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T.

Female | 28 years

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T.

Female | 28 years

T.'s Journey, as told by DK

When and why did DK start to feel concerned about T.'s health and development?

My younger daughter, T. , would go to a birthday party - which she hated to do, because she was so anxious - and come back and tell you in detail the colors of every girl’s dress. For 10 girls, she would tell you what they wore, what the pattern was, what the color scheme was. Then, you would sit down with her and say, “This is the letter ‘A’” in a book and, on the next page, “This is the letter ‘A’”. You would then turn the page again, and point to an “A,” and say, “What is this?” And she would say, “I don’t know.” We benefited from birth order. Having an older daughter served as a point of reference, developmentally. My older daughter did things very early, but even accounting for that, I noticed disparities. The other reason T. hated going to the birthday party was because she didn’t like the social dynamics. She said, “Well, if I go, then this girl feels left out.” She had lots of emotional intelligence. I first started noticing T.’s learning differences at about three-and-a-half or four, and she didn't learn to read till she was about eight or nine. I learned more in hindsight. If you look, you also see this anxiety in children like T. Some of that may be her personality, but in my experience observing T. and other kids with learning differences, they felt like they weren’t meeting some sense of expectations. And that feeling created anxiety. In preschool, it was fine. But then, in PS6, it was hard for T. because there was constantly this sense of external benchmarks. Carmen Fariña, who became the Chancellor of New York City Schools, was the principal of PS6 at the time. I am eternally loyal to her. She put a cluster of kids together with teachers who were veterans and really knew what they're doing. They provided T. with a resource room teacher who was on the board of the National Dyslexia Foundation and taught at Hunter. In New York City, it's not like you're out at play all the time, and have other ways of expressing your capabilities. In spite of their efforts, school is pretty constrained. Certain places like PS6 were academically focused. I think this leads to an emotional toll. But I will tell you: when I go and read the assessment they did of T. at the age of five, everything is still true in her adult life. It was brilliant. They identified her issues with pattern recognition and sequencing. Now, T.’s a web developer, and she lives in Austin. One of her biggest struggles is: “Oh my, there's 10 projects to handle. What do I do first?” That problem of prioritizing tasks. At the age of 28, every once in a while, she still calls me up and goes, “Okay, I just need a little help. What should I do first?” I expect (and hope) she'll do that as long as I'm alive.

Does DK have any other advice or experiences DK would like to share?

The first and most important thing is to trust your instincts. Above and beyond anything else. There is a big challenge in the admission to oneself. And then it’d be great to be proven wrong. We often turn to these public assessments, but I think your instincts are by far the most important thing. Bar none. Again, great to be proven wrong, but you know something. The whole process from a parental point of view is isolating. There’s that stigma around it. Who can you talk to? We depend on word of mouth from people who are facing similar challenges. I think that's a big part of this story. T. was very lucky. She has an older sister who really loves her deeply and was very protective. They shared a room, which I'm grateful for in hindsight, because I think it made them closer to each other. And, of course, not ironically, the scientific older sister decided to get her undergraduate degree in neuroscience. I think it was compelling for her: we came out of the same place and how can we be so different?! Her sister spent her senior project reading Eric Kandel’s neuroscience textbook before she went to college. The stories are endless, you know? My husband built a large counter, and then it came to that point when everybody became territorial and we had to put a very big black line down the middle. And the sisters have had lots of shared experiences, traveled the world together, and all of that. One has to be mindful. If you probably asked G. , T.’s older sister, she might say that she was never neglected, but that she was constantly being asked to adapt. We were adapting to T.’s needs. And so for G. to fit in, she had to adapt. We talk about that sometimes now as adults. I find that sometimes my older daughter is needier than T. in some ways. 31 years old, she's a physician, but she looks to T. for relationship advice. I tried really hard to give them each their time. I think it's just general parental advice: to make sure you give them each time alone, and make them feel like they're the most important thing in the world, separately, so that it's not all relative. It's hard to squeeze that in. I had a business with 25 employees, and I traveled. I lay in bed at night worried. But I'd like to think they’d say that they were understood independently. I think that's the most important thing.

What was DK's experience seeking a diagnosis and treatment for T.?

In New York City, the pressure to adhere is really, really high. It was just too much. But T. hated being pulled out of class. She didn’t want to feel different from everybody else. So from the time she was six, she would go for therapy from eight o’clock in the morning until 8:45am. Then, at the end of the day, she would have a tutor for reading comprehension, interpretation and other learning tools. By the time she was eight years old, she had no time to play or do sports, and the extra work was a burden. I moved her to Churchill in the fourth grade (https://www.churchillschoolnyc.org/). (I looked at every school. The whole nine yards.) At first she was so mad, of course. She had friends. She was very social and capable. And then she was really mad. And then, about two weeks later, she came home one day, and she said, “Thank you.” I said, “Why?” And she said, “Because everybody is just like me.” It’s not that the kids don’t have differences. But the school teaches them tolerance and adaptability so they accept that others learn material differently or that it might take longer for someone to learn a topic. Yes, you’re different. But it’s all the other people who determine whether you feel different. One of the best parts of being in a place like Churchill was that they taught advocacy. A part of this is that, as a parent, it is really important to say, “Yeah, I'm celebrating my difference. Is it hard on me? You bet. But this is who I am.” So that you don’t feel like you're spending your whole life catching up. This was always, and continues to be, a challenge in her life. I think, with employers now, it's hard to decide what she can tell people and how much to disclose. For a diagnosis, I credit PS6 with the first steps. When T. started, it was clear she wasn't learning to read and they suggested she meet the resource room teacher. Eileen Marzola was teaching at Hunter and teaching kids with dyslexia and disabilities, so we couldn't have been more cared for in that environment. Eileen put T. in a summer education and assessment program at Columbia, Teachers College. The first assessment was with Janet Brain. I'll never forget that because her name was “Brain”! She had an assessment from her, and then another, a couple of years later, to attend Churchill. We hired a lawyer - the same lawyer many hired - for help with the IEP. T. received a nuanced diagnosis. Yes, she has some dyslexic tendency, but it was all about sequencing and pattern recognition. I haven’t looked at it recently and do not have the exact wording. It’s a challenge, too, when these diagnoses are vague categories and they're not explicit. Later, anxiety became a huge factor for T. Even when she was at Churchill. She reached a level of anxiety where she fainted one day. We went to NYU, and she got tested for epilepsy. We spent two days in the hospital with her all linked up equipment, but everything was normal. T. actually did have seizures as a small child and had a couple of spinal taps, so of course later in life we were like “Hmm”. Some of that history: Early on, there were febrile seizures. At the first, when she was four weeks old, she had an incredible spike and kind of a seizure, and she was put in the hospital for five days. I sat and nursed her, and she had a spinal tap, then. And then when she was 15 months old, she had a seizure, and again, had another spinal tap. Was it really necessary? I'll never know. Years later, when I looked at this pediatric approach versus others, it was a little bit too aggressive. T. had lots of ear infections, and so she took readily-prescribed antibiotics. She got her adenoids removed, and she had asthma early on. I think it's very hard to figure out what the origins of these things are. Therapies? For T., Cognitive Behavioral Therapy was a hugely important part of her life. She had a deep relationship with Sandra Pimentel, now at Montefiore. She went to therapists - she went to this and that - and she was like “Enough already. I understand.” She had a high level of emotional intelligence. But the need for tools was huge. With CBT, she learned an enormous amount about how to put a pause on some of those things that were reeling in her head. It was very, very important for her. I would say she wouldn't have gotten through high school and college if it hadn't been for some of that knowledge. She did CBT for about 10 years, starting at about 14. Kids need action, they need things that give them back the power in a situation. It's one thing when they're at home. But they need those resources in themselves. You need to find the voice inside yourself, that's going to intervene, and say, “Yeah, this sucks. I can't learn it, I can’t do it... Okay, well, what do I do? Do I breathe deeply? Do I walk away? Do I ask for help?” I think CBT was profoundly influential.

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