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29 years & 1 month old

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.

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4 years & 4 months old

What was GF's experience seeking a diagnosis and treatment for C.?

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.



5 years & 4 months old

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

If you talk to a therapist and if you watch your kid interact with them, you can tell if your kid is connecting with them. We had another occupational therapist come into the home, and she was trying to physically hold him down, and it just felt barbaric to me. It wasn't going to mesh with him. His personality is strong, and he wants to do the things that he wants to do. He doesn't like strangers that he doesn't know touching him. And the therapist wanted to do all those things in the home, where he was bored. He didn't want to do any of that. I said, “No.” That's when I found his other occupational therapist in a clinic. It had to be in a clinic setting. He did so much better. The advice that I would have for somebody is: don't just think that speech therapy is going to fix speech. There are other things that could be involved. And I believe in the power of occupational therapy because they do literally everything. In a clinic setting, they can provide tools for play like a gym, a trampoline, and swings. There are all these things they can use to engage kids. Language isn't going to connect with kids like F. because they don't know what you're saying. He has a pretty severe receptive delay on top of the expressive delay. Also, children like F. need to get outside. Get them walking on trails, and exploring on their own. Give them a little bit of autonomy. Whatever you're trying to do - if you're trying to make him say certain words, you have to loop in his interests. For F., I know that if he's not interested, he's not going to do anything you're asking him to do. I can ask him to draw, or to trace something. If I asked him to trace a tree, he would say, “I don’t want to trace a tree.” If I put a pirate ship in front of him, though, he'll trace the pirate ship. You have to do things that are in tune with your own kid. You can't present an activity just because somebody else said it worked and expect the same thing to work for your own kid. Every child is so different. F. likes running in the sprinkler. He likes running in general. He likes hiking through the trails, and just walking through the woods. He likes sliding, and swinging, and jumping on the trampoline - literally just anything he can use to be active.



2 years & 7 months old

What was A mom in the Bay Area's experience seeking a diagnosis and treatment for R.?

For the first two to three weeks, the pediatrician wasn't that concerned. She's an excellent pediatrician, but she just thought he had the flu and there were some complications. Then, we thought he was constipated. But we got an x-ray, and he was constipated to the point where he might have to go into the hospital for a procedure. This is TMI, but parents are good with this kind of info: There was a whole process of giving him an enema a day, and lots of Miralax and laxatives. That cleaned him out. We put him on formula for older kids. And after that, he gained the weight back. Now his digestion is fine, but he's almost two, and he's still having formula twice a day. I have an appointment with a GI doctor tomorrow to find out if that is that normal. And if not, what do we do next? The closest we have to a diagnosis is that it’s a GI disorder. The only way to diagnose it fully would be invasive, I think testing a sample of the abdominal lining. And if this is a GI disorder, it’s still treated by the formula we're giving him. So his doctor basically said, “Keep the formula up. If it works, don't mess with it. We won't try to diagnose for now.” We have a family history of ulcerative colitis, so we think it could be something in that sort of category. The other thing that might be worth noting is he has six pretty big allergies, which I'm sure contribute to all of this: Milk, eggs, peanuts, pistachios, sesame, and cashews. I don't want to say that our pediatrician wasn't helpful, but the process wasn't rigorous. You know, when your kid is sick and is that young, you expect a team of doctors to help you figure out what to do. It wasn't that. And the scary thing was, “Why?” It just felt like we couldn't do anything. We have no medical training, me or my husband. We were new to all of this. The doctor was telling us she wasn't that worried, but we could tell something was wrong. We resorted to Googling, which was terrible. I ended up stopping that because it was just terrifying. We hounded our doctor to see different specialists. We ended up going to a GI doctor (a gastroenterologist) and the neurologist. Those were the two biggies. And an allergist. We did not find anything definitive from those appointments. They won't rule anything out, which is frustrating, but they think he is good. They said he seemed normal - except he hadn't spoken. You'd expect a child of his age to say words at that point. We went to a hearing specialist, but his hearing is fine. Speech therapy has just started, and they said he's slow, compared to other kids. They don't use the word “slow,” but most kids his age have a lot more words than he does. Again, no one's particularly worried, for better or worse. There's no explanation. Our first speech therapist appointment was in January, actually, because they don't typically see kids until 18 months - or at least that's what we were told. We only did physical therapy once. For speech therapy, we should be going weekly, but there's a delay to set up appointments, and with COVID everything got messed up. We basically had a four-to-six month period of just not knowing if my son’s progression was normal, if there was anything else wrong. Now, he seems to be trending better. But we never got a firm diagnosis, and he's slow at talking and was slow at walking as a result of his condition.

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At 24 months old, among children with Cortical Visual Impairment

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