Reposted with permission from safety.com
A recent study by the American Journal of Public Health examined national mortality data and found that individuals with a diagnosis of autism died on average 35.8 years younger than individuals in the general population. Their research also found that the difference in deaths caused by injury was almost as striking.
Most parents place their children’s safety as a top priority as a rule. But for parents of children with autism, the reality is that it can be even more difficult to keep your children safe from themselves and others simply because of the nature of their disorder. However, parents of children with autism should not live in constant fear: there are tips parents and caregivers of kids with autism can follow to make sure they stay safe.
People with ASDs (autism spectrum disorders) share some symptoms, such as difficulty with social interaction, and their brains process information differently than those of unaffected people. Children with ASDs may exhibit a common set of characteristics that naturally make them more susceptible to danger. For instance, people with ASDs commonly have no real fear of dangers and an apparent insensitivity to pain. An inappropriate response—or no response at all—to sound is another common characteristic that could open the door to danger.
Scientists do not yet know the cause of ASDs. According to the CDC, ASDs occur in people of all racial, ethnic, and socioeconomic backgrounds. While it is estimated that autism affects 1 in 88 children, boys are nearly five times more likely than girls to be affected by autism; in fact, the number of boys affected by autism is 1 in 54, compared to 1 in 252 girls. And, Autism Speaks points out that the prevalence of autism is not just growing: it is “the fastest-growing serious developmental disability in the United States.”
Keeping all children safe is important. But, keeping children with autism safe becomes even more of a priority because of their social, communication, and behavioral challenges.
Autism Speaks recommends that parents of children with autism create safety plans, and there are some basic tips to keep in mind when creating those plans for your child with autism.
1) Include family and community members who come into daily contact with your child with autism. Keep in mind school personnel, daycare providers, neighbors, extended family, etc. Make sure you have contacted each person and discussed your most pressing concerns about your child’s safety.
2) Think about all of the places in which your child needs to be protected. This probably includes home, school, friends’ homes, community centers, etc. Then, be sure to evaluate them for safety and to put preventative measures into place in each area. It is especially important to remember to include safety skills in your child’s Individual Education Program (IEP) in your school district.
3) Consider the top safety risks for individuals with autism: wandering, pica (the tendency to eat or crave substances other than normal food), drowning, and household toxins. Take the necessary precautions for safeguarding your child against these safety risks and practice safety skills with your child other family members.
4) Give your child a form of identification with contact names and numbers listed. Make sure your child always wears or carries this identification, especially because wandering could be a concern. Or, purchase a child locator and clip it to your child’s shoe, belt, etc. (All these products and more are available at IfINeedHelp.org)*
5) Contact your local communications center, police department, and/or 911 call center to communicate your concerns and safety plan with the appropriate officials. Remember, you are your child’s best safety advocate.
The home can be a very dangerous place for any young child, but it can be even more dangerous for your child with autism. The difference is that the safety measures and precautions most parents implement for very young children may need to be in place for a much longer period of time for children with autism. Consider this checklist to keep your child with autism safe at home
A recent study funded by Autism Speaks, through its support of the Interactive Autism Network(IAN), an online project bringing together families affected by autism, and published in the journal Pediatrics shows that children with ASDs wander away from home, stores, and school more often than unaffected children. Through the use of parent surveys, researchers found that nearly half of children with autism attempt to wander or run from a safe, supervised place, and more than half of these wandering children go missing long enough to cause worry. Of the children who caused worry, 65% of the incidents involved a close call with traffic, and 32% involved near drowning.
Overall, the occurrences of wandering increased with the severity of the ASD, and the children who wandered most commonly left their own homes or ones they were visiting. Most parents listed the main reason for their child’s wandering as being their enjoyment of running and exploring, but other reasons included visiting a favorite place or escaping a stressful situation or an uncomfortable sensory stimuli. The study highlighted the need for parents to develop safety plans with their families, teachers, police, and other community members to protect children with autism who wander and to be able to locate them.
The National Autism Association recommends that parents and caregivers use the following tips to help prevent wandering by understanding wandering patterns and eliminating triggers in children with an ASD:
1) Determine which type of wandering best describes your child (is he directed by goals, is he a sudden runner, etc.).
2) Recognize what triggers the wandering incidents.
~If it is a goal, allow the child to explore the goal in a safe and supervised manner (for example, if the child’s goal is to get used to water, schedule a time for water play each day).
~If it is to escape something, address the issue (for example, there may be too much noise at a certain time of day that the child is trying to get away from).
3) Develop and implement strategies to help your child deal with his triggers in a way that helps him to cope with the trigger rather than running away.
4) Include known triggers in your child’s IEP so that he may work on calming techniques with the appropriate school personnel.
5) Acquire appropriate social stories and review them with your child.
6) Share your child’s goal, fascination, or need to escape with all people who are involved in your child’s daily routine to aid them in preventing your child from wandering.
Moreover, the Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration is working toward reducing autism-related wandering incidents and deaths. Some of the tips they specifically recommend for parents of wandering children with autism include the following:
~ Contact a professional locksmith, security company, or home improvement professional to promote safety and prevention in your home.
~ Have your child wear an ID bracelet or necklace that includes your name, telephone number, and other important information. If your child with autism will not wear a bracelet or necklace, consider a temporary tattoo. (All these products and more are available at IfINeedHelp.org)*
~ Teach your child to swim, but remember that teaching a child to swim does not mean he is safe in or near water.
~ Introduce your neighbors to your child with autism and provide a photograph with your name, address, and phone number so they can call you immediately if they see your child outside of your home. (You can use IfINeedHelp.org neighbor alert with their free membership)*
~ Provide first responders with key information on handouts (you should distribute these to your family, neighbors, friends, and coworkers as well): include the name, age, and physical description of your child with autism as well as his favorite song, toy, or character so the first responders are able to communicate with and calm your child more easily. (You can use IfINeedHelp.org emergency questions and answers with their free membership)*
Because children spend such a large amount of time in school, it is just as important to know how to keep them safe in the classroom as it is at home. The following six tips should help to keep your child with autism safe in their home-away-from-home.
Because of the unpredictable nature of going on an outing, one of the most important things you can do is prepare your child with autism before going to a public place. Telling your child where you are going and why may ease his anxiety about changing the routine of his day and may prevent a meltdown. Health Central recommends a few things that may make the preparation for the outing easier for your child and yourself.
Whether your child with autism is home, at school, or in a public space, make sure you have equipped him with the materials, skills, and knowledge necessary to stay safe. Remember, you are his best safety advocate.
More Safety Solutions for Kids and Families:
* added by If I Need Help
By Dr. Greg Grillo
Sometimes, when a child is in pain it is easy for them to communicate that pain to their parent or guardian. However, for children with autism, they may be nonverbal. This means they could be in intense pain or discomfort without anyone knowing. This can make it difficult when it comes to dental issues in your child. Dental issues can arise at any time and can become extremely serious if left untreated. It’s a terrifying fear that exists amongst both children and parents. As a parent, you never want to see your child’s life at risk. I have been practicing family dentistry for 17 years and the safety and comfort of your family is always my number one priority. That’s why I’ve compiled a list of signs that your child may have dental issues and how you can spot them and get treatment as soon as possible.
If you notice any chalky white spots on your child’s teeth, it may be a sign that a cavity is developing. Even more so, if the tooth is turning brown or black, you need to visit a dentist as soon as possible. Tooth decay can progress quickly, so any discoloration must be dealt with immediately. Children who are most at risk for cavities and tooth decay are those with high levels of bacteria in their mouth, those with a diet high in sugar and starches, those with poor oral hygiene, and those who have less saliva flow than normal. The best way to check for any discoloration or tooth decay in your child’s teeth is to examine their teeth every once and awhile. A cavity is usually not painful which is why it’s important to check occasionally. Regular examinations, daily brushing and flossing, along with regular dental visits can assure that your child doesn’t get any cavities
When checking your child’s mouth, another thing to look for is irritated gums. If their gums are irritated they will be red, swollen, and maybe bleeding. This is a sure sign that you should head to the dentist as irritated gums usually indicate gum disease or other health concerns. Like cavities, gum disease can be painless so you’re child may not know anything is wrong. Also similar to tooth decay, gum disease can also spread rather quickly and lead to more serious issues which is why it’s important to see a dentist as soon as possible. This condition is one of the most serious and your child can develop abscessed teeth because of it. The best time to check your child’s mouth is in the morning and night when they practice brushing their teeth.
Abscessed teeth, also known as oral infections, are one of the most serious dental conditions and you should look closely for any oral infections in your child. They can be caused by both tooth decay and gum disease. These can often go unnoticed until it’s too late. A lot of children with autism are nonverbal which can make spotting an abscessed tooth even more difficult. If your child is nonverbal be sure to regularly check their mouth for any signs of an oral infection. Oral infections thrive near the gums and one sure sign of an abscessed tooth are pimple like bumps on the gums. If you notice this in your child, head to the dentist right away. If the infection goes untreated it can become much more serious as it may spread to other parts of the body.
Bad breath can seem like a normal issue that can have an easy fix. Usually, this is the case. However, in some instances, bad breath can be a sign of inflamed gums, dry mouth, or be related to other medical issues your child may have. Some underlying medical issues that may cause bad breath are swollen tonsils and sinus infections. Visiting a dentist regularly and having a good oral care routine at home are good ways to prevent bad breath and most dental issues. However, if you notice that your child has bad breath that won’t go away with regular dental care, head to your dentist or primary healthcare provider to find out if there are any underlying medical issues.
Teeth grinding, or Bruxism is a common dental issue amongst children and especially children with autism. Teeth grinding usually doesn’t result in anything serious and can be an easy habit to break with fidget toys and other items. However, some more serious issues that can arise from prolonged teeth grinding are wear on the teeth, jaw pain, and headaches. It’s important to work to break this habit before more serious issues arise, and before your child gets any of their permanent teeth. Prolonged teeth grinding on permanent teeth can cause more wear and damage than on baby teeth.
Special Needs Dental Care issues in children can be serious if left untreated. For children with autism, it can be more difficult to uncover these issues. However, regularly checking your child’s mouth and staying alongside them as they practice dental hygiene is a great way to spot issues before they become more serious. Embrace the journey of learning about dental care together and enjoy learning the best ways to care for your teeth together. If you do notice any issues, call your dentist and schedule an appointment right away. Dental issues can quickly become more serious and you will want your child to receive treatment as soon as possible.
Dr. Greg Grillo was born and raised in the Okanogan Valley in Washington state. Dr. Grillo spent eight years at the University of Washington and received a bachelor’s degree with honors before attending the School of Dentistry on the same campus.
From there he was selected for a Health Professions Scholarship by the United States Navy where he served as a dental officer for four years. After treating families of squadron military members in South Carolina and Japan, Dr. Grillo returned home to join his father’s practice where he has remained for more than 17 years.
Dr. Grillo’s more than two decades of expertise, combined with his passion for dental marketing and knowledge of dental software, makes him an invaluable asset to the Emergency Dentists USA team.
And because he’s still working as a dental practitioner and constantly taking new courses to stay educated, he knows better than anyone what our readers and callers can expect when they visit an emergency dentist, as well as what to look for when we partner with practitioners across the United States.
By Natasha Barber
When my son Joshua was seven years old, he did not have the skills to wait for anything. For example, when his iPad would buffer, Joshua had to wait for his show to continue, instead he would get upset and elope. This was a real safety concern because he would run and not look at where or what he was running into. During his autism therapy sessions, Joshua came up with a little song that he would use to cope with when being asked to wait. His The Waiting Song was turned into a picture book that other kiddos can use to help them cope with the same skills.
by singing his song and his elopement behavior slowly vanished; our safety concern for Joshua running into dangerous situations were no longer as serious a concern. We will always remain alert because Joshua doesn’t yet understand all the dangers around him and what can cause him harm, but with his tune, Joshua can cope with his emotions better, reframe the situation, and not bolt away from a safe environment.
The Waiting Song is a beautifully illustrated children’s book that gives readers a small look into the world of a child with autism. Children will meet Nigel, a four-year-old hedgehog, who is a lot like his other classmates, but unlike other students, he doesn’t talk or say many words. Nigel is not very good at waiting or taking turns but with the help of his mom, teacher and his Waiting Song, he learns to be more patient.
This wonderful book teaches children about autism while teaching the importance of being polite and waiting your turn. I hope that by capturing Joshua’s little song in a Children’s Book, it will help teach toddlers Autism Awareness and encourage understanding and acceptance of other children with Autism or other disabilities one book at a time.
Natasha Barber is an ASD advocate and creator of the non-profit Autism Moms Know Safety. She is also the author of numerous children’s books include the Tommy’s Lessons Book Series. She has appeared in numerous parenting blogs, as well as has her own blog in which she shares safety resources and tips to educate and raise autism awareness for those on the spectrum, while also providing solutions and essential tools that can help prevent wandering and elopement for guardians and dependents. Natasha’s autism employment advocacy at General Motors was also recognized with an an Apex Champion Employer Award and Private Sector Employer of the Year from the CAREERS & the disABLED magazine in April of 2018. You can follow her at NatashaBarber.org and AMKS.Life.
Parents of children with autism experience a level of fear and anxiety in moments that are ordinary for other children. For children with special needs, there is always risk. Children with autism are prone to dangers like wandering, and many of these children are also nonverbal. For many families, there is not a single moment of relief.
The designers of AngelSense – parents of special needs children themselves – designed the AngelSense GPS tracker with these special children in mind. AngelSense addresses the concerns of parents with special needs, and with unique technology, the safety of children with challenges like autism is prioritized.
Consider the story of this family, that despite every alarm bell, locked door, and strong supervision, couldn’t always prevent their child with autism from wandering from home or other locations. Emergency services were called if their child went missing, and desperate alerts to the neighbors and teachers were made. Although their child was found safe each time, there was always worry that their child couldn’t be located in time to prevent tragedy. It wasn’t a matter of if, but when, the frantic search for their child would begin again. With wandering tragedies hitting the news regularly, the parents’ fear was palpable.
Then this family discovered AngelSense GPS for autism, and everything changed. It was like another set of eyes and ears that altered the entire scope of the day – from the moment their child left for school to the minute he went to bed at night. It made moments like the day he got off the school bus but never made it to the classroom so much easier to handle. In the shuffle of arriving students, the administrators lost track of this child for no more than seconds, but that’s all it takes. There was no way of knowing if the child had gone inside the building or had wandered off school grounds.
The AngelSense GPS tracker attaches discreetly to the child and is non-removable without the parent’s key. It communicates with an app on the parents’ cell phone. When their child wandered from the premises, AngelSense sent an alert to immediately inform the parents, who activated Runner Mode. In Runner Mode, live updates are given every 10 seconds to guide you directly to your child’s location as they are moving in real time. Luckily, this child was found in minutes rather than hours, completely safe and sound.
Had the child been in the building, the parents would have used a special alarm to help guide them to the child’s location. The parents can use the app’s 2-way voice feature to speak to and calm their child when needed, and to support him from afar. The call is picked up automatically on the GPS device which is secured to the child’s clothing. AngelSense also alerts caretakers to any unexpected stops or late departures, so you would know if your child’s school bus was late.
No other device offers the same freedom to both individuals and families. The AngelSense GPS tracker gave this child freedom to move in the hallways independently, inspiring confidence and improving life satisfaction. They no longer needed a 1:1 aid at school, and their child could learn to navigate familiar places on their own, building his confidence and independence. The family was also able to go on vacation for the first time, enjoying a new experience together without having to worry about elopement in an unfamiliar place. If their child was to wander, they had the tools in their hands to find him quickly and prevent harm.
When a child with autism wanders, it is a life-threatening event. AngelSense saves lives every day. The peace of mind that this family was given is invaluable. The AngelSense GPS tracker does more than offer reassurance to families of children with special needs and freedom to individuals; it has been proven to avoid harmful outcomes and save lives. There is no greater gift than peace of mind and the knowledge that your child is safe, where ever they are. Children with special needs are not always capable of announcing when they need help, but with the innovative technology that is being made available to families from AngelSense, help is always right around the corner.
As a young person, I traveled, spending a lot of time in India and backpacking around Alaska. I figured I’d live in a cabin in the Rockies and spend much of my time hiking, hanging out in nature, and meditating. I even met my husband, Bruce, at a meditation center.
But the truth is, I barely ever have a quiet moment—and I never go hiking. At 46, my life isn’t what I thought it would be. It’s better.
Three years after our daughter Grace was born, I gave birth to our son, Jay. When Jay was about 2-and-a-half years old, Bruce and I started to suspect that something wasn’t right. We thought he should be talking more. He interacted differently with toys—constantly holding them but rarely playing with them.
When Grace was in kindergarten, we talked to a speech therapist at her school about Jay. After having him evaluated, we learned he was, indeed, delayed. When he was 3, we enrolled him in special education.
but that didn’t last long. He had a major regression and lost all speech. He began running around the house screaming and engaging in other behaviors he’d never displayed before.
When Jay was diagnosed with autism, we were devastated and heartbroken. I wanted to hole up in a dark room and cry, but Bruce and I knew we had to pull it together and be advocates for our son. We consulted with a mother of an autistic child who told us step-by-step what to do to get help. We were able to get a significant amount of services for our son because we wouldn’t take “no” for an answer.
We’ve worked hard to give Jay the best possible life, to keep him safe. That’s why we were mortified in 2011 when Jay got lost at his school. Another mother found him alone on the grounds, just inside the gate. She knew Jay and how to approach him. She was able to take him by the hand and escort him to the office. Another time he got lost at camp.
These frightening situations prompted us to found If I Need Help, a nonprofit organization aimed at keeping children and adults—especially those with special needs—safe in potentially dangerous situations.
When we came up with the idea for If I Need Help, Bruce and I were brainstorming; looking for ways to keep people like our son safe in emergency situations. It was then—when we were open and seeking—that this divine idea was able to land.
We created a variety of products—everything from patches to pins, clips to shoe tags— each with a special QR code. When the person is found, the code can be scanned by a smartphone or tablet, or their number can be entered on our website to access pertinent information in an emergency. These products can, quite literally, save lives.
A woman named Denise Carter shared a heartwrenching story on her Facebook page, “And Then They Grow Up.” Denise was driving to McDonald’s with her adult son, Matthew, who has Down syndrome, autism, and is nonverbal. A woman talking on a cell phone ran a red light and hit Denise’s car at 40 mph. Although Denise was incapacitated, she was alert enough to know that her son, while unhurt, wouldn’t be able to communicate anything about himself, including his name.
Denise discovered our company after the accident and told her Facebook followers about our products. Her story, posted on our ifineedhelp.org website, went viral. In just a few days, we had more than a thousand orders and membership on our website quadrupled. I couldn’t think about the magnitude of what was happening. I focused instead on being thankful— and on making our new customers feel special.
I’ve had a lot of sadness about my son’s disability, but my faith has remained steadfast. Through our nonprofit, I believe we’re serving a higher purpose—one I could never have imagined for myself.
At 13, our Jay is a big boy. He just started junior high. He finds joy in blowing bubbles. He loves to run and jump. He enjoys watching and caring for people. He likes to feed me.
But Jay also has a lot of anxiety. We drive around the canyons around our home in Santa Clarita, California, because it’s one of his favorite pastimes. When he’s escalating, I start to chant. While he’s very low verbal, Jay comes into the chant. Before long, he’s peaceful again.
Sometimes when he’s agitated, I’ll have him sit on the couch, put his hands in his lap, close his eyes, and meditate. While he doesn’t stay there long, it changes his entire demeanor. These kinds of experiences tell me he’s a very spiritual young man.
I’ve always felt that at the end of my life, I’m going to say it was Jay who brought me to my purpose in life.
Erin Wilson is cofounder of the nonprofit ifineedhelp.org with her husband Bruce. Their son Jay has severe autism and had gotten lost in the past. Creating If I Need Help has been a labor of love to protect him and others who have special needs.
Its purpose is to disseminate important and useful information to those who work with or care for anyone with special needs via special needs podcasts. One of the biggest problems faced by this group is not only a lack of certain resources, but also the lack of a knowledge base on how to access and use the resources that are out there. Most parents and caretakers of PWSN are forced to reinvent the wheel every time they seek answers about where to look or who to contact to resolve a particular need or problem they have. This page offers a solution to that problem.
dealing with all sorts of topics and issues, from education, to government benefits to housing and almost everything in-between. Many of the special needs podcasts will include guests that come on to share their particular expertise. Every now and then Gilda will also be producing podcasts in Spanish on certain topics. Check out the free podcasts, and then support this important work by becoming a Patron! Here’s the link: https://www.patreon.com/GEspecialneeds
Entrepreneur, producer, director, author…and most importantly, proud mom! If you’re curious, you can find out more on my website at www.gildaevans.com or follow me on social media like Facebook, Twitter and LinkedIn.
If I Need Help makes wearable iD and offers a free Caregiver controlled special needs registry for our loved ones who may wander or need assistance in a critical moment.
Will she be an academic or an athlete? What will his interests be? Will she attend college or start her own business? While these are the questions that parents of most children are asking, as a parent of a child with autism, you may be more concerned with answers to questions like…Will he attend school? Will she get bullied? Or even, will he ever have a friend? How do you help improve your child’s Autism friendship skills?
And as somber as it is, that last question is reality for many parents of children on the spectrum. Autism not only affects learning and development, it also affects one’s ability to interact socially and form friends. If you’ve ever experienced anxiety over approaching a new friend or potential colleague, consider what that would be like if you were unable to read social cues, such as body language, hand gestures, tone of voice and even facial expressions. This is the reality for your child with autism.
With that, your concern regarding your child’s ability to make friends is valid. But fortunately, there are a number of ways you can support your child’s attempts to make friends and even foster an environment in which he or she can do so. Use these tips as a guide to help your child begin developing the Autism friendship skills he needs to establish positive relationships with peers that have the potential to transform into lasting friendships.
And before we start remember you are not alone. You are now part of a giant special needs community. There are therapists, school districts, teachers, aides, support groups, state agencies, health insurance companies, and other similarly affected families to help you in this. Not only will you be connecting to incredibly dedicated experienced talented people to help your kiddo but many of them will become your good friends as well.
Here we go:
Before you can begin to expect your child to want to form relationships with others, you need to help him develop an understanding of what a friend is and what friendships look like. So start with the basics. Help you child “define” what a friend is by sharing qualities you appreciate in friends, such as caring, accepting, sharing interests, etc. You can also have conversations with your child about what a friend is not, asking questions that include, “Do you enjoy being around someone who calls you or others names?” or “Would you rather spend time with someone who’s kind and helps you?” You may even want to engage in role playing to demonstrate different interactions your child may expect when first trying to get to know friends. For example, you may demonstrate how to introduce yourself and ask the acquaintance’s name, and then reversing roles.
Because your child has difficulties with social interactions, it may be unlikely that they initiate conversations on their own, especially in the beginning. Do your best to create opportunities for interactions to practice the “basics” you’ve been working on. If you have a young child, trips to the park, play dates, and other social opportunities are great places to put their Autism friendship skills into practice. Play dates are especially beneficial as you can control some of the variables involved, including location, number of children present, and even activities. If your child is older, look for social groups, clubs, or even teams in which your child can participate. It may take some additional support in the beginning, but these experiences can be invaluable for helping your child develop effective connections.
As hard as it may be to see your child struggling to make friends now, remember that the goal is to help them be able to develop lasting relationships long-term. So instead of expecting a whole group of new friends tomorrow, think about where you want your child to be 5 years from now. And then from there, focus on breaking down the autism friendship skills they will need to reach that goal. This approach also helps you celebrate the “small wins” along the way, which can help keep you both stay motivated toward developing new relationships.
Regardless of how difficult making friends is in the beginning, remember that it is a process that you and your child are both learning together. And don’t get discouraged. Making friends is a lifelong process for everyone that doesn’t ever have to be “mastered” when mutual companionship is the goal.
About the Author:
Caryl Anne Crowne is a media specialist and contributing author for the Aveanna Healthcare Blog. She regularly produces content for a variety of pediatric therapy blogs covering topics such as autism, speech therapy and general medical solutions.
If I Need Help makes wearable iD and offers a free Caregiver controlled special needs registry for our loved ones who may wander or need assistance in a critical moment.
It’s a goal to make sure that neither child feels left out or mistreated, which can lead to isolating feelings. But what if one of your children is made just a bit differently? Talking to your child about their sibling with special needs can be a confusing conversation to have. The discussion requires patience, understanding, and concrete direction to help your child be the best sibling they can be.
Your child with special needs may require a great deal of attention, unintentionally leaving you without much alone time with your other child. Be intentional in actively finding time to speak with your child alone about their sibling with special needs diagnosis. Having a quiet and intimate conversation will create an environment where they can ask questions without feeling as though they’ll hurt their sibling’s feelings. Getting to have rare alone time with you will also aid in making the process feel more supportive and loving. Often times, the siblings of those with special needs feel as though they aren’t allow to voice their frustrations, due to the lack of privacy and expectation to behave as the mature, supportive sibling.
Use this time to help them connect the dots. After all, they spend a lot of time with their brother or sister and have probably noticed some differences in their behavior. Introduce the concept that their sibling faces unique challenges causing differences in their behavior or feelings, the help they require, or way they are treated. If their sibling is autistic and has sensory issues, place emphasis on this connection to their challenge. If they have Down Syndrome, explain why this results in a distinct facial appearance. By connecting cause and effect, you can offer rest to any confusion they may have.
Your child may be too young to fully understand the complexity of their sibling’s challenges to the extent that you do, but this doesn’t mean you can’t build an awareness. Provide them with accessible mental health information that can make their introduction to their sibling’s special need smoother. Read through the resource together and provide examples of your special needs child’s unique accommodations or behaviors as a way of tying this information close to home.
Delve into more detail regarding the cause and effect you touched upon when introducing the conversation. Often times, true acceptance of these behaviors will only come with time as your child matures. Offering information, however, will provide them with context to work towards accepting. In its simplest terms, work to explain the neurological and biological differences that cause their sibling to experience life in a distinct way. Make it known that these distinct characteristics may be difficult for your child and others to navigate but is not something their sibling has control over. This can eliminate resentment down the road that their sibling is ‘ruining their life’ or behaving in ways to monopolize attention.
As the parent, having this discussion will allow you to uncover various emotions your child may be experiencing as they begin and continue their journey with a sibling with special needs. This, in turn, will serve as helpful material for managing your child’s mental health, which may often times fall behind due to the amount of attention their sibling’s challenges require.
When living with a special needs sibling, a child may experience conflicting emotions. On one end, they may feel worried about their sibling and the way they are treated. On the other, they could feel resentful that what they view as ‘normal’ activities or family outings become much more taxing with their sibling with special needs present. They could also feel pressure to be ‘perfect’ for their parents while experiencing anger that the attention from family, teachers, and other resources are focused on their sibling.
Getting the chance to address these overwhelming emotions will remind your child that you are present, care about their feelings within this unique situation, and are always an open resource for them. This sometimes gets lost in translation within the trials and tribulations of having a special needs child. Let your child know that, although their sibling does require a lot of attention and special resources, their needs aren’t forgotten.
As much as you want your child to take on the protective sibling role, this has the potential to quickly lead to resentment. Framing your child’s role in their sibling’s life as that of the protector will place immense pressure on them to transition into a parental figure at a young age. This can lead to more anxiety over needing to be perfect as well as anger towards having to focus a great deal of their life on their sibling.
Refrain from words like “protector” or “role-model” when discussing their part in their siblings life, and don’t set strict guidelines for how they must treat their sibling. You can suggest ways that you’d hope your child would react to specific things that their sibling does, but more often than not it’s better to let your child take the lead. Each child goes through their own process of coping with having a sibling with special needs, and you need to be prepared to let them go through these steps in their own time. Some children may adapt quickly and with great patience. Others may experience embarrassment when their sibling has difficulty in public or anxiety about how to introduce them to their peers, and this may result in them pulling away.
Much of this process depends on maturity. Continue to frame their sibling’s challenge in a positive light, seldom showing frustration in front of your child. Instead, frame their challenges with as much light-heartedness and humor as possible to convey that their presence in your family is not a burden but a unique blessing. In time, your child will adopt this similar mindset and reintegrate their sibling into their life. No child fits into a single box- this you know having a child with special needs. Your other child is no exception, and enabling them the freedom to navigate the information you’ve given them at their own pace can ultimately help build a better relationship with their sibling.
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I am currently in the privileged position of teaching pre-service and current teachers both at University level and in Professional Development courses. To encapsulate what I know into three dot points is somewhat challenging, so I thought about what I wished someone had told me when I began my teaching career. This helped me to define three things I know for sure, which are:
The first job as an educator is to provide a foundation that is firmly set in trust, confidence and knowledge of your students. You need to get to know your students; what makes them who they are and what makes them ‘tick’? When you have this knowledge, you can then cater to their needs, build their trust and confidence in you, which will in turn provide them with trust and confidence in themselves and their learning. I honestly do not believe you can be the greatest teacher you can be without this. In partnership with this premise, is a question to ask yourself: What is the legacy you want to leave? In twenty years’ time, how do you wish to be remembered by your students? I hope the answer is that you want to be remembered as a compassionate, caring teacher who inspired and believed in each and every student.
Secondly, we should NEVER assume what a student can do. It is easy to get caught up in test scores, IQ, performance, reports etc. and forget that we are working with unique individuals. If a student is nonverbal, this does not also mean they are not capable. If a student has a disability, this does not mean they do not have potential. I firmly believe each and every child has potential and possibility and it is us up to us as educators to assist each child to attain their best. When we believe in an individual, it is far easier for them to believe in themselves. Your job is to motivate and provide lots of experiences of success.
The previous point, leads me to the next. Success begets success. I believe that learning is a cycle. When we focus on what students can do, rather than what they can’t do then we provide them with constant feelings of success. This builds confidence, which in turn reinforces ‘risk taking’ in learning, which leads to more success. What evolves is a cycle of successful and success based learning. One of the problems for students who have a disability is that teachers focus upon their deficits, consequently these kids experience ongoing, daily incidences of failure. Making them do what they cannot do over and over shatters their confidence and creates fear around learning. These students eventually develop the mentality that they would rather not try anything, than try and fail. However, if as educators we offer daily experiences of success, then student confidence builds where they are more likely to try new things. When we allow individuals to feel good about themselves, they are less concerned about getting something wrong. This focuses on developing strengths, independence and autonomous learning.
Karina offers Professional Development for educators with Continuing Education Associates (CEA) in the USA and with Teacher Training Australia (TTA) in Australia. She is also an Associate Teacher at Monash University, Australia.
Jazmine Gelfand (specialedlegalcare.com) is a special education attorney who offers education and disability legal representation to the greater San Diego community. Jazmine has been passionate about advocating for children’s education since beginning her undergraduate studies, and she graduated with a B.S. in Early Childhood Development. After enrolling in law school, Jazmine helped create a new student organization on campus, Advocates for Children and Education, which developed several outreach programs to support children’s education rights. She first became interested in the area of special education law after interning with the San Diego Volunteer Lawyer Program’s Education Project. Jazmine also participated in several on-campus clinics, including the Child Advocacy Institute’s Policy Clinic, and the Special Education Legal Clinic, where she represented the rights of low-income students with special needs.
Upon graduating with her J.D. from the University of San Diego School of Law, Jazmine was awarded the 2014 James A. D’Angelo Outstanding Child Advocate Award, as well as the pro bono service award, in recognition of her contributions to San Diego’s low-income community.
Jazmine is committed to providing aggressive legal representation for her clients, while being sensitive to the need to work collaboratively, under a solutions-oriented approach. She is admitted to practice law in all California state courts.