This post was originally published on The Mighty.
I sat down to write a piece on how a diagnosis doesn’t matter. But as I wrote, my confidence in my position faded.
I realized how much the diagnosis really did mean to our family.
My daughter has Sensory Processing Disorder (SPD). That is her diagnosis.
On the scale, she is very high functioning. She struggles with certain noises; most noises, actually. She does not like to be touched or moved by anyone. She is easily overwhelmed by almost any environment other than home. Most stimulation she can handle in the moment, but she will crash from the intensity when she returns to home base. She often seems out of touch and difficult to reach.
She was only three when we found out. We’ve been told we were lucky to get her diagnosed so young. But I struggled. I did not feel “lucky.” I just didn’t want it to be true, no matter how hard our lives had become. I kept reading more and challenging each perspective. I’d say, “Well, this applies, but that doesn’t really fit.”
It’s been 10 months now; it’s finally sinking in.
I still struggle with accepting that there is something “wrong” with her, but I feel better about it every day. In fact, I believe having a diagnosis has actually helped.
A Diagnosis Removes the Blame
Before we had a diagnosis, we were lost.
Life with our daughter had been an emotional roller coaster. Our relationship often felt broken. Her tantrums were escalating daily. It seemed impossible to connect with her. My husband and I couldn’t agree on how to parent her because most of what we tried didn’t work. Or, we weren’t consistent. We were overwhelmed too.
I blamed everyone. I blamed my daughter for being difficult. I blamed my husband for not being supportive enough. Most of all, I blamed myself for not being an ideal mother. If I could have just been a little more patient, maybe she would have turned out differently. What if there was something wrong with my personality that I couldn’t “get along” with her?
I would look at my friends’ experiences and try to figure out what was wrong with our family. I’d watch people sail through the early months and years with simple, easy to handle babies and feel embarrassed that our family was such a mess. I could barely see through my jealousy and pain.
Having the diagnosis lifted the pressure off of all of us. She was not “difficult” and we were not “failures” as parents. We could all go back to seeing what we love about each other, because what was tearing us apart wasn’t anyone’s fault. It is just biology. A roll of the genetic dice.
A Diagnosis Provides a Language
A diagnosis provides words to describe something that has been there all along. Whether or not we had a name for what was distressing our daughter, it was there. It affected every single area of her life. It was keeping us from being close to her, and providing her a safe, secure childhood.
Now knowing that it is SPD, we have learned the language that directly describes her symptoms. It is this education that allows us to identify what she is struggling with.
And once you know what it going on, you can find a solution.
A Diagnosis Gets You Help
Something was desperately wrong. Everywhere we turned, our lives were falling apart. We just couldn’t quite put our finger on what it was. We wanted to fix it, needed to fix it, but we didn’t know how. I spent endless hours talking it through with my husband. We’d stay up late and hash out plans. It would work in the short term, but fall apart after a week.
It was in marriage counseling that our therapist read between the lines and saw that there was actually a problem with our daughter. She guided us to the appropriate resources for getting an assessment and treatment.
Having a diagnosis points you toward a specific solution to a specific problem. We were no longer floundering around in the dark trying to figure out a way to help our daughter. When she is overstimulated, I can offer some quiet time in her room or suggest wind down activity. If she is having a tantrum, I can offer a deep, loving, belly-to-belly bear hug to normalize her senses.
We are not perfect; it takes a lot of extra work and presence of mind to keep an easily overwhelmed child calm. But finding a solution is so much easier now that we know what the problem is.
A Diagnosis Brings You Closer
I have felt so alone as a mother. Most people, including our family, have not been able to understand our struggles with our daughter. To the outside world, she seems normal. In public, she is able to mirror the behaviors of other kids her age. This discrepancy makes it impossible for people to understand why we were always exhausted and stressed and frustrated.
The very first book I read gave me such a sense of relief that there were other kids out there like ours, and other parents out there that felt the same way. No one in our immediate circle faced a similar issue, so we were left feeling isolated, alone, and misunderstood.
Our families stayed away for quite some time. Our parents took our daughter’s rejection of them personally, which widened the divide between us and them. They even blamed her behavior on our parenting style and us being overprotective.
Now we are able to use our new knowledge to help them relate better with her. We model the behaviors they need to use to develop a successful relationship. Slowly, we are all mending.
In Some Ways the Diagnosis Doesn’t Matter
Most of the time, we don’t use the words Sensory Processing Disorder. We simply address what is happening inside her, and give her the tools to work through it. I am cautious about using a label that may cause her to feel different from other kids. She will have enough to deal with without adding that painful experience to her list.
At the end of the day, she is the same girl underneath the diagnosis. She is our daughter. She has a beautiful imagination and a sensitive side. She has an incredible memory and a sharp sense of humor. All the things that make her up have always been there, and will always be, label or not.