You may have gotten this from my posts about fear and the autism clinic last week, but the truth is I’m struggling. Special needs parenting is kicking my butt in a whole new way. I knew C would have a difficult time transitioning to preschool. I didn’t expect to see him lose skills and independence. I didn’t anticipate that he would get a cold and end up vomiting so many times that he hasn’t kept a full tube feeding down in days. Yes, vomiting from a cold; because that’s how his life is as a tubie.
That nagging fear is rising again. How much weight will he lose? Will he behave this badly in school? When will he regain the independence he gave up? Am I a terrible mother because he completely exhausts me right now?
He’s having meltdowns over minor transitions, obsessing over things even though I’ve explained them endlessly, eating less orally, unable to go to the bathroom without me standing in the doorway, and completely unable to do anything out of a specific order he has created. He is confrontational about everything, talks back constantly, refuses to follow my direction and yet needs to be on me all the time.
By the end of the day, I am an emotional mess of tears and mental exhaustion.
I see my son slipping backward on all fronts. As I write out a list of his symptoms to prepare for the autism clinic next month, I see a very lengthy list staring back at me. The permanence of an ASD diagnosis weighs heavily on my heart. Without realizing it, I’ve clung to the belief that all of this is temporary. Someday he might sustain himself orally and we might get rid of the g-tube. Someday he will be equipped with the tools to handle his sensory processing disorder. Someday his body will outgrow his gastroparesis and related reflux. But ASD is permanent.
Yet, I’m afraid he won’t get the diagnosis. I can’t reconcile in my mind how he could need this much help and not have ASD. If that is the case, will our insurance approve adequate therapy without the diagnosis?
So much fear. Such long days. Tears. Exhaustion.
The truth is I’m struggling right now. I’m thankful for our support system even during these days when I’ve been quietly struggling alone. I’m telling you all this because crying myself to sleep isn’t something I can sustain. I need to share these personal battles and fears “out loud.” Our family could use all the prayers you may offer as we continue to navigate C’s care.
Raising a child with special needs truly does require a village of people who fill different roles to love, pray, send words or thoughts of support, offer wisdom, share knowledge, or physically help with the daily grind. We love you and are infinitely grateful for you.