I Am Not My Child’s Therapist

Almost five years have passed since the day I labored in a hospital tub and birthed the tiny baby that a midwife immediately called Peanut. We named that baby Fiona and we cradled her unfathomably small, four-pound-twelve-ounce body. In the hospital, we learned to drop-feed her, and once home I learned to breastfeed her, and we—my husband and I—learned so much more.

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Image: Most of the picture is of a red wall. In the bottom right corner is my silhouette, looking down at a small baby in yellow, whose nursing.

We eventually learned about chromosomal deletions and meiosis. We learned about seizure variations, kidney dilation, oral stimulation, and the minuscule increments in fine motor developments. We learned how to have the cheapest and most satisfying lunch at the children’s hospital (eat with the doctors in the cafeteria). We learned to stretch our daughter’s pronating feet and we learned the best shoes to accommodate orthotics (Converse). We learned a few dozen ASL signs, and I personally learned the pros and cons of different communication apps, and I learned that you never, ever pay a medical bill without first calling the doctor’s office and checking that they billed correctly. I learned to do a million things that I don’t even know I know.

Today I realized one of those one million things. I realized it while having a conversation with Fiona’s grandfather, who was visiting from out of town. My father-in-law hasn’t seen Fiona in a few weeks, and he was not only amazed at the amount of food my twenty-pound girl eats, as she shoveled a standard American breakfast of eggs and sausage into her mouth.

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Fiona and her grandfather, sitting in a diner booth. Her grandfather is looking down at her as she shovels a giant American breakfast into her 20 pound body.

He was also amazed at her burgeoning speech. “She’s really talking,” he said.

It’s true. Lately Fiona’s been doing what speech therapists call “approximating,” where her mouth tries its best at words, and she often gets close.

Bye bye is guy guy.

Hungry is hahee.

Potty is ky-ee.

Momma is momma. (I win.)

My father-in-law was understandably excited.

I agreed with him. She was “talking” more. “But,” I added, “there’s a lot of consonants she still can’t say.” She only has B, H, C, G, and M at her disposal. I thought of the many instances when I have no idea what my girl’s saying. Emma is how she says Elmo, but it’s also how she says Elsa, Anna, and someone she knows named Emma. On plenty of occasions, I look at Fiona clueless. In these moments, I pull her talker closer and wait. The sound in her mouth—cah, for instance—becomes a clear word in her talker’s electronic voice: coat, or towel, or bath.

My father-in-law—an optimist, a cheerleader, a champion of his granddaughter—offered this reply: “It won’t be long.” He thinks she’ll master more than B, H, C, G, and M.

But I simply said, “We’ll see.”

I couldn’t join him in his certainty. And this is when I realized one of the most important approaches I’ve taken in parenting Fiona. It’s a lesson that’s dear to me because it keeps me sane. I’ve learned to be wary of goal-setting.

If you have a background in teaching like me, you might hear a record skip. Wait, what? Wary of goals? But goals drive instruction! Goals are like destinations on a road-trip, telling us where we’re headed! Goals articulate expectations, and if we don’t have any, then won’t we end up nowhere, or at the very least, only a block from where we started, kicking dirt beside a gas station, doing a serious disservice to our kids?

I’m not anti-goal for Fiona. I want her teachers and therapists to have giant goals for her. I want them to see her and say, “Yes, she will walk, run, ride a tricycle, write her name, read a story, do mathematic calculations, create complex sentences with her talker…” etc.

It’s just that as Fiona’s mother, I can’t hold expectations over her. I don’t mean my can’t to be a moral one, as in I shouldn’t or mustn’t. I don’t mean in any way to tell you what you should do. I simply mean I can’t. I can’t say things like, “We want her walking by the summer” or “We aim for her to say Dadda by June.”

I learned this lesson in the first year of parenting Fiona. We lived in Ohio then, and the state’s model for early intervention therapy was different than in Vermont. In Ohio the therapists came into our home purely as consultants. And because I worked fewer hours than my husband, I was the one to meet with the therapists, which meant they became consultants to me.

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Baby Fiona, lying on a blanket, looking up.

They were in my living room to teach me how to be Fiona’s therapist. They got down on the floor with me and together we examined Fiona’s supine body and they gave me instructions on how to play with my daughter. They said they weren’t supposed to touch my kid too much. They said I was supposed to do most of the work. They showed me how to do various renditions of tummy time, how to move a toy across her line of sight to improve her tracking, and how to rig a toy to encourage her kicking.

Frankly, I can’t remember all the things they told me to do, because what I mostly remember from their visits is this: they left me with a handwritten list of therapeutic tasks I should do that week, and they sometimes left me in tears. I keenly remember one visit when, after a therapist shut the front door of our house, I walked to the dining room, pressed my back against a wall, and slid down in defeat, sobbing. I wanted to be a mother, not a therapist. I didn’t want the pressure to turn my kid into something other than who she was.

The whole endeavor felt counterintuitive to what I, a newbie parent, sensed was the primary job of parenting: to love one’s kid. Just as she is. Crawling or not crawling. Grasping toys or not gasping toys. Holding her own head up or not holding her own head up. Just love her. Every typical parent gets to do it. IMG_5186A typical parent gets to love their kid into every developmental stage without worry, without fret, without weekly “intervention” appointments because a typical kid’s development unfolds as naturally as the two new leaves are unfurling on my Bird of Paradise. There it is: sitting unassisted. There it is: making babble sounds. There it is: the first word. All as natural as seasons. With no extra work on a parent’s part.

I suspect other parents see no mutual exclusivity in loving their kids as they are and pushing them fiercely toward measurable goals. But for me, the burden of becoming Fiona’s daily therapist collided with the joy of loving her. In those early months, I sometimes grew to hate motherhood because my success was measured by my daughter’s outcome, which seemed incredibly unfair to both of us. Was she developing good core strength? Was she advancing to stage 2 baby foods? Was she making new sounds with her mouth? If no and no and no, then I needed to do more. I needed to work harder. I needed to put in longer hours. The goal of making her different stole energy from the duty embedded in my very DNA: love her. Love her as is. Just love her.

When we moved to Vermont, where the therapists come to your house and work with your kid for an hour and put zero pressure on you to become them, I gave up the pressure to make my child different. I took up the job of accepting her as she was. I measured my success as a parent not on how well she advanced, but on how hugely, how unconditionally I could embrace the job of loving her.

This is not to say that I “gave up” on her development. I did not stop offering therapeutic support. I bought toys that I thought would be developmentally beneficial. I offered new food textures that might combat her oral defensiveness. I researched alternative communication systems, bought an iPad and communication app, and set to teaching Fiona how to use it. I did these and many, many more, all for the same reason that I water that Bird of Paradise each week. I want her to grow and thrive.

But I held expectations lightly. When would she walk? I didn’t know. Age 3? Age 4? Possibly not at all? (She walked by age 4.) And when will she make a B or a P sound? I’m not sure. I hope she will, and I suspect she might, but if her mouth is never able, then she has a talker by her side that can do the pronouncing for her. I plow forward, doing my best to relinquish  outcomes. It’s a tricky equanimity that parents of kids with disabilities must learn. It’s a fascinating bullet point on our unread, unseen, unknown resumes: how to strive without gripping. How to pursue something with equal parts passion and levity. It’s a gift our kids teach us.

So I told my father-in-law about this. And he nodded in understanding.

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Fiona is in the foreground, looking at the camera, and her 3-year-old sister is in the background, looking at her Fee. They’re on green grass, wearing pastel plaid dresses. They both have glittery butterfly wings on their backs.

 

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18 thoughts on “I Am Not My Child’s Therapist

  1. Heather, this is so beautifully written. The “parent empowerment” model of service delivery for EI is something that is pretty much a scam. Younger EI staff don’t necessarily know better; older staff and administrators know that it’s wrong. I believe that your piece should be shared with all incoming EI staff and with legislators when they are debating truly funding EI!

  2. Well there you are in my head once again. I love that I can read talented bloggers like you who have taken my thoughts and put them into eloquently written words, negating my need to write them down ‘some day’. Thank-you for taking that off my plate. 😊
    I’ve had a bit of an extra struggle with the setting goals/love as is battle because I AM a therapist (pediatric SLP). But thank goodness I realized pretty quickly that focusing on the mom part was imperative to both of our well-being! It has gotten somewhat easier with that mental clarity, but is still a practice.
    P.S. Fiona and my daughter would have the most amazing conversation if they could meet. Single approximated words that could be any number of things are her specialty, with a side of AAC when needed. 🤗

  3. I’m a pediatric physical therapist and this is one of the reasons I left EI in favor of private work. No – you should not be expected to be your child’s therapist. And frankly, therapy worth having can’t be easily duplicated after one or two demos. But don’t be too hard on the therapists. They are pressured to provide the “parents as partners” model. There are better ways.

  4. Beautifully said. As a PA, I am too often my child’s therapist and doc. I long to just be her Mom. Thank you for writing.

  5. I think you have well described the way “assumed competence” and acceptance of a person as is. It can be a delicate balance. Sometimes certain goals are not achievable

  6. This just breaks my heart, and brings back memories. I remember asking my husband after a preschool parents meeting, ” can I just be Jason’s mom? I’ve been his medical advocate full time through this journey, and I just want to be his MOM for a while. Not his teacher or therapist. And I am a pediatric PT working now in that EI system in Ohio. You are the ONLY one that can be that child’s mom. Others can be the specialists. And Jason is now 30 years old. We both continue to grow and learn and try to find things that work, and discard those that don’t.

  7. Heather-

    Absolutely spot on! I’m a pediatric speech therapist, and I can’t tell you how many times I’ve had the conversation with parents where I tell them “don’t worry about it! Your job is to be Mum (I’m in England) and/or Dad, which is the MOST important job there is! The whole point of me is so that you can be Mum without having to worry about being a teacher or a therapist as well! *NO* parent teaches their child to talk- they don’t hand out a Teaching Developmental Milestones Manual in labour wards to new parents…
    Of course parent involvement and carry over is great! It’s so important and empowering for parents to know what we therapists are doing and why. And there are loads of things we can hand over to you for carry over, but these are things like “talk to your kid whenever you have the opportunity”, “read story books together, because it’s great for shared attention and vocabulary!”, or “play peek-a-boo, because it’ll help teach turn taking”. None of these are THERAPY; they are most likely things parents are already doing. And more importantly, they aren’t assigned as homework.
    My (adult) brother has Down Syndrome. And sure, as a therapist I see lots of opportunities to provide corrective feedback while we’re together. But I don’t.. Because my relationship with his is that I’m his little sister. I’m not his therapist. And being a sister (or being a parent) is soooo much more important than being a therapist.
    You are doing such a great job being these little girls’ momma! xx

    • I’m so glad you know the difference between sibling and therapist! I’ve seen some siblings who frankly creep me out with the way they’re always “helping” their sibling.

  8. I read the description of the Ohio early intervention model with complete recognition. Where I live (Victoria, Australia) it’s even more “cost effective” – one therapist comes out and brings handouts to help you learn and do the therapy of the different disciplines. (This will be changing in the next couple of years as a new system comes in.) I spent the first two years that my son was home getting increasingly frustrated with the system, and feeling like I was failing because I wasn’t doing everything (we also had weekly medical appointments at that stage, so there was also that filling up my available brain cells and time.) I had a bit of a breakdown similar to yours one day, and sat there going “I just want to be ‘mum’. Not a ‘premmie mum’ or ‘medical needs mum’ or ‘special needs mum’, just ‘mum’.” And then I realised that to my son that was all I’d ever been, whether I was getting the therapy done or not. And for whatever reason that helped me take a step back and stop stressing that I hadn’t managed to get him to do any tummy time that day.

    • And to say it again… how devaluing of therapists’ training it is to suggest that a tired and perhaps desperate parent can be taught to do what the therapist was trained to do, in the course of a few instructions. Absurd.

      • In total agreement with you there. It annoys me incredibly that it’s assumed that allied health disciplines can essentially crossover in a way that is not assumed for medical disciplines – no one asks an oncologist to put in grommets as a somewhat random example. Why you would think a speech pathologist could double as a physiotherapist s beyond me.

  9. You have just spoken a voice of peace into my life. I’ve been so incredibly overwhelmed and afraid of failure for the last 11 months of parenting my daughter. Thank you.

  10. Wow. That is beautiful. I am an ei therapist and we operate under the coaching model ie the first model you encountered. That being said I work with amazing ladies and I think we all do a really great job of reading families and knowing when to coach vs when to listen vs when to “play” with the baby. It is a difficult process and baffles my mind that it is a different process in every state. The early intervention and special education system continues to need some serious help. Thank you for sharing your experience. I will forever keep your words in my head. You are amazing advocate for your daughter.

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