Guest Blog: For the Therapist, From the Mom

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By: Dana Nieder

Reprinted with the express permission of the author as it originally appeared on her blog Uncommon Sense, May 3, 2011

It’s been over 2 years since we started therapies. We are lucky to have a spectacular team of therapists who love Maya dearly, and I consider to be surrogate family members. But we went through a few others before we had our perfect team, and before I forget what the beginning was like, I thought that I should write this stuff down. So, here are my thoughts for the therapists, from the beginning.

Come on in, stranger.

Welcome to my shambles.

My sweet, beautiful, wonderful child has just been through a series of evaluations specifically designed to figure out exactly where she doesn’t quite measure up. Then I got to read about her shortcomings (quantified . . . lovely. How lucky are the parents who never get to know their child’s percentile ranking on their worst skills). I sat before a scary official who’s primary goal is to keep costs low, and I fought to get as much therapy as possible . . . I have no idea what you all will do, but figured that “more” = “better”.

And here you are.

And I can’t help but slightly resent you (Just scheduling this initial meeting was challenging enough. I don’t want this for my kid. I want to be at the park, or the zoo. Not here.) and have all of my hopes pinned on you at the same time.

Please help her.

Please help me to help her.

We’re going to spend the next few years together, for better or worse. So let me share a few thoughts right up front—-

First, the basics. Timeliness. You might be of the mind that 5-10 minutes late isn’t really “late”, it’s basically on time. I am not of that mind. Here’s why. I will always have my child ready for you 5 minutes early . . . so, if you are 10 minutes late we will have spent the last 15 minutes waiting around talking about your arrival. Also realize that we have 2 other appointments today . . . I knew that we had exactly 35 minutes between our last session and your arrival, which was, sadly, not enough time to get to the playground, so instead we had to settle for a quick snack and a walk around the block. Had I known we would actually have 10 extra minutes, we would have had time for the playground. I could have talked to neighborhood mom friends, and she could have played like an average kid. But here we are, sitting in the living room and watching the clock tick and getting more sad and frustrated with each passing minute that we could have been doing anything-other-than-waiting-for-you.

If, for whatever reason, you are running late, please let me know. If you are supposed to arrive at 3:30, texting me at 3:33 is not letting me know. It’s better than nothing, but only slightly.

And for the love of all that is good, if you arrive late you better be staying late. I don’t care if you have another appointment right after us. If you arrive 5 minutes late and leave on time, I will question your devotion to my child and think that you are just trying to pass the time.

Next, involve me. You have the therapeutic knowledge, and I have the knowledge of my kid. Let’s work together. If you ask me “Hey, are you open to taping her hands? Here’s why I think it would be a good idea . . . what do you think?” I will be open-minded and work with you. If you tell me “I’m going to tape her hands”, I will feel bossed around. Remember, we currently have 5 therapists, and each of you has your own agenda (and don’t even get me started on the doctors). Please let me be the mom and make decisions for my child, even if sometimes we don’t see eye to eye. If you let me be involved in the plan, I will be much more likely to go along with your ideas, because I will trust you.

Thirdly, I will ask a lot of questions. I will learn to watch my child and make mental notes, and hit you with a list of questions. (“Why does she move her tongue like that?” “How can I get her to unclench her thumb?” “ Is there a way to position my hands to help her balance better?”) I will not expect you to know every answer, but I would greatly appreciate it if you could help me find them. A simple “Hmm. Let me talk to my colleague and get back to you on that. We’ll figure something out.” will make me indebted you—you listened to me, admitted that you’re unsure, and committed to trying to learn more about how to help my kid. I will love you for this.

Finally, above all other things . . . please love my child. Or at least pretend that you do. I am scared for her, and I feel like we’re alone. I worry about if people will understand her, or put in the effort necessary to do so. I worry about whether people on the street will look at her differently. I worry about whether she’ll have friends.

You, therapists, are her first friends. She’ll learn to expect one of you when the doorbell rings, and (hopefully) she’ll get excited when she realizes that you’re here.

You’re the first people that she gets introduced to, and I’m nervously hoping that you’ll offer her smiles and hugs and encouragement.

If you love her, her days aren’t filled with “sessions”, they’re filled with “playdates”. She will have fun and learn and grow, and I will be eternally grateful that a) you are helping her and b) she is none the wiser. I want to think “she’s so lucky to have all of these great therapists coming to shower her with attention!” and not “poor kid, never gets to play with other kids because all we get to do is therapy.”

Featured Guest Blogger: Dana Nieder

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One Response to Guest Blog: For the Therapist, From the Mom

  1. Michael Margolies says:

    Dear Dana,
    As a physical therapist, who has worked with special needs children for many years, and as a parent of a special needs child, I’ve been on “both sides.” I agree with all your points, and (hopefully) the parents of the children I’ve treated over the years, will say that I’ve been following them. But, from the therapist side of me, I would like to express my “bones of contention.”
    (from the sound of your blog, I doubt that you are guilty of any of them)
    1. Does your child really NEED therapy?
    I’ve gotten referrals in which the evaluation was performed nearly a year prior to the start of treatment. Or, the child has been receiving therapy by therapists who have not recommended discharge, despite the fact that the goals have either been met, or are unrealistic. When, in my professional judgement, I recommend that the service be discontinued, more often than not, I’ve been met by resistance. I even had a parent once respond by saying “I know he needs therapy, but I don’t know why.”
    2. Unrealistic expectations
    I’ve gotten referrals to improve a child’s ability to run, or play in a playground, when the only space I have is a about 6 six square feet on an uncarpeted floor in the living room. When I’ve tried to discuss this with the parent, the response has sometimes been, “Well, you’re the therapist, you should know how to work with him/her.”
    3. Going behind my back
    I’ve had situations where I thought the therapy has been going very well, and the relationship has been good with the family, only to get a call from the service coordinator, with complaints that could have been easily handled face to face. I’ve even had parents ask for a new therapist, after I’d been treating a child for several months, without even a phone call or text to explain their actions.
    In conclusion, I believe that most therapists have gone into their respective fields for the “right reasons”, they do “love” the child, and want to work with the family to help him or her improve. But, we’re not perfect, and do make mistakes. Having respect for our skills and knowledge, and communicating in an honest, effective manner, will make the relationship more rewarding and successful, for all of us.