I won’t forget the day Rachel was diagnosed with severe autism spectrum disorder. I sat in a dim room surrounded by professionals who had participated in our marathon of testing. When the doctor said “severe autism” a tsunami swept over me, pulling me under its cruel waves. Sobs jerked from my chest. I had known something was wrong, but the diagnosis was final, like a lid slamming over the future I had dreamed for my beautiful daughter. In place of my dreams loomed a huge question mark.
Their eyes held sympathy, but they were going to walk out of that room, back to their normal lives. My life would never be the same. How many times had I spoken to parents as the professional and been thankful to go home to my normal life? Now I sat on the other side of the table. I wanted to run. But there was nowhere to go. I had to face this for Rachel.
One of the specialists handed me a huge packet of photo copies. “Here are some articles. Let us know if we can help you.” They stood in benediction, each smiling then averting their gaze while I bawled. Their job was done. Mine would never end.
I watched them leave, thoughts spinning. What does this mean for the future – Rachel’s? Ours as her parents? Her older sister’s? Will Eldest have to be a caretaker? Will Rachel ever talk? How do we provide for everything? What if we die early? How will we survive this?
Even worse was knowing my husband and parents waited at home to hear the diagnosis. I had been foolish to tell them I could do this on my own. Why was I so independent? I had insisted this wouldn’t be worth hubby taking a day off work. What had I been thinking?
The first few months after Rachel’s diagnosis were bleak, full of phone calls and dead ends. Some days I pushed the phone calls aside, ignoring them because I couldn’t deal with it all. But I knew I had to find help for Rachel, and pull out of my own pain. As a way of coping, I told almost everyone I saw that my daughter had autism. Each time it grew easier and became more real. “Rachel has autism. This is my new normal.”
As I accepted the diagnosis, I took comfort in her disorder. Her behavior issues weren’t to blame on poor parenting, as I had initially feared. Yet, to move forward, we needed direction and help from someone more knowledgeable.
Prayer was (and is still) a place of refuge. God created everything. His loving hands crafted Rachel, and He chose to entrust hubby and I to take care of her. As huge as that responsibility feels, it is also a privilege, although it can be difficult and messy. I know God will never abandon me. Through prayer, I changed the way I think. Whereas in the past I might have fantasized about an upcoming trip to the beach, I now dwell on the comfort of Heaven where all things will be made new. My dream “vacation destination” became Heaven—the trip of a lifetime, so to speak. Not that I long for death. I trust in the hope of Heaven, someday. The Lord’s hands are my refuge. This is too big to handle myself.
What about our marriage?
Hubby and I talked about Rachel and autism openly. As a speech-language pathologist, I had a background in special needs, so I helped him learn without overwhelming him. We talked about the future and our dreams, allowing space to mourn the death of them. We prayed. We trusted. We allowed each other to grieve and did not blame each other. We laughed about what we could, even while scrubbing carpet on a daily basis. We changed our idea of “getting away” to watching half a movie at home instead of expecting to take long dates and trips. We pulled together.
We hurt, though. Each time we heard about other couples getting away, taking fabulous trips, making plans, and buying big toys, knives stabbed our hearts. Even the marriage professionals seemed to conspire against us: “Your marriage won’t survive unless you get away.” We would look at each other. “Yeah, right.”
The key was to agree and accept this was difficult, but find ways to work within our constraints the same way we must work within a budget. It is what it is.
Adding to the pain hubby and I felt daily were the numerous books and articles spinning through the media. People cured their children of autism just by doing ______! Friends sent us messages, asking us if we had tired the latest miracle cure. Other well-meaning people suggested if we just prayed enough Rachel would stop being autistic.
We tried the cures we read about. We cried out to God. Little changed. We had to accept the truth: Rachel wasn’t going to be miraculously cured. This was a trial. God would sustain us through it, but it wasn’t going away.
A few months after the diagnosis, we heard a local church would offer a class on parenting children with special needs. While attending the class over a semester, we formed friendships with other couples in the class, eventually creating a support group. We weren’t alone any longer. It had taken time to pull together and open up to others, but the community we found was wonderful and helpful beyond measure.
God also provided in miraculous ways. Friends offered to babysit. I spent time with a few different teens who became my helpers, then eventually babysat Rachel on their own. Often without charging us anything. I also gained valuable friends, as these babysitters are now young women. God blessed me in every direction I stepped.
Caring for Siblings
Taking care of our other daughter’s needs also became a priority. We embraced our new normal and talked openly to eldest about Rachel and her needs. At first it was in simple terms. “Rachel has autism. That means her brain doesn’t think in the same way ours does.”
We also made special time for eldest. Sometimes we hired a babysitter so we could both attend special events with her. Other times one of us took eldest out on her own.
Grieving the losses/comparing to others
I wish I could tell you I am past feeling pain, past the sting of loss, but I would be lying. I watch families with “typical” lives. Thorns of jealousy and grief twist my heart when I hear of their fabulous vacations, their fun times, their accomplishments, even their fights—hey, their kids can talk!
Yet, I also see how God has blessed our family. Eldest a heart of compassion unequaled among her peers. God has blessed us with an understanding of His love through our trials. It is sometimes at our darkest points that we experience God’s love in the deepest manner.
Moving forward in faith
Sometimes in the midst of crisis we ask why. “Why are you doing this to us, God? Haven’t we been good enough, done enough for you?” I think perhaps it is better to ask God for direction. “Lead me through this, Lord, that I might find You.”
The words in James 1:2-6 have become so precious to me. I think often of verse 2: “Consider it all joy … when you encounter various trials.” Through Rachel, I have seen this doesn’t always mean I will dance a happy jig when bad things happen. What it does mean is that God gives me joy in trials; He strengthens me and upholds me. He hears my prayers and counts my tears. He is always faithful.
May you be blessed by the amazing presence of the One who holds all creation in the palm of His hand.
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To read more of Jennifer’s story click here.