Tuesday, January 21, 2014

Some thoughts on receiving a diagnosis

Recently I shared this quote on The Special Reds community page on Facebook:
I had some comment on how important the diagnosis is to be able to receive the right help for your child. This is true. I believe it now. But 8 1/2 years ago if you showed me this quote, I would feel even more lost, concerned, and hopeless about my little girl Julianna, who was then just 18 months old. This is when I began wondering, questioning, but all the while, supressing those thoughts that something just wasn't right about my child.
She was my first, and I was only 21 when she was born. The oldest grandchild on both sides. No health concerns from either side of the family that could help solve the puzzle. But even though inside I was questioning, on the outside, I wanted her to be just fine. I dismissed her behaviors. I overlooked her gross and fine motor delays. I didn't want anything to define her. I didn't want her to have a diagnosis at all. I just wanted her to be J-babe, and that's all.
I know that people who reached out to me in those early years only did it out of concern. I mentioned before that my neighbor in student housing knocked on my door and sat me down, telling me she thought my daughter had autism. Hearing those words brought a little clarity to my brain, but pain to my heart. They made me feel like all those thoughts I had inside weren't crazy, but at the same time, on the outside, I didn't want to believe it. Back then, I really didn't think any diagnosis would help me. Maybe that's because I was only thinking about me, and not my precious daughter. My daughter who needed to be understood, figured out, helped tremendously. But also my beautiful daughter whom I didn't want to be treated differently because she had a diagnosis.
I remember just before we left Utah, our pediatrician told me about a playgroup for kids who are delayed. She was 16 months old. As far as I wanted to believe at that point, she just had a delay in gross motor skills, because that's all the doctor would point out. So I went to this playgroup, and I wanted to leave as soon as I arrived. I saw children with serious needs, much more than my little girl's. Everyone there welcomed me and asked about my daughter. They included her in the activities. Looking back there was such a good feeling in that room, a feeling of support, love, and understanding. The only problem was, in my mind at the time, that I didn't belong. J-babe didn't belong there. She couldn't be grouped with those kids. Why did her pediatrician tell us to come? Did he think there was more to J-babe than just a delay in walking? So I didn't even stay for the entire meeting. I made up some excuse and left. This was my mentality in the beginning. I didn't want anything to make her different, to define her, to separate her from the norm.
I hadn't yet realized that she was different, but different is okay. That her needs, thought they didn't match the severity of those in the room, were still needs, challenges, that needed to be addressed and solved.
It took a few more years, but the moment I finally realized that it was okay for her to have a diagnosis was the moment I felt free again as a mom, free from all the questioning and concerns racing in my mind, and free of the pain in my heart, too. It was such a good feeling. That moment was when my mom called when J-babe was 3 years old and told me about something called Sensory Processing Disorder, something she heard about from a good friend in our old ward in church (you know who you are) because she was going through it with her own child. As soon as I read about it, I knew that's what my J-babe was struggling with. It was a starting point for me that led to meeting amazing therapists, teachers, and friends who have guided me all these years.
So, when you think about it, a diagnosis isn't all that bad. After all, other children get diagnosed with cancer, or the flu, or any other health problem, and in most cases, they can be cured. I guess the hard thing about a diagnosis when it deals with special needs is that the diagnosis stays, at least in this lifetime. It doesn't get "cured", in most cases (though some would like to believe that). But what the diagnosis does is give you the knowledge and tools to move forward, to get answers. And at times it does feel "limiting" when you don't know what the future holds. You have no idea how far your child will go with their diagnosis. All you can do is hope that what you are doing to help, now that you know what the problem is, will actually bring some change and growth. J-babe has been diagnosed with so many things over the years, and each one, while they have been a slap in the face, have helped me and others understand her better. And I wouldn't change that for anything.


  1. The diagnosis is a vital part of understanding what a patient is going through. I agree that it musn't define the patient, nor a factor for them to be put on a leash, especially in cases of autism. At any rate, the diagnosis is meant to give you additional information to help answer questions and calm worries, so those are not meant to be feared. Thanks for the great read! All the best to you!

    Sabrina Craig @ Medical Attorney NY

  2. Thanks for sharing these insights.