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YonasB

Male / 8 years & 10 months

Share the first part of YonasB's story for readers on Sleuth! When and why did you start to feel concerned?

No answer added.

Seizures observed

R

RosieSue

Female / 3 years & 7 months

Share the first part of RosieSue's story for readers on Sleuth! When and why did you start to feel concerned?

She couldn’t hold her head up till after a year old. She was very far behind her twin brother who was hitting milestones right on time or early. She was a floppy baby. She couldn’t coordinate suck swallow and breathe. She barely ever cried or made noise. Didn’t start babbling till over a year old.

Seizures observed at 0 years & 0 months

T.

T.

Female / 28 years & 10 months

Share the first part of T.'s story for readers on Sleuth! When and why did you start to feel concerned?

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.

febrile seizures observed at 0 years & 1 month

S.

S.

Male / 4 years & 5 months

Share the first part of S.'s story for readers on Sleuth! When and why did you start to feel concerned?

Our son (nicknamed S.) is an interesting case. If you were to ever see him, you might think he was two years old, not his actual age of three-and-a-half. Not only does he model some immature behaviors, though he's well-behaved, but he's very small for his age. He wears size-two clothes still. He is getting a little taller, and he eats like a horse. But he just stays very thin. He’s not even 30 pounds. He has a little sister who is 10 months old who is catching up to him in weight. She's close to 20 pounds. She’s right around the 50th percentile for everything. He's still around 4%. On his growth chart, he has been less than the 5th percentile his whole life. And then speech-wise, he's actually more like a nine month old (not a three-and-a-half year old). For whatever reason, again, we can't figure it out. His expressive delay is huge and he does not talk. I would say that what he understands is a lot closer to a match for his physical size (of 2 years old). If we say “Hey, slow down,” if we're outside walking around, and he gets a little too far ahead, he'll slow down. If we say, “Okay, we're about to cross the street. We’ve got to hold hands,” he puts his hands up. He knows we're going to cross. If I say, “Alright, you’ve got to sit down in your chair.” Then, instead of standing up, he sits down. But he can’t talk. He's so small physically, and that has got to be holding him back in some way. I'm probably wrong, but I feel like that in my heart. Our son was born with a couple of strikes against him. His mother had a two-vessel cord during the pregnancy . He was basically always very, very tiny, through the entire process. To the point where we even got geneticists involved. And they were telling us it could be some kind of skeletal dysplasia. It could be this. It could be that. They were telling us a number of things that it could possibly be. When S. was born, he was supposed to go naturally. We ended up trying to induce early. I think it was three-and-a-half weeks early. That didn't work, so they did a caesarean. When we went home from the hospital, he was actually below five pounds. Then, right away, he had an inguinal hernia, so he went through surgery. As well as that, he had digestive issues. He was allergic to milk. It took us a little while to figure out what was going on. As he grew, we noticed that he wasn't hitting a lot of his milestones, whether it was movement, or speech, or others. He finally started crawling around a year old but he was not very good at it. And he didn't walk independently until he was just about two. We started to notice when he wasn't developing language. He also has a little bit of a lazy eye, which I think is genetic. I had the same thing when I was a child. These were all little things that we knew were somehow contributing to what was happening. Those were our first indications when we started to put together these puzzle pieces.

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