Last April

It was at this time a year ago that we received the diagnosis of autism for our youngest child. Needless to say, it was devastating. I wanted any other diagnosis but that. Autism is a big pill to swallow. Anyone who has walked this path understands this.

A year ago, I was hopeful, however. I was hopeful that I would find “our people.” I was hopeful that things would improve, that we would find answers for some of the specific struggles my son was experiencing.

But that hasn’t happened. I haven’t found “our people.” In fact, I haven’t found anyone. When I posted about the diagnosis last June, many well-meaning parents of children with autism said they were there for us and that they’d be “our people,” but that didn’t end up to be our reality, sadly. It was disappointing and hurtful, to be honest. I do have, however, two of the same people with special needs kids that I had before his diagnosis. They continue to be the best support, the ones without judgement and the ones with the most understanding and empathy. I praise God for them! They truly understand the saying by Dr. Stephen Shore: “If you’ve met one individual with autism, you’ve met one individual with autism.” They understand that, while there are certain traits that identify with autism (such as sensory issues, flat affect, lack of eye contact, cognitive rigidity, communication deficits, etc.), no two individuals with autism are the same. Just because you’ve seen or know one person with autism doesn’t mean my child with autism is the same.

The difficult issues and behavior that accompany my son’s autism continue. To say it’s hard to deal with is an understatement. His autism and the accompanying conditions (depression, anxiety, receptive/expressive language disorder, executive functioning disorder, etc.) affect our entire family, especially me. Never have I dealt with mental health issues like I have in dealing with his autism and other issues. I never used to struggle with anxiety. I wasn’t a timid person. I was usually the first person to volunteer for whatever need arose.

But now? Now I deal with secondhand trauma. I don’t put myself out there like I used to, and I don’t have the time, energy, or emotional capacity to volunteer much. Navigating autism and advocating for my son is a full-time job that has absolutely affected me negatively. I wish this weren’t true. I wish things were different. I wish autism didn’t affect my child the way it does. I wish it didn’t affect me the way it does. The last two weeks have pushed me to the end of myself. I can do nothing but fall to the ground and beg God for relief. Why is help so long in coming? Why do we have to struggle so? Why does life with autism have to be so hard?

Psalms 61:1-3

Hear my cry, God;
Give Your attention to my prayer.
From the end of the earth I call to You when my heart is faint;
Lead me to the rock that is higher than I.
For You have been a refuge for me,
A tower of strength against the enemy.

My hope is thin. I’ve done everything I can do, but it seems to no avail. I am truly at the mercy of the LORD. I’m struggling with discouragement. I’m struggling with fear. I’m wrestling with doubt. Thankfully, however, I’ve learned not to project into the future. I take captive every thought, so to speak, and don’t allow my mind to wander into the murky “what if” waters. I know that’s where the enemy can drown. Discouragement is dangerous, and I don’t like feeling like this. It’s lonely and the enemy uses it to isolate. I guess that’s why I decided to write this post, as an insurance of sorts against isolation. It’s easy to fall for the lie that I’m the only one struggling with a child who has autism-related behavioral and mental health issues. This lie is also an excellent isolation tactic by Satan, but I refuse to be taken captive.

I keep thinking about the word discouragement, that it is comprised of the word “dis” which means without, and the word “courage.” To be without courage is easy when one is relying on self. But I remember that while I do not have courage, I have a God who is all-powerful, all-knowing, and ever-present. (The fancy words for these are Omnipotent, Omniscient, and Omnipresent.) I know that I have no strength, but I remember the apostle Paul’s words in Philippians 4:13: “I can do all things through Him who strengthens me.” Through Christ. Through Christ I can persevere. Christ strengthens me. He gives me strength. God’s word is precious to me. It is where I learn of His character, His nature, and of His overwhelming, never-ending love for me.

I’m grateful, too, for a therapist who helps me uncover the lies and formulate a self-care idea list (which she checks in on at subsequent visits). The practical matters a great deal more than most give credit for, I think. I’ve come to realize that I downplayed how much trauma I had experienced, not only in my childhood, but in the past 12 1/2 years with the loss of my son, my mother, my brother, my grandmother, my father-in-law, my cousin, and several close friends. New trauma, like our house fire six months ago, has added to the long list of experiences. My son’s autism diagnosis was yet another incident in which I minimized the effect it had on me. (Not to mention, living with the daily issues my child’s autism brings.) It’s been an incredible relief to know I can be honest with someone safe, like my counselor, but also with the God of the universe, the One who understands and knows all things. He is my fortress, my hiding place, my rock. He is my comfort and strength, my place of refuge.

My hope, however thin, remains in the LORD. I will praise His name. In the words of the Matt Redman song, “Blessed Be Your Name:”

Blessed Be Your name
When I’m found in the desert place
Though I walk through the wilderness
Blessed Be Your name

With hope in Christ,

Angie