I welcome Deitra Smith back as a guest blogger to Destined 4 the Dub. You can find her previous blog here. Deitra is back to share a very important topic – the preparation and care of children with autism transitioning into adults. I pray her story encourages you, and please share with other moms who may be facing similar fears and concerns.
It was the first day of school and I looked at the pictures I had taken of Myles. I suddenly had a revelation, “He’s growing up!” My skinny, squeaky-voiced little boy was gone. “My baby is not a baby anymore!”
Most parents expect their child to grow up, possibly go to college, have a career, get married, and eventually have a family of their own. But when you’re a parent of a child with a disability, growing up may take a very different path.
After having fertility challenges and finally having my daughter after seven years of treatments, countless surgeries, and too many miscarriages to count, we were surprised when I got pregnant with Myles four years later. Not only because he was conceived naturally, but also because I was 40 years old! My husband Andre and I always wanted to have two children. While we were trying to conceive, one of the names God gave us was Myles; but after all we went through with Andrea, I truly thought we were done having children.
Our prayers went from God we believe and receive into God it’s ok and we’re happy with what we have. God has shown me that I must take Him at His Word, regardless of what things look like. If He said He was going to do it, He’s going to do it, period. It may not be on my timeline and that’s ok. Just because I don’t see God moving, doesn’t mean He’s not working things out behind the scenes. That lesson prepared me for what I had to face later.
With Myles, I had an uneventful pregnancy. Being over thirty-five, the doctors heavily monitored my progress. Being pregnant at my age is referred to as a geriatric pregnancy, but I felt great! When my baby boy was born, we were thrilled because our family was finally complete. Myles was a healthy baby and hit most of his growth and development milestones. However, when he was eighteen months, I realized something wasn’t right. According to Kimberly Scanlon, author of the book My Toddler Talks, a child should generally begin babbling and progressing to five or six words between twelve and fifteen months of age. I know all kids develop at their own pace, but generally, by eighteen months Myles should have been able to speak around fifty words.
But Myles wasn’t saying any words, so I knew there was a problem. I took him to the doctor, and he told me to give Myles time as boys develop at a slower rate than girls. I left the office with the same uneasy feeling that I had when I got there. I immediately called our local Early Intervention office as well as Children’s Hospital of Philadelphia and scheduled Myles for an evaluation. The hospital confirmed what I already knew – that my child has autism. Even though the diagnosis was what I suspected, it didn’t make the doctor’s confirmation any better. My heart was broken. I remember calling Andre at work from the appointment to tell him the news. Devastated, I cried so hard I could barely drive. So many thoughts ran through my mind: Would I ever hear him say mom? Would he have friends? Would he ever understand me? How would other people treat him? What would happen when I’m not around to take care of him?
As I think about Myles’ progression, it is amazing how far we’ve come. He really is doing great and can’t…or rather won’t stop talking! Years ago, I worried if he would ever talk, and now it’s hard to get him to stop. This is one of many ways God has answered our prayers over the years. Myles also doing well in school, learning to socialize more with other people and becoming more independent. He’s been reading since he was three and we continue to work on his comprehension skills at school and home.
A few months ago, during a meeting with his therapist, she shared, “I know Myles is only ten but let’s start preparing for fourteen-year-old Myles. What do we want him to be doing?” Panic began to set in. Fourteen-year-old Myles is not that far away, and time seems to be flying by. I took that statement and ran with it. I have a mental list of all the things he hasn’t done yet but needs to be proficient at before he got older. He is behind in a lot of areas, and I feel like I’m running out of time.
Honestly, just thinking about it scares me. I know that one day I will leave this earth. Andrea will be able to take care of herself as we’ve raised her to be a solid, strong, confident young woman. But the thought of not being around for Myles keeps me up some nights. Who can I trust to take care of him? Is it fair to expect his sister to take on this role? It’s a harsh reality that I must face and I’m sure other parents of children with a disability have struggled with the same thoughts.
I feel like I’m in a race for him to learn to take care of himself. Recently, I woke up in the middle of the night in a panic. I got up from bed and went downstairs to pray. I heard God speak clearly to me – where is your faith Deitra? I thought about the times He answered my prayers in the past. I trusted God for a baby through seven years of infertility treatments and He blessed me with two amazing children. I had faith that my marriage would remain strong when most couples with children with disabilities were divorcing, and Andre and I remain more committed than ever. I believed God that Myles would talk, and God answered my prayer. Where was my faith now? He brought me to Jeremiah 29:11:
I sat there in tears and asked God what I needed to do, He responded to pray, prepare and rest. So this is what I’m doing, and I want to encourage other mothers to do the same:
Always begin with prayer. Philippians 4:6-7 says, “Do not be anxious or worried about anything, but in everything [every circumstance and situation] by prayer and petition with thanksgiving, continue to make your [specific] requests known to God. And the peace of God [that peace which reassures the heart, that peace] which transcends all understanding, [that peace which] stands guard over your hearts and your minds in Christ Jesus [is yours].”
I must pray and present my requests concerning Myles to God. If I want any peace, giving it to Him is my only choice. 1 Peter 5:7 says, “Casting all your anxieties on him, because he cares for you.” God cares for me and my family. He knows exactly what we need. I have to stop worrying and remember that my son is not just mine, he is God’s. My worrying does nothing but show that I don’t trust God enough to help Myles or heal me from my anxiety.
Preparation isn’t always easy. I don’t always feel like preparing! I have a goal and I want the results now! But that’s not the way this works. Preparation is key to receiving what we’re asking God for. According to the dictionary, being ready means to be in a suitable state for an activity, action, or situation; fully prepared. Now we can’t prepare for every little detail of our lives. Only God knows the future, but we can prepare ourselves to be ready for when God responds to those things we’ve been praying about. I have asked myself, what are the steps you need to take to prepare your child, your finances, and yourself? Proverbs 20:24 says, “Man’s steps are ordered and ordained by the Lord.” As I take the steps to prepare, God will bring the resources I need. As an example, a few years back God allowed me to work in a program with adults with disabilities. Myles was young and I had no idea why God put me there. But during that time, I made contacts and learned about different programs that would be beneficial for my son when he gets older. It’s never too early to start preparing for what you are believing God for.
Matthew 11 says, “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.” When I have given the situation to God after I’ve prayed and prepared, it’s time to rest. This is a challenge for me because I struggle to be still. I always feel like there are things I could be doing. But God is teaching me to stop and enjoy where I am knowing that He is taking care of everything that concerns me.
Dear God, You are so good! You have been with me every step of the way through this autism journey. Whatever my child needed, you have been there. Lord help me to trust you more as my child gets older. Calm my heart and my mind when I am fearful about the future. Give me the peace that passes all understanding so I could be free from anxiety and worry. As I pray, prepare and rest in Your presence, I let go of my anxious thoughts and embrace You peace and joy. In Jesus’ Name, Amen.
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