Autism is a Journey

When we began realizing that an autism diagnosis was our reality, the 5 stages of grief also became a reality. Denial – This isn’t really happening is it? Everything will be fine, right? Anger – This isn’t fair! I didn’t sign up for this! Bargaining – What if we had done that differently? If only I had done this. Depression – Feeling hopeless and discouraged. Acceptance – This is our reality and we will seek to glorify God in it. None of these stages are linear. I have periods when I experience a peace that passes understanding. I have others when I feel I’m in a pit of despair.

Autism is a journey.

But it’s a journey more akin to a long road trip rather than a direct flight – where you stop to appreciate the beauty of a monument or landscape but you also run into breakdowns, road rage, and constant refuelings (along with car sickness and child meltdowns). Can you tell I enjoy car rides?

On this journey, I’ve walked and talked with God on the highest hills and in some of the deepest valleys. One thing holds true; His love never fails. He’s the beautiful monument and breathtaking landscape that makes the journey worth it.

I…Love…You

“Ellie. Ellie. I…Love…You.”

…

“Let’s try it again. I…Love…You.”

…

“I…Love…You. Goodnight sweetie.”

Over the course of Ellie’s first 4+ years, she was nonverbal. Like a broken record, we practiced non-stop verbal repetition at all times. We tried prompting her to speak by repeating words like “up”, “down”, “yes”, “no”, “all done”, “more”, etc., while always pointing to our mouths with intense tone inflection. We also integrated basic sign language and used a video speech program that focused on the formation of the mouth when making sounds. We were always hopeful that she would one day speak, but I’d be lying if I said I wasn’t mentally preparing for the possibility of my daughter never speaking. What a mental and spiritual battle that was.

Speech is always taken for granted. It’s assumed and expected. When it doesn’t happen, it’s crushing. Every parent desires to understand their child’s wants and needs. Not being able to discern what that is and only getting cries of frustration is very disheartening. It’s a helpless feeling.

Even though we couldn’t tell whether or not our words were sinking in, we desperately wanted Ellie to hear over and over that she was loved. I would repeat “I love you” over and over before kissing her goodnight. I would kneel beside her and pray desperately asking God if He’d be willing to bring forth speech in her. The hardest part was praying “Your will be done.”

Relinquishing Control

Praying through “Your will be done” is so difficult primarily because it’s a relinquishing of control and placing it in God’s hands. It’s the admission of, “Okay God, here I am. I’m ready to submit to You no matter what you have in store for me.” We are all control freaks at heart (admit it) and need His rescue. Sure, God’s will can be done in certain areas of our life with little complaint, but when it comes to our kids, that may be the toughest control to relinquish. We somehow think they are off-limits, even to God, and we know better than Him. But God says, “No, they are mine too.”

We should try to love our kids with open hands. Otherwise, God will have to pry them open. His plans and His purposes are always greater than our own, although it may be confusing at times. We aren’t called to understand. Lean not on that (Proverbs 3:5). But we are called to trust in faith that He operates for our good and for His glory.

Sometimes, God answers our prayers and gives us the desires of our hearts. Sometimes, He doesn’t for reasons we don’t always understand. But, there is a peace God brings to our hearts when we submit our wants and desires to His will.

There are things in this life we desire for Ellie that will probably never come to fruition. Contending with that is a challenge and will continue to be, but God has been so good to us and has answered many of our prayers. The greatest answered prayer has been with her progress with communication.

Praise for Progress!

About a year ago, something really incredible started to happen. Ellie was starting to make connections with our communication toward her. The repetition of “I love you” had become a prompt for a kiss in her mind, so she began leaning her head forward toward my face for a kiss after we said, “I love you”. She was making a connection between the two. That was a pretty special moment and we knew she was on the right track.

Soon after, she began mimicking and forming the word “you” with her mouth as we said it to her. The words were clearly in her mind and she was working on the facial structure to push the words out.

Then the verbal attempts began! It was very jumbled at first, but she was trying hard. “I love you” started coming out as “Ah. vvv. Ooo.” She would hold her hand up to her mouth as she spoke to feel the breath coming out of her mouth. She also started leaning forward extra emphatically for a goodnight kiss.

I’m excited to share that Ellie can now voice the words “I love you” clearly! I can’t ever take that for granted. I must not. God answered our prayers in that way, and all the glory goes to Him. It’s a demonstration of His immeasurable kindness toward us. We aren’t owed a thing. There’s still so much work to be done and progress to be made, but this will always be a pivotal part of our journey. Like a stop at the Grand Canyon or Niagara Falls on the road trip. The type of stop that reminds you that the journey is worth it.

Because He First Loved Us

I mentioned earlier that God’s love never fails. Sometimes that love is demonstrated in ways we don’t expect. Through the journey with our kids and autism, God has revealed the fickleness of my own heart and my propensity to doubt His love for me. He’s revealing dark corners in my heart that need to be brought to light. He’s wrecking my self-sufficiency and pushing me more toward total dependence on Him. That’s the sort of love I need.

Some days are so hard, but I never doubt the immense love I have for Ellie, Jack, or Lucy even on their (and my) worst days. So how is it that we can so easily doubt God’s love for us when we would never doubt our own love for our kids? Are we better demonstrators of love than God? The absurdity of the thought. We only love because He first loved us and He loves us more deeply than we can imagine.

In love, God uses the trials of parenthood to draw you to Himself. It’s one of His sharpest tools of sanctification. It works to amputate our arrogance, sever our selfishness, and pierce our pride. All the while we are being carved and molded to be more like Him.

So whenever you are in doubt of God’s love for you, remember the love that you have for your kids and ask yourself if that love is greater than His. It helps to reorient ourselves and turn us away from doubt.

If nothing else, remember the cross. Remember that He did not spare his own son. Remember that condescension. Remember that great exchange for those who believe; that not only were your sins paid for but that Christ’s righteousness has been lavished upon you. That’s His way of saying,

I…Love…You.

And there is nothing in this life that’s greater than that love (John 15:13).

A HUGE Thank You!

With Thanksgiving quickly approaching, I wanted to say how thankful we are for the incredible people God has placed in Ellie’s life who have prayed for her and who have worked closely with her. We’ve worked so hard at helping her communicate, but so much credit goes to her incredible teachers and therapists who God placed in her life. When she began more intensive ABA therapy at age 4, her first therapist was confident she’d be verbalizing her wants and needs in the near future. “Oh yeah,” she’d say, “She’s going to get there, you just wait and see!” I was hopeful, but not as confident as she. That was really encouraging for us to hear.

Please continue to pray for us as we navigate through recurring challenges and new challenges. Pray for others who may be discouraged on their journey navigating the challenges with autism or parenting in general. Pray that God would demonstrate His kindness and restore peace to the souls that need it most. Only He can fill us and satisfy our deepest longings.

Sweet Ellie (Video)