I am so excited to share my friend Deitra’s story this week. I have gotten to know her and her family over the years, and especially sweet Myles in Children’s Ministry, and he’s kept me and my daughters on our toes!
Be encouraged by her journey…
I have Jeremiah 17: 5-8 hanging on my refrigerator, for me to read every day:
Thus says the LORD: “Cursed is the man who trusts in man and makes flesh his strength, Whose heart departs from the LORD. For he shall be like a shrub in the desert, And shall not see when good comes, But shall inhabit the parched places in the wilderness, In a salt land which is not inhabited. “Blessed is the man who trusts in the LORD, And whose hope is the LORD. For he shall be like a tree planted by the waters, Which spreads out its roots by the river, And will not fear when heat comes; But its leaf will be green, And will not be anxious in the year of drought, Nor will cease from yielding fruit.
It hits me so hard because the truth is, having a child with autism is not for the weak. It can be extremely hard. My faith is tested daily. I asked God why He chose me as I don’t always feel strong enough. And as usual, He asks me “why not you?”
There are good days and not-so-good days. Early on I had to decide that I was not going to allow the not-so-good days to consume me or define my son. I owed that to Myles and God. Every day I make a conscious decision not to define God by what I think He’s not doing. I choose to see Him as bigger and better and trust that He is working things out for our good. It’s a choice. It’s still difficult because there are days when I just want to be sad or angry. But I can’t. I must be rooted in Him. God has a plan for Myles and there’s work to be done for that plan to be accomplished. People say there’s no instruction manual when you have children. Well, that goes double for raising a child with autism. Trusting God is my only option.
I must trust God for Myles’ safety when he goes to school, as people aren’t always kind. I trust God that Myles will listen to his teachers and do what he needs to do in class. I trust God that Myles will be accepted by his classmates. I trust God that he will continue to learn to be independent and be able to take care of himself when my husband and I aren’t here to take care of him. These are the things that a parent with a child with a disability thinks about all the time.
I was an “older” mommy. I had my daughter Andrea after seven years of infertility treatments. Four years later, I was miraculously pregnant again with no fertility treatments. My pregnancy was uneventful, and Myles was perfect. He was such a cute baby with a wonderful temperament. Around 15 months, I noticed he wasn’t talking or trying to walk. I remembered for Andrea, developmental milestones came pretty quickly. I felt something was wrong, so I took him to the doctor, who dismissed my concerns. My maternal instinct told me something was wrong, so I called a developmental pediatrician. I think in the back of my mind I knew it was autism, though everything in me hoped it would be otherwise. After preliminary testing that included looking for eye contact, measuring response to his name, and other observances, we were recommended for additional testing to verify he was on the autism spectrum.
The doctor left the impression that my son would never do ANYTHING. I held my tears in until I finally reached my car. With Myles in my arms and my husband on the phone, I broke down. My heart was absolutely shattered. How could God do this after I waited so long to have children? I can’t even put into words the disappointment I felt in my heart.
At that time, I thought my son would never experience the things other boys experience – playing sports, going to college, getting married. Devastated doesn’t even begin to describe how I felt.
When I got home, I called my mom for sympathy, and instead received her usual wisdom: she advised me to take a few days and cry and yell and be angry – and after that to get back up and ask God for direction. I didn’t want to talk to God. I wanted to wallow in sadness. When my husband came home, he took my hands to pray. I just stood there as my heart wasn’t in it. Eventually, I mustered up enough faith and asked God for guidance. I told Him that all I had was mustard seed faith, and I needed that to be enough.
We started on our journey of faith. Believing God for Myles to speak, we covered him in prayer and scriptures. We also prayed for the natural help he would need to develop. After Myles’ Early Intervention evaluation, God brought Dora into our lives, and we all worked together towards Myles’ goals. My whole family got involved: my parents, sister, aunts, and uncles all came together to assist us.
We wrapped Myles in prayer, love, and support while at the same time raising our daughter. We prayed Ephesian 4:32 for Andrea. As we were working and waiting, I desired for her to be as the scripture says “kind to one another, tenderhearted.” From all that I’d read, sometimes siblings of children with disabilities struggled with resentment. But not in our house, as we were intentional about giving Andrea the attention she needed as well.
Then there was the wait – all the time between us praying and the first time he spoke. I yearned to hear him say mom or ask me for juice. I cried a lot. We tried to get him to make sounds. I printed out pictures of everything and carried them around in a binder. If he wanted something, he pointed to the picture. We started him on educational videos so he could hear words and sentences. One day I was watching him look at the videos and noticed he was looking at the words. When the therapist tested him, we discovered he was reading! He couldn’t say the words, however he knew what they were visually. Seeds of hope were planted. Still no words, and I refused to give up. Day after day after day and nothing. We never stopped praying – even through the tears, frustration, and anger. My husband and I took turns – one of us had to be strong while the other could wallow in disappointment. We alternated pulling each other back to God.
Myles was almost 5 when he finally spoke. Honestly, I don’t even remember the exact word. I was just thrilled to hear his voice. And it was absolutely perfect – high-pitched and squeaky, just as a little boy should sound. I smiled at everything he said and did. He said his sister’s name, mom, dad and just kept going, each word filling my heart. It was like a daily answer to prayer as he spoke words here and there. As we continued to pray and work with him, he began to talk more. By the time he started kindergarten, he didn’t need pictures at all to communicate. He was talking and reading on his own, and now he doesn’t stop!
As a parent of a child with autism, you realize that as you fight the good fight of faith for just one miracle, it gives you the confidence to believe God for another, and then another. Now that he’s older, our faith is growing and set on greater milestones and accomplishments. There’s no limit to what God can do, if He did it before, we believe He’ll undoubtedly do it again!
Moms – know that you have hope in God. In Him, we have everything we need. And just like that scripture on my refrigerator, we will be blessed with spiritual security because we believe and trust in and rely on the Lord, and our hope and confident expectation remains in Him.
Pray With Me:
Father, I thank you for all moms, and especially moms of children with autism. Raising a child is not easy and raising a child with a disability can be difficult. We pray for peace for those moms that need it. Your Word in Revelations 21:4 says you will wipe every tear from their eye. And Psalms 34:18 declares you are close to the brokenhearted and save those who are crushed in the spirit. God, please hold them close and allow them to feel your love while on this journey, Let them always feel your presence.
Even in the difficult times and the times of waiting, you said you would never leave us or forsake us. We love you Lord and are thankful that you made our children and know what they need before we even come to you. Continue to equip us as moms to support our children with and without disabilities. We don’t know what the future holds, but we know you do God. Jeremiah 29:11 says “For I know the plans I have for you declared the Lord, plans to prosper you and not to harm you and plans to give you a hope for the future.” Father, we love you and give you all the praise and honor and glory – Amen.
Share this story with someone in your life to encourage them!