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What was your experience, if any, seeking a diagnosis or treatment?
He has been progressing incredibly well, given all the odds that were stacked against him. Early on, C. developed a condition called hydrocephalus. Hydrocephalus is a condition where there's an accumulation of cerebrospinal fluid in the brain. He had to get a shunt, which is a device that helps drain that fluid. He got his first shunt surgery when he was still in the NICU. In that first year of life, he ended up having five brain surgeries because that shunt kept breaking. He had a lot of setbacks that first year. Now, we have literally spent the last two years just helping him build skills. It's a miracle that he's actually talking. Up to September, when he turned three, he wasn't even saying “Mama,” but now he's putting sentences together. His receptive and his expressive vocabulary have caught up tremendously well. He is still delayed in speech, and he is still delayed in some gross and fine motor skills, but he's making progress. There's no concern that his skills won't get to where he needs them to be. He's in preschool and he's able to play and to connect with his peers, so that's a huge thing for us. The one thing that he struggles with - and we struggle to get the services for - is for his sensory processing disorder. This is also a condition common in children with autism or ADHD. Basically, it means that the sensory system processes input from the external environment in a different way than a typically developed brain, whether it's movement, or hearing, or vision, or other sensations. He has a lot of sensory challenges. We have to work with therapists to relearn how to do certain things, or to integrate his sensory system so that he can process things and respond to them. As an example, he was a late walker. He first walked at 21 months. His vestibular system was completely out of whack. That is a sensory system in your inner ear that helps you perceive that there is something in front of you. He would literally run and just go with no worries. It took a really long time for him to be able to walk without bumping into things. Or he would step on things, and not realize that they were there. As a parent, this causes a lot of fear. He also has some auditory challenges related to filtering sound. He will hear a dog bark like three blocks away, and I won't hear that. But I may be speaking to him and he may not be able to attend to my words because of another sound that he's hearing. That's one of the things that I struggle with the most: because he doesn't have an autism diagnosis, we can't get insurance to cover the proper services for him. I spend days fighting with insurance companies, and his developmental psychologists, and his entire medical team to try to advocate for the services that he needs, so that we're not spending thousands of dollars a week for him to get therapies. That being said, we've come a long way. We've been able to get many of his services covered. And his sensory system is continuing to evolve and get better, even though he's got quite a way to go. It could be many, many years before we feel like he’s gotten the same kind of sensory experience that you and I or any children his age would have. My husband and I have been taught by this experience to rethink so much about how we process sensations ourselves. We used to take it for granted. Now, we're constantly saying, “How would C. experience that?” With eating, his response to food is much more about the visual experience than it is about what it tastes like. It's very different. One of the main services we would like to support through insurance is ABA therapy (Applied Behavioral Analysis). It’s a specific type of occupational and behavioral therapy given to children that have sensory issues. We can get the services out of pocket, but it’s incredibly expensive. It’s hours of therapy a day. A therapist needs to come in and observe your child for hours to understand all the nuances, and then help develop a plan for the parents and others who care for that child, including schools and teachers. It is incredibly expensive. We have not done ABA therapy yet. I've researched it a lot, and I've talked to a lot of his doctors about it. I was recently able to get a long letter from his doctor stating that C. requires ABA therapy. The letter says that ABA isn’t just a nice thing to have but it is a requirement for him. I'm going to take that letter to his insurance and his therapists and say, “Okay. We're ready to move forward.” With ABA therapy, I can’t speak from experience yet. My understanding is that it's basically rewarding or reinforcing behavior, either a negative reward or positive reward. I'm a little bit nervous about it, to be honest with you. I have heard some people say it’s important to have the right therapist or you can feel like you're harming your child. Having the right therapist who knows how to build a relationship with your child goes a long way. I noticed his sensory processing challenges at around 18 months. We got a diagnosis after I spent a lot of time saying “Something's not right, something's not right.” At first, the feedback was “Okay, let's just wait and see. He's still really young”. It took a lot of me saying “No, no, no” for several months. I feel like I diagnosed him. I said to my pediatrician, “I think he has sensory challenges.” I didn't even know what really that meant at the time, but they were so pronounced. She listened and said, “Okay. Let me let me refer you to this occupational therapist that I hold in high regard. She has a lot of experience with children with sensory processing disorder. Let's see what she says.” So we got the referral to the occupational therapist and had an evaluation done on him, and along with a developmental psychologist, she was the one that officially diagnosed him with sensory processing disorder. The OT is amazing. She saved our lives. We started intensive OT right away, five days a week, and within a month we started seeing differences. I highly recommend her. She's been in practice for over 30 years, and she's actually very well known in the DC area. Her name is Teri Kozlowski. She's in Kensington, Maryland. The name of the practice is TeeKoz Kids It's very difficult to get an appointment with her without a recommendation from a pediatrician, but I think it's worth putting her name out there because the therapists that are her protégés in her practice are all equally excellent.
What was your experience, if any, seeking a diagnosis or treatment?
We were in and out of the office that adjusts his helmet constantly. He had these markings from the helmet all of the time. It was very stressful. They grow so much at that age. After two-and-a-half months, right before he turned one, we discontinued the helmet. It didn't really make too much progress, in my opinion. He wasn't crawling yet. He wasn't doing any of the things that other “typical” kids would. I have a friend who works in Early Intervention. She recommended that we start Early Intervention because he was wearing this helmet, and it was harder for him to crawl because he's like, lopsided. He qualified for Early Intervention, and initially it was to help him catch up. Early Intervention was very smooth, the way that it works in Philadelphia. You call a number and a Support Coordinator comes out. They do an interview and they evaluate your concerns. You need to have a 25% delay in any of the five areas (cognitive development; physical development, including vision and hearing; communication development; social or emotional development; and adaptive development or self-care). He was receiving physical therapy and “special structures”: somebody comes and they play with him to help him with his development. He also 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 has made progress. He is doing so much better. There has been so much play with him and so much repetition and so much patience. He can sign more. He grunts and I kind of know what he wants. He points. And I’m like, “OK.” And then I give him choices: “Do you want this? Or do you want this?” He points to what he wants. “It’s not that. OK, you want the other one.” Parents need to follow their gut. My pediatrician was like, “Oh, you know, I wouldn't worry about it.” Late January, we took him to the pediatrician to discuss the developmental issue, I said, “Hey. He's not talking. This is the direction that we’re thinking of going.” And the pediatrician said, “Well, he looks like a typical child. He's just not communicating. I would just go for a speech evaluation.” The pediatrician said, “Maybe he has apraxia (of speech).” I mentioned it to the speech therapist who said, “No. he doesn't have apraxia because somebody with apraxia needs to communicate, first. He doesn't communicate.” The plan to meet with a developmental pediatrician was my doing. I’m a licensed social worker, and I used to work with autistic kids. When I told the pediatrician that was the direction I was going, she said, “I wouldn’t do that. They’re going to automatically diagnose him. I would just get a speech evaluation.” My thought process was, “He doesn’t talk, so what is the speech evaluation going to do?” The developmental pediatrician can do further assessment, and if they need to refer him somewhere, they can.
Share the first part of F.'s story for readers on Sleuth! When and why did you start to feel concerned?
My son started talking and walking at 10 months old. For all we could tell - and for all the doctors could tell - he was typical. You could ask him, “What does a cat say?” and he would answer. He would play peekaboo. He was engaged, and he had probably 30 words by the time he was 18 months old. I noticed at around that 15-month mark that he was not saying “Mama.” My husband said, “He's saying it. Do you hear him? He says, ‘Mom.’” I said, “I don’t think so.” That was the first thing that I questioned. He would say words, and then he would stop using them. Then, on top of that, he wouldn't eat very much variety. The doctors told me, “Oh, he's fine. Lots of kids are like that. As long as he's eating yogurt and those fruit pouches, he's fine. Don't worry about it.” So I didn't give it much thought. Then, at around 18 months, some of his words started changing. He went from saying “bite” to saying “bing,” and then he lost that word completely. I was pregnant with my second child at the time. F. was going to be 22 months old when I had my second one. At around the 20-month mark, he quit eating even more, dropped even more safe foods and then dropped even more words. By the time he was 22 months, right around the birth of my second child, he lost basically all of his words, and his level of social engagement dropped to very little. A friend of mine was getting married, so we traveled out of state from Georgia to Oklahoma to go to her wedding. That's when it was the worst. We realized just how far into himself he had gone. My family was there with us, and we all thought, “He's just not engaging at all.” He went through a regression, basically. In December, at the age of two, he wasn’t responding to us and there were no words at all.
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.
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At 24 months old, among children with Cortical Visual Impairment
Sleuth was born out of frustration and hope: Frustration from endless hours scouring the Internet for clues about our children’s symptoms. Hope because we found other parents on similar journeys. What if parents could share their experiences with exactly the people who need them?Read Story