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C.

Male | 3 years & 7 months

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C.

Male | 3 years & 7 months

C.'s Journey, as told by GF

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.

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

If you see something that doesn't feel right to you, don't hesitate for even a minute to have it checked out. If you're not getting the answers that you need, don't stop looking for them. Because you know your child better than anybody else. I haven't even told you guys about his medical history. I’ve just shared his developmental experience. But even in the course of his medical challenges and all the complexities, nine times out of ten, I had to push for answers or say, “This doesn't seem right,” or “I don't agree with this,” so that we were able to get the diagnosis he needed or he got the treatment he needed. In one case, it actually saved his life. That would be my biggest overall advice regardless of what the diagnosis is or what the challenge is that you're dealing with with your child. Never stop asking questions. Even this week, I've been trying to get this letter of medical necessity, as I mentioned, from his developmental psychologist. She’s great, but I also know she's overworked. She was supposed to send it to me on Tuesday, and I've literally emailed her every day with no response. I finally got an email today and she was like “Oh, that. Yeah. I'll get that to you”. And she finally got it to me. Don't wait, keep pushing, be the jerk, be the bitch, whatever you want to call it. The squeaky wheel does get the grease.

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.

C.'s Medical Notes

Signs & Symptoms

Diagnosed Conditions

Sensory processing disorder

Treatments & Therapies

Applied Behavioral Analysis (ABA)

Brain surgery

Shunt

Doctors & Specialists

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