How We Got Here: a Diagnosis
We all need truth tellers in our lives. People who tell it like it is— the kind of people who will announce that there’s spinach in our teeth without batting an eye. In order for truth tellers to be useful, they have to know us, love us, and support us. You can’t have just any old person be a truth teller in your life; they have to prove their worth before they speak. You have to know you can trust someone before you can hear the truth and receive it from them.
Two such truth tellers in my life, my principal and my school psych, were key players in the beginning of my journey with Marshall. I was in a meeting with both of them around Marshall’s first birthday, and as we waited for the rest of the people to filter in, they asked me how Marshall was doing. They asked me if he was talking, and I told them he wasn’t really saying anything yet. I can’t remember who spoke first, but they both shared that he should be talking by now—was my pediatrician worried? (Nope!) How did I feel everything else was going? (I wasn’t sure?) Did I know about early intervention options? (I didn’t.)
Emily, the school psych, jumped right into what she does best—helping people create an action plan. She carefully weaved her own experiences with the truth of what my options were. She told me who to call, what to say, and what the process would look like. Have you ever met someone who seems to somehow knows every living detail about a topic? That’s my friend Emily. She is an expert on all things related to student services—what kids need, where they can get it, and who is responsible legally. She is a gold mine. She is my gold mine. I cannot tell you how many times in the last few years I’ve called her about Marshall. She is an excellent listener, and asks just the right questions to narrow down what a person is looking for. She has a way of breaking down confusing information for anyone without being condescending or disrespectful. She has been a key component in so many steps of our journey, and I could not be more thankful.
I took my post it note from that meeting, made the phone calls, and got Marshall started in early intervention. That day was the starting point of the long and winding road to where we are today. For a year and a half, someone came to our home, answered my questions, gave us resources, and assessed Marshall every so often to see what progress we were making.
Somewhere along the way, it became clear to me that we needed more answers. As Marshall approached two and half years old, I wasn’t happy with the progress we had made and felt more and more each day that he was on the spectrum. I watched a video that showed typical toddlers and how they interacted with toys and people, and toddlers who showed signs of ASD (see link below) and my heart sank. I knew that was my kid.
I’ll never forget the morning I called Emily into my room during my planning time and blurted out, “What do you do if you think your kid is autistic?” I lost it. I cried. She listened. We formed a plan. She assured me that he would still be the same Marshall, diagnosis or not, and that the diagnosis didn’t have to determine the course of his life. An assessment would give us, at the very least, more specific information about what his strengths and weaknesses were, and what specific therapy would be beneficial to him. The label didn’t have to stay forever—it could actually be removed if he no longer fit the criteria later in life. This was huge for me—my biggest fear was giving my kid a potentially inaccurate label at a young age that he couldn’t get out from under. I think Emily and I both knew that I still wasn’t ready for a diagnosis. We decided to ask early intervention to do a more in depth assessment of Marshall and to seek out structured occupational therapy as a starting point.
At age two and half, we parted ways with early intervention and sought out occupational therapy on our own. Marshall was assessed and assigned a slot with a stranger that would become one of our biggest allies: Miss Emily. From our very first appointment, I knew we were in the right hands. Miss Emily would become a truth teller for us, too. She seemed to understand Marshall right away, and we started a calculated journey of linear intervention for what felt like the first time. I do not want to speak poorly of early intervention—it is an amazing resource, and it was a great starting point for us. (Not to mention that it’s free!) Personally, however, I wish we would have sought out specific therapy sooner.
We started seeing Miss Emily every week, and after a few weeks she shared that she, too, believed that he could be on the spectrum. It was honestly a breath of fresh air. I was ready. We were ready. I was pregnant with Joey and knew it was time to figure out exactly what was going on and exactly what the best course of action would be. She warned me that there was typically a pretty long waiting period between being referred to the developmental pediatrician and when the assessment could be scheduled, that we would likely not be seen until January or February. I made all the calls, filled out the forms, and wouldn’t you know it, we got in in September, when I would be on maternity leave with Joey.
On September 6, 2016, a date that will always be fresh in my mind, we went as a family to the developmental pediatrician: Wes, Marshall, myself and 4-week-old baby Joey. We walked in unsure of what to expect, and we walked out with answers. We had a path, a plan, and a checklist, and the next leg of our journey began. I remember thinking that I should have felt overwhelmed, thinking that I should have been more emotional, and yet all I felt was relief. I was ready.
For the first time in my life as a mom, I walked out of that appointment feeling confident about my next steps. We left with loads of information, plans to contact the school district and look into an IEP, a list of preschool options, and a battery of other specialists to visit to rule out other issues (vision, hearing, etc.). Finally! The path we were on was linear and calculated—or so I thought. I would soon learn, however, that the path to parenting a child with special needs is full of twists, turns, and forks in the road: decision after decision that slowly etch the path for you and your child.
For us in our journey, Marshall’s diagnosis came at just the right time. I don’t believe in coincidences-- I truly believe that the Lord carved out that date for us, knowing it was the right time. If we would have had Marshall assessed at age 2, I don’t think I would have been ready. My brain would have travelled tirelessly down the path of “what ifs.” What if he would have responded to therapy, and all of this melted away? What if these were just delays that looked like autism? It took time to come to grips with our reality, and to decide how we wanted to proceed. When your pediatrician isn’t worried, it’s hard to feel accurate in your pursuit of more information. When most of your family and friends aren’t worried, it’s easy to doubt your gut. Those are all good things, by the way— I wouldn’t have traded our experience or our support system for anything. The confidence of others that Marshall was okay gave me the freedom to come to terms with who he was at my own pace—I didn’t feel forced or pressured by anyone.
The entire experience can be best summed up by the exchange between my best friend, Lindy, and I when I told her Marshall was diagnosed. It’s the only part of that day that makes me emotional when I think about it.
When I texted her, her response was quick and direct.
“And do you love him any less?”
I smiled, wiped away tears, and replied “of course not.”
That’s the truth of it all. Giving a name to my child’s struggles didn’t cost us an ounce of his personality, his strengths, his joy, his spirit, or his potential. Giving a name to his struggles didn’t determine his path or remove any possibilities for him. In some ways, it opened doors we never expected.
Here’s the video I watched that gave me some clarity— it was created by the Kennedy Krieger Institute