It took two weeks for the OT to send me my daughter’s official report. It’s 16 pages long. I’ve read it once. I kind of understand some of it. The OT and I are
failing attempting to find a time when we can get together to talk about what exactly it all means.
As with most “declarations from the professional establishment,” the anticipation overshadowed the reality. There was nothing earth shattering in the report. My daughter is still my daughter. Nothing has changed.
Did I expect something would change? I don’t think so. I’ve been thinking a lot in the past few days about what I anticipated the report would communicate. Did I hope it would give me something? Was I worried it would take something away?
It’s important to remember that half of the report is just a summary of my own answers to a 15 page questionnaire. I checked off how often my daughter does certain things and from that relaying of my observations, assumptions are made. I hate those kinds of diagnostic tools, because they can only be as accurate as the reporter who fills them out. What if my interpretations don’t reflect reality? What if I think she does something all the time when really she doesn’t? What if my threshold for a certain behavior is low so I report her doing it more than she actually does? What if the half of the report that is based on my observations is totally and completely wrong?
I’ve been thinking a lot about why we took our daughter to an OT, what we hoped to gain from the experience. Obviously we thought there was a great deal to gain, or we wouldn’t have spent $450 getting it done. So what exactly, were we looking for?
Sometimes I worry that I’m on this path for my own wellbeing and not my daughter’s. It’s possible that I’m fishing for some diagnoses to validate my struggles these past five years. Parenting my daughter has been hard. I have found it incredibly challenging. I have read so many books and tried so many strategies and none of them seemed to apply. It has been exhausting and I have been overwhelmed. I’ve had thoughts and feelings about being a mother that I’m pretty sure most mothers don’t. I sure as hell have never heard anyone voicing them, not even on anonymous blogs. Hell, not even I, someone who has exercised poor judgement on my blog numerous times, have never expressed some of the thoughts I’ve had about parenting. The whole thing has been… not at all what I expected. Dealing with my daughter has been more difficult than I ever could have ever imagined. I wonder if I wanted someone to tell me, officially, that it wasn’t my fault. That something else was going on. That it’s okay that I’ve never felt I could relate to the parents around me because their experiences weren’t relevant to my own. I was dealing with something different. I was dealing with something diagnosable.
In the end, though, no report is going to give me that. Nothing anybody writes about my daughter is going to normalize my parenting experience, no matter how much context it provides. So many people handle more challenging parenting situations with far more patience and grace than I. I know that even if a professional formalizes the challenges we’ve faced, ultimately it does little to qualify how well I’ve handled the situation.
So what am I looking for? In the end, when I strip away all the frustration and guilt and anger and shame, what I’m looking for is support. And understanding. Also a little empathy. I want to provide those for my daughter and I want to find them for myself. Perhaps if our daughter is identified, in even some minor way, on the Sensory Processing Disorders spectrum, we will find resources that can help. So many mainstream parenting strategies don’t seem to apply–it would be such a relief if a book I read felt relevant to our experience. While I doubt I will ever feel a part of the SPD parenting community, I do believe we can find resources there that will prove useful for our family.
The real reason we had our daughter assessed is we want desperately to understand. No one ever suggests a parent may need a translator of sorts to understand their child, but years of disconnect make it clear we need a little assistance. With understanding comes empathy. Already I feel more empathy for my sweet girl, and also for myself, as I identify my own sensory sensitivities and recognize that my daughter and I are perfectly matched for optimal button pushing. Every sensory seeking behavior she employs invades a personal space that I’m overly protective of. We are truly a disastrous duet, it’s a miracle we’ve lasted this long with our relationship in tact.
I waited with bated breath for that report and I now that I have it, I’ve only read it once. I’m not pouring over it, trying to dissect what it means. I’m not combing through the dense paragraphs, desperate to discover the secret to our (thus far elusive) happy family. I do still hope to find some understanding in there. And hopefully some support. And maybe just a smidgen of empathy–for both my daughter, and for myself–but I don’t think it holds all the answers. We still have a lot of work to do for daily life to feel more manageable; at the very best, this report will provide some tools that will make that work more efficient and meaningful.
What have diagnoses (or a lack thereof) meant to you?