I’m still here! Are you? Now, where was I?…
Oh yes, last time I blogged about autism and our son I shared how God reassured me in that He “has something special in mind for [my son].” As I noted there, I started sharing these posts in September 2017 but I originally wrote them privately as we were going through it three years ago, 2014 and the last one I wrote was a year ago (2016). And now, it’s time to write new ones. It’s hard to catch up on a years worth of life! Feel free to come along with me as I stumble back through a year of fragmented memories.
We received the official High Functioning Autism diagnosis (used to be called Asperger’s Syndrome) in September 2016. As I said before, I felt relieved to receive the verification of what I’d suspected about him. Though I didn’t want him to “have Autism”, I felt a certain satisfaction knowing there is something that explains his behavior. I didn’t know exactly what it all meant or where we’d go from there but, as a friend put it to me – At least now I knew what road we are on.
Well, I’d like to say life was easier after that – and in many ways it was because I at least had the big question answered. I felt like I finally had the right key to the car I’d been sitting in and I felt very excited that I finally had the answer. But then…I sat there in the car and realized I had no idea how to drive or where I was even going to go! This was no self-starting, self-driving smart car – nope – this was a good ol’ stick-shift-and-clutch kind of machine.
It didn’t take long after the diagnosis for me to feel almost as confused and helpless as before. I guess I naively expected that someone would call me and offer to take my hand as we walked through this new path with our son. “They” would explain autism to me and how it related to our son. “They” would tell us exactly what he needed and where to get it. “They” would be there in his “out of the window” moments when I had no clue how to handle him and “they” would tell me exactly what to say or do. “They” – the experts who knew more than my husband and I – would teach us, train us, encourage us, and guide us.
I looked for “They”, calling around different “autism-specialist” places in our area hoping “They” would take pity on me. Instead, I ran into wall, after wall, after hard-concrete-reinforced-wall.
Yes, we’d love to help…would you like to add him to our two-year waiting list? Bam!
Yes, we offer free services….but he’s not severe enough. Bam!
Sorry, he’s too old (most “free services” end at age 5). Bam!
Um, how much will that be….oh! Each time for how many times each month or week? Yikes. Expensive!!!! Bam!
And, a super-high insurance deductible we’d never reach before paying burning a hole through our pocket and our savings. Bam!
Once again, I felt trapped. Trapped in the gap. The gap between typical and severely atypical, the gap between too young and too old, trapped in the gap between making too much money and not enough.
Looking back, however, I see that I was also trapped in my own grief. Yes, apparently grief comes not only after the death of a loved one like I was already experiencing, it also comes after a life-changing diagnosis. And, like death-related grief, there are normal “grief stages” one goes through. Without realizing it, I was in the Denial and Isolation phase about the autism (like with my dad’s death) even though I told myself I accepted it. I both yearned for help to walk us through this journey and, at the same time, recoiled and just wanted my son to “be normal”.
Looking back, I think one reason I didn’t find the help I sought was because I was looking for someone who would make my son “normal” again – and our life easier. That person did not exist because that was an unrealistic expectation.
I also assumed “They” were the experts and knew more than we could about how to help our son. I assumed everyone else – the therapists, specialists, teachers – would be the ones to tell me what my son needed and what we needed to do for him.
I had the key. I started the car. For a while I sputtered along awkwardly riding the clutch and grinding the gears trying to decide which gear to shift into next, still unsure of our destination.
Then, slowly, slowly my foot eased off the clutch and the gears didn’t grind quite as loudly. I prayed more for acceptance than for a miraculous “easy button” to suddenly appear. I prayed more for guidance – that God would lead me to the right resources and the right people. I prayed more for grace-filled patience to deal with the out-of-control moments. And He answered me.
With my husband’s encouragement, I took steps to make sure my needs were taken care of so I could function better and have the physical and emotional strength I needed for my family. I joined the Y and developed exercise routines; I found a great doctor and counselor to navigate me through all the grief and confusing emotions that go along with parenting a child with unique needs; I searched for books and podcasts and other resources to give me a better understanding and perspective of the what and the who of Autism; and I simply took time to just be with God and enJOY Him in the subtleties of life.
For everyone who asks, receives; and the one who seeks, finds; and to the one who knocks, the door will be opened. (Matt 7:8)
I reached out to a local parent-to-parent group and met a mother whose son had similar struggles as ours and I found a support group for Catholic Mothers with Special Needs Children – it was the group I didn’t want to need but when I finally started going I knew it was the group I needed and wanted. Though we all faced our own unique challenging children, we all shared the same hopes and prayers for them and our families. I discovered how powerfully encouraging these simple words can be:
My child, too.
Slowly, slowly – God breathed His Grace through me and slowly, slowly my grief turned into hope and I began to see the joy and peace in myself, in our son, and our family.
May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the holy Spirit. (Romans 15:13)
About six months after the diagnosis, we finally found a therapist who was an “autism specialist”, didn’t have a two-year-long waiting list, was located on our side of town, and was more than happy to work with us and our budget. Through that, the support groups and resources I plugged into, I feel like I’m finally getting the hang of “driving the car”.
I still ride the clutch and grind the gears more often than not and I’m still not quite sure where the heck we’re going, but I’m going – and that’s the first step to getting wherever we’ll end up.
What I am doing, you do not understand now, but you will understand later.(John 13:7)