When you’re a parent and autism enters your life, you go through a range of thoughts and emotions as you try to understand what it means to your child. Some emotions you hold onto for weeks, months, even years, everyone’s different. Some you let go, some come back again, and some you’re able to move past and reach a more positive way of thinking. . Here Jill, author of the blog Walking with Drake, shares her feelings of what the last couple of years have been like for her family, in an honest, heart-felt letter to autism.
I’ve been trying to find the words to write this letter to you for a long time. I’ll be honest, I have struggled. You have been a puzzle to me (no pun intended).
When Drake was just under a year old, I searched you out. I read about your poor eye contact, improper play with toys, and your developmental delays. I said to myself, “no.”
The more I learned the more I read. I Googled every possibility. Perhaps Drake has hearing loss, maybe that is why he rarely acknowledges when I call his name. He is spoiled; that’s it! We baby him to much and that is why he still can’t hold his sippy cup by himself at one year old.
Still…you persisted. No matter how much I tried to ignore you….you continued to prove yourself to me.
I often wonder what is involved in the process of choosing. I imagine it is sort of like standing on a hill, looking at a valley full of wild flowers. They all look the same, yet they are all different. Was it a random plucking or did you see that one flower that stood out a little more than the others?
How did you choose Drake?
I know God was involved. Without His okay, I know that you would not have been able to “pick” Drake. It has been almost one year since the day we received Drake’s autism diagnosis. I remember pulling away from the appointment with an urge to conquer you. I was resolute. My mission was to hunt you down and make you listen to me.
The days, weeks, and months have passed and I’ve fought as hard as I possibly can to bend you to my will. It wasn’t until recently that I realized you are here to stay.
I don’t know that I will ever understand you. You, Autism, are a complex being. You cannot be pinpointed because you never touch anyone the same.
My Drake cannot speak, please allow him to have his voice soon. Yet, you have allowed him to be non-agressive, sweet, affectionate, and a good non-verbal communicator. There are so many children and even adults who you affect more severely. You cause them to hurt themselves, have extreme aggression, major meltdowns, horrible sensory issues that may prevent them from being in public much at all, and horrible motor skills.
I don’t understand. I’m sure there is a method to your madness, but for the families affected it is so difficult. Perhaps more importantly, it is difficult for those who carry your diagnosis. The struggle to be understood must be overwhelming.
I have gone through so many emotions in the last couple of years while dealing with you, Autism. I’ve watched my precious child struggle with you. I’ve noticed other children treating my child differently because of you.
I will not quit.
Yes, I have accepted that you are part of who my child is, but there is more to Drake than you.
Drake has overcome so many obstacles that you have placed in his path. I have the privilege of seeing the joy on his face when he is able to complete a task that is so easy for other children. I am so in love with Drake’s sweet-spiritied personality and laid back attitude in most situations. I thank you for allowing Drake’s personality to shine above any other issues he may face.
You may always be a part of Drake’s life, but…until my last breath, I will fight to make sure you allow him to thrive.
Understand this Autism, I am older and I cannot live forever….you MUST allow him to live independently from my husband and I. There is no other option, you must. I cannot live with this fear of the future every single day. I just ask for his independence. Please.
I will anxiously await your reply. I hope you are not offended by my honesty and overwhelming feelings. I’m just a Mama, trying to understand you so that I can better understand my child. We are in this together now. Help me, so that I may help my son.
J. Powell ( Drake’s Mama)
Jill has been married to her husband for 18 years, and is mum to Drake, who is 4 years-old. Drake was diagnosed with ASD at when he was 2 and a half. Their days are filled with therapy, pre-school, adaptive gymnastics, and have recently added a service dog to the mix. Her life is crazy but good!