on them. Each of His children is an important part of His body, and He wants them to be able to use the gifts He has given them. When His children with special needs are missing—in some sad cases even asked to stop coming to church—His body is incomplete. It’s a huge mess and really tough when the church is slow to follow His lead. When the families who need extra support and love are rejected, it makes me so mad and so sad.

I love the television show “Parenthood”. Kristina Braverman, one of the characters on the show, has a son, Max, who is on the autism spectrum.

Watching one episode, I got teary when she said this about caring for a child with autism: “What works for some kids doesn’t work for all kids. . . . I feel like the system is broken. . . My husband and I have fought the system time and time again to make sure he gets what he needs, that he’s not overlooked. . . . My son, Max, is a fighter. . . . On behalf of Max, I’ve become a fighter, too.”

For those of us whose loved one is nonverbal, I think we feel what Braverman describes even more acutely. Since Luke can’t talk and tell me what is going on, it’s a huge act of faith to entrust him with others, when I’m not with him. If I find out that something is off in the way he’s treated, my mama-bear response can be quite loud and aggressive. But isn’t it true that we stand up for those we love, just like God fights for us?

When I remember that the Lord fights for me, it’s an immense help as I do battle for Luke, both inside and outside of the church. The Lord fights for us. As Moses led the Israelites out of slavery, they were terrified that the Egyptians were pursuing them. Moses reminded them to stand firm because God would fight for them. And He did! He used Moses to part the Red Sea so that the Israelites could escape. If you have time, take a moment and read all of Exodus 14.

Jesus is the one doing battle for us and our special needs loved ones. We are not duking it out on our own, even if it feels that way sometimes. He is in our corner, and He has not forgotten us. We are not alone in the fight.

Thank you, Lord, for that!

Discussion Questions:

1. Have you had to do battle for your child on the spectrum? If so, how has it changed you?

2. Is it easy or tough for you to remember that the Lord is fighting for you and your child/children? Why?  

3. Re-read Exodus 14:14. What do you think it means “to be still” in this verse?

This article is a shortened version of a chapter Deb Abbs wrote in Life On The Spectrum. To read more from Deb Abbs and the other authors of Life On The Spectrum check out www.lifeonthespectrumbook.com or order the book below. Because no two people with autism are the same, Life on the Spectrum’s authors all bring their unique perspective and experiences to the table. Their honest, raw and heartfelt stories show how God is at work in the real-world struggles of families impacted by autism.

Buy on Amazon

Written by Deb Abbs

Deb, who graduated from University of Illinois–Champaign/Urbana with a degree in journalism, works as a freelance blogger, as well as a disability ministry coordinator for InterVarsity Christian Fellowship in Illinois and Indiana. Her writing has been featured in several magazines and she was a columnist with the Kane County Chronicle.

She also contributes to Key Ministry’s blog and is one of the administrators of the largest online special needs ministry leader forum, with over 1,000 members.

She lives in the far western suburbs of Chicago, Illinois, with her husband, Mike, their two sons, Brandon, 18, and Luke, 14, plus a crazy English bulldog named Crystal. When not otherwise occupied you will probably find her with her nose buried in a book.

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WHAT IS YOUR BREAKING POINT?

It was the middle of the night and it was pitch black out. The heat was oppressive and all I could hear was the whir of the ceiling fan. I woke up and could barely suck in a shallow breath of air. My chest was constricted and I was having sharp chest pains. A sense of panic came over me. After time, my breathing returned to normal, the chest pain went away and the panicked feeling dissipated. This was my first panic attack of what would be many more to come.

This panic attack didn’t come out of the blue but it was a complete surprise. Without realizing it, I had been experiencing chronic stress. Chronic stress can be defined as the response to emotional pressure suffered over a period of time during which an individual perceives he or she has no control. I was a prime candidate for this.

Our youngest son with additional needs was now seven years old and these needs had placed a tremendous stress on our family. As a husband and dad, I internalized my struggles and what I was feeling because I didn’t want to place more weight on Sarah. On top of our son’s additional needs, during the previous year I had 5 surgeries and was on bedrest off and on for 10 months. The final straw was working with refugees in a refugee camp in South Sudan. My body had reached a point where something had to give. It could not just keep pushing forward. On my way home, lying under a mosquito net on a cot in Juba, South Sudan I experienced my first panic attack.

I have since gone on to get the help I needed. I have prioritized making sure I am getting the right nutrition and am taking breaks periodically. These things have allowed my body to recover to the point that I no longer experience panic attacks.

Often, we, as parents of children with additional needs, just keep pushing on. We just take one more step and focus on getting through that next minute. This becomes our new normal and before we know it, years have gone by…step by step and without a break.

Our bodies can only live under constant stress for so long. After time, something will give. Some of you may find yourself in this state of brokenness right now. Maybe you are struggling with depression or doubts about God. Maybe you find yourself dealing with one of the many health issues that can result from chronic stress. I want to encourage you.  This does not mean that you are a weak person. It does not mean that you are somehow “less than”. It simply means you are human.

God sees your brokenness. He knows your pain. He gets it like no one else can. When it feels like you are alone, He is with you. He will use your brokenness.

“Give all your worries and cares to God, for He cares about you.”

~ 1 Peter 5:7 (NLT)

God Sees You

"Abram replied, 'Look, she is your servant, so deal with her as you see fit.' Then Sarai treated Hagar so harshly that she finally ran away. The angel of the LORD found Hagar beside a spring of water in the wilderness, along the road to Shur...And the angel also said, 'You are now pregnant and will give birth to a son. You are to name him Ishmael (which means 'God hears'), for the LORD has heard your cry of distress." "Thereafter, Hagar used another name to refer to the LORD, who had spoken to her. She said, "You are the God who sees me." ~ Genesis 16:6-7, 11, 13 (NLT)

Do you ever feel overwhelmed by life, in a tight or impossible spot with no help in sight and then, on top of that, alone...overlooked, like no one understands, sees, or cares? That is exactly where Hagar found herself. She was a servant, kicked out by her mistress, alone in the wilderness, pregnant. Yet, it was in these circumstances that Hagar meets and sees God like she never has before. And she gives us insight into WHO God is and what He is like even to an average everyday woman and mom.

After God gives Hagar a glimpse into her future, she responds by saying, "You are the God who sees me." I don't think she was impressed by the fact that He saw a traveling woman there by the springs of water unaccompanied and likely distraught, as other travelers passing by might see her. No, she was impressed because He saw to her very heart and all that encompassed. This so impressed her that she gave God a name we haven't seen in Scripture before, "The God who sees me".

You can rest assured that God sees you, too. You may feel invisible and overlooked by others in this world, but God sees. He sees you when you are checking the monitors all throughout the night. He sees you when your child is having a meltdown, again. He sees you when you can't bear to think about the future and what it holds for your child. He sees you when this last option therapy or procedure didn't work. He sees you when you just want a shoulder to cry on and there isn't one. He sees you. He sees all of it and He is there for you. It's WHO He is. He hears your cry of distress and He sees you.

God gave Hagar the name for her son, Ishmael, meaning "God hears" because He heard Hagar's cry of distress. Is there anything burdening your heart today that you need to cry out to God and tell Him? Go ahead, He's listening. Truly listening to hear your heart, your hurts, your worries, your anger, your doubts, your fears.

God Who Sees, thank you for seeing me.