Share the first part of G's Son's story for readers on Sleuth! When and why did you start to feel concerned?
When my son was newborn (a day or two old) he had what I know believe to be spasms. I videoed it and showed the doctor, and I was told it was startle reflex. Nearly six years down the line, my son has cognitive and language delay and motor stereotypies. He is waiting to be assessed for autism, but nobody seems to be able to put their finger on the cause of his issues. He is very sociable and has great eye contact, and apparently has some traits of autism, but also traits that don’t fit the autism diagnosis. I’ve been treating him biomedically for the last three years, and he is making good progress. He attends mainstream school, with a full-time one-to-one assistant to support him. Obviously I want the best outcome for him, and don’t want to miss anything.
cognitive delay observed
Share the first part of TT Bear's story for readers on Sleuth! When and why did you start to feel concerned?
There are some hiccups early on that, in retrospect, were signs of the start of our journey. When TT was two month old, the pediatrician noted positional plageocephaly and torticolis. It was at this time that he began being followed by an orthotist and weekly PT. At six months the PT began using the words hypotonic and low tone to describe TT's muscles. At his six month well visit it was found he had only gained 4 ounces since his four month well visit. Up until that point he was exclusively breast fed. I immediately switch to bottle feeding (which was part of my plan anyway) and saw how little he was actually eating. After a couple weekly weight checks the pediatrician labeled TT failure to thrive (FTT), ran some preliminary blood work, and told us to schedule with GI and genetics.
Cognitive delay observed at 0 years & 9 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.
difficulty with pattern recognition observed at 3 years & 6 months
difficulty with sequencing observed at 3 years & 6 months
difficulty with task prioritization observed at 3 years & 6 months
Share the first part of Y.'s story for readers on Sleuth! When and why did you start to feel concerned?
My son was two and a half years old when the nursery staff called us - me and his father - for a meeting. They said he has severe tantrums and he doesn't want to play with anyone. He wants to do what he wants to do, not to follow the class rules. He sticks to a certain toy or a certain activity and doesn't want to leave it. His school referred us to the Learning Resource Center, which is a beautiful and professional center in Egypt. We had a multidisciplinary assessment at first. We answered questions with: “No, No, No… He doesn't have tantrums. He plays with his friends,” and so on. After the parent intake at the Learning Resource Center, they scheduled the child assessment. During this time, we realized that we answered, “No,” but actually, we could have said, “Yes.” He puts blocks into a tower. He follows the lines in the floor. He doesn't answer his name. We called the doctor to correct our answers. Then, at the first examination, my son completed a cognitive screening and later did an autism spectrum disorder test. We were told he is on the autism spectrum with a moderate degree. I had a panic attack. We decided to see many - too many - doctors. Some of them said that he is borderline because of his age or we cannot diagnose him accurately at this moment, we have to wait three years. Another doctor said, “No. He is not autistic at all.”
cognitive delay observed at 2 years & 7 months
Share the first part of baby boy's story for readers on Sleuth! When and why did you start to feel concerned?
I am a first-time mom. My son is 23 months old now. My son prefers to sleep on one side of his head, and when he was eight months old, he developed a lopsided head. We took him to a neurosurgeon - I believe that is the type of doctor that assessed him - and he was diagnosed with plagiocephaly. To reshape his head, he got a helmet that he had to wear 23 hours a day. He was wearing this thing, and it was hard for him to sit up. Every time he would sit up, he would fall backwards. He would bang it and I would hear him in the helmet when he was sleeping at night. Well, I don't know if it's because of a helmet, but he didn’t start walking until he was about 17 months old. Everything he did, he did really late. Initially, he qualified for Early Intervention because of his medical condition, and because he wasn't sitting up yet by himself or crawling. I thought the helmet was going to come off and he would be a typical, developing child. Unfortunately, it just took him a really long time. He did crawl, but he did it really late. He did sit up finally, but he was almost one. Then, I was concerned he wasn't walking. I had thought “Oh, well, it's okay. At 13 months, we'll do it.” Nope. 14 months. Nope. He was almost 17 months old when he started - that’s late! He’s still struggling with how he walks. He trips and falls a lot. He still has physical therapy. He walks like he doesn't have the muscles in his legs - like a penguin, that would be my interpretation. And he doesn't pay attention to where he walks. He doesn't look straight ahead. He's walking and he's looking over here, and I keep telling him “Look ahead! Look where you're going!” He bumps into the wall, and he'll trip and fall. It's like this catch 22. I am nervous about taking him out walking, because I feel like he's going to fall. But if I don't take him out walking, he doesn't get to practice the skill. And he's not talking. He's now at 23 months, and he has no words. He has a speech therapist that we do Skype with once a week. She gives us suggestions and advice on how to repeat (and repeat, and repeat) certain things. He says, “Mama”. He was saying “Papa,” but he stopped and that's where we are today. People tell me, “I wouldn't worry. My son didn't talk until he was three years old.” Or, “My son didn't talk until two and a half.” Things like that. I have a lot of friends with kids his age, and I’m on certain Facebook groups. We do video [chats], and I see how communicative their kids are. How they say, “Hi!” This one little girl said, “Happy birthday!” I have this hope that it's going to happen. But the reality is, nobody really knows if he's going to communicate or not. That's the biggest stressor for me. Not knowing.