Last year I spent one fall morning filling out forms so that my 9-year-old son could see yet another specialist, get yet another evaluation, have yet another appointment with someone we were hoping could help us figure him out. At the time, his current diagnoses were ADHD and PDD (Pervasive Developmental Disorder, although NOT the PDD that most people associate with the autism spectrum — more of a child-wide developmental delay), his behavior, his reaction to medication, and the impact his various therapies were having (or rather, weren't having) on him left us puzzled. Nothing seemed to fit. His diagnoses seemed off. So it was off for round 4 of evaluations. We were taking him to a clinic that specializes in FASD, or Fetal Alcohol Spectrum Disorder. Basically, we, and his doctors, thought he was exposed to alcohol in utero and it's this resulting brain damage that has manifested itself in his behaviors, his processing issues, and his learning problems. Things we knew to be true: my son was adopted. His birth mother was an alcoholic. Things we also knew to be true: if this was his deal — that he had FASD, which is permanent brain damage — he and we would need a whole new level of education, therapies, and strategies for the future. We took him to the clinic. After interviews with my husband and myself, a session with an occupational therapist and a speech therapist, as well...

After evaluations, a child with ADHD symptoms was diagnosed with partial FASD, changing perspectives on treatment and care.

Is it ADHD or Could it Be FASD?

 Last year I spent one fall morning filling out forms so that my 9-year-old son could see yet another specialist, get yet another evaluation, have yet another appointment with someone we were hoping could help us figure him out. At the time, his current diagnoses were ADHD and PDD (Pervasive Developmental Disorder, although NOT the PDD that most people associate with the autism spectrum — more of a child-wide developmental delay), his behavior, his reaction to medication, and the impact his various therapies were having (or rather, weren't having) on him left us puzzled. Nothing seemed to fit. His diagnoses seemed off. So it was off for round 4 of evaluations.   We were taking him to a clinic that specializes in FASD, or Fetal Alcohol Spectrum Disorder. Basically, we, and his doctors, thought he was exposed to alcohol in utero and it's this resulting brain damage that has manifested itself in his behaviors, his processing issues, and his learning problems.    Things we knew to be true: my son was adopted. His birth mother was an alcoholic. Things we also knew to be true: if this was his deal — that he had FASD, which is permanent brain damage — he and we would need a whole new level of education, therapies, and strategies for the future.    We took him to the clinic. After interviews with my husband and myself, a session with an occupational therapist and a speech therapist, as well...

Your baby was just diagnosed with Down syndrome. The pediatric cardiologist mentioned a heart defect. You're sitting in a hospital room trying to decode terms like AVSD, septal defect, and surgical repair while processing a diagnosis you didn't expect. Approximately 50% of infants with Down syndrome have a congenital heart defect. That statistic doesn't tell you what you need to know right now: which defects are most common, whether surgery is inevitable, what the procedure involves, or what survival outcomes look like in 2026. Here's what you need to understand about the three most common heart defects in Down syndrome, how they're diagnosed, what the surgical timeline looks like, and what modern outcomes mean for your child's long-term health. The Most Common Heart Defects in Down Syndrome. Three defects account for the majority of congenital heart disease in children with Down syndrome: atrioventricular septal defect (AVSD), ventricular septal defect (VSD), and atrial septal defect (ASD). Atrioventricular septal defect (AVSD) is the most common. It's a hole in the center of the heart where the upper chambers (atria) and lower chambers (ventricles) meet. In a typical heart, these chambers are separated by tissue. In AVSD, that separation didn't form completely during fetal development. Blood flows between chambers that should remain separate, forcing the heart to work harder and allowing oxygen-rich and oxygen-poor blood to mix. AVSD occurs in approximately 40–45% of children with Down syndrome who have heart defects. The condition is sometimes called endocardial cushion defect or AV canal...

Half of infants with Down syndrome have heart defects. What AVSD, VSD, and ASD mean, when surgery happens, and what outcomes look like.

Heart Defects in Down Syndrome: What Every Parent Should Know

Your baby was just diagnosed with Down syndrome. The pediatric cardiologist mentioned a heart defect. You're sitting in a hospital room trying to decode terms like AVSD, septal defect, and surgical repair while processing a diagnosis you didn't expect. Approximately 50% of infants with Down syndrome have a congenital heart defect. That statistic doesn't tell you what you need to know right now: which defects are most common, whether surgery is inevitable, what the procedure involves, or what survival outcomes look like in 2026. Here's what you need to understand about the three most common heart defects in Down syndrome, how they're diagnosed, what the surgical timeline looks like, and what modern outcomes mean for your child's long-term health. The Most Common Heart Defects in Down Syndrome. Three defects account for the majority of congenital heart disease in children with Down syndrome: atrioventricular septal defect (AVSD), ventricular septal defect (VSD), and atrial septal defect (ASD).  Atrioventricular septal defect (AVSD) is the most common. It's a hole in the center of the heart where the upper chambers (atria) and lower chambers (ventricles) meet. In a typical heart, these chambers are separated by tissue. In AVSD, that separation didn't form completely during fetal development. Blood flows between chambers that should remain separate, forcing the heart to work harder and allowing oxygen-rich and oxygen-poor blood to mix. AVSD occurs in approximately 40–45% of children with Down syndrome who have heart defects. The condition is sometimes called endocardial cushion defect or AV canal...

Understanding Congenital Heart Defects: Prevention, Treatment and Care for Special Needs Individuals. Heart health forms the foundations of our well-being, acting as an incredible yet often overlooked engine room that keeps us functioning. Yet, for individuals with congenital heart defects, it's a vastly different and more complex narrative. Today, we dive into the journey of understanding congenital heart defects, from prevention pathways and novel treatments to the specialized care required. The Nature of Congenital Heart Defects Congenital heart defects (CHDs) are issues present at birth that negatively impact the structure and functionality of the heart. The range can span from a minor defect that almost goes unnoticed, to a serious condition disrupting normal blood flow, demanding immediate medical intervention. Path Towards Prevention Evidence shows that fetal heart health directly correlates with maternal health and lifestyle. While not all CHDs can be prevented, certain measures like maintaining a balanced diet, avoiding harmful substances, and regular antenatal healthcare check-ups can significantly lower their likelihood. Innovations in Treatment Modern medicine has made huge strides in managing CHDs. Recent innovations include 3D printing technology to fabricate exact replicas of individuals' hearts for pre-surgery planning, or non-invasive transcatheter procedures that repair defects without necessitating open-heart surgery. Gene editing techniques, still in experimental stages, hold immense potential for correcting genetic anomalies causing CHDs. Specialized Care for Special Needs Individuals Caring for individuals with CHDs, especially those with special needs, necessitates a holistic, tailored approach. Therapies beyond medical intervention...

Congenital Heart Defects: Prevention, Treatment, and Specialized Care for individuals with special needs.

A Comprehensive Review on Congenital Heart Defects and the Critical Care Demanded in Special Needs Individuals

Understanding Congenital Heart Defects: Prevention, Treatment and Care for Special Needs Individuals. Heart health forms the foundations of our well-being, acting as an incredible yet often overlooked engine room that keeps us functioning. Yet, for individuals with congenital heart defects, it's a vastly different and more complex narrative. Today, we dive into the journey of understanding congenital heart defects, from prevention pathways and novel treatments to the specialized care required.  The Nature of Congenital Heart Defects  Congenital heart defects (CHDs) are issues present at birth that negatively impact the structure and functionality of the heart. The range can span from a minor defect that almost goes unnoticed, to a serious condition disrupting normal blood flow, demanding immediate medical intervention.  Path Towards Prevention  Evidence shows that fetal heart health directly correlates with maternal health and lifestyle. While not all CHDs can be prevented, certain measures like maintaining a balanced diet, avoiding harmful substances, and regular antenatal healthcare check-ups can significantly lower their likelihood.  Innovations in Treatment  Modern medicine has made huge strides in managing CHDs. Recent innovations include 3D printing technology to fabricate exact replicas of individuals' hearts for pre-surgery planning, or non-invasive transcatheter procedures that repair defects without necessitating open-heart surgery. Gene editing techniques, still in experimental stages, hold immense potential for correcting genetic anomalies causing CHDs.  Specialized Care for Special Needs Individuals  Caring for individuals with CHDs, especially those with special needs, necessitates a holistic, tailored approach. Therapies beyond medical intervention...

A recent article in the press described one couple's "abortion pact." That is, if any pregnancy had a chance of a fetal anomaly they would abort. The couple felt that because of their age – she was 37 and he was in his 40s – they had an increased risk of having a child with a disability and they were not prepared to care for such a child. I was going to write an emotionally detached post about this article, because I've had a few weeks to calm down from when I first read it. Yeah, right. I cry whenever I think about it. I was going write about the difficulty in making a decision when you simply don't know. You don't know what the future will hold for you or your child. You don't know if the test is accurate. You don't know if the science is sound or what medical interventions will come. There are no crystal balls. I was going to write about the notion of 'chasing normal' and how it permeates our society's quests for perfection. Really, how perfect are you? What if someone decided that you were somehow wrong or 'damaged.' Would you still be here? I was going to write about how this is a reflection of consumer culture and our objectification of people – that we think we can buy perfection and we (as parents) deserve nothing but 'the best.' Designer handbag, imported car, designer baby. I was going...

Article reflects on a couple's choice to abort if a fetus shows anomalies, discussing societal attitudes towards disability and perfection.

Prenatal Testing &#8211; the Abortion Pact

A recent article in the press described one couple's "abortion pact." That is, if any pregnancy had a chance of a fetal anomaly they would abort. The couple felt that because of their age – she was 37 and he was in his 40s – they had an increased risk of having a child with a disability and they were not prepared to care for such a child. I was going to write an emotionally detached post about this article, because I've had a few weeks to calm down from when I first read it. Yeah, right. I cry whenever I think about it.  I was going write about the difficulty in making a decision when you simply don't know. You don't know what the future will hold for you or your child. You don't know if the test is accurate. You don't know if the science is sound or what medical interventions will come. There are no crystal balls.  I was going to write about the notion of 'chasing normal' and how it permeates our society's quests for perfection. Really, how perfect are you? What if someone decided that you were somehow wrong or 'damaged.' Would you still be here?  I was going to write about how this is a reflection of consumer culture and our objectification of people – that we think we can buy perfection and we (as parents) deserve nothing but 'the best.' Designer handbag, imported car, designer baby.  I was going...

Researchers at the University of Nebraska Medical Center published a study April 20, 2026 in Molecular Psychiatry that analyzed 6.14 million U.S. birth records and found that commonly prescribed medications that inhibit cholesterol synthesis were associated with a 47% higher risk of autism diagnosis. The medications include widely used antidepressants, beta-blockers, and statins. When four or more of these medications were prescribed simultaneously during pregnancy, the risk climbed to 2.33 times baseline. The findings don't mean these medications are unsafe for adults or that pregnant people should stop taking them. They identify a specific biological mechanism that warrants discussion between patients and doctors about individual risk and possible alternatives. What the Study Found. The research team analyzed birth records from the Epic Cosmos database spanning 2014 to 2023, with follow-up through December 2025. They examined 14 medications known to inhibit sterol biosynthesis, the pathway responsible for cholesterol production in the body. The medications studied were aripiprazole, atorvastatin, bupropion, buspirone, fluoxetine, haloperidol, metoprolol, nebivolol, pravastatin, propranolol, rosuvastatin, sertraline, simvastatin, and trazodone. Mothers prescribed at least one of these medications during pregnancy had a 1.47-fold higher risk of having a child later diagnosed with autism spectrum disorder. Risk increased with each additional medication, climbing 1.33 times for every sterol-inhibiting drug co-prescribed. The pattern held across different medication classes. Whether the drug was an antidepressant, a beta-blocker, or a statin, the shared mechanism of cholesterol pathway disruption showed a consistent association with autism diagnosis. Why Cholesterol Matters for Fetal Brain Development. Cholesterol is...

UNMC study finds cholesterol-inhibiting medications during pregnancy associated with 47% higher autism risk

Common Medications Taken During Pregnancy Are Linked to Increased Autism Risk in a New Study of 6 Million Births. Here's What Families Need to Know.

Researchers at the University of Nebraska Medical Center published a study April 20, 2026 in Molecular Psychiatry that analyzed 6.14 million U.S. birth records and found that commonly prescribed medications that inhibit cholesterol synthesis were associated with a 47% higher risk of autism diagnosis. The medications include widely used antidepressants, beta-blockers, and statins. When four or more of these medications were prescribed simultaneously during pregnancy, the risk climbed to 2.33 times baseline. The findings don't mean these medications are unsafe for adults or that pregnant people should stop taking them. They identify a specific biological mechanism that warrants discussion between patients and doctors about individual risk and possible alternatives. What the Study Found. The research team analyzed birth records from the Epic Cosmos database spanning 2014 to 2023, with follow-up through December 2025. They examined 14 medications known to inhibit sterol biosynthesis, the pathway responsible for cholesterol production in the body. The medications studied were aripiprazole, atorvastatin, bupropion, buspirone, fluoxetine, haloperidol, metoprolol, nebivolol, pravastatin, propranolol, rosuvastatin, sertraline, simvastatin, and trazodone. Mothers prescribed at least one of these medications during pregnancy had a 1.47-fold higher risk of having a child later diagnosed with autism spectrum disorder. Risk increased with each additional medication, climbing 1.33 times for every sterol-inhibiting drug co-prescribed. The pattern held across different medication classes. Whether the drug was an antidepressant, a beta-blocker, or a statin, the shared mechanism of cholesterol pathway disruption showed a consistent association with autism diagnosis. Why Cholesterol Matters for Fetal Brain Development. Cholesterol is...

Your child's bowel function is unpredictable. You can't plan outings because you don't know when incontinence will happen. School is stressful for the same reason. Nothing you've tried has given you a reliable pattern. This isn't a behavioral problem. It's a neurological one, and the solution is a structured bowel management program, not more effort or discipline. Neurogenic bowel dysfunction is common in conditions like cerebral palsy and spina bifida. The disrupted nerve signaling to the colon and rectum makes bowel function unreliable. But a well-designed bowel program can restore predictability. Not perfection, but a schedule you and your child can plan around. What Neurogenic Bowel Is. Neurogenic bowel means the nerves that control bowel function aren't working as they should. The result is either a hyporeflexic bowel, which is flaccid with no sensation and no reflex, or a hyperreflexic bowel, which has reflex contractions but unpredictable evacuation. In hyporeflexic bowel, stool moves slowly and there's no signal to evacuate. Overflow incontinence is common because the rectum fills beyond capacity. In hyperreflexic bowel, reflex activity can trigger evacuation without warning. The most common causes are spina bifida, especially myelomeningocele, cerebral palsy, spinal cord injury, and sacral agenesis. Fecal incontinence affects up to 56 percent of patients with cerebral palsy. This is not a behavioral problem. It's a neurological one. Constipation affects up to 74 percent of children with cerebral palsy. The combination of slow motility, limited mobility, and reduced fluid intake creates a difficult baseline. A bowel program addresses all...

Build a bowel program for cerebral palsy and spina bifida that achieves predictable function and reduces incontinence.

Building a Bowel Management Routine for Children with Neurogenic Bowel

Your child's bowel function is unpredictable. You can't plan outings because you don't know when incontinence will happen. School is stressful for the same reason. Nothing you've tried has given you a reliable pattern. This isn't a behavioral problem. It's a neurological one, and the solution is a structured bowel management program, not more effort or discipline. Neurogenic bowel dysfunction is common in conditions like cerebral palsy and spina bifida. The disrupted nerve signaling to the colon and rectum makes bowel function unreliable. But a well-designed bowel program can restore predictability. Not perfection, but a schedule you and your child can plan around. What Neurogenic Bowel Is. Neurogenic bowel means the nerves that control bowel function aren't working as they should. The result is either a hyporeflexic bowel, which is flaccid with no sensation and no reflex, or a hyperreflexic bowel, which has reflex contractions but unpredictable evacuation. In hyporeflexic bowel, stool moves slowly and there's no signal to evacuate. Overflow incontinence is common because the rectum fills beyond capacity. In hyperreflexic bowel, reflex activity can trigger evacuation without warning. The most common causes are spina bifida, especially myelomeningocele, cerebral palsy, spinal cord injury, and sacral agenesis. Fecal incontinence affects up to 56 percent of patients with cerebral palsy. This is not a behavioral problem. It's a neurological one. Constipation affects up to 74 percent of children with cerebral palsy. The combination of slow motility, limited mobility, and reduced fluid intake creates a difficult baseline. A bowel program addresses all...

On March 7, 2026, 25-year-old Alex LaMorie called 911 for help during a mental health crisis. He had autism, lived independently in a Maryland apartment complex designed for people with disabilities, and was in distress after falling victim to an online extortion scam. Police arrived. LaMorie approached officers holding a knife. Three officers fired. He died at the scene. His death, reported by Disability Scoop on April 22, has reignited urgent calls for reform of how emergency services respond to mental health crises involving people with disabilities. LaMorie's case isn't isolated. Roughly 25% of fatal police encounters nationwide involve someone undergoing a mental health crisis, and advocates argue that current systems designed to help are instead putting lives at risk. For families raising a child with autism or another disability, the stakes are clear: when a crisis happens, calling 911 can be dangerous. But not calling leaves your loved one without support. New research and advocacy efforts show that change is possible, but families can't wait for reform to protect themselves. What Happened to Alex LaMorie. LaMorie was one of the first residents selected to live in Patuxent Commons, a $44 million apartment complex in Howard County, Maryland that opened in late 2025 to provide independent, inclusive housing for adults with disabilities. He'd already earned an associate's degree and was studying at the University of Maryland Global Campus. During the early morning hours of March 7, LaMorie called 911 believing he was the victim of an extortion scam and threatening...

Alex LaMorie's death reveals systemic failures in emergency response for people with disabilities and what families can do.

After a Man with Autism Called 911 for Help and Was Fatally Shot, Advocates Are Demanding Change. Here's What Every Disability Family Needs to Know.

On March 7, 2026, 25-year-old Alex LaMorie called 911 for help during a mental health crisis. He had autism, lived independently in a Maryland apartment complex designed for people with disabilities, and was in distress after falling victim to an online extortion scam. Police arrived. LaMorie approached officers holding a knife. Three officers fired. He died at the scene. His death, reported by Disability Scoop on April 22, has reignited urgent calls for reform of how emergency services respond to mental health crises involving people with disabilities. LaMorie's case isn't isolated. Roughly 25% of fatal police encounters nationwide involve someone undergoing a mental health crisis, and advocates argue that current systems designed to help are instead putting lives at risk. For families raising a child with autism or another disability, the stakes are clear: when a crisis happens, calling 911 can be dangerous. But not calling leaves your loved one without support. New research and advocacy efforts show that change is possible, but families can't wait for reform to protect themselves. What Happened to Alex LaMorie. LaMorie was one of the first residents selected to live in Patuxent Commons, a $44 million apartment complex in Howard County, Maryland that opened in late 2025 to provide independent, inclusive housing for adults with disabilities. He'd already earned an associate's degree and was studying at the University of Maryland Global Campus. During the early morning hours of March 7, LaMorie called 911 believing he was the victim of an extortion scam and threatening...

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