The Report

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?

18 Comments

  1. I hope you find what you need in that report—to help you and your daughter cope with her challenges. I get what you’re saying about wanting validation. FWIW, from your writing, it sounds like you are amazingly patient & empathetic to your daughter’s needs. I have a challenging kid and I revert constantly to yelling and at times roughly handling him. I haven’t put in one quarter of the time & effort to read about & understand him. You are really pushing me to do more.

    1. Oh, I “revert to yelling and at time rough handling” EVERY DAY. Especially this summer when I’m with her for TWELVE HOURS A DAY. I lose my shit with her on the reg. But I’m quicker to recognize that me losing my shit with her is my thing and to make a repair attempt. I feel like I am constantly failing her in that regard, like if I could just respond appropriately every time–instead of make mistakes and then repair attempts–that our lives would be sing-song perfect. Of course that is a delusion, but it’s an easy one to believe in when I know I’ll never be a perfect parent.

      1. “I feel like I am constantly failing her in that regard, like if I could just respond appropriately every time–instead of make mistakes and then repair attempts–that our lives would be sing-song perfect.”

        This!
        I suspect that this is the hardest part of parenting “challenging” children (as opposed to parenting CHALLENGING children- in those cases it is obvious that nobody has any real power to affect outcomes). There is always the voice that says: “if I had gotten a snack in him, if he had slept better, if we had left earlier….” And then we feel like we’ve FAILED. Of course we should try and help them cope but when things don’t go well, we should also learn to say “this shit happens”.

  2. E and I are optimized for button-pushing too. I cannot stand to be touched at times and she’s constantly yanking on me. I am sensitive to lots of sounds at once – she is a noise-making machine. OT was not on our radar when we went to our SPD/feeding clinic and they recommended it, but I was just writing a still-unpublished birthday post about how much it changed E’s life this year. I think you’re pursuing this for the right reasons. Yes, you want something to help YOU too, of course, but when you find the right thing, it will help her too. It can’t feel good to her that she is out-of-control sometimes or gets in trouble for things she doesn’t know how to stop doing. Learning what she needs and how to express it will be so valuable, especially when school gets more and more demanding.
    And to actually answer the question you asked – for me the diagnosis connected dots that we didn’t know were connected. It gives me patience (sometimes, anyway) to know WHY she’s acting out.

    1. Oh my g-d, the yanking. I go from 0-60 with the yanking. I absolutely cannot stand it. And that is something my daughter does ALL THE TIME. She is always yanking, pulling, bumping into, kind-of hitting me (which is different than when she is actually hitting me). It drives me fucking nuts. And I’m recognizing that the degree to which it drives me nuts is not necessarily “normal” and that I have my own work to do on this stuff too.

      I also find that understanding better why she acts the way she does helps me be empathetic and with empathy comes a patience I didn’t have before. I do feel for her that she feels out of control–I know that feeling well. In fact, I feel like I recognize much of what she is going through. I was basically just told to suck it up and learn how to act in an “acceptable” manner. It’s hard not to fall back on that with her. And I find myself wanting to confine her to the box that the rest of the world expects she’ll fit into, probably because I was confined to that box myself. But that is a whole other post I’m realizing (right now) that I need to write…

  3. I think the best thing we can do for our kids is work towards understanding them. The trick is to do this without restricting their capacity to change. I know that g is on the “sensitive” spectrum somewhere and always will be. As a baby, this nature of his almost did me in (colic). Now, at 6, he is still g but G and I were talking just yesterday about how much he has grown- and with him his coping skills and capacity for adapting – even his eating habits.

    He has indeed “grown out of” so much. Unfortunately, nobody can tell me how much of this was just his development and how much was impacted by his surroundings. Did someone do something right? Is this just a good phase?

    You are doing the best you can. Try not to loose sight of the fact that there is a healthy dose of this that you will simply have to learn to accept. If only any of us knew where those boundaries lie…….

    1. “Try not to loose sight of the fact that there is a healthy dose of this that you will simply have to learn to accept.” This is really good advice. I am trying not to loose sight of it, but it helps to be reminded.

      And it’s true that my daughter has “grown out of” so many of the challenging behaviors we were dealing with at 2 or 3 or even 4. Part of that is her maturing and part of that is us recognizing what she can and can’t handle (it took us a long time to realize that what she wanted to be able to handle and what she actually could handle were sometimes very different things). It also involved us accepting that she wouldn’t necessarily respond to certain situations in the same way we saw her peers responding to them. All that to say, she’s grown out of a lot, and so have we.

  4. Perhaps the fact that the study/report helps you see ‘you’ and your automatic deeply ingrained reactions/needs which are not a perfect match for who she is (and I have never met a parent yet who is a perfect match) is part of the valuable leaning part of the report. If your husband has read the report does he see similar information about the who of himself in either her or opposition to the who of her? I only ask because the issues we face with the who of ourselves happens in relationship to others. Seeing ourselves can help. Seeing our own childhood and how our parent figures responded to us can also help.
    For me knowledge helps, for me understanding is not a booby prize. For me putting language around and identifying a situation/event/reaction helps. Hopefully this report gives you ways to do that, and hopefully it helps you also.

    1. You are wise. Very wise. I think the report will give me all of this. I just have to read it in the right way.

    1. OT once a week, for us to employ some strategies at home and to enroll our daughter in some extra curricular activities that will help her build some of the skills sets she struggles with.

  5. We have not yet pursued diagnosis; I did take V to a speech therapist 3 years ago and that gave me some light – like permission to correct her pronunciation. But I just had a hard conversation with her teacher this morning about V’s anxiety issues… and it made me think about it again. I feel like part of the problem is how the teacher tries to manage her, strategies that just do NOT work with V, but maybe there is more we can do to help V learn to manage and cope better… She’s only 7… This is hard. Parenting is by far the hardest thing I have ever done and I daily question my suitability for it.

    1. I am so, so worried that my daughter’s teacher is going to use strategies that don’t work well with her. My daughter is so sensitive and I’m terrified that she’ll end up hating school because she’s can tell she’s getting on her teacher’s nerves. I’m sorry V is dealing with anxiety issues. That is so, so hard. When my daughter was having nightly nightmares I was so upset. I wanted to badly to make it better for her but I couldn’t. You’re right that parenting is so, so hard. I also question my suitability for it.

  6. I don’t have any advice, though I do hope meeting with the professional to go over the report is useful.

    My solution to a happy home-life is year-round full-time childcare. (Similarly, my advice for getting along with one’s parents and in-laws is living several states away!) That’s probably not an applicable solution for a lot of people.

    1. full-time, year-round child care sounds divine. I’m lucky that I get a long well with both my parents and my in-laws (and they are both indispensable to us) so I’m glad we don’t live a few states away from either.

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