When and why did A mom in the Bay Area start to feel concerned about R.'s health and development?My son is almost two years old now. Last summer (when he was about 1 year old), he was sick for two or three weeks in a row. We weren't too concerned at the time, and then suddenly – well, it wasn’t sudden, but it seemed sudden – he lost 10% of his body weight within a month. He got to the point where he was so backed up, he wasn't eating anymore. I'm sure there were signs earlier that we didn't catch. For instance, he was not going to the bathroom regularly. And between me and my husband and our childcare, we never put that together. By the time we saw all the symptoms, he wasn't eating very much. And when he did, he’d throw up. Lots of throwing up. And he was in massive pain all the time. He was in such pain a few times that we had to go to Urgent Care. It was the worst. The scary thing was also that he just stopped all of the progression that he had been making. He had been cruising and starting to walk, and he just stopped everything. He wasn't talking yet, and he just became listless. It was terrifying. We never diagnosed why he lost all the weight. We found that there were a bunch of different issues, gastrointestinal issues. The weight came back first, but the bigger problem was that it took longer for him to get back to any physical and speech milestones. He started walking only once he had started on a new formula for a few months and gained weight. Now, we're actually seeing progression in his speech, which we haven't seen in the past. Up until he was well over 18 months old, he had no words that were consistent. I'm sure they’re supposed to have at least five to 10 words (or so) at that stage. That's when we went to a speech pathologist, and they acknowledged that he should have some consistent words. Recently, he's developed around 20 consistent words, and he's imitating, and you can just see him gaining confidence and gaining consistency. I'm feeling cautiously optimistic.
When and why did GF start to feel concerned about C.'s health and development?My son (nicknamed C.) is a sensory seeker. He's very active. At 18 months, he was constantly moving and doing a lot of physical activities that I didn't see other kids his age do. He also had an enormous amount of trouble self-soothing at night to go to sleep. He was having trouble going from a highly aroused state to a calm, relaxed state where he could fall asleep. We tried sleep training. We tried to do all the typical things that people tell you to do at that age. None of it worked. I just felt like something was off. Like there was something else going on. And when he would wake up in the middle of the night, which a lot of kids that age still do, he just couldn't go back to sleep. He was in a highly vigilant state, wide awake. It was at 18 months that I first mentioned this to his pediatrician. She said, “Well, his nervous system is still maturing. Let's see what happens”. As the months went on, and he started to walk, we noticed that it was like he had no sense of where he was. And then feeding challenges started: he was a really good eater until he wasn't. It was very dramatic. We felt like there might have been some sensory-related stuff going on with either what we were putting in his mouth or what he was seeing. We still struggle with feeding. I mean, it's gotten better. But picky eating was a big indicator of his condition. Then there was the activity level and the lack of focus. C. had a hard time staying focused on one activity. My son was born extremely premature at 24 weeks. Not everybody knows that 24 weeks is the line of viability. He was literally four days after the line. It was a very traumatic birth for him and also a traumatic labor for me. He was born weighing 705 grams. I'll tell you why I say it in “grams.” Because when they are born that early, every gram matters. They consider your probability of surviving partly based on the number of grams you weigh at birth. After he was born, all the nurses kept coming into the recovery room saying, “Oh my! He's 705 grams! Isn't that amazing?” There was like this celebration. He was a little bigger than normal for 24 weeks, but 705 grams is actually one pound and nine ounces. He was tiny. He fit in the palm of my hand. He was very, very small. He spent about five months in the NICU, and it was a very complicated NICU journey for him. Every child in the NICU has their own story. He was challenged with a host of medical issues that almost claimed his life, and also were potentially going to impact his development. When we came out of the NICU we were linked with Strong Start, which is Washington D.C.’s version of early intervention. We started Strong Start at about four months of age, if we correct his age for his premature birth, or eight months old from birth. We were working on some very basic things around gross motor skills, making sure he was moving his head right, that he was making eye contact, some of those typical infant developmental milestones. From the beginning, I had a sense of vigilance around potential delays in his development. In that respect, I think my story might be a little bit different than most families. I already had a heightened awareness that things were probably not going to be typical. The challenges that I had were really the struggles with the system. We knew C. was going to need a lot of therapy. We knew that he was potentially going to be diagnosed with a host of medical conditions that we couldn't predict in his early infant years. I was very proactive about it. But it was still very, very challenging to get the right services, to know who the right people were to talk to, to get coverage from insurance. I always tell people who have questions about what it is like to have a child who was born early or has special needs: this is all really hard. You have the typical challenges of raising an infant. And then you also are a medical coordinator, you’re an insurance advocate, and you're an expert at X, Y and Z diagnosis. You have a host of different hats that you have to put on every single day. The system is not always cut out to support you, right? It's almost the opposite. There are some days where I wake up feeling, “Okay, I'm in fight mode. Let's go!” I have to fight to get through the day, to be able to accomplish the things that my son needs in order to continue to develop and to thrive. That’s our overarching experience. He is now three years and seven months old. When you're born early, they use “corrected age” (based on the date you should have been born, so to speak, if you came to full term at 40 weeks) versus actual age for the first two years of life, because there is a developmental lag. The medical and school systems assume that by the time you are two years old, the child should have caught up, unless there's a major medical issue. Then after two years, you use only on the actual birthday so to speak. So he's actually three years and seven months from his day of birth.
When and why did Jeff start to feel concerned about S.'s health and development?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.
When and why did KE start to feel concerned about F.'s health and development?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.
When and why did MG start to feel concerned about M.'s health and development?I had a little heads up that things might be different. At the amnio, they found a marker on Chromosome 17. This was back in 2008. My daughter is 11 years old now. I went to everybody I could find: my doctor, other doctors, other specialists. I said, “What would this look like?” because the genetic counselor at the obstetrician’s office was trying her best to persuade me to abort. She went as far as to propose a date. They didn't know what a marker on 17 meant, or what it would look like when my daughter got older. My daughter looked okay in the sonogram. Finally, I found a genetic specialist who said it would look like learning disabilities and wouldn't show up until she was in elementary school. I'm a teacher, so I thought, “How could I possibly abort a child who has learning disabilities?” Anyway, the birth proceeded, and everything looked okay. This was my first and only child. I had no idea what to look for, or what the milestones were. Then, as she got older, it was clear there were issues with her development. She didn’t roll over. She didn’t sit up. She had hypotonia: she was like a rag doll with no muscle tone. She did make good eye contact, though. She talked early, before two years old, and has never stopped talking! She crawled late - two weeks before she turned two, and then she started walking at two or thereabouts. She couldn’t climb the steps, initially. She couldn’t run well. She has always had a problem with the right leg not quite keeping up with the left. She definitely has signs of ADHD. She has a very poor attention span and very poor frustration tolerance. She’s a brat, if there’s not a better term. She’s very oppositional. She wants what she wants, when she wants it. And she’s also needy. She always wants attention. She loves negative attention the best. It’s like she’s an addict, and her drug is being yelled at or being scared. She should eventually be a skydiver because she loves that high. She likes this more than positive attention. More than: “Hooray!” She’s really good with language, and has a really good memory. But she behaves like a two-year old. Except that a two year old goes and destroys something because they don't know better; she will destroy something because she wants to get a reaction. She’ll rip her book. She’ll grab a plant. We have to baby-proof the house. Knives can’t be out. She’ll grab one… She did it twice yesterday, because my brother made the mistake of leaving one on the island in the kitchen.