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The Extra Burden for Parents of Children With Special Needs The Extra Burden for Parents of Children With Special Needs
(3 days later)
As a developmental pediatrician, I have worked throughout this coronavirus crisis with parents strained by fears about their child’s learning, stresses around anxiety and behavior, and the disruption of school services.As a developmental pediatrician, I have worked throughout this coronavirus crisis with parents strained by fears about their child’s learning, stresses around anxiety and behavior, and the disruption of school services.
For parents of children with special needs, who often carry an extra heavy load managing academics in the best of times, the burden while on home quarantine is magnified.For parents of children with special needs, who often carry an extra heavy load managing academics in the best of times, the burden while on home quarantine is magnified.
Many educational services — such as a full-day program for a child with severe autism — are simply impossible to implement effectively online, and not all parents have time to monitor educational interventions. And the reality is that most parents are neither teachers nor therapists. Stay strong in planning for your family’s well-being, but don’t create more stress in your home by taking on more than is realistic.Many educational services — such as a full-day program for a child with severe autism — are simply impossible to implement effectively online, and not all parents have time to monitor educational interventions. And the reality is that most parents are neither teachers nor therapists. Stay strong in planning for your family’s well-being, but don’t create more stress in your home by taking on more than is realistic.
Parents may fear that with schools closed, their children’s progress will stall or reverse. But as always with children, long-term growth relies on a well-monitored three- or five-year plan, not every week or month along the way. Schools will open again at some point, and appropriate services will resume and methodically address whatever ground has been lost. It’s far from ideal, but it is our reality right now.Parents may fear that with schools closed, their children’s progress will stall or reverse. But as always with children, long-term growth relies on a well-monitored three- or five-year plan, not every week or month along the way. Schools will open again at some point, and appropriate services will resume and methodically address whatever ground has been lost. It’s far from ideal, but it is our reality right now.
That is not to say that you need to be resigned to accepting setbacks. If your child regresses developmentally or emotionally, reach out right away to your school, your pediatrician, or a mental health professional. Stay clear about what is possible now, and firm but patient in getting it done.That is not to say that you need to be resigned to accepting setbacks. If your child regresses developmentally or emotionally, reach out right away to your school, your pediatrician, or a mental health professional. Stay clear about what is possible now, and firm but patient in getting it done.
On a foundational level, our children’s emotional well-being and resilience matter most. With or without special needs, focus on positive relationships, physical and emotional safety, and routines around exercise, sleep and general health. That is the most vital bottom line for our children.On a foundational level, our children’s emotional well-being and resilience matter most. With or without special needs, focus on positive relationships, physical and emotional safety, and routines around exercise, sleep and general health. That is the most vital bottom line for our children.
Children rely on adults to create structure. A cognitive skill set called “executive function” includes all of judgment and planning. Anything that seems to require “management” in life, from attention to projects to emotions, relies on these abilities. But they are not fully developed until our late 20s. Adults have the only grown-up brain in the house, so kids rely on us for those skills quite often.Children rely on adults to create structure. A cognitive skill set called “executive function” includes all of judgment and planning. Anything that seems to require “management” in life, from attention to projects to emotions, relies on these abilities. But they are not fully developed until our late 20s. Adults have the only grown-up brain in the house, so kids rely on us for those skills quite often.
A consistent school schedule will cut down on arguing about schoolwork and fill a child’s day in a useful way. It is also emotionally reassuring for kids to have familiar routines. On a practical level, many children focus better when given a single task (start with math …) for a set amount of time (… from 8:30 to 9:15). A strong school plan may therefore create space for you to get your grown-up work done, too.A consistent school schedule will cut down on arguing about schoolwork and fill a child’s day in a useful way. It is also emotionally reassuring for kids to have familiar routines. On a practical level, many children focus better when given a single task (start with math …) for a set amount of time (… from 8:30 to 9:15). A strong school plan may therefore create space for you to get your grown-up work done, too.
Use your resources and make sure you have a specific plan for heading off acutely intense behavioral or emotional concerns. You may not have much time for these interventions, such as connecting with a psychologist or behavioral specialist. Explore what is possible with your school or your pediatrician, however, because a strong plan will decrease your own stress by providing you with new parenting tools and teach your children useful skills too.Use your resources and make sure you have a specific plan for heading off acutely intense behavioral or emotional concerns. You may not have much time for these interventions, such as connecting with a psychologist or behavioral specialist. Explore what is possible with your school or your pediatrician, however, because a strong plan will decrease your own stress by providing you with new parenting tools and teach your children useful skills too.
Behavioral learning often relies initially on adult-led intervention and feedback rather than discussion or child therapy. That means even if a child cannot yet participate in treatment all that much, or their therapy has been disrupted, there may still be steps you can take. For children with attention deficit hyperactivity disorder, for example, parent training in early childhood can be almost as effective as working directly with kids. And for autism, a plan coordinated with your school’s applied behavior analysis therapist may allow for social progress over these next weeks or months.Behavioral learning often relies initially on adult-led intervention and feedback rather than discussion or child therapy. That means even if a child cannot yet participate in treatment all that much, or their therapy has been disrupted, there may still be steps you can take. For children with attention deficit hyperactivity disorder, for example, parent training in early childhood can be almost as effective as working directly with kids. And for autism, a plan coordinated with your school’s applied behavior analysis therapist may allow for social progress over these next weeks or months.
In the meantime, collaborate with your school district (or outside providers if you have them) to continue services as best as possible. If you have the time as a parent (and of course, many of us don’t right now) there are also online parent resources for autism, A.D.H.D. and learning disabilities that may provide some guidance for at-home supports.In the meantime, collaborate with your school district (or outside providers if you have them) to continue services as best as possible. If you have the time as a parent (and of course, many of us don’t right now) there are also online parent resources for autism, A.D.H.D. and learning disabilities that may provide some guidance for at-home supports.
Special education law has not been suspended. Interventions such as reading instruction or speech language therapy may continue even during these uncertain times, as can some behavioral services. Ask your school to provide guidance and to continue online services directly with school staff when possible.Special education law has not been suspended. Interventions such as reading instruction or speech language therapy may continue even during these uncertain times, as can some behavioral services. Ask your school to provide guidance and to continue online services directly with school staff when possible.
Also recognize that all beginning learners need to develop academic “fluency,” meaning mastering skills like decoding words or math facts. That might mean using flashcards or an online math academic program, or activities such as having a child read aloud to you. A few consistent minutes over the upcoming months may go a long way toward staying on track for younger students.Also recognize that all beginning learners need to develop academic “fluency,” meaning mastering skills like decoding words or math facts. That might mean using flashcards or an online math academic program, or activities such as having a child read aloud to you. A few consistent minutes over the upcoming months may go a long way toward staying on track for younger students.
Now is also the right time to consider your child’s academic plan for the fall. The process of updating developmental or academic interventions typically relies on classroom and therapist feedback, and sometimes updated testing. For now, parents, schools and service providers must remain flexible in creating the best plan possible from the information we have. You can lay the groundwork for your fall plan this spring and adjust as needed.Now is also the right time to consider your child’s academic plan for the fall. The process of updating developmental or academic interventions typically relies on classroom and therapist feedback, and sometimes updated testing. For now, parents, schools and service providers must remain flexible in creating the best plan possible from the information we have. You can lay the groundwork for your fall plan this spring and adjust as needed.
Updated June 5, 2020 Updated June 12, 2020
Touching contaminated objects and then infecting ourselves with the germs is not typically how the virus spreads. But it can happen. A number of studies of flu, rhinovirus, coronavirus and other microbes have shown that respiratory illnesses, including the new coronavirus, can spread by touching contaminated surfaces, particularly in places like day care centers, offices and hospitals. But a long chain of events has to happen for the disease to spread that way. The best way to protect yourself from coronavirus — whether it’s surface transmission or close human contact — is still social distancing, washing your hands, not touching your face and wearing masks.
So far, the evidence seems to show it does. A widely cited paper published in April suggests that people are most infectious about two days before the onset of coronavirus symptoms and estimated that 44 percent of new infections were a result of transmission from people who were not yet showing symptoms. Recently, a top expert at the World Health Organization stated that transmission of the coronavirus by people who did not have symptoms was “very rare,” but she later walked back that statement.So far, the evidence seems to show it does. A widely cited paper published in April suggests that people are most infectious about two days before the onset of coronavirus symptoms and estimated that 44 percent of new infections were a result of transmission from people who were not yet showing symptoms. Recently, a top expert at the World Health Organization stated that transmission of the coronavirus by people who did not have symptoms was “very rare,” but she later walked back that statement.
A study by European scientists is the first to document a strong statistical link between genetic variations and Covid-19, the illness caused by the coronavirus. Having Type A blood was linked to a 50 percent increase in the likelihood that a patient would need to get oxygen or to go on a ventilator, according to the new study.A study by European scientists is the first to document a strong statistical link between genetic variations and Covid-19, the illness caused by the coronavirus. Having Type A blood was linked to a 50 percent increase in the likelihood that a patient would need to get oxygen or to go on a ventilator, according to the new study.
The unemployment rate fell to 13.3 percent in May, the Labor Department said on June 5, an unexpected improvement in the nation’s job market as hiring rebounded faster than economists expected. Economists had forecast the unemployment rate to increase to as much as 20 percent, after it hit 14.7 percent in April, which was the highest since the government began keeping official statistics after World War II. But the unemployment rate dipped instead, with employers adding 2.5 million jobs, after more than 20 million jobs were lost in April.The unemployment rate fell to 13.3 percent in May, the Labor Department said on June 5, an unexpected improvement in the nation’s job market as hiring rebounded faster than economists expected. Economists had forecast the unemployment rate to increase to as much as 20 percent, after it hit 14.7 percent in April, which was the highest since the government began keeping official statistics after World War II. But the unemployment rate dipped instead, with employers adding 2.5 million jobs, after more than 20 million jobs were lost in April.
Mass protests against police brutality that have brought thousands of people onto the streets in cities across America are raising the specter of new coronavirus outbreaks, prompting political leaders, physicians and public health experts to warn that the crowds could cause a surge in cases. While many political leaders affirmed the right of protesters to express themselves, they urged the demonstrators to wear face masks and maintain social distancing, both to protect themselves and to prevent further community spread of the virus. Some infectious disease experts were reassured by the fact that the protests were held outdoors, saying the open air settings could mitigate the risk of transmission.Mass protests against police brutality that have brought thousands of people onto the streets in cities across America are raising the specter of new coronavirus outbreaks, prompting political leaders, physicians and public health experts to warn that the crowds could cause a surge in cases. While many political leaders affirmed the right of protesters to express themselves, they urged the demonstrators to wear face masks and maintain social distancing, both to protect themselves and to prevent further community spread of the virus. Some infectious disease experts were reassured by the fact that the protests were held outdoors, saying the open air settings could mitigate the risk of transmission.
Exercise researchers and physicians have some blunt advice for those of us aiming to return to regular exercise now: Start slowly and then rev up your workouts, also slowly. American adults tended to be about 12 percent less active after the stay-at-home mandates began in March than they were in January. But there are steps you can take to ease your way back into regular exercise safely. First, “start at no more than 50 percent of the exercise you were doing before Covid,” says Dr. Monica Rho, the chief of musculoskeletal medicine at the Shirley Ryan AbilityLab in Chicago. Thread in some preparatory squats, too, she advises. “When you haven’t been exercising, you lose muscle mass.” Expect some muscle twinges after these preliminary, post-lockdown sessions, especially a day or two later. But sudden or increasing pain during exercise is a clarion call to stop and return home.Exercise researchers and physicians have some blunt advice for those of us aiming to return to regular exercise now: Start slowly and then rev up your workouts, also slowly. American adults tended to be about 12 percent less active after the stay-at-home mandates began in March than they were in January. But there are steps you can take to ease your way back into regular exercise safely. First, “start at no more than 50 percent of the exercise you were doing before Covid,” says Dr. Monica Rho, the chief of musculoskeletal medicine at the Shirley Ryan AbilityLab in Chicago. Thread in some preparatory squats, too, she advises. “When you haven’t been exercising, you lose muscle mass.” Expect some muscle twinges after these preliminary, post-lockdown sessions, especially a day or two later. But sudden or increasing pain during exercise is a clarion call to stop and return home.
States are reopening bit by bit. This means that more public spaces are available for use and more and more businesses are being allowed to open again. The federal government is largely leaving the decision up to states, and some state leaders are leaving the decision up to local authorities. Even if you aren’t being told to stay at home, it’s still a good idea to limit trips outside and your interaction with other people.States are reopening bit by bit. This means that more public spaces are available for use and more and more businesses are being allowed to open again. The federal government is largely leaving the decision up to states, and some state leaders are leaving the decision up to local authorities. Even if you aren’t being told to stay at home, it’s still a good idea to limit trips outside and your interaction with other people.
Touching contaminated objects and then infecting ourselves with the germs is not typically how the virus spreads. But it can happen. A number of studies of flu, rhinovirus, coronavirus and other microbes have shown that respiratory illnesses, including the new coronavirus, can spread by touching contaminated surfaces, particularly in places like day care centers, offices and hospitals. But a long chain of events has to happen for the disease to spread that way. The best way to protect yourself from coronavirus — whether it’s surface transmission or close human contact — is still social distancing, washing your hands, not touching your face and wearing masks.
Common symptoms include fever, a dry cough, fatigue and difficulty breathing or shortness of breath. Some of these symptoms overlap with those of the flu, making detection difficult, but runny noses and stuffy sinuses are less common. The C.D.C. has also added chills, muscle pain, sore throat, headache and a new loss of the sense of taste or smell as symptoms to look out for. Most people fall ill five to seven days after exposure, but symptoms may appear in as few as two days or as many as 14 days.Common symptoms include fever, a dry cough, fatigue and difficulty breathing or shortness of breath. Some of these symptoms overlap with those of the flu, making detection difficult, but runny noses and stuffy sinuses are less common. The C.D.C. has also added chills, muscle pain, sore throat, headache and a new loss of the sense of taste or smell as symptoms to look out for. Most people fall ill five to seven days after exposure, but symptoms may appear in as few as two days or as many as 14 days.
If air travel is unavoidable, there are some steps you can take to protect yourself. Most important: Wash your hands often, and stop touching your face. If possible, choose a window seat. A study from Emory University found that during flu season, the safest place to sit on a plane is by a window, as people sitting in window seats had less contact with potentially sick people. Disinfect hard surfaces. When you get to your seat and your hands are clean, use disinfecting wipes to clean the hard surfaces at your seat like the head and arm rest, the seatbelt buckle, the remote, screen, seat back pocket and the tray table. If the seat is hard and nonporous or leather or pleather, you can wipe that down, too. (Using wipes on upholstered seats could lead to a wet seat and spreading of germs rather than killing them.)If air travel is unavoidable, there are some steps you can take to protect yourself. Most important: Wash your hands often, and stop touching your face. If possible, choose a window seat. A study from Emory University found that during flu season, the safest place to sit on a plane is by a window, as people sitting in window seats had less contact with potentially sick people. Disinfect hard surfaces. When you get to your seat and your hands are clean, use disinfecting wipes to clean the hard surfaces at your seat like the head and arm rest, the seatbelt buckle, the remote, screen, seat back pocket and the tray table. If the seat is hard and nonporous or leather or pleather, you can wipe that down, too. (Using wipes on upholstered seats could lead to a wet seat and spreading of germs rather than killing them.)
Taking one’s temperature to look for signs of fever is not as easy as it sounds, as “normal” temperature numbers can vary, but generally, keep an eye out for a temperature of 100.5 degrees Fahrenheit or higher. If you don’t have a thermometer (they can be pricey these days), there are other ways to figure out if you have a fever, or are at risk of Covid-19 complications.Taking one’s temperature to look for signs of fever is not as easy as it sounds, as “normal” temperature numbers can vary, but generally, keep an eye out for a temperature of 100.5 degrees Fahrenheit or higher. If you don’t have a thermometer (they can be pricey these days), there are other ways to figure out if you have a fever, or are at risk of Covid-19 complications.
The C.D.C. has recommended that all Americans wear cloth masks if they go out in public. This is a shift in federal guidance reflecting new concerns that the coronavirus is being spread by infected people who have no symptoms. Until now, the C.D.C., like the W.H.O., has advised that ordinary people don’t need to wear masks unless they are sick and coughing. Part of the reason was to preserve medical-grade masks for health care workers who desperately need them at a time when they are in continuously short supply. Masks don’t replace hand washing and social distancing.The C.D.C. has recommended that all Americans wear cloth masks if they go out in public. This is a shift in federal guidance reflecting new concerns that the coronavirus is being spread by infected people who have no symptoms. Until now, the C.D.C., like the W.H.O., has advised that ordinary people don’t need to wear masks unless they are sick and coughing. Part of the reason was to preserve medical-grade masks for health care workers who desperately need them at a time when they are in continuously short supply. Masks don’t replace hand washing and social distancing.
If you’ve been exposed to the coronavirus or think you have, and have a fever or symptoms like a cough or difficulty breathing, call a doctor. They should give you advice on whether you should be tested, how to get tested, and how to seek medical treatment without potentially infecting or exposing others.If you’ve been exposed to the coronavirus or think you have, and have a fever or symptoms like a cough or difficulty breathing, call a doctor. They should give you advice on whether you should be tested, how to get tested, and how to seek medical treatment without potentially infecting or exposing others.
If you’re sick and you think you’ve been exposed to the new coronavirus, the C.D.C. recommends that you call your healthcare provider and explain your symptoms and fears. They will decide if you need to be tested. Keep in mind that there’s a chance — because of a lack of testing kits or because you’re asymptomatic, for instance — you won’t be able to get tested.If you’re sick and you think you’ve been exposed to the new coronavirus, the C.D.C. recommends that you call your healthcare provider and explain your symptoms and fears. They will decide if you need to be tested. Keep in mind that there’s a chance — because of a lack of testing kits or because you’re asymptomatic, for instance — you won’t be able to get tested.
You can even get started with new evaluations if you have concerns about your child’s learning or development. That process is harder with social distancing but remains possible. Much of educational and developmental evaluation relies on a comprehensive understanding of a child’s developmental history, and reports from parents and teachers. Seek out community resources by placing a call to early intervention services, your school district, or a local developmental specialist.You can even get started with new evaluations if you have concerns about your child’s learning or development. That process is harder with social distancing but remains possible. Much of educational and developmental evaluation relies on a comprehensive understanding of a child’s developmental history, and reports from parents and teachers. Seek out community resources by placing a call to early intervention services, your school district, or a local developmental specialist.
Supporting developmental and educational interventions always requires doing our best to make a strong plan, monitoring it over time and then allowing for change.Supporting developmental and educational interventions always requires doing our best to make a strong plan, monitoring it over time and then allowing for change.
Balancing common-sense, practical solutions now with a more complete plan once schools open is all any of us can expect of ourselves, or our children, in this uncertain time.Balancing common-sense, practical solutions now with a more complete plan once schools open is all any of us can expect of ourselves, or our children, in this uncertain time.
Following are some suggested strategies and resources — this is not meant to be an exhaustive list, and your child’s doctors and therapists will be able to offer advice specific to your child’s needs.Following are some suggested strategies and resources — this is not meant to be an exhaustive list, and your child’s doctors and therapists will be able to offer advice specific to your child’s needs.
Around education, children with A.D.H.D. tend to struggle specifically with organization, time management and planning. Anticipate that by supervising and pulling together what needs to get done at the start of the day and when possible checking in on your child’s organization periodically through the day.Around education, children with A.D.H.D. tend to struggle specifically with organization, time management and planning. Anticipate that by supervising and pulling together what needs to get done at the start of the day and when possible checking in on your child’s organization periodically through the day.
Behavioral change often relies on parent-created plans. Consistent use of praise, reward and limit setting is harder than it sounds — but allows for improvement around A.D.H.D. and decreases tensions at home. Professionals such as psychologists or developmental pediatricians are able to provide guidance through telemedicine as well.Behavioral change often relies on parent-created plans. Consistent use of praise, reward and limit setting is harder than it sounds — but allows for improvement around A.D.H.D. and decreases tensions at home. Professionals such as psychologists or developmental pediatricians are able to provide guidance through telemedicine as well.
A.D.H.D. frequently gets in the way of the healthy activities that improve A.D.H.D. symptoms in the first place. Strong sleep and exercise routines coupled with distinct screen time limits are a big help. Obviously most kids are using screen more than usual now, but still set boundaries.A.D.H.D. frequently gets in the way of the healthy activities that improve A.D.H.D. symptoms in the first place. Strong sleep and exercise routines coupled with distinct screen time limits are a big help. Obviously most kids are using screen more than usual now, but still set boundaries.
Medication is an option to consider as you would for any other medical condition.Medication is an option to consider as you would for any other medical condition.
Some useful resources include: CHADD.org, ADD.org, Healthychildren.org.Some useful resources include: CHADD.org, ADD.org, Healthychildren.org.
Behavioral therapy is the core treatment for autism, and quite hard to implement at home. Depending on a child’s individual skills, some online intervention may work. Parent-led intervention is also highly recommended if you are experiencing specific disruptive behaviors.Behavioral therapy is the core treatment for autism, and quite hard to implement at home. Depending on a child’s individual skills, some online intervention may work. Parent-led intervention is also highly recommended if you are experiencing specific disruptive behaviors.
Social skills can be worked on in a similar way, if you are able. Take a long-term view; you need not act as a therapist. But if you recognize a social skill your child may benefit for developing for the future, coordinate a plan with your child’s treatment team to use at home these next weeks.Social skills can be worked on in a similar way, if you are able. Take a long-term view; you need not act as a therapist. But if you recognize a social skill your child may benefit for developing for the future, coordinate a plan with your child’s treatment team to use at home these next weeks.
A second core intervention for autism is communication and language-based therapy. Your child may be able to do this online, along with occupational or even physical therapy.A second core intervention for autism is communication and language-based therapy. Your child may be able to do this online, along with occupational or even physical therapy.
Useful online resources include Autismspeaks.org, Autismsciencefoundation.org and Rethinkfirst.com.Useful online resources include Autismspeaks.org, Autismsciencefoundation.org and Rethinkfirst.com.
Teachers, therapist and tutors may provide 1:1 or small group instruction online in many areas. That instruction can be augmented with daily homework or practices, coordinated through close communication with service providers.Teachers, therapist and tutors may provide 1:1 or small group instruction online in many areas. That instruction can be augmented with daily homework or practices, coordinated through close communication with service providers.
Particularly for younger children, even a few minutes of fluency work daily may go a long way between now and the fall in emphasizing academic fundamentals.Particularly for younger children, even a few minutes of fluency work daily may go a long way between now and the fall in emphasizing academic fundamentals.
Useful resources include International Dyslexia Association, The Writing Revolution, and the American Speech Language Hearing Association.Useful resources include International Dyslexia Association, The Writing Revolution, and the American Speech Language Hearing Association.
Mark Bertin is a developmental pediatrician whose books include “Mindful Parenting for ADHD.”Mark Bertin is a developmental pediatrician whose books include “Mindful Parenting for ADHD.”