And then I apologized...


Therapies for Pip have always been a sore spot for me. I wrote this years ago, but it rings exactly true to yesterday during a speech assessment when I lost my marbles:

"I have a love/hate, okay mostly hate relationship with Pip's therapy stuff. I love that it is available & we are being proactive instead of reactive. I love that the people involved seemed to actual care about Pip's progress & are helpful & supportive. I love that we really have seen her develop the last few months- almost as if catching up from the slow start she had at the beginning. But all that positive stuff being said- I still hate it. I hate that it even has to happen..."




Imagine...


Therapist shows Pip a drawing of 6 items & then asks questions to determine her comprehension. 


"Pip what do you watch cartoons on?"


Pip looking at me. 


Me: "I don't think I've ever used the word cartoon to any of my kids. Ask her what she watches shows on."


As soon as I said that, Pip points to the drawing of the tv-made-in-1967. 


So, my problem not only with the Dick-and-Jane drawings, is that, you apparently can't change the words or make any type of gestures - You can't possibly adapt in anyway. 



And these out-of-date-in-the-box-stringent-standardize assessments/tests kinda-sorta-make me cringe. 


My child doesn't get it-right-if-you-will, because she's never heard the word cartoon. 


UNFAIR. 


And I let her therapist know it. 


I ROARED. 


And then had to step back. 


I BREATHED.


And then I was assertive & voiced aggressively what I thought. 


I BECAME A prideful-bi-at-ch-of-a-momma-bear.


And then I sent the therapist an apology email trying to explain from a momma's-point-of-view, why I got-like-I-got. I explained that we have weekly specialist appointments & spend full days at doctors offices and in 2 weeks we are bringing Pip for her 11th surgery. That the handful or more of other medical needs in her life have taken precedent & that speech is something we took on a lot on our own. That through educating ourselves, Signing Times, Youtube videos & minimal speech therapy, she's come a helluva-a-long-way and that so many elements can affect her not wanting to co-operate or "perform" in that setting. And that while I realize she was doing her job, I hope she can understand that these "assessments/tests" sometimes feel like a real kick-in-the-balls...


#onwardandupward #damnyoudickandjane


12 comments:

  1. Melanie9.5.17

    We have a little one with a syndrome (not Down's but some similarities) and I was feeling the same way when we had to set "goals" for our little one. Apparently he was supposed to take his first few steps in April and be walking well by August. Well, it's May, still no steps. So apparently he's has failed? Um, he's 2. He'll walk when he walks for pete's sake.

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  2. This is my problem with my son's development pediatrician. Sometimes I think my son's gone a long way but comes consultation day (which happens every 6 months), man, we're doomed. I always feel like we're going 2 steps forward 5 steps back. With my son's therapist, I think he now knew not to make hasty assessments based on a single session, Haha!...at the end of the day, as mommas, we gotta continue on and to hell with the outdated standards.. good job to you and kudos for all of you do! You are an inspiration. 😊

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  3. Anonymous9.5.17

    Never seen a teddy graham cookie or had juice. Failed the assessment because he didn't take them and ask for more. I roared. Real loud!

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  4. This is such a wonderful blog and although I don't have any children with Down Syndrome, I love the positive point of view you present. I also love your honesty. And today, I had to laugh when I saw the Dick and Jane page you posted. Imagine learning in Grade 1 what Jane likes! I hope you find something to smile or laugh about every day. I have to tell you that seeing all three of your beautiful children makes me smile!

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  5. My son used to sabotage his speech assessments. He would do sound effects for some of the silly pictures. The worst was when he had an audience like one of his brothers watching. He is almost 21 and will be having his final speech assessment next week. I wonder if he will behave?

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  6. I broke up with our OT who spent her time with my daughter only checking boxes on a sheet she didn't share.

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  7. Anonymous10.5.17

    As a pediatric SLP and relatively new mom, it's so insightful to read this post and responses. Therapists can be so insensitive sometimes and need to be reminded that your kiddos are your everything and we should treat them as such! Thank you for your stories.

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  8. Jordan is 16 yrs old - his annual IEP -= school planning meetings, go something like this. Jordan can do, but doesn't - can't do, should be able to do, struggles with - and Mom breaking down - apologizing for breaking down, build Mom back up so that we can continue - erase and repeat in 12 months. At least not they bring tissues for me! It is the worst feeling in the world to spend an hour or better hearing what your child isn't - when to you there is nothing they aren't. They are our everything!

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  9. Anonymous10.5.17

    I'm a speech therapist in the UK working with adults with DS and other developmental diagnosis, so parent experiences like this make me so frustrated with my colleagues! This is not what we're taught as students. We're taught to assess the PERSON and their strengths as well as their weaknesses. Formal assessment tests how well your child can pass that assessment and that's all, not real life social skills, functional skills. I'm sorry your therapy session wasn't what you needed and I hope your email helps the therapist to understand how to be a little more flexible next time.

    If not, find a therapist who gets down on the floor, brings a bucket load of toys and plays whatever game Pip chooses in your first session. That's the best assessment we can do! And in the mean time just keep doing what youre doing because it's clearly working for your family x

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    Replies
    1. Here here. I'm a paediatric speech therapist in the UK, and don't like using pictures. I'm all about the objects/toys - sometimes assessment pictures look nothing like the object they represent anyway.
      And I don't see the point in continuing to rehash assessments. You can learn so much more from a good play on the floor and chat with parents.
      I may know about communication, but they're the specialist when it comes to their child - and personal goals and targets based on family values are more important than random words and what other kids can do at their age. We're all individuals, so
      Who cares if Pip knows what cartoons are, as long as she can indicate the names of her family, friends and favourite toys etc? That's much more important in my opinion...

      Delete
    2. Here here. I'm a paediatric speech therapist in the UK, and don't like using pictures. I'm all about the objects/toys - sometimes assessment pictures look nothing like the object they represent anyway.
      And I don't see the point in continuing to rehash assessments. You can learn so much more from a good play on the floor and chat with parents.
      I may know about communication, but they're the specialist when it comes to their child - and personal goals and targets based on family values are more important than random words and what other kids can do at their age. We're all individuals, so
      Who cares if Pip knows what cartoons are, as long as she can indicate the names of her family, friends and favourite toys etc? That's much more important in my opinion...

      Delete
  10. Thank you for writing this post. I am studying to be an occupational therapist and I hope to better undestand the client and their families' points of view, and hopefully allow them to inform my practice. I hope that each therapist and medical professional you encounter respects you and your daughters' goals and individuality- we bring our expertise and good intentions, but you are the true expert on your own life. Keep up the hard, messy, amazing work you are doing as a mother!

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