Learning Curve

When Caroline was three, she hated swings and couldn’t dangle from monkey bars. She knew her colors, but she couldn’t recite them reliably. She loved the slide at the local park, but if she didn’t walk to the top by exactly the same route every time, she sat down and cried. She adored other children, but if a group of them came too close, she put her hands over her ears and cowered. And ‘too close’ was typically about a car’s length away.

In the bathroom, she never washed her hands without a fight. The preschool director used to accompany her and talk her gently through the process multiple times a day. At one point, they gave up and started letting her use hand sanitizer. That lasted until she started squirting the goo on her hands and licking it off saying, “Tast-es gooood.”

At our parent conference, the teacher produced two years of progress reports with evaluations like “can, but won’t” (count to ten, sing the alphabet, point to a square) and notes like “some days, I’d swear Caroline can read whole words, other days, she doesn’t even seem to recognize the letters”.

We invited in a social worker to observe her in the classroom. He said, “I see learning differences there. I’d suggest you take her to an occupational therapist.”

We got a name and made an appointment. “I don’t take insurance,” Miss Julie warned us. “I’ve got such a small office and they so rarely pay that it isn’t worth my while. I don’t have the energy to fight through the red tape.”

We gave her three hundred dollars up front and brought Caroline in for a test. “You can sit right over there,” Julie told us, leading our daughter over to a complicated center.

She lifted Caroline onto a square swing in the middle of the room. Caroline jumped off fast, and Miss Julie seized the swing to keep it from smacking Caroline’s head. She nodded as if this meant something. She carried Caroline to a trapeze swing and wrapped her tiny fingers around the bar. When Miss Julie let go, Caroline flopped straight down onto the mat. Miss Julie nodded again. “We can’t finish this test,” she told us. “I’d like to try something else.”

“Of course.”

Miss Julie took Caroline over to a table and laid some blocks end to end. “Now you do it.” Miss Julie handed Caroline blocks of her own.

Caroline put the blocks in her mouth.

Miss Julie laid some colors out. “Show me pink.”

Caroline picked up blue and tried to eat it.

Miss Julie took away all the color chips except that blue. “What color is that?”

“Magenta.”

It was the only word Caroline had said except her name since she walked in the door.

Miss Julie looked at us. “We can’t finish this test.”

I mentally waved goodbye to my three hundred dollars.

“I’d like to try an occupational therapy session instead.”

“Sure.” Better to get some value for our money.

Miss Julie took Caroline back over to the mat. “I’m going to fold you up like a hot dog in a bun,” she said. Caroline lay down. Miss Julie rolled the mat up around her like a cocoon. “Ready to go for a ride?” Before Caroline could answer, Miss Julie yanked the end of the mat free, like a magician jerking the tablecloth out from under a place setting. Caroline flew out and crashed into another mat.

Scott and I jumped up. “Are you OK?”

Caroline stood. She turned around a couple of times, then found Miss Julie. She cocked her head and pointed to the mat. She said, “Again.”

“But Caroline can’t handle being up in the air like that!” I protested. “I can’t even hold her up over my head.”

“Usually they hate this,” Miss Julie confirmed. “It’s designed to help the vestibular system and to assist with proprioception. But most kids are so scared at first that they can’t do it more than once in an hour-long session.”

Scott said, “I’d be scared of that, and I’m an adult.”

“And you didn’t even tell her what was coming,” I added. “She never does anything for anybody without being told exactly what’s going to happen.”

Caroline repeated, “Again.”

Miss Julie once more rolled Caroline up and once more sent her flying.  This time, when Caroline got up, she oriented towards the table with the color chips. When she got there, she sat. She picked up the blue. “Blue,” she said. And then, “Red,” and “Pink,” and “Green,” and “Yellow”, all while collecting the right squares.

Scott and I sat down.

“That’s highly atypical,” said Miss Julie. “I’ve been doing this ten years, and I’ve never seen a child do that.”

We would get used to hearing those words. Gross motor dyspraxia. Highly atypical. That summed our daughter up.  For weeks, Caroline would struggle with a problem, seeming to gain no ground at all. And then suddenly,  it would be as if the problem had never existed.

She refused to sit on the swing.

She refused to sit on the swing.

She refused to sit on the swing.

And then one day, she stood on the swing.

 

She couldn’t do the rock wall.

She couldn’t do the rock wall.

She couldn’t do the rock wall.

And then one day, Miss Julie turned around to talk to me and when we both looked over, Caroline was at the top of the rock wall.

“She has to think her way through something first, doesn’t she?” Miss Julie asked.

“All the way,” I said.

“I’ve known kids who worked like that before,” said Miss Julie, “but not to this extreme.”

Caroline howled from the top of the wall. “I’m stuck!”

“She just named her problem!” Julie and I said together. Then Julie hurried over. “Good job using your words!” she praised. And she began the long weeks of teaching Caroline how to climb back down.

 

About jesterqueen:
Jessie Powell is the Jester Queen. She likes to tell you about her dog, her kids, her fiction, and her blog, but not necessarily in that order.

Comments

Learning Curve — 65 Comments

  1. Amazing!
    Thank you so much for posting this. The similarities between our kids is refreshing for me to read. Not because I’m happy that another family is facing what we are, but because we aren’t doing it alone. If that makes sense.
    So many things I’ve read have said that the signs start to show themselves around the 2.5-3 year old range, but I hadn’t actually talked to anyone else who had kids that young when they were diagnosed. Xan will be three at the end of January and his behavior and language have been regressing steadily for two months. He always had some quirks, but it was like a switch went off one day the first week of August.
    It’s some scary and isolating stuff. Thanks for proving to me that people DO get through it.
    Parents and kids alike.
    Hop over and visit Dawn Beronilla’s recent post Being Brave: I Need HelpMy Profile

    • Yes, it’s an adjustment, but we do get through. Caroline’s was never regressive, she always struggled with these things. But girls, much more so than boys, tend to develop coping strategies that mask stuff, often until they get into ‘real’ preschool. I’m SO sorry Xan’s is regressive. It would be so hard to realize that he used to have something but lost it.

      But the Occupational Therapy can help him regain so much of what is slipping away, and you have caught it EARLY, which means he’s in a much better situation than if you had waited to admit there was something up until Kindergarten. I meet so many families who tried to pretend away their kids’ symptoms. “Oh, all kids are different.” (If one more person had told me that about Caroline, I would have puked.) Or where one parent knows and stands by helpless in the face of a more persuasive parent’s denial. You’re doing exactly the right things. This part, this not-knowing, it’s scary as hell. But once you get a better handle on it, you are able to move into the pragmatics of helping your child. And that makes a huge difference.

  2. Julie sounds like a therapist who doesn’t just give up because a child is atypical. Good for her and good for Caroline. Good luck to all of you.
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    • We missed her so much when we moved to Montgomery. We were lucky enough here to get in (after a months long wait) with another awesome OT, and then, when we needed to shift gears, with a third. It’s HARD to find occupational therapists, but they are among the most dedicated professionals around. I think they’re used to seeing miracles and less inclined to give up on a kid than some others might be.

  3. How wonderful that you have a therapist who “gets” Caroline. Support is everything when a child has needs above and beyond the norm! I am learning this now with my son who has a few learning issues!
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    • Her first year of ballet, she wandered out onto the stage. The teacher was leading the four year olds through a Mother Goose performance. The teacher was a Mama Duck and the kids were the ducklings. Both in dress rehearsal and in the show, Caroline wandered on stage, looked around the audience, found someone who wasn’t me (but who she thought was), waved, then walked up to Miss Molly and said, “You look so SILLY.” So when she was a girl in a white satin dress this year, I was just stunned.

    • Hmmmm…. I wonder if it’s because my internet host’s server was upsy downsy last night. I should have another one up tonight, so if you don’t get an e-mail, please drop by and let me know. I’ll have to do something about it.

    • YES — and Caroline is easy. It’s so easy to see her little sunshiny personality. But these therapists see the kid in ever kid they treat. It’s just astounding. They never treat a diagnosis as a limitation. Rather they behave as if it is a helpful guide about how to proceed.

  4. Wow. As a special ed teacher this was amazing to read. So after she flung her from the mat, why did that give her the ability to then do the activity? Because she’d had the time to think it through?
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    • I’m probably going to get this wrong, so forgive me if I misinform. The rolling motion is directly related to the ability to communicate. Our brains use the same neural pathways for some physical and some nonphysical behaviors. The physical literally unlocked the verbal. (I joke that the head trauma jolted the colors back into the right place, because that second landing looked painful to me, though Julie assured me it was safe). When a child has speech delays, the best recourse is speech therapy. But when a child has communications delays, a combination of occupational therapy and speech therapy seem to work well. Insurance companies refuse to see the connection. They only pay for occupational therapy for very clearly related things. You need to relearn how to write after a broken hand or stroke? OT is the place for you. You need to learn how to say the names of your colors? Let’s spin you around really fast and throw you in the air? The logic is harder to follow.

  5. What a gripping story! I’m sitting here amazed that this therapist could keep coming up with seemingly crazy ideas to do with Caroline, to break through. I was a little freaked when she yanked her out of the mat and was so relieved when Caroline said, “Again!” What an amazing child and an incredible and tenacious teacher.
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    • Thank you so much. I read Caroline anything I write about her, and she smiled a lot for this one. Which made me relieved, because I feared she would find it embarrassing and not want me to post it.

  6. Wow; amazing story! Brought me to tears. I have a daughter who has struggles and your story of this amazing therapist just really moved me. Thank you for sharing!

  7. I Googled dyspraxia last week in connection with the tactile defensiveness and oral dysphagia my 7 month old has.

    We have a good speech pathologist who has him eating like a champ when he wouldn’t eat anything at all a month ago. She’s starting to work on his tactile defensiveness now.

    From the research I’ve done, it seems like these two things don’t just usually happen alone, that it’s part of a bigger picture of dyspraxia or the autism spectrum disorders. In any case, early intervention is the biggest thing and at least we’ve got that going.

    And I found out some pretty cool stuff about people like Daniel Radcliffe who also happens to have dyspraxia.

    My uncle is a doctor and he wants to do some research about what’s happening. I kind of don’t want him to. I just am not really ready to face any labels as of yet beside the two we already have.

    Caroline is gorgeous.
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    • Hugs. It’s so hard. One thing I would suggest is to not think about diagnoses as labels. It seems like a small thing, a mere semantic shift, but it can open up a world for you as a parent. Labels limit people. Labels are what the rude kids at school put on the kids they don’t understand. But diagnoses have the opposite effect. They name something already present. (Well, there’s also MIS-Diagnosis, always a danger.) But the right diagnoses allow you to find treatment to break through boundaries. Let your uncle do the research. What if he finds the key that will help you access your baby? My grandfather was a doctor, and he passed me journal after journal when we were early in this process with Caroline. It helped me SO much just to come to meetings armed with the right questions. You’ve got a real asset on your side, and as hard as it will be to find out more things, doing so will allow you to pave your infant’s way to success. And you are absolutely right about the key being early intervention. In spite of my getting all overenthusiastic about giving out advice (which I’m famous for doing even when it wasn’t asked for), I really admire you. I knew stuff was going on with Caroline at seven months, but she was three before we took action on it. What would be different for her now if we hadn’t waited? You’re taking action NOW, and it’s going to help. Good luck, and let me know if I can help, even if all I can do is (shut my big mouth and) listen!

      • Aw, thank you so much! I guess the biggest part is I don’t know how much trouble to borrow.

        Outside of the not wanting to touch things and not wanting to eat thing, he is on target developmentally. He babbles incessantly, seeks eye-to-eye interaction continuously and is exceptionally calm and sweet.

        But I am hyper vigilant, looking for any symptom, any sign. And for now, I just want to stop doing that and enjoy my son. You know?
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  8. Thank you for posting this. I have suspicions about some “things” about my 22 month old that just don’t feel “right”. He only says 4 words but I know fully understands everything I say to him. We play a game with the “Brown Bear” book where I will say “where’s the horse?” and he points to te horse and we go through the animals. One day he gets every one right, then the next, it’s almost like he never knew them at all. I’ve been putting off contacting someone about it (and I’m not sure who, really) because I keep listening to the “all kids are different” people. I don’t think I’m going to put it off anymore. Now to find out where to turn…
    Hop over and visit TreadingWaterInTheKiddiePool’s recent post WeightlessMy Profile

    • Listen to your gut. Start with the pediatrician, but don’t be put off if they don’t want to listen. Request referrals for speech testing and possibly developmental psychologists. Although received language (understanding what you hear) is often greater than spoken language (in other words, we understand more than we can speak), that being able to only do it sometimes sounds really alarming. (But then, I am a born armchair diagnoser.) The way Miss Julie put it to us was this: Even if nothing is wrong, you aren’t hurting your kid to find out. The therapies are GOING to help a kid, even a typically developing one. And any of these people have waiting lists out the door, meaning that they have no motivation to lie to you. They’ll often encourage you to get a second opinion, and generally, the worst thing that could happen is that you’d be wrong and your kid would be developing typically. And that knowledge in and of itself would be a valuable thing.

    • Oh yes, every penny. But I feel that tugging feeling in my soul when I say that. Because there are so many other children who are worth it whose parents have to make due. And my daughter, as awesome as she is, isn’t more worth it than those kids. This stuff should be covered by insurance so all kids could get the help they need and deserve.

  9. I learned so much reading this and you wrote it so well. So, so well. Thank you for sharing Caroline’s and your story. I absolutely loved this post.

  10. This was a really interesting read, and I think it’s important in that it lets other frustrated mothers know they are not alone. I’m glad your daughter received the assistance she needed, and hopes she continues to progress. This was very well-written too and informed us of the situation without any kind of self-pity. Children are such interesting little creatures.

    • Others told me their stories and it helped me, so I do hope Caroline’s story helps others. Asperger’s Syndrome, which was her ultimate diagnosis, is something we can work with and she can grow with. There’s no reason that she wouldn’t be able to grow up and have the full and enjoyable life she desires. BUT – the therapy is making a lot of it possible.

  11. I am so freaking tired right now I almost didn’t read this. But it was so riveting and educational and heartbreaking and hopeful I am so happy that I did. and your writing is great here, otherwise I’d be long asleep. Bless you. Bless Caroline.

  12. Love this story. I’m a speech pathologist and I have learned so much from our OTs! It’s really unfortunate that we can’t cotreat but I love how much we can communicate and make sure we’re working with the entire child and family, not the “speech delay” or the “dyspraxia”. It sounds like Miss Julie is just the right kind of therapist for your family 🙂
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    • Miss Julie shared the office with two speech pathologists. Because they were independent, they could work very closely together when they had a patient in common. And yes, every single therapist, speech, behavioral, or occupational, that my kids have had, has looked at the whole child. They have all been exactly right for us for what we were at the time.

  13. Wow, Jessie! This was so fascinating to read. I am in awe of the therapist’s ability to “read” Caroline and find the right course for her.

    Your storytelling: amazing, as always.
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    • Miss Julie blew us away. The others who followed were equally awesome, but she was the first and therefore everything was so new, and she just had the most amazing techniques. We repeated everything we possibly could with Caroline at home, too.

  14. So very interesting and awesome! What an absolutely creative and intuitive OT you have (had) there — wow! And good on you and Caroline for figuring it out and working together.
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    • She was the best in the city, we later found out. And we got down here to Montgomery and lucked into the best in the city who helped us migrate to another awesome OT when Caroline needed something different. We’ve been so lucky.

  15. This was amazing to read about. I have no experience with it, so it’s incredible to read about extraordinary children like yours learning in their own special ways. I’m glad you guys were able to find someone who works with her so well. Great post!

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  17. I’m not sure what to comment on first – the content of your story or your clear, singular writing. I was riveted and could feel my heart pounding as I read. There is so much hope in this story it hurts. What a blessing your daughter is and how relieved you and she must be to now understand her challenges and be able to offer such loving insight and support. You’re working some miracles … Hugs to all of you.
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    • Wow! Thank you so much. She’s an incredible little girl. It was fascinating to go back and really explore what it was like for her in the early days with this post.