When Hope told me that she was pregnant I was thrilled. With parents on the autism spectrum, it just seems likely their child will be a special baby with at least autism tendancies. So my idea is to prepare for a special needs baby. No biggie, both sets of grandparents have been through it once.
On Easter my sister had just commented on how much Hope has had to overcome to be as functional as she is as an adult. I rememember realizing how tenacious she was trying to walk and the fact that today she has no problem with speech (but the bio-medical markers of Autism are still there).
I can't wait to see her as a mama bear, knowing what challenges she has already conquered in her own childhood.
It’s OK to feel scared
Often times as moms, we feel pressured to have all the answers—to anticipate our children’s needs and put them ahead of our own. When our doctor started talking about spectrum disorders, diagnoses, specialists, therapies, and developmental trajectories, I knew I had a lot to learn. It was overwhelming at times.
Knowing that I would have alll the nervousness of a first baby and have to simultaneously find my tribe for raising a special needs child seemed challenging even at my best moments. I didn’t have all the answers, and I wasn’t sure I had the bandwidth to parent each of her special needs as the come along as she grew. Each new day came and went as I researched and learned more and more. It seemed like everything thing in my life before this point was going to be benificial to me.
The unknown was scary, and there’s nothing you can do to predict the future. Having a child with needs beyond normal at the outset of motherhood is a challenge that you will wonder if your prepared for. Adding another person to your family brings up a lot of questions and maybe even some anxieties and fears. Though moms are expected to be superhuman, you’re still human. And it’s OK to feel scared.
I had the heads up that Hope was going to have special needs. But I was as prepared as I could be educationally and professionally. So that was two things that I had. The third thing I had was that I knew that my husband was going to be the sweetest dad ever. Truthfully, as I look back on it, that was my very bestand most important asset.
Don’t focus just on the negatives
My worry would spiral down fast when I thought about juggling a newborn while navigating the new-to-me world of disability. All my stress boiled down to one thing: I was afraid of not being enough.
Is there any mother out there who has never had a shred of self-doubt? Is there anyone who was sure that they were making the right decision every step of the way? There are many ways that we can tell ourselves we aren’t enough. When we lie down to sleep at night, most of us have a familiar voice in our minds telling us that there was something we could have done differently or better.
Trying to achieve perfection in motherhood is a never-ending cycle. But each day begins with a new sunrise and you will have everything that learned the day before, to lean on for that new day.
When Hope arrived, seeing the way her father adored her, watching those innocent little smiles, and marveling at her tiny little fingers and toes were all magical moments. I expected her to add to the overwhelm, but instead, she took my mind off of it because when you look at your baby, your mother’s love will strengthens, just as it does with every child.
Lean on others
They will be honored that you did. They are probably waiting for you to bring up the subject. The friends and family that adore you, will adore your baby. And they want you to rely on them and they will be more than glad to help in any way that you need. They might just have a copy of "Welcome to Holland"....
Welcome To Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.
You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.
The flight attendant comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And learn a whole new language. And you will meet a whole new group of fabulous people that you would never have met in Italy. It's just a different place.
It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. It must be grieved and let go.
Because if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Now when I look back on my journey in "Holland", I realise that I would have been bored with a typical child. I wouldn't trade one minute of raising Hope for any moment of parenting a typical baby girl. We had our rough days - but she filled our lives with joy beyond what anyone else experienced. The path became more difficult after I became a single parent in 2009.
But at every turn or hard situation, there was an answer as a reminder that Hope was right where she belonged.
Did I make mistakes? Yes I did. We will be prepared with a bigger tribe during adolescence with Hopes children. Tribe of one doesn't work. Every life has it's messy spots. But life can also be cleaned up and full of happiness too.
Remember, no matter how challenging it is, the sun will shine in the morning and you will have a fresh day.
This library is rich with resources that have been selected to support and inform the work of Parent Centers. The Library contains articles, fact sheets, training materials, webinars, and videos.
The library is organized and searchable by topic. Here’s how to search the library:
Ask yourself: What topic of interest brings you here today?
What letter of the alphabet would most likely be the first letter of your topic?
Select that letter from the alphabet above.
Pregnant Womens Intense Reaction to Music
🕑 2 minutes read
Posted May 22, 2014
Music affects humans on a fundamental level. It is more than just love or hate—music can change your blood pressure, up your heart rate, and even affect your temperature. Researchers from the Max Planck Institute for Human Cognitive and Brain Sciences in Leipzig conducted an experiment to determine how music affects pregnant women. They found that pregnant women experience music more intensely than non-pregnant women.
For the study, female volunteers listened to 10 or 30 second instrumental music sequences while the researchers monitored their physiological state. Then, the women listened to altered versions of music sequences that were made less pleasant through disordering or the use dissonance.
The pregnant women perceived pleasant music as more pleasant and unpleasant music as more unpleasant than the non-pregnant women did. The pregnant women’s blood pressure response to music was stronger as well. In response to forward-dissonant music, pregnant women had an immediate and significant blood pressure decrease. In response to backwards-dissonant music, they had higher blood pressure after 10 seconds, but lower blood pressure after 30 seconds, indicating that unpleasant music does not cause across-the-board blood pressure increases like many stressors do.
Why music elicits such an intense physiological response from pregnant women is unknown. The researchers originallyhypothesized that estrogen was the key factor, but after comparing the physiological reactions of pregnant women and non-pregnant women at various points in their contraceptive cycle, they concluded that estrogen was not the culprit.
Music may affect pregnant women as a way to condition her fetus to music. By 28 weeks, fetuses respond to familiar songs with changes in heart rate. By 35 weeks, fetuses change their movement patterns in response to familiar music.
“Every acoustic manipulation of music affects blood pressure in pregnant women far more intensely than in non-pregnant women,” said Tom Fritz of the Max Plank Institute. “The body’s response is just as dynamic as the music itself.”
This research is published in the journal Psychophysiology.
One of the first things I did when Hope said she pregnant was to notify Advanced Brain Technologies that their first second generational baby was on the way and we needed a pregancy program. TLP is the one thing that we were sure of wanting to use from the moment that we found out.
Hope was one of the first toddlers on The Listening Program. Now her baby would be the first of second generation of users for The Listening Program. Mandy told me that Alex wrote a special chapter in his book on this, when she was pregnant. That is Healing at the Speed of Sound that can be found on Amazon as well as some music with that was also made with that title. So check that out.
As we know from all recent neuro science research, the uterine experience is such a crucial one for both developing baby and mother, about to enter a new phase of her life. The first researcher of this was Dr. Alfred Tomatis who championed the idea of babys hearing sound in the womb and that it was amplified by the water of the amniotic sac. He was a french man that I highlighted in my masters thesis.
For Dr Tomatis, the mother’s voice and fetus’ early listening played a significant role in inviting the fetus to communicate for early language development and a desire to learn. The perception of the mother’s voice is the very first bond of communication with the world. The quality of this bond will deeply influence the child's attitude toward life.
Filtered Sound Therapy for Mothers-To-Be
The baby in utero is very sensitive to the stress levels of its mother. So if a mother is working very hard or has emotional stresses placed on her during her pregnancy, her baby is indirectly exposed to what she is feeling and will sense it's mother's distress. Some researches believe that this child would then be predisposed to sleeping difficulties, as well as eating and settling problems. Your most important task as a mother-to-be is to try and remain calm, peaceful and happy.
Understanding the special link and bond mother-baby, the Listening Program be used to given to help expectant mothers during pregnancy. The objective is to relax and work on the anxiety, the energy of the mother and to stimulate the emotional link with the baby.
The Listening Program can assist pregnant mothers her in regaining her serenity. By using their filtered music by Mozart, the program helps to stimulate the vestibular system, thereby helping the mother to cope better with stress. But the benefits don't end here.
The baby's ears are developed at 20 weeks so she/he too can benefit from the soothing sound of Mozart. Music helps to establish the development of the neural pathways and it stimulates the growth of myelin, the sheath which covers nerves in the body, thereby ensuring normal development of the baby's neural network.
The mother wears a really good headset during her program. This enables the baby to hear the music through the vibrations in the mother's body.
The quality of the mother's voice is also very important. The program helps to enrich mom's voice, so that she can transmit a much calmer, richer voice to her baby. So reading to your unborn baby can be productive as well..
The objective of using the Listening Program is to relax and reduce the mother’s anxiety, improve her energy levels and stimulate her emotional bond with the baby.
More than 1000 pregnant women took part in a research study in France at Vesoul and Foch Hospitals, outside Paris, where the impact of the program was compared to a control group. In the programs group, it demonstrated a maternal reduction in anxiety, greater awareness of the baby, improved bonding with baby, resulting in reduced labor time and delivering babies that were calmer and more content.
This demonstrates that the The Listening Program benefits the health of the mothers, as well as. the immediate family and it has a positive impact on the health and well-being of their new-borns. Further more the programs “babies” are born quite calm and alert, open to the world around them, ready to interact and communicate even before they can talk.
In mid-April, I was invited to speak to some parents of kids with special needs at McLean Bible Church after attending their wonderful Accessibility Summit (now Access Ministry). The topic of the talk was how to reduce special needs parenting stress. Since special needs parents live with extra stress, I thought you might appreciate these tips, too.
11 Ways to Reduce Special Needs Parenting Stress
Admit that the stress is real. Do not try to be tough and deny the stress. Conversely, don’t wallow in the stress and take on the role of the martyr. Instead, admit you are living with stress and resolve to do something about it.
Acknowledge that one source of your stress is grief. A parent of children with special needs lives with the loss of the children. This doesn’t lessen their love for the child. It’s just the way it is. Special needs parenting grief is real and ongoing. It is stirred every time your child misses an age-appropriate milestone or rite of passage. Therefore, give yourself permission and time to grieve.
Deal with the guilt that stalks parents of kids with special needs. Many parents blame themselves for their child’s condition. Or they think they’re bad parents. Rather than wallow in guilt, determine whether your guilt is founded in truth or lies by following these 5 steps. • Ask God to reveal the truth about your sense of guilt. • See what His Word says about the matter. • Look for evidence of disobedience in your actions. • Look for evidence of a misconception in your understanding of Scripture. • Seek the counsel of someone you trust and talk about your feelings.
Ask for practical help. Have a list ready when people ask what they can do. Items on the list could include the following: bring a meal, pick up the kids, housecleaning, grocery shopping, pet care, lawn care, laundry, or picking up the mail.
Let go of the exclusive caregiving role. While it may be true that no one can care for your child as well as you can, with education and training other people can care for your child. After all, the day may come when you won’t be able to care for your child. How reassuring to know someone is ready for duty in your place. Besides, your child needs a wide circle of supportive friends, not just you.
Develop a support network. Build a circle of prayer partners and send them monthly updates. Find groups online where you can get and offer advice, talk to people who know exactly what you’re talking about. Make sure the groups you join are positive and not negative in tone.
Build margins into your day. For special needs parents, this means factoring a certain amount of time for chaos. So schedule quiet time and make it happen.
Take care of your body. Get creative about this one and make a commitment to get enough sleep, eat well, exercise, and get outside in the fresh air when you can.
Take advantage of respite. When is the right time to schedule respite? As soon as you begin to think you need a break. If you wait too long to find relief, you will be beyond the point of burnout which means it will take you even longer to return to your baseline level of functioning. Until you get to that point, everyone around you may suffer.
Find ways to relax your body and rejuvenate your spirit. We tend to place a massage at the top of this list, but there are several simple, inexpensive things you can implement. Get rid of caffeine. Practice intentional relaxation by listening to music while sipping a cup of tea, listening to an audiobook, watching a funny movie, or reading a book. Create a quiet, peaceful corner in your house where you can go to be alone. Putting a lock on the bathroom door and taking a bath counts. Use God’s word and prayer to rejuvenate your spirit. These prayers for the anxious based on the Psalmsmay help you. Different Dream Parenting also has several prayer calendars based on Scripture.
Seek professional help. If you’ve tried to implement the ideas above and are still struggling, you should seek professional help. If your child is receiving mental health treatment, ask the therapist to include you in some of the sessions or to set up a separate appointment for you. If that won’t work, ask your child’s therapist, trusted friends, or your pastor for recommendations.
Parenting isn’t always easy. Although it’s often amazing and rewarding to watch your children grow up, and to help them learn to be independent, it can also be really hard work. Here are our tips for looking after your child while also looking after yourself.
If you think your child is unhappy or you are worried about their behaviour, it’s easy to be hard on yourself and think you aren’t doing a good job. But you aren't alone.
Below are our tips are for any parent who is worried about their child, or their own parenting skills.
You and your child
Make sure they know you love them and are proud of them. Even when things are busy or stressful, and it feels like you are in survival mode, a word or a hug can reassure them a huge amount. Praise them for what they do well, and encourage them to try new things.
Be honest about your feelings - you don’t have to be perfect. We all get things wrong and shout or say unkind things from time to time. If this happens, say sorry to your child afterwards and explain why it happened, They will learn from you that it’s okay to make mistakes and that it doesn’t make you a bad person.
Be clear about what is and isn’t acceptable - and tell them why. Children need to know what is okay and what isn’t, and what will happen if they cross the line. Follow through on what you say as otherwise they may get confused or stop respecting the boundaries.
Own your own role - you are the parent, so don’t be afraid to take tough decisions. If your child sees you are scared of their reaction and always give in to them, it can make them feel very powerful, which can be frightening. Children need to know that you are there to keep them safe.
Ask for help if you need itFriends and family can often help - don’t be afraid to ask them to have your child for a bit if you need some time out to sort out your own stuff. You can repay them when things get better for you!
Don't struggle aloneIf things are getting you down, it’s important to recognise this. Talk to someone you trust and see what they think. Many people go on struggling with very difficult situations because they feel they should be able to cope and don’t deserve any help.
Take time for yourselfIt’s easy to say take some time for yourself but in reality this may not feel possible. You might be too busy, exhausted or hard up for exercise or hobbies. But even a night in with a friend, a DVD box set or your favourite dinner can help.
Don't blame yourselfIf your child is having problems, don’t be too hard on yourself or blame yourself. Although it can be upsetting and worrying if your child is having a bad time, and it makes your relationship with them feel more stressful, you are not a bad parent. Children often take it out on those closest to them, so you might be feeling the effect of their very powerful emotions.
You're doing everything you canIf you had a difficult time growing up yourself, or have had emotional problems or mental health problems, it can be very worrying to think that the same thing might happen to your child. But the love and care you show them and the fact that you are trying to help will protect against this. Getting help for them and perhaps for yourself too can give them the best chance of feeling better.
Speak to your GP if you're struggling to copeGo to your GP if things are really getting on top of you. Asking for some support from your doctor or a referral to a counselling service is a sign of strength. You can’t help your child if you are not being supported yourself. Some people worry their parenting will be judged and their children will be taken away if they admit they are struggling to cope. This should only happen if a child is being abused or neglected and the role of professionals is to support you to look after your child as well as you can.
Setting up a parent support group
As a parent, it's easy to feel alone or isolated when trying to support your child’s needs.
To help feel less alone, many parents find it reassuring to meet other parents experiencing similar concerns or worries, and share their experiences with each other.
If you're interested in setting up a parent support group in your local community, we have tips and advice that can help you get started.
Navigating pregnancy and childbirth is exciting and wonderful. But, if your baby is diagnosed with a congenital disease in-utero, the experience can quickly evolve into one defined by fear and uncertainty about how to find the best care for your unborn child and for yourself. Usually, nothing in life has prepared us for this journey. To help, we’ve called upon the experts at The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children’s Hospital to help you understand what a fetal complication or diagnosis means for your family and to demystify the path to the best possible care.
With more than 40 years of experience, The Chicago Institute for Fetal Health (CIFH) is a regional leader in the research and care of pregnant patients with fetal complications. As one of only a few comprehensive fetal centers in the country, the Institute offers prenatal counseling and care, as well as corrective fetal intervention when needed. Their goal? To empower you through an individualized process of diagnosis, counseling and care by a team of specialists, assembled specifically for your situation, regardless of your child’s condition or where you will be delivering. If you’re looking for all things surrounding fetal health conditions, look no further… the CIFH has you covered.
1. What does a fetal complication or diagnosis mean for me, my child, and the rest of my pregnancy?
When an expectant mother first learns that her unborn baby has been diagnosed with a medical condition, feelings of sadness, worry, anger, and guilt are common. Very quickly, these emotions transition to questions of how this disease will affect my baby’s life and if anything can be done to make it better. That’s where the CIFH comes in.
The CIFH specializes in the comprehensive counseling, coordination, and treatment that will be needed. Their philosophy revolves around you as the patient and the sensitivity, support and expertise that is needed from the beginning. They noted that most birth conditions are not preventable and often encourage families to let go of the guilt surrounding the diagnosis. Instead, they would like you to channel your energy into learning about the baby’s condition and the treatments that are available.
The Institute is a comfortable and private environment, but is equipped with the latest technology needed for the diagnosis and care of essentially any fetal condition. You will feel surrounded by knowledgeable and caring experts who will partner with you from the first encounter, through the remainder of your pregnancy and beyond. Every patient’s needs are different, and the goal is to work with you to find the best solution for you. Importantly no patient is ever turned away due to an inability to pay for needed care.
They also noted that not all fetal anomalies require treatment. Per the experts at CIFH, some conditions may resolve on their own before birth. Others may require specialized care during delivery or soon after the baby is born. And for the more extreme circumstances, the experts acknowledged that fetal surgery may be an option to treat the diagnosis.
2. When are abnormalities typically detected during pregnancy?
Within the fifth month of pregnancy (at 20 weeks of gestation), women typically have an ultrasound that serves several purposes. Per the experts at the CIFH, it is at this point that the doctor looks for abnormalities in blood flow, organ, and bone development.
3. If there are any sort of abnormalities detected by my OB during a routine appointment, what are my next steps?
After the diagnosis is made by your OB or Maternal-Fetal Medicine Specialist, the next step is to find a comprehensive fetal care center like the CIFH, that can provide better insight into the severity of the diagnosis and manage care from pregnancy to birth and beyond. Whether you need additional diagnostic studies, more counseling or specialized care like fetal surgery or complex newborn surgery, the CIFH is available to help you navigate what to expect moving forward. Communication and coordination will continue with your obstetrician and maternal-fetal medicine physicians to ensure all the key people are prepared for the delivery and expected care after the baby is born.
4. What is a comprehensive fetal care center and why is a multidisciplinary team important?
In recent years, a handful of comprehensive fetal care centers like the CIFH have emerged nationally as regional centers to integrate multidisciplinary care of the mother and baby in a one-stop-shop to provide the best possible outcomes for families dealing with a high-risk pregnancy related to a prenatal diagnosis. Multidisciplinary care teams are made up of specialists from a variety of medical departments who collaborate and provide unique insight into diagnoses and care plans, individualized for each patient. At the CIFH, key players on the multidisciplinary team include specialists from:
Pediatric Heart Surgery
Pediatric Plastic Surgery
Fetal Therapy Nurses
Social Workers with Expertise in Prenatal Care
Specialists from nearly 25 medical disciplines converge at the CIFH to empower expectant mothers and their families with the knowledge and teamwork that is needed for the best possible outcome. This method provides high-quality, well-rounded care to patients and their families including fetal surgery if needed. With each team member focused on a different aspect of the patient’s health, areas of need are more likely to be identified and better managed.
5. What does an initial appointment with a fetal health team look like? What happens during the consultation?
Before the first appointment
Prior to your arrival, the team at the CIFH will coordinate with your referring physician to obtain and review your medical records. A Fetal Nurse Coordinator will speak with you by phone to better understand your specific needs and provide you with an overview of what to expect at your visit. Next, your case will be reviewed by the Institute’s Director and members of the care team to facilitate continuity of care and ensure that the necessary specialties are present for your consultation. “Our goal is to make the day as easy and as helpful as possible for you and your family,” noted Dr. Amir Alhajjat, who is the Fetal Surgery Co-Director for the Institute. “When you arrive, one of our team members will meet you and escort you to your appointments throughout the day.”
The imaging done at the CIFH will go far beyond what was done in your Obstetrician’s or MFM’s office and will greatly assist in the diagnosis and counseling process. Some methods of imaging that you might encounter include:
High-resolution ultrasound: using a wide array of specialized imaging techniques and measurements, the team can better understand the anatomy and function of the baby’s normal or affected organ systems
Fetal MRI: using specialized techniques, the doctors will see details of the inner body that are hidden from ultrasound and use this information to help answer questions about the fetal anatomic structure before birth
Fetal echocardiogram: a specialized ultrasound examination of the unborn baby’s heart
Consultation with a team of specialists—putting it all together
The experts at the CIFH noted that each consultation is individualized based on the needs of the mother, the baby and hospital where the delivery is planned. During a typical consultation, their multidisciplinary care teams will discuss:
The diagnosis and potential cause.
The impact on the health of the baby and the mother.
The best prenatal, delivery and newborn treatment.
Fetal treatment and surgery if indicated.
Expectations for the remainder of the pregnancy.
Preparing for delivery.
What to expect when the baby is born.
Medical care after birth.
The expected long-term outcome and any potential ongoing needs.
After a consult, each family will receive a folder containing information about the baby’s condition, Lurie Children’s and contact information for the physicians and team members who met with your family.
If the experts at CIFH anticipate that your baby will need specialized care in either the neonatal intensive care unit (NICU) or the Regenstein Cardiac Care Unit (CCU), a member of their team will provide a tour for expectant parents and family members. This allows you and your family to see the baby’s room, meet with some of the bedside nurses and become familiar with the care and amenities of these specialized units.
If you’re thinking about becoming pregnant or are currently expecting, it’s important to understand the risk for birth defects. Birth defects cannot always be prevented, but there are many aspects of prenatal care that can protect your unborn baby. If your baby does have a birth defect or fetal condition, treatments are now available that have revolutionized an affected baby’s ability to survive and thrive after birth.
Learn more about prevention, diagnosis and available treatments for birth defects from Ahmet Baschat, M.D., director of the Johns Hopkins Center for Fetal Therapy, part of the Department of Gynecology and Obstetrics.
Can birth defects be prevented?
Though not all birth defects can be avoided, prenatal care and awareness of past or current conditions can help with prevention.
Prenatal care. Taking a daily prenatal vitamin that includes at least 400 micrograms of folic acid can help prevent a variety of birth defects. You should be taking prenatal vitamins if you’re of reproductive age, when you’re actively trying to conceive and/or as soon as you find out you are pregnant. In addition to taking your prenatal vitamin, avoiding alcohol, tobacco and illegal drugs can significantly help prevent birth defects and pregnancy complications.
Awareness of past or current conditions. If you previously had a pregnancy with a birth defect, it’s important to find out the most likely causes because it can help your physician plan preventive measures for your next pregnancy. For example, spina bifida is caused by a deficiency in folate, so if your previous pregnancy had spina bifida, you can take a high dose of folate to help prevent future spina bifida diagnoses.
Are all birth defects discovered before a baby is born?
It’s not always possible to detect all birth defects in utero. However, high-resolution ultrasounds done by certified prenatal ultrasound groups make it possible to diagnose defects that will cause a significant impact before birth.
Baschat says: “At the Center for Fetal Therapy, we recommend that pregnant women have the first-trimester nuchal translucency scan between 11 and 14 weeks and the anatomy scan between 18 and 20 weeks. These two ultrasounds provide us with the best opportunity for detecting birth defects.”
In recent years, some pregnant women have turned down the first-trimester ultrasound because a maternal screening blood test now exists for Down syndrome. The ultrasound is still strongly recommended, though, because there are many other serious birth defects that can be detected this early in pregnancy.
A routine prenatal ultrasound in the second trimester can identify early signs of Autism Spectrum Disorder (ASD), a new study by Ben-Gurion University of the Negev and Soroka Medical Center has found
The researchers examined data from hundreds of prenatal ultrasound scans from the fetal anatomy survey conducted during mid-gestation. They found anomalies in the heart, kidneys, and head in 30% of fetuses who later developed ASD, a three times higher rate than was found in typically developing fetuses from the general population and twice as high as their typically developing siblings.
Anomalies were detected more often in girls than in boys and the severity of the anomalies was also linked to the subsequent severity of ASD.
This study and others will be discussed at the Israeli Meeting for Autism Research to be held February 15-16 at BGU.
"Doctors can use these signs, discernable during a routine ultrasound, to evaluate the probability of the child being born with ASD," says Prof. Menashe, "Previous studies have shown that children born with congenital diseases, primarily those involving the heart and kidneys, had a higher chance of developing ASD. Our findings suggest that certain types of ASD that involve other organ anomalies, begin and can be detected in utero."
Is it possible to treat birth defects while a baby is in utero?
Absolutely. While there are many different types of birth defects, it’s extremely important to try to correct those that damage vital organs before the baby is born. The Center for Fetal Therapy specializes in treating several of these defects in utero, including:
Lower urinary tract obstruction. This occurs when the flow of urine is blocked from exiting the fetus’ body, leading to permanent kidney damage. Relieving this obstruction before birth protects the kidneys.
Fetal treatments also exist for conditions that make the baby unhealthy, even if they are not considered to be birth defects. For example, if a fetus has an irregular heartbeat, you can give the mother medication that will cross the placenta and treat the fetus.
How successful are in utero treatments for fetal conditions?
By treating fetal conditions in utero rather than waiting until after birth, fetuses are given significantly better chances of survival and a reduced need for major surgery after birth. For example, with a condition like twin-to-twin transfusion syndrome, in which identical twins develop a blood volume imbalance, both babies could die without any intervention. By performing laser surgery in utero, there is approximately a 95 percent chance that at least one baby will survive.
Explains Baschat, “Success rates vary depending on the condition, available treatments and the individual patient, but overall, where fetal interventions are available, we see a much higher rate of survival for affected fetuses.”
If a baby has fetal surgery, will he/she need different care after birth?
This will depend on the individual condition and type of surgery performed. For all fetal surgeries, your baby needs to be delivered at a hospital where pediatric subspecialties are in-house so the baby’s care can be managed after birth. Baschat says: “Many of the treatments we perform require patients to deliver at the highest-level multispecialty hospital, like The Johns Hopkins Hospital. This way, all prenatal and postnatal care is available to you in one location.”
If you have one child affected by a birth defect, will all of your future children have that same condition?
All future children will not definitively be affected by the same birth defect, but it will depend on what the cause was. If the birth defect was caused by a genetic mutation, there may be a higher likelihood of recurrence, but if you seek care from a specialized center, maternal-fetal medicine specialists and genetic counselors can work with you to assess future risk.
The risk of some conditions can be determined before you become pregnant through genetic testing. If that doesn’t exist for the condition in question, maternal-fetal medicine specialists and genetic counselors can genetically test your fetus during pregnancy to see if she or he exhibits the mutation that affected your previous child.
Are there communities in which you can speak with other families who have had children affected by birth defects?
There are many forums online, whether on the web or social media platforms, in which parents come together. “At our center, we reach out to previous patients to see if they are interested in communicating with new patients affected by the same condition,” Baschat explains. “They can empathize about the specific birth defect, but they can also provide guidance and advice about the experience of working with our center throughout the pregnancy and after the baby is born.”
In the future, what advances will take place in treating disease before birth?
Through prenatal diagnosis and understanding fetal disease better, physicians are learning more about what harms the fetus and what may be of benefit before birth. Additionally, new uses for minimally invasive surgical equipment are regularly being discovered.
There are also stem cell therapies, genomic medicine and a whole host of related treatments that are currently used for children and adults. One day, these may also apply to the fetus. “While it’s hard to predict the future, we’re currently doing things we couldn’t have foreseen 10 years ago, so we’re very hopeful for continued advancements in fetal care,” says Baschat.
10 WAYS TO CREATE PEACE IN YOUR WORLD
There is a need for peace in our lives
We have become overstressed and overscheduled doers. Most of us have forgotten how to relax and feel present in our lives. We’re always stretching to reach for the next thing we see along our path. There are simple ways to bring more peace to your life.
We are constantly under a barrage of external aggravations and noise washing over us. Our stress levels are off the charts. Our bodies are in constant fight or flight mode. The stress hormone cortisol is making us strung out and irritable. Some stress is good in our lives. It makes hit our deadlines, decide what we want (or don’t want) in our lives, and gives us an edge in the business world. However, maybe it’s time to take a good look at adding peace to our private worlds.
Bringing Some Peace to Your Life
These are the ten key things that I’ve put into practice in my life since 2012. I can’t say that I don’t have any stress but these have made my life happy and productive. I have energy and time for quality experiences in my life. They’ve made me slow down and realize all the good things that are there for me to enjoy.
1. Take Time for Yourself
Someone once told me to “take care of you first and everything will follow”. Women, more so than men, tend to put everyone and everything before themselves. I was no different. Once I started taking ‘me’ time every day I became happier and less resentful.
I established some boundaries with friends and family and to my surprise, they understood. They also appreciated a happier and more well-adjusted me.
Develop rituals that soothe you. Try heading to bed an hour earlier than normal and having a soak in the tub, doing your nails, or prop yourself up in bed and read. Do something nice for yourself every single day.
2. Meditate Every Day
Meditate, but keep this separate from your ‘me’ time. Sometimes the two will overlap because of time restraints, but try to keep this time separate.
I tend to use guided meditations after my ‘me’ time and right before I go to sleep. On the weekends I take a little extra time during the day.
Keep it simple. Meditation doesn’t mean you have to twist yourself into a pretzel and try to make your mind blank. Guided meditations are a great way to focus your attention. There are apps for that. Headspace is a great free app for any device. Libraries are carrying audible books with guided meditations. One of my favorites is Wayne Dyer’s Meditations for Manifesting.
Repeating a simple mantra or affirmation is another great way to calm your mind.
Make sure you have a quiet space to get comfortable listening to your mind.
3. Practice Appreciation
This is also a very simple thing to add to your life. You can do it anytime Just say the words “I appreciate … ” and follow it what you truly do appreciate. Appreciate the sun for shining, the birds for singing, your mate for being there with you, your house for keeping you warm and dry, or anything that crosses your path. Appreciate all the great things in your life and you will attract more of what you appreciate.
4. Stop Worrying and Live in the Present
“Worrying does not empty tomorrow of its troubles. It empties today of its strength” – Corrie Ten Boom
A co-worker at my day job, gave me a bookmark with this quote on it. It perfectly reflects what living in the present does for us. Most of what we worry about will NEVER come true. Instead, it just makes us inattentive to all the goodness we have now. Worrying about events that happened in the past are just drains on our time in the present. They’re PAST, done with, over, worrying about them now is useless.
Focus on the present moment, it’s all we have, so spend it wisely.
5. Limit Information Overwhelm
Limiting the amount of information that comes at us is difficult, I get that. But there are ways to get rid of a lot of it.
Unsubscribe from email lists that send you emails that you never open. Limit magazine subscriptions to just those few that you love. Reduce the amount of local, national, world news that you take into a few times a week whether it’s on TV, radio, or online. Be aware of how much time you spend on the internet and make an effort to cut down on going down rabbit holes chasing information that has little relevance to our lives.
We’re so tuned in and turned on to our electronics that they’ve made life overwhelming. Try taking one day a week and not connecting with any of your electronic gear.
Sanctuaries are large or small. They can encompass a whole room, a small corner or even a space outside. Make it your own, gather your favorite things there and let your family know that this is your space for quiet and peace.
7. Spend Time In Nature
Find a lovely place to walk, hop on your bike and ride, or just spend time in your yard. Reconnecting with nature can really create a lasting calm. Take your shoes off and walk through your grass barefoot. Go to a beach and wiggle your toes in the sand. Get away to the mountains and breathe fresh air. Reconnect with mother Earth. Listen to what she’s saying. Open up your heart and mind and find peacefulness and calm.
”‘Be gentle with yourself. Give yourself room to breathe. You deserve it.’
8. Learn to Say No
There are multiple distractions all vying for our time and attention. A lot of us grew up with the notion that you don’t ever want to let people down by telling them no. I don’t know about you, but I always said yes, I was a people pleaser. So I said yes to things that ate away my time, and things that weren’t authentic to me or my beliefs, and for too many years I was overscheduled and overstressed because of this. One little word made my life more calm and happy because I was being true to myself and not stretching myself so thin. No is an empowering word.
9. Simplify Your Life
My husband and I have started an ongoing project. We are cleaning out all the nooks and crannies in our house and “unstuffing”. We’re doing this exercise to prepare for retirement from our day jobs.
Just as there is information overwhelm, there is also “stuff” overwhelm. He and I joined households in 2009. In 2014 my older brother came to live with us because of health problems. In essence, we joined three households with years of accumulated stuff and life started feeling cramped. The sheer amount of stuff shoved into closets and the basement was really causing some friction.
With each room or area that we declutter and clean up, the house seems more welcoming and peaceful. There is also a sense of accomplishment that is soothing.
10. Be Gentle With Yourself
I’m ending with the most important lesson that I learned. Be gentle with yourself. Give yourself room to breathe. You deserve it.
Peace in an Ever-Changing World
In the end, we are only human with all our human faults and strengths. Underneath we’re all just trying to make sense out of the world around us. Peace and happiness are our birthrights. Staying calm during the storm is our way to get there.
The Unplanned Journey
When You Learn That Your Child Has a Disability
by Carole Brown, Samara Goodman, and Lisa KüpperLinks updated, March 2020
The birth of a child with a disability, or the discovery that a child has a disability, can have profound effects on the family. In “You are Not Alone,” Patricia McGill Smith offers the insights that she and others have gained through their own experience of having a child with a disability. In this article, we will provide additional information to support the life cycle, health, and well-being of the family when a member has a disability.
It is with a great deal of humility that we are even attempting to describe what the future may hold for you and your family. On the one hand, we want you to be as prepared as possible so you can negotiate the challenges that may await your family. On the other hand, we recognize that individual variation and differences are the rule when a child has a disability. Researchers often base their findings on group data—what happens to the majority of people in a circumstance. However, what might be “true” in a research sense may not be at all true for your family. Therefore, while we hope this article will guide you to sources that are helpful, take from our discussion only what you need.
Growth is endless and our lives change and change us beyond anticipation. I do not forget the pain—it aches in a particular way when I look at Jessy’s friends (her paid companions), some of them just her age, and allow myself for a moment to think of all she cannot be. But we cannot sift experience and take only the part that does not hurt us. (1)
No parent wants his or her child to be sick, disabled, or harmed in any way. It is not an experience anyone expects to have; rather, it is a journey that is unplanned. The terrain families must travel is often rough in places. And yet, the majority of families are able to find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges that may accompany their child’s illness or disability.
Many parents have described the progression—and pendulum—of feelings they experienced upon learning that their child has an illness or a disability. Patty McGill Smith touched upon many of these emotions in her article—shock, denial, grief, guilt, anger, confusion. The type of emotions parents experience, as intense and overwhelming as they may be, are also normal and acceptable. Stability does return, both to the individual and to the family. Parents begin to search for needed information. Many report feelings of personal growth that are often, in retrospect, astounding to them. One mother, reflecting on life after the birth of a child with spina bifida and other disabilities, says:
I have learned, and grown, more since Dylan’s birth than any other time in my life. You learn patience, and you get to witness miracles that you otherwise would have been too busy to have noticed…You learn acceptance, you realize you have been wrong to judge, and you learn that there is a thing called unconditional love. (2)
Taken together, the many suggestions and insights offered by parents who have lived for years with the experience of disability in the family can provide parents who are new to the experience with much guidance and support. The remainder of this article will outline many of the ways that parents have helped themselves and those they love adjust to living with and caring for a child with special needs.
One of the first things you can do that may prove enormously helpful, now and in the future, is to collect information—information about your child’s disability, about the services that are available, and about the specific things you can do to help your child develop to the fullest extent possible. Collecting and using the information available on disability issues is a critical part of being a parent of a child with special needs. Fortunately, there is a great deal of information available on many disabilities and many disability issues.
Much of the information that will be helpful to you is in the hands, heads, and hearts of other parents like yourself. For this reason, it is worthwhile to join a parent’s group. Some groups are organized around one particular disability (e.g., cerebral palsy, Tourette syndrome, Down syndrome), while other groups draw together parents who, irrespective of the disabilities of their children, have similar concerns, such as daycare, transportation, coping, or finding out about and supporting special education in their community. Within each of these groups, information, emotional and practical support, and common concerns can be shared. The power of this mutual sharing to combat feelings of isolation, confusion, and stress is a consistent thread running throughout the literature written by and for parents.
Our children had Down syndrome, seizure disorder, holes in the heart, premature birth, deafness, and cerebral palsy. I hated the repeat surgeries, but one mother wished her child had a condition that doctors could fix. I struggled with how to respond to strangers, but another mother wanted her child’s condition to be visibly obvious so strangers would understand why she wasn’t doing what other six-month-old babies did..It was powerful to simply congregate with other mothers whose babies had special needs, hear the variation in stories, see the experience refracted through the crystal of multiple identities. (3)
Parent groups aren’t only for mothers, though. Don Meyer writes of running “fathers-only” workshops where fathers came together to exchange insights and trade war stories.
Often the din of the conversation was such that we were asked “to keep it down” by presenters in neighboring rooms. Fathers became so involved in talking to their peers that we sometimes needed to shoo them out of the room at the end of the meetings… All this from fathers who “don’t say anything.” Clearly these men have much to say, and much to offer one another. (4)
There are many ways to identify a parent group in your area. A good starting place is your state’s Parent Training and Information Center, the PTI. Not only can the PTI help you understand your child’s rights, the services available in the community, and how to advocate for your child, this valuable resource can also put you in touch with parent groups locally and in the state.
You may also find it helpful to read many of the excellent resources—books, articles, Web sites—that are available on disability issues. Some are quoted in this publication. Others are listed on disability fact sheets. Worthwhile suggestions about what to read can come as well from talking to a local librarian, your child’s teacher, or other involved professional; contacting a national, state, or local disability group; or talking to other parents of children with disabilities.
The search for available services is a challenge for families and one that continues as the child’s needs change. Most of these services are made available because of legislation at the federal and state levels. For a quick read on the educational rights of children and youth with disabilities, try: Questions Often Asked by Parents about Special Education Services.
Typically, there are many services available within communities, districts, and states to assist you in meeting the needs of your child with disabilities and your family. Families with a young child with disabilities (birth through the third birthday) should access early intervention services, which are designed to identify and treat developmental problems as early as possible. For school-aged children with disabilities, special education and related services can be important factors in addressing a child’s educational needs.
Early intervention services. Early intervention services are designed to address the needs of infants and toddlers with disabilities as early as possible. These services can range from feeding support from a nutritionist in a hospital to developing a complete physical therapy program for an infant with cerebral palsy. However, these services are not just for the child with special needs. When framing the law describing early intervention services, Congress recognized that families are central in a young child’s life. Therefore, the family’s priorities, concerns, and resources are a major consideration when planning services for infants and toddlers with disabilities. The plan that is developed through this process is called an Individualized Family Service Plan (IFSP).
Parents, too, can benefit from early intervention services. As full members of the team developing the program for their child, they can learn skills that may be useful for a long time—skills in helping their child learn and develop, as well as skills in decision-making, planning, being of support to others, and influencing policy-making in their community.
The services themselves are offered through a public or private agency and are provided in different settings, such as your home, a clinic, a neighborhood daycare center or Head Start program, a hospital, or the local health department. Initial evaluation and assessment of your child will be provided free of charge. Services may also be provided at no cost, although this may vary from state to state. Some states charge a “sliding-scale” fee for services.
Special education and related services. Through the mandates of two federal laws—the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973—each eligible child with special needs is guaranteed a free appropriate public education designed to address his or her unique needs. This education is planned by a team, including the parents of the child.
Thus, as parents, you are key participants in the team that determines what type of special education your child will receive. Together, the members of your child’s team develop an Individualized Education Program (IEP), which states in writing the educational program that is planned for your son or daughter.
There are many books and websites that are particularly useful if you are seeking to understand and access special education services. This includes the material immediately available here at the Center for Parent Information and Resources to explain the special education process. We’ve listed a few webpages you might like to read to learn more.
Many factors can influence the well-being of a family. One factor is certainly the emotional and physical health of the parents. You, as parents, are definitely the heart of the family. You are the ones who deal with the issues associated with your child’s disability—doctors, child care providers, family members, your child’s school, the professionals who work with your child. You also maintain the household — working to pay the bills, shopping, cooking, cleaning up, taking care of other children. Is it any wonder that many parents of children with disabilities report times of feeling overwhelmed?
Therefore, it is very important for you, as parents, to take some time to care for yourselves as individuals: getting enough sleep, eating regular meals, taking a short walk, and doing the things that you really enjoy, even if you can only squeeze them in occasionally. As one mother relates:
I would sometimes retreat to my “tower” and pretend that I had no responsibilities other than to amuse myself with a good book or a soothing tape. The respite usually didn’t last more than a half hour, and it was never enough, but it helped me break the “martyr” pattern of thinking I was required to live and breathe only for my children.
In those brief moments of quiet reflection I could renew my sense of self and remember that I was important, too; that I was Kate, a person, with lots of abilities and interests that did not all coincide with my role as Mommy. I came to realize that a little selfishness is not a bad thing. If I could enjoy myself more, I could enjoy my children more. (5)
Many families will be single-parent families, but for those who are not, the relationship between the parents is a factor that can influence the family’s well-being. When the parents’ relationship is a strong and supportive one, it enriches family life for all members. Conversely, when there are problems in the relationship, the tension affects the rest of the family as well. This is stating what most of us already know—that marriages undergo change with the birth of a child, any child. But when a child in the family has special needs, this change may be even more profound. As Kelly Harland puts it, “[H]ow unexpectedly it all unfolds. One moment, you and your lover are singing along in bad Italian with Venetians in a crowded bar…red wine pouring out of nowhere. And the next minute, the two of you are filling out disability forms for your tiny son.” (6)
Much of the literature written by parents discusses ways for parents to protect their relationship. One point emerges again and again, and that is the importance of making time for each other: meeting for lunch, getting away for a few hours together, sharing an activity. Talking to each other and really listening are also important—and conversations do not always have to revolve around the children in the family. Finding other topics to discuss can do much to revitalize parents and preserve intimacy between them. It is also important to recognize that there are times when one partner needs to have space. As one parent puts it, “Realize that you do not deal with this stress in the same way your spouse does. Let your spouse deal with it in their own way, and try to come to an understanding of your differences.” (7) Another parent shares, “At these lonely moments, the greatest gift was simply to let the other be.” (8)
Sharing the duties of providing care is also necessary, although couples report that they often have to work hard at communicating in order to achieve the “we-ness” that goes behind teamwork.
Many parents have found it is necessary and helpful to seek joint counseling. Through this process, they grew to understand each other’s needs and concerns more fully and found ways of discussing and resolving their differences. As one parent says, “We steer a rocky ship, my husband and I…We have had to check in with the therapist, sometimes once a year, sometimes once a week. We’ve experienced a hard distance between one another from time to time, as Will in all his complexity takes over every spare second of our lives. We have hung on, though. Our hearts are bonded by something that goes even deeper than love.” (9)
We know from the experiences of families and the findings of research that having a child with a disability powerfully affects everyone in the family. This includes that child’s brothers and sisters. Many authors and researchers have written with eloquence about how the presence of a disability affects each sibling individually, as well as the relationships between siblings.
The impact, according to the siblings themselves, varies considerably from person to person. Yet there are common threads that run through their stories. (10) For many, the experience is a positive, enriching one that teaches them to accept other people as they are. Some become deeply involved in helping parents care for the child with a disability. It is not uncommon for siblings to become ardent protectors and supporters of their brother or sister with special needs or to experience feelings of great joy in watching him or her achieve even the smallest gain in learning or development. Megan, age 17, says of her life with her brother who has Down syndrome:
Every day Andy teaches me to never give up. He knows he is different, but he doesn’t focus on that. He doesn’t give up, and every time I see him having a hard time, I make myself work that much harder…I don’t know what I would do without Andy. He changed my life…If I had not grown up with him, I would have less understanding, patience, and compassion for people. He shows us that anyone can do anything. (11)
In contrast, many siblings experience feelings of bitterness and resentment towards their parents or the brother or sister with a disability. They may feel jealous, neglected, or rejected as they watch most of their parents’ energy, attention, money, and psychological support flow to the child with special needs. (12) As Angela, age 8, puts it, “[T]here are times when I sit down and think, ‘It’s not fair!’” (13)
And many, many siblings swing back and forth between positive and negative emotions. Helen, age 10, whose sister has severe intellectual disabilities and seizures, begins by saying that she’s glad to have a sister with special needs. “It has opened my eyes to a world of people I never would have known about.” (14) But she also says, “Sometimes I wish I had special needs. I think that a lot when Martha gets ooohed and aahed over and nobody even thinks about me.” (15) And then in the next breath, Helen says, “Another thing is that it really makes me mad when kids slap their chest with their hands and go, ‘I’m a retard!’ It made me so mad!” (16)
The reaction and adjustment of siblings to a brother or sister with a disability may also vary depending upon their ages and developmental levels. The younger the nondisabled sibling is, the more difficult it may be for him or her to understand the situation and to interpret events realistically. Younger children may be confused about the nature of the disability, including what caused it. They may feel that they themselves are to blame or may worry about “catching” the disability. As siblings mature, their understanding of the disability matures as well, but new concerns may emerge. They may worry about the future of their brother or sister, about how their peers will react to their sibling, or about whether or not they themselves can pass the disability along to their own children. (17)
Clearly, it is important for you to take time to talk openly about your child’s disability with your other children, explaining it as best you can in terms that are appropriate to each child’s developmental level. As Robert Naseef remarks, “Just as parents need information, so do siblings, on their level.” (18)
If you’re concerned about sibling issues, have a look at our Siblings page, where you can connect with helpful resources, including support groups available to your children. These can provide an “excellent outlet” for siblings to share their feelings with others in a similar situation. (19)
Much of how you raise your child with a disability will depend on your family’s personal beliefs about childrearing, your child’s age, and the nature of his or her disability. An important point to remember is that most of the regular child-raising issues will apply—children with disabilities will go through the usual childhood stages. They may not go through stages at the same age, at the same rate, or use the same words as children without disabilities, but they are children and kids are kids.
We, as parents, may believe that all children should be treated the same, but in practice that is usually not the case. Why? Because anyone who has been around children, even infants, knows they have different personalities and react differently to similar situations. We encourage and coax the shy child and set limits for the rambunctious one. We tell the loud ones to be quiet and the quiet ones to speak up. We offer different activities to the child who loves to paint than to the one who wants to play ball. Children just are not the same—but they should have the same opportunities.
Among their opportunities should be the chance to assume increasingly greater degrees of responsibility and independence. There may be many ways in which your child can help himself or herself or other members of the family, including doing chores around the house. You will need to consider what these activities might be, given your son or daughter’s disabilities and capabilities. As you expect and encourage your child to assume responsibility, his or her sense of pride and competence will also increase.
Conversely, to not expect or encourage your child to contribute to self-care or household matters may send the message that he or she is not capable of helping. Dependence is fostered instead. As one mother insists, “Let him do things for himself. Don’t baby him. My father-in-law noticed how Chrissy can manipulate people very well…[His] comment was, ‘Boy, he wouldn’t walk anywhere if he could find someone to carry him all over.’ Yup. That’s why we don’t carry him!” (20)
Of course, the nature and severity of your child’s disability may affect how much he or she is able to participate in household duties and so on. Peggy Finston remarks:
The issue, then, for each of us is what is a “realistic” amount of normality to expect from our child? If we expect too much, we run the risk of rejecting him as he is. If we expect too little, we will fail to encourage him to do the most he can with himself. There is no one answer for all of us, or even for all of us dealing with the same condition. The best we can do is to realize that this is an ongoing question that we need to consider. (21)
Another issue that may concern you is what (or whether) to tell your child about his or her disability. As with siblings, the child with special needs may also have a need for information and perspective about what makes him or her different.
Now my hug becomes tighter, closer. I feel my breath in his tousled hair.
“Will, do you ever wonder why you get so scared when something comes out of the blue, why it upsets you so much?”
He sniffles. “Yeah.”
I hesitate. I’m feeling terribly warm. I never wanted to introduce my child to the label someone else created for him. And yet an instinct tells me it may help him….(22)
This is how Kelly Harland describes the conversation she had with her son when she told him about his disability, autism.
And now he’s still. He has calmed down. He’s listening.
…And silence, as I try to imagine where to go next. Maybe I’m all wrong. Maybe I should never have used that word. But an odd rush comes over me. It feels like, with this tentative back-and-forth, we’ve suddenly crashed through some floodgate….Has Will known for awhile that he has a problem; has he been waiting for his mom to explain it to him? There is in all this talk something for both of us to hold onto, maybe in this one moment a way to quell the terror, or even rise above it. (23)
As your child grows and matures and especially as he or she edges into young adulthood, it may be very helpful for him or her to be able to discuss the nature of the disability. This includes what special accommodations he or she needs in order to succeed in school and other settings.
You may wish to involve your child in his or her own IEP meeting, which can teach your child useful skills like self-advocacy, expressing personal interests and goals, and being involved in making decisions that affect his or her life. In fact, by law, whenever your child’s transition to life after high school is going to be discussed at an IEP meeting, your child must be invited to attend the meeting. To learn more about transition planning and student involvement in IEP meetings, visit the Transition Suite, which begins at: https://www.parentcenterhub.org/transitionadult/
Grandparents are often greatly affected by the birth of a child with a disability. “They face the double grief of their grandchild’s disability and their own child’s pain.”(24) It is important to remember that they will need support and information, too. (This is true for other members of the family as well.)
Therefore, your parents and other members of the extended family need to be given opportunities to get to know your child as a person and not just a person with disabilities. Help them to understand your child’s strengths and needs, help them to accept him or her as part of the family. Allowing family members to become involved with your child may also allow you some much-needed time away from the responsibilities associated with caring for a child with special needs.
All parents, at some time, will probably seek child care. For families with a child who needs more supervision or specialized assistance, child care may be difficult to find—or feel comfortable with. However, even if you do not work outside the home and do not need regular child care, you may benefit greatly from having child care on a periodic or even an ongoing basis. This will give you time to take care of personal matters, enjoy some leisure activity, or be relieved of the constant need to care for a child with a disability or chronic illness.
You may also benefit from respite care, a system of temporary child care provided by people familiar with the needs of children with disabilities. “Temporary” can range from an hour to several months, depending on the respite care provider and the needs and desires of the family. Many respite care providers have undergone specialized training and can knowledgeably care for children whose needs may range from close supervision to medical care. Respite care can be provided to infants, teenagers, or adults with special needs. In some cases, the respite provider may be able to provide care only for the child with the disability; in other cases, care may be available for siblings as well. Respite care generally differs from daycare in that it is not available on a daily basis to allow a parent to return to the work force.
To find out more about respite services, contact the ARCH National Respite Network and Resource Center. ARCH operates the National Respite Locator Service whose mission is to help parents locate respite care services in their area. Visit at: http://www.archrespite.org
Although many parents initially may feel reluctant to leave their child with special needs in the care of someone else, those who have tried it give ample testimony to its value in restoring their energy, sense of humor, and perspective.
Over 20 years ago, parent Cory Moore, speaking directly to professionals, wrote:
We need respect, we need to have our contribution valued. We need to participate, not merely be involved. It is, after all, the parent who knew the child first and who knows the child best. Our relationship with our sons and daughters is personal and spans a lifetime. (25)
This sentiment echoes throughout the parent literature and in the hearts of parents everywhere. Not surprisingly, many of the materials written by parents for other parents offer insight into how you might work together with professionals for the benefit of your child and family. The best relationships are characterized by mutual respect, trust, and openness, where both you and the professional exchange information and ideas about the best care, medical intervention, or educational program for your child. Both you and the professional need to speak clearly about issues and listen carefully. Indeed, both of you have important expertise to share.
You, for example, have intimate knowledge of your child with special needs. You live with and observe your son or daughter on a daily basis and can contribute invaluable information about his or her routine, development, history, strengths, needs, and so on.
The professional, too, has specialized knowledge to contribute—that of his or her discipline. Often you must rely upon the professional’s judgment in matters that are critical to the well-being of your child.
Thus, there should be a mutuality in the parent/professional relationship. This can take time to develop and may require effort from both parties. To that end, many parent writers suggest:
If you are looking for a specialist with whom you can work well, ask other parents of children with disabilities. Often, they can recommend a good speech or physical therapist, doctor, dentist, or surgeon.
If you don’t understand the terminology a professional uses, ask questions. Say, “What do you mean by that? We don’t understand.”
If necessary, write down the professional’s answers. This is particularly useful in medical situations when a medication or therapy is to be administered.
Learn as much as you can about your child’s disability. This will assist you with your child, and it can help you participate most fully in the team process.
Prepare for visits to the doctor, therapist, or school by writing down a list of the questions or concerns you would like to discuss with the professional.
Keep a notebook in which you write down information concerning your special needs child. This can include your child’s medical history, test results, observations about behavior or symptoms that will help the professional do his or her job, and so on. (A loose-leaf notebook is easy to maintain and add information to.)
If you don’t agree with a professional’s recommendations, say so. Be as specific as you can about why you don’t agree.
Do whatever informed “shopping around” is necessary to find a doctor who understands your child’s needs, is willing to work collaboratively with other medical professionals, and with whom you feel comfortable.
Measure a professional’s recommendations for home treatment programs or other interventions against your own schedule, finances, and other commitments. You may not be able to follow all advice or take on one more thing, feeling as Helen Featherstone did when she wrote, “What am I supposed to give up?…There is no time in my life that hasn’t been spoken for, and for every fifteen-minute activity that has been added, one has to be taken away.” (26) Peggy Finston points out that “most professionals won’t be familiar with the sum total of our obligations and will not take it upon themselves to give us permission to quit. This is up to us. It’s in our power to make the decision.” (27)
In conclusion, it is important that the parent/professional relationship empower the parent to be a full participant in information-gathering, information-sharing, and in decision-making. However, it is ultimately up to you to decide what role(s) you want to take in this process and what role(s) you need help with. It is helpful to know that families do, indeed, choose different roles in relationship to professionals. Some parents want to allow professionals to make most decisions about their child, others want to serve as an informant to the professional, some want veto power, and some parents want a shared role in the intervention with their child. (28)
You are also free to change your mind about the role or level of involvement you may want or be able to assume regarding your child’s services. You may find that you choose different roles at different times for different purposes. Be as direct as possible about what you want or don’t want to take on in this regard.
In this article, we have looked at many of the issues facing you as parents of a child with a disability. Learning that your child has a disability or illness is just the beginning of the journey. At times, you may feel overwhelmed by the challenges associated with disability and by the strength of your own emotions. And while you may feel alone and isolated, there are many supports available. Other parents can be invaluable sources of help and information. Services are also available through public agencies that can assist your entire family—early intervention services for infants and toddlers and educational services for preschoolers and school-aged children. Having access to information and supports may be critical in maintaining a stable and healthy family life.
We urge you to read, to talk to other parents who have a child with a disability, to talk with each other and with other family members, and to reach out for assistance when you need it. We conclude with the words of Clare Claiborne Park, as she reflects upon the experience and emotions of being a parent of a child with disabilities.
This experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson of Sophocles and Shakespeare—that one grows by suffering. And that too is Jessy’s gift. I write now what fifteen years past I would still not have thought possible to write; that if today I was given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands—because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love. (29)
How Does Music Therapy Help In Babies' Development?
Music Therapy can enhance a child's physical and mental well-being.
Whether you are happy, sad, or angry, music can bring about all kinds of reactions in babies to adults. Music therapy involves age-appropriate music to support the diverse cognitive, physical, psychological, and social needs of children and adolescents to help them reach their fullest potential. The therapy can help children identify their strengths and act as a way for self-expression and open communication. It is also commonly used to enhance family bonding between children and parents.
For infants and premature babies
On the other hand, live familiar music such as lullabies along with physical and social activities is the most preferred form of music therapy for premature babies and infants. Slow and soothing music combined with relaxation techniques helps to reduce irritability, pain, anxiety and encourages family bonding. Some of the ways that babies who receive music therapy benefit are;
Sensory skills: Sensory skills refer to skills responsible for receiving information such as vision, hearing, touch, smell, and taste. Parents who sing to their babies while holding them develop a bond through skin-to-skin contact. Moreover, music therapy also helps infants build a tolerance for noise, allowing them to block unnecessary noise and de-stress.
Feeding habits: Babies who receive recorded music therapy are more likely to have better feeding behaviour. Since they can consume more food, the average daily weight of these babies is also higher.
Speech and language: Music therapy motivates children to interact, engage, and participate in a social setting. They also have better communication with their parents as the music helps premature babies feel closer to them
Attention Contol: Music therapy improves the cognitive abilities of babies. They have a longer attention span and stronger willpower to control emotions and behaviours.
Health: As their sensory, communication, feeding habits and cognitive abilities improve, the babies are likely to experience a decline in stress and pain level. Therefore, these babies tend to have healthier sleeping patterns and normalised breathing.
Music therapy can be fun for children to get their bodies and brains working together. It can be an extracurricular activity that enhances a child's physical and mental well-being in addition to their schoolwork. You can also consult a doctor and clear any doubts regarding music therapy if you feel that your baby may benefit from it.
Music for Babies
“The act of hearing itself influences the quality of auditory development,” says Lise Eliot, Ph.D. in What’s Going On In There? Her book explains how the brain and mind develop in the first five years of life. All the listening that babies do, including their time in the womb, shapes the way their brains become wired to process and understand different sounds. Exposing them to the right music can be a powerful way to promote optimal brain development.
At ABT, this research was behind the creation of Music for Babies to help improve auditory-based learning, attention, and development in young children. The beautiful and gentle music was developed by a team of experts from the fields of neurodevelopment, child development, education, music, music therapy, sound engineering, and recording. Richard Lawrence and Alex Doman built note by note on discoveries in science and developmental psychology in very young children that help each child achieve their extraordinary and unique potential.
Music for Babies is a unique collection of 4 sixty-minute instrumental recordings produced by ABT; Sleepy Baby, Peaceful Baby, Cheerful Baby, and Playful Baby.
These rich acoustic recordings are masterfully played by the award-winning musicians of Arcangelos Chamber Ensemble. Each volume includes classical and traditional folk music arranged for children and instrumental versions of well-known nursery rhymes and lullabies.
Music for Babies gives our children an early start in their life’s journey. It nurtures a universal wish for health for all children by giving them a melody of calm and relaxed alertness that resonates throughout the body, mind, and soul.
No special equipment is required to play Music for Babies, although the better quality of the sound equipment, the richer the listening experience.
This music can be enjoyed over speakers or through headphones. There is no limit to how often or how long Music for Babies is played, although any listening done through headphones for children under three should be kept to no longer than 30 minutes at a time to avoid middle ear fatigue.
The experience of listening to this beautiful, neuroacoustically-modified classical music has led to numerous positive outcomes for people of all ages with a wide range of challenges. It is scientifically designed to help your brain perceive, process, and respond to information, resulting in children learning and growing without realizing it.
Parents and caregivers can play these four tracks to promote a passive listening experience and boost a child’s brain performance. I love to offer "Yes Space" freeplay
You might be wondering how to avoid autism during pregnancy. Although there’s currently no cure or definitive way to prevent autism spectrum disorder, studies have found that certain actions can help pregnant women lower the risk of having a child with ASD. Autism spectrum disorder (ASD) is a neurological disability that causes significant development delays, especially in social functioning. According to Autism Speaks, one in 45 children in the United States have been diagnosed with autism.
Women who are pregnant (or planning to be) can develop prevention strategies for autism to increase their chances of delivering a healthy baby. Research in the New England Journal of Medicine found that disparities in brain development begin as early as the second trimester for autistic children. Starting at conception, the following tips may help expectant mothers prevent autism during pregnancy.
Can Autism Be Prevented by Maintaining a Nutritious Diet?
While you may not be able to prevent autism, there are things you can do to lower your risk of having a child with ASD. Women can lower the risk for autism by eating colorful, organic diet rich in green vegetables and fruits containing antioxidants. Doctors recommend eating at least 80 grams of protein per day from lean sources like:
Many health experts support reducing “white foods,” including bread and sugar. These white foods can be heavily processed and contain fewer nutrients than their whole counterparts. When foods are refined many vitamins and minerals are removed.
The U.S. Department of Health and Human Services suggest soon-to-be mothers take 400 to 800 mcg of folic acid to assist with their child’s development. Folic acid is needed by the body to help form the neural tube. There is research to show that taking this B vitamin before and early in pregnancy is associated with a lower risk of ASD.Vitamin DIncreasing intake of vitamin D has been linked to better neurological development in fetuses. One study found that women who were deficient in vitamin D halfway through their pregnancy were 2.42 times more likely to have a child with autism spectrum disorder that a woman with a normal vitamin D level. The reasons are unknown and more research is needed on a possible connection between vitamin D and ASD.
Omega-3 Fatty AcidsDoctors recommend pregnant women should get enough omega-3 fatty acids. A study from Harvard School of Public Health found a link between an unbalanced consumption of omega fatty acids during pregnancy and a risk of autism spectrum disorder. They found that children born to mothers who did not consume adequate amounts of omega-3 fatty acids are 53% more likely to be born with ASD.Weight Gain During PregnancyWeight gain during pregnancy is another risk factor for autism spectrum disorder. A modest weight gain of 25 to 35 pounds during pregnancy is optimal.
A study published by Pediatrics, the official journal of the American Academy of Pediatrics, found a possible link between maternal prenatal weight gain and ASD. They found that the risk of a child developing autism increased significantly with pregnancy weight gain but not pre-pregnancy BMI. This research suggests that autism has an underlying gestational etiology.
I Have Heard That Genetics Play a Huge Role in Autism
Autism is a complex disorder without a single known cause or “trigger.” In fact, autism is likely caused by a combination of genetic and environmental factors. Scientists agree that genetics are responsible for up to 90 percent of the autism risk. Whether a child develops ASD is usually out of the parents’ control.
Certain genetic disorders are associated with an increased risk for autism spectrum disorder.
Fragile X Syndrome is a genetic condition that can cause behavioral challenges. Fragile X can also cause learning challenges along with various physical conditions. It’s believed to be the leading genetic cause of autism. One in three people with Fragile X will also have a diagnosis of autism.Cornelia de Lange Syndrome is another genetic condition related to autism. Between 50% and 75% of individuals diagnosed with CdLS have autism characteristics.
Symptoms like social anxiety and extreme shyness are prevalent in this population. Selective mutism is also common.There are other risk factors for autism spectrum disorder that are beyond a parent’s control. These include:
the sex of your child
According to research, boys are up to four times more likely to be diagnosed with autism spectrum disorder than girls. Historically, males have been studied and diagnosed at a greater rate than females. This could be because males are actually at greater risk for autism. It could also be because screening tests aren’t always picking up ASD in females, especially among those considered high functioning. More research is needed in this area.
Family history can also play a role in autism risk.
Parents who have one child with ASD are at an increased risk of having another child with the same diagnosis. Relatives and parents may have communication deficits or problems communicating that can be mild symptoms of autism.
Unfortunately, there is no playbook that can help give a definitive answer to the question “Can autism be prevented?” There are certainly things you can do to reduce the risk, but there are no guarantees. If you suspect your child may have autism, early intervention is key. Seek the advice of a medical professional who can complete appropriate screenings. Reach out to therapists early who can help optimize future outcomes for children with autism. Most importantly, understand that you are not alone and help is available for children diagnosed with ASD.
Detecting other Birth Defects
About birth defects
A birth defect is a problem that occurs when a baby is developing in utero (in the womb). Approximately 1 out of every 33 babiesTrusted Source in the United States is born with a birth defect.
Birth defects can be minor or severe. They may affect appearance, organ function, and physical and mental development. Most birth defects are present within the first three months of pregnancy, when the organs are still forming. Some birth defects are harmless. Others require long-term medical treatment. Severe birth defects are the leading cause of infant death in the United States, accounting for 20 percentTrusted Source of deaths.
However, the exact causes of certain birth defects are often unknown.
The mother or father may pass on genetic abnormalities to their baby. Genetic abnormalities occur when a gene becomes flawed due to a mutation, or change. In some cases, a gene or part of a gene might be missing. These defects happen at conception and often can’t be prevented. A particular defect may be present throughout the family history of one or both parents.
The causes of some birth defects can be difficult or impossible to identify. However, certain behaviors greatly increase the risk of birth defects. These include smoking, using illegal drugs, and drinking alcohol while pregnant. Other factors, such as exposure to toxic chemicals or viruses, also increase risk.
spina bifida, when the spinal cord doesn’t develop properly
clubfoot, when the foot points inward instead of forward
Functional or developmental birth defects cause a body part or system not to work properly. These often cause disabilities of intelligence or development. Functional or developmental birth defects include metabolic defects, sensory problems, and nervous system problems. Metabolic defects cause problems with the baby’s body chemistry.
The most common types of functional or developmental birth defects include:
Down syndrome, which causes delay in physical and mental development
Some children face physical problems associated with specific birth defects. However, many children show no visible abnormalities. Defects can sometimes go undetected for months or even years after the child is born.
Many types of birth defects can be diagnosed during pregnancy. A healthcare professional can use prenatal ultrasounds to help them diagnose certain birth defects in utero. More in-depth screening options, such as blood tests and amniocentesis (taking a sample of the amniotic fluid), may also be done. These tests are usually offered to women who have higher-risk pregnancies due to family history, advanced maternal age, or other known factors.
Prenatal tests can help determine whether the mother has an infection or other condition that’s harmful to the baby. A physical examination and hearing test may also help the doctor diagnose birth defects after the baby is born. A blood test called the newborn screen can help doctors diagnose some birth defects shortly after birth, before symptoms occur.
It’s important to know that prenatal screening doesn’t always find defects when they’re present. A screening test can also falsely identify defects. However, most birth defects can be diagnosed with certainty after birth.
Treatment options vary depending on the condition and level of severity. Some birth defects can be corrected before birth or shortly after. Other defects, however, may affect a child for the rest of their life. Mild defects can be stressful, but they don’t typically affect overall quality of life. Severe birth defects, such as cerebral palsy or spina bifida, can cause long-term disability or even death. Speak with your doctor about the appropriate treatment for your child’s condition.
Medications: Medications may be used to treat some birth defects or to lower the risk of complications from certain defects. In some cases, medication may be prescribed to the mother to help correct an abnormality before birth.
Surgeries: Surgery can fix certain defects or ease harmful symptoms. Some people with physical birth defects, such as cleft lip, may undergo plastic surgery for either health or cosmetic benefits. Many babies with heart defects will need surgery, as well.
Home care: Parents may be instructed to follow specific instructions for feeding, bathing, and monitoring an infant with a birth defect.
Many birth defects can’t be prevented, but there are some ways to lower the risk of having a baby with a birth defect. Women who plan to become pregnant should start taking folic acid supplements before conception. These supplements should also be taken throughout the pregnancy. Folic acid can help prevent defects of the spine and brain. Prenatal vitamins are also recommended during pregnancy.
Women should avoid alcohol, drugs, and tobacco during and after pregnancy. They should also use caution when taking certain medications. Some medications that are normally safe can cause serious birth defects when taken by a pregnant woman. Make sure to tell your doctor about any medications you may be taking, including over-the-counter drugs and supplements.
Most vaccines are safe during pregnancy. In fact, some vaccines can help prevent birth defects. There is a theoretical risk of harm to a developing fetus with some live-virus vaccines, so these kinds should not be given during pregnancy. You should ask your doctor which vaccines are necessary and safe.
Maintaining a healthy weight also helps reduce the risk of complications during pregnancy. Women with pre-existing conditions, such as diabetes, should take special care to manage their health.
It’s extremely important to attend regular prenatal appointments. If your pregnancy is considered high risk, your doctor can do additional prenatal screening to identify defects. Depending on the type of defect, your doctor may be able to treat it before the baby is born.
A genetic counselor can advise couples with family histories of a defect or other risks factors for birth defects. A counselor may be helpful when you’re thinking about having children or already expecting. Genetic counselors can determine the likelihood that your baby will be born with defects by evaluating family history and medical records. They may also order tests to analyze the genes of the mother, father, and baby.
This section of the website has tools and information about autism spectrum disorder (ASD) for families.
If You’re Concerned – Act Early!
If you think your child might have an ASD or you think there could be a problem with the way your child plays, learns, speaks, or acts, contact your child’s doctor as soon as possible, and share your concerns.
Facts about ASD Find information about ASD, including symptoms, risk factors, screening, treatments, and what to do if you’re concerned.
Developmental Milestones Your child should reach milestones in how he plays, learns, speaks and acts. A delay in any of these areas could be a sign of a developmental problem, even autism. Visit our webpage to see milestones that children should reach from 2 months to 5 years of age, plus interactive tools to help keep track of the milestones.
TreatmentsInformation about various treatment options for ASD, including behavioral and communication approaches, biomedical and dietary approaches, medication approaches, and complementary approaches.
Living with an ASD Find information and resources for living with an ASD, including independent living, transitions, and health.
Resource Kit for Parents The free Parent Resource Kit contains information on developmental milestones by age (2 months to 5 years), developmental screening, and a growth chart.
Links to Other Websites Find more information and resources on ASD for families from other organizations, including a kit to help families get through the first steps of an autism diagnosis, a parent’s guide to assessment and research, and more.
Autism NOW Autism Now is an initiative of The Arc and The Administration on Developmental Disabilities. This national autism resource and information center is a central point of resources and information for individuals with Autism Spectrum Disorders (ASD) and other developmental disabilities, their families, and other key stakeholders.
A Parent’s Guide to Assessment This guide helps parents understand the assessment process and learn how to use assessment results to improve their child’s services.
A Parent’s Guide to Research
This guide helps parents find, understand, and evaluate autism research studies.
A Guide for Transition to Adulthood This guide provides an overview of the transition from school to adulthood.
Mental Health Services Locator, National Mental Health Information Center The Mental Health Services Locator helps families and professionals find information about mental health services and resources by state and/or region. The National Mental Health Information Center is part of the Substance Abuse and Mental Health Services Administration of the Department of Health and Human Services.
Operation Autism for Military Families Operation Autism is a web-based resource specifically designed and created to support military families that have children with autism. It is from the Organization for Autism Research (OAR) and the American Legion Child Welfare Foundation.
Children’s Health Insurance Program Insure Kids Now! is a national campaign to link the nation’s 10 million uninsured children–from birth to age 18–to free and low-cost health insurance. It is sponsored by the Department of Health and Human Services. Each state has a Children’s Health Insurance Program that provides free or low-cost health insurance for eligible children. The website has basic facts about these programs as well as links to every state’s program for children. The site also has information on where you can learn who is eligible for the program, how to apply, and what services are covered. You can get information in English and Spanish. En Español: ¡Asegure a sus Hijos Ahora! | El Programa de su Estado
GovBenefits.gov GovBenefits.gov is a partnership of Federal agencies with a shared vision – to provide improved, personalized access to government assistance programs. This website can help you determine if there are government benefits you can receive.
Medicaid Medicaid is a federal program that helps certain groups of people pay for medical care. Each state regulates its own Medicaid program, so the rules may be slightly different state-to-state. To get information, contact the Medicaid office in your state.
The Arc Medicaid Reference Desk The Medicaid Reference Desk is a tool to help people with intellectual and developmental disabilities find out what Medicaid can offer them. It is a project of The Arc and the Administration on Developmental Disabilities.
Social Security Benefits This booklet is for the parents, caregivers or representatives of children under age 18 who have disabilities that might make them eligible for Supplemental Security Income (SSI) payments. It is also for adults who became disabled in childhood and who might be entitled to Social Security Disability Insurance (SSDI) benefits. (SSDI benefit is called a “child’s” benefit because it is paid on a parent’s Social Security earnings record.)
Sound Advice on Autism To answer parents’ questions about autism spectrum disorders, the American Academy of Pediatrics (AAP) offers a collection of interviews with pediatricians, researchers and parents.
Special Needs Trust/Estate Planning Plan ahead for your child’s financial future by writing a specialized will and preparing other documents that will help your child access his or her government benefits when you are gone.
AutismCares A growing number of national autism organizations partnered to form AutismCares, a national initiative to help families with members who have autism that are challenged with disasters in their community. AutismCares registers families through a free online service to help manage and store their health care records and ensure that trained case managers are able to locate them more effectively in case disaster strikes their community.
People who have an autism spectrum disorder may use assistive technology (AT). AT is any item that helps people do things in their daily lives. Examples of AT devices include a keyguard that helps children find the right keys on a computer keyboard, a simpler remote control for a TV or stereo, an adapted mouse that makes getting around on the computer easier, switches that help children play with toys, and talking books.
Assistive Devices, MEDLINEplus MEDLINEplus is an online service of the National Library of Medicine and the National Institutes of Health. Updated daily, the site offers information on a range of health topics, including autism and assistive devices, in English and Spanish (En Español).
Diagnostic and Statistical Manual of Mental Disorders The Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association, is the standard classification of mental disorders used by mental health professionals in the United States.
Developmental and Behavioral Pediatrics Online Developmental and Behavioral Pediatrics Online is for professionals interested in child development and behavior in a medical setting. The website focuses on primary care development and behavior, including early intervention and screening, and provides articles, handouts, and materials about developmental disabilities developed for professionals and parents. It also offers a practice section with information to support primary and specialty health care practice.
Association of University Centers on Disabilities The Association of University Centers on Disabilities is network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities, their families, and communities.
Health Resources and Services Administration The Health Resources and Services Administration (HRSA), an agency of the Department of Health and Human Services, improves access to health care services for people who are uninsured, isolated, or medically vulnerable. HRSA provides leadership and financial support to health care providers in every state and U.S. territory.
National Association of Special Education Teachers The National Association of Special Education Teachers (NASET) has one of the largest sources of information on special education in the United States that teachers have identified as being the most relevant issues faced in the field. The NASET database is updated daily.
Teaching Tips for Children and Adults with Autism The article “Teaching Tips for Children and Adults with Autism” by Temple Grandin has 28 tips to help teachers in fostering a classroom environment conducive to learning for children with autism. Dr. Grandin is an associate professor at Colorado State University and a well-known adult with autism.
Young Children with Challenging Behavior The Technical Assistance Center on Social Emotional Intervention for Young Children, also known as TACSEI, takes the research that shows which practices improve the social-emotional outcomes for young children with, or at risk for, delays or disabilities and creates free products and resources to help decision makers, caregivers, and service providers apply these best practices in the work they do every day.
Zero to Three Provides professionals working with very young children and their families an extensive collection of resources aimed at supporting the work of professionals in a variety of early childhood settings. Top of Page
Grants.gov Grants.gov helps organizations find and apply for more than $400 billion in federal grants electronically. It is the single access point for more than 1,000 grant programs offered by all federal grant-making agencies. The Department of Health and Human Services is the managing partner for Grants.gov.
Other Federal Resources
Interagency Autism Coordinating Committee The Interagency Autism Coordinating Committee (IACC) coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.
National Institutes of Health The National Institutes of Health (NIH) conducts and funds studies to improve the health of all people. The Autism Centers of Excellence (ACE) Program is a trans-NIH initiative that supports large-scale multidisciplinary studies on autism spectrum disorder with the goal of determining the disorder’s causes and the best treatments for them. NIH has developed a National Database for Autism Research (NDAR) to support and accelerate research in autism. This resource highlights existing research and information about autism spectrum disorder and encourages new research by allowing greater access to data.
September is Baby Safety Month, and we want to draw your attention to Advanced Brain Technologies’ award-winning Music for Babies™, a beautiful way to mask “toxic noise,” a genuine threat to hearing health, which is present in nearly every home and childcare center today.
The Cornell Chronicle reported a study that shows that children don’t tune out sound per se when they are in a chronically noisy environment; instead, they have difficulty acquiring speech recognition skills. As early as 1975, one researcher found that children on the train-track side of a New York public school were lagging a year behind their classmates on the other side of the building in learning to read.
Even relatively low levels of noise – 55 to 60 decibels (dB) can interfere with conversation. The danger zone for hearing loss begins at about 85 dB. The sound of toys can range up to 100 dB. Even a baby’s rattle can be as high as 110 dB. To give you an idea of noise levels in most of our environments, here are some decibel examples:
“The act of hearing itself influences the quality of auditory development,” says Lise Eliot, Ph.D. in What’s Going On In There? Her book explains how the brain and mind develop in the first five years of life. All the listening that babies do, including their time in the womb, shapes the way their brains become wired to process and understand different sounds. Eliot goes on to say that this development is not just limited to the auditory system, but that “children’s early experience with speech and music is tremendously important in shaping many higher aspects of brain function, including emotion, language, and other cognitive abilities.”
Research continues to show that music is a useful, powerful tool to maximize human potential. So, it was natural for us to want to develop a musical product that would promote neurological development for the very young.
A primary objective for creating Music for Babies was to help prevent auditory-based learning, attention, and developmental problems in young children. Our development team included experts from the fields of neurodevelopment, child development, education, music, music therapy, sound engineering, and recording.
We included lullabies from many cultures, including French, English, and Welsh, to help a child fall asleep. For playtime and creating a happy mood, we selected several pieces that Mozart wrote when he was a little boy. He began composing at age four, and his early compositions were simple, bright, and happy.
Music for Babies
Tracks include classical music, folk tunes, lullabies, and nursery rhymes specifically arranged to enhance a baby’s brain development while providing a nurturing environment.
Sleepy Baby Four psychoacoustic treatments were utilized in Sleepy Baby. The volume softens track by track from the beginning selection to the end, which helps the child settle down and drift off to sleep. It also means a parent does not need to turn the music off once the baby goes to sleep. The tempo gradually slows from a range of 70-40 beats per minute to encourage the baby’s system to slow down. The frequency range of notes progressively gets lower. Last, the music gradually sounds farther away. The combination of these mellow sounds and treatments helps produce a calming and restful feeling and helps to induce sleep.
Peaceful Baby Peaceful Baby contains very delicate and beautiful music to help calm and relax a little one and creates the environment for a quiet mood. Prior experience has shown that improvised playing with an instrument encourages a deeper brain wave state in the performer, which extends to the listener as well. So relaxing, improvised melodies were recorded. We chose slower tempos and rhythms of 50-90 beats per minute to encourage entrainment. Instruments on this album include harp, strings, flute, and celeste; all played gently to create a calming effect. A treatment called frequency equalization was used to remove any high frequencies that might startle a child. Pieces such as “Baa Baa Black Sheep,” “Lambs Are Sleeping,” and “Gaelic Cradle Song” were arranged to engage a child’s attention, and gradually slow down their body rhythms.
Cheerful Baby Cheerful Baby will improve a baby’s mood. This album has a more upbeat tempo of 60-120 beats per minute, to energize brain function. Instruments were used, and arrangements were created for their effect on alertness. We created a rich spatial environment to develop listening abilities and to encourage the development of other senses as well. Subtle, unexpected arrangements and sound that moves from side to side stimulate active listening. The music selected for this album has a rich, full-spectrum sound, especially in the higher frequencies, which are known to charge the brain.
Playful Baby Playful Baby became an opportunity to stimulate listening in an expanded way, adding a variety of sounds that complement the music. When you hear “Baa, Baa, Black Sheep,” you will also hear the sound of a lamb. On Bizet’s “Gallop,” you will listen to the sound of horses’ hooves, with the sound going from one side of the room to the other as the horses gallop past. And yes, that’s a real cuckoo you hear in the “Toy Symphony!” The variety of sounds interwoven with the music, which ranges from 80-140 beats per minute, is designed to stimulate active listening. The movement of sounds and instruments from side to side will also help develop spatial awareness.
Music for Babies has not only inspired listeners but has received various national and international awards and endorsements from respected authorities on child development and children’s media. Awards and endorsements include; The Parents’ Choice Award, National Coalition for Quality Children’s Media “KIDS FIRST!” endorsement, Dr. Toy’s 10 Best Audio/Video winner, and 100 Best Children’s Products winner, The Dove Foundation, along with numerous professional and parent praises.
Just as food nourishes a baby’s growing body, the elements of music – melody, rhythm, tone, and harmony – foster the brain growth crucial to healthy young minds. By playing Music for Babies, you, as a parent or caretaker, can actively support optimum brain development. You can build a strong foundation for later learning, language development, and music ability to help each child achieve their extraordinary and unique potential.