I walked into the doctor’s office. It was the summer of 2004. It took us over 45 minutes to get there and the appointment took us over a month to get scheduled. I walked in with my husband and son to this small room with a desk and patient bed. My son was quiet and had his Hot Wheels car in his hand. He quickly sat on the floor. The doctor greeted us and then went over to the lights and turned them off. My son Charlie quickly got up and ran over and turned them back on. I thought, “that was weird, why did the doctor do that?” He then went over and tapped his knee for a reflex, which Charlie pushed it away. Finally he took measurements of his head, or at least tried, but Charlie pushed that away too. Then the words that will ring in my ear until the day I enter Heaven.
“Your child has autism”
As he went and sat at his desk and started writing prescriptions he said, “you will need to get an MRI, EEG, and Fraxile –X Chromosome Testing. He will need PT/OT/ST with the schools so get him registered there. We will look to see if there are any brain tumors or abnormalities.”
I was in complete shock. The whole time while he is saying all these things my sweet Charlie was on the floor just watching the wheels go back and forth on his toy car. I remembering looking at him and thinking, “wow, Charlie’s life what will it be like? My son, what does this mean?”
My husband and I walked in that doctor’s office with one son and came out with another son. It was the same exact boy but our thoughts and thoughts about what our journey with him would look like changed and we didn’t know what the new journey meant. We both took several months to really digest and understand what autism really meant and what it meant for our son. He wasn’t talking only grunting and he was a couple weeks from turning 3.
Maybe you just received a new diagnosis about your child. It is a big adjustment. A lot to take in. A lot to understand. It is ok. Take time to be sad, to be questioning, to be mad. It is ok. It is so important to go through those emotions. It is normal. Until you get through those initial emotions it will be hard to tackle it and move forward. I have seen so many parents stay in the denial stage for years, or don’t want the label. I know it is scary, but the longer you stay in denial or don’t want to deal with it the harder it will be for your child.
The diagnosis doesn’t define your child. The challenges that they face don’t even define them, but knowing all the struggles that they have is crucial for being able to help them. I am on the other side of the newness of hearing, “your child has autism”. My son is 13. We still have daily challenges but I have seen so much progress over the years that is what I hold onto. Will he be living with us the rest of his life. I am not sure yet, but I do know we will continue to work each and everyday to help him be independent.
Look at the positive things. Focus on what they can do more than what they can’t do. Find another family who is ahead of the journey you are on at least 5 years or so. It is invaluable to talk with someone else who has been through the same trials and who has prevailed or who has advise on how to approach this.
I am grateful each day for the journey we are on, even on the toughest of days. I know God is using my Charlie to teach me so much more about Christ. He works so hard each day and continues to show progress, no matter how little or big. It is progress. Even on our times when he dips backwards a little bit, as the years have gone on I know that would be just momentary and part of the journey.
I want to encourage you that it is a journey not a sprint. It is challenging at times. God really makes you look to Him especially on those toughest of days. God chose you specifically to be your child’s parent. He gave you and me strength, patience, love, and courage to help our kids. Feel special that you are their parent or grandparent. You were chosen.
Spend him with Him daily so you can fill your heart and mind each day with his love, power, and strength to get you through. Jesus Calling by Sarah Young is a great daily devotional to get you started. Open the Bible and God will speak to you giving you His Power, His Strength, and His Love.