Category Archives: Caring for children with autism

Learn the Signs of Autism and Take Action

As a parent you never want to believe that there may be a problem with your precious bundle of joy. If you do have an inkling that there may be an issue, however, autism experts say that you should act sooner rather than later. When it comes to autism, catching it early, ideally by the age of eighteen months, can make a huge difference. Early intervention and treatment can reduce the effects and help your child learn, grow and thrive. 

As a parent, or even a caregiver, you are in the best position to spot the earliest warning signs. If you are the primary caregiver, you observe your child more than anyone else. Your observations and experiences can be invaluable when it comes to early diagnosis and subsequent treatment of autism or any of the autism spectrum disorders. The key is to educate yourself so you know what’s normal and what’s not and then trust your gut. If you think something isn’t quite right take action. Start with your pediatrician and from there ask for an evaluation or a specialists if you feel there is still a problem. 

Recent research conducted by Autism Speaks confirms that appropriate screening can determine whether a child is at risk for autism as young as one year. While every child develops differently, we also know that early treatment improves outcomes, often dramatically. Studies show, for example, that early intensive behavioral intervention improves learning, communication and social skills in young children with autism spectrum disorders (ASD).

The M-CHAT screening (Modified Checklist for Autism in Toddlers) can help you determine if a professional should evaluate your child. This simple online autism screen takes only a few minutes. The M-CHAT is validated for screening toddlers between 16 and 30 months of age, to assess risk for autism spectrum disorders (ASD). The M-CHAT can be scored in less than two minutes. Scoring instructions can be downloaded from http://www2.gsu.edu/~wwwpsy/faculty/robins.htm or www.firstsigns.org. Children who fail more than 3 items total or 2 critical items (particularly if these scores remain elevated after the follow-up interview) should be referred for diagnostic evaluation by a specialist trained to evaluate ASD in very young children.

Safety Devices for Families with a Child on the Spectrum

As parents we all worry about our child(ren) getting lost, wandering off or just getting into some sort of predicament. The concern is felt even more so by parents of special needs children such as children on the spectrum. Most alarming are the number of cases of children on the spectrum who wander. Here is a great source of devices that can help you have peace of mind and the feeling that you are keeping your child safe.

  • Child ID Cards – These kits can be found online or your child’s school may have access to them. Many kits contain items such as: DNA & Fingerprints on file,  3 ID cards (1 for the child, one for parents with the Medical Release card, and one for school/teacher).
  •  Shoe ID Tags– Many children may lose an ID tag so these shoe ID tags stay connected to the shoe of the child and contain all pertinent information that will be used to return a non-verbal child home.
  • AMBER Alert GPS – AMBER Alert GPS keeps families connected by enabling instant one-touch contact between kids and caregivers. A child can quickly, at the touch of ONE-button, speak with & receive calls from a caregiver, trigger a precise GPS location, and issue an email SOS alert to pre-selected persons of trust. Built-in safety features can be customized to trigger an alert including safe zones, low battery, breadcrumb tracking, speed limit, and proximity to homes of registered sex offenders – all of which are accessible via a secure online dashboard, mobile app or email.
  • Care Trak – The Original Law Enforcement Rescue Program that electronically tracks people with Alzheimer’s who wander and special needs kids. Sheriffs, Police, Fire Departments, SAR Teams, etc. use Care Trak to quickly locate at risk individuals.
  • The Safety Sleeper – The Safety Sleeper has a zippered enclosure that keeps your sleeper safe in his/her own bed and prevents them from unattended wandering. This gives your sleeper the freedom to wind down and go to sleep on their own, while giving you the peace of mind that your child is safe.

For more devices that will help find or discourage your child from wandering check out these 10 Resources And Devices For Wandering Children With Autism.

Changing Schools with a Child with Autism

With summer quickly drawing to a close many families are focusing on stocking up on needed school supplies or possibly a new outfit or two. Still others may be trying to fit in one last get-away before the school year begins. For parents and children who are transitioning to a new school,  however, there is a whole different type of preparation going on. Adjusting to the start of another school year can be a difficult one for any student but, if you are a parent of a child on the spectrum, you know that there are transition issues you will need to prepare for long before the end of summer. Here are some suggestions from experts at Child Mind Institute and Children’s Hospital to make your family’s transition to a new school an easier one.

  • Visit the New School – Parents with children on  the spectrum know that stress from the unknown can be unbearable for their child. Find time to visit the school and meet key players in your child’s education experience. Find the bathrooms, lunch room and the area that your child will spend the most time. Take pictures (or videos) when possible to review later.
  • Talk about the New Schedule – Change, especially unexpected change, can be extremely stressful for children with Autism Spectrum Disorder (ASD). Children with ASD often prefer to have a sense of structure and to know what to expect during the day and what activity they will be doing and when. Find out from teachers and administrators what the course of the day will look like and use story boards, charts or whatever works for your child so he/she can start to learn the new schedule of the day.
  • Use a Count Down – For many children who are transitioning to a new school knowing how much time before the big change is important. Start some sort of countdown either on a calendar or on a device they use often such as a laptop or iPad.
  • Explain Why – For many children on the spectrum they want to understand why they are leaving the comfort of their old school and changing to a new one.  Whether the change is to a program that can assist your child or from a special education school to a mainstream school – explain your thinking and how the new school will benefit your child.
  • Be Positive – While you as a parent may have just as many nerves and anxiety about the change, you will want to be positive about the transition. Talk up the great things about the school.  Remember to be genuine. No need to overboard but merely accentuate the positive.
  • Brief Teachers and Therapists – While this may seem like a no-brainer, make sure you meet with your child’s team and each teacher that he/she will have throughout the course of the day.  Your child’s special education teacher can help you communicate the needs of your child clearly.

Transitioning Back-to-school

No one likes change. Change can be hard. There is no group that struggles with change more than children who are on the spectrum. Add to that change from the relaxing, lazy days of summer to the busy, responsibility-rich school days and there is a recipe for disaster. The slower, more relaxed routine of the summer days is soon to be replaced with the routine of school, homework and lots of things to do. How can you help transition your child back into school mode as gently as possible?

Let’s look at some tips from the experts at Autism Speaks and the May Institute.

  • Start a count-down calendar well in advance so your child knows that school is a certain number of days and weeks away.
  • Maintain a regular bedtime routine whenever possible throughout the summer. If that isn’t possible, then plan a week or more in advance to firm up the school-time bedtime routine and time.
  • Visit your child’s new classroom and if at all possible check in with his/her teacher. If your child has already met the teacher, talk about the teacher’s name and the classroom. Talk about what he/she will learn this year.
  • Update all health forms through the school nurse or secretary.
  • Learn the new routine and practice it. Many children on the spectrum benefit from transition books with picture and explanations of the new situation. For instance, having a picture of his/her new classroom or teacher may help immensely. Take a picture of the drop off location and where his/her personal items will be kept. (locker/cubby)
  • Review your child’s IEP.  Make sure you know what accommodations and changes have been made for this school year. Alert your child to anything that may be different.
  • Talk, Talk, Talk. One of the most important things you can do is to talk to your child about fears, anxieties and how the new school year is going. Check in with them daily especially at the beginning to make sure nothing unexpected has come up.
  • Prepare yourself. Your child may not be the only one who is anxious about the start of a new school year. Prepare yourself by talking to the school administrators/school counselors to express any of your concerns. If you are calm it will go a long way in allaying any of your child’s anxiety.

Autism and College

Leaving high school and navigating through the social, emotional and educational maze known as  college is complicated for everyone. But if you’re a student on the autism spectrum who is about to enter higher education for the first time, it might be a little bit more complicated for you. Many autistic teens out there have the intellect to make higher education a breeze, but are lacking in some of the social, time management and organizational skills they’ll need to make the grades they deserve. Luckily, there is a wide range of colleges out there stepping up to offer support and help for students with autism spectrum conditions.

Regardless of where a student falls on the spectrum, there are college programs designed for him/her.  Whether the student/parents have concerns about navigating college social life, getting appropriate accommodations, getting to places on time or dating and relationships, there are resources that can guide you and your young adult along the way. Many post-secondary institutions around the country offer training and certification programs as well as individualized and group support services. Here are a few to look into further depending upon the needs of your child.

  • Mercyhurst University has a unique program called Autism/Asperger’s Initiative (AIM). This pioneering program is designed to help students overcome the kind of challenges that most students with autism face. AIM concentrates on honing particular skill areas. such as social skills or executive functioning skills.
  • Drexel University Autism Support Program: Drexel has one of the most comprehensive autism support programs out there for college students today, aiming to create a more diverse experience that includes those with not only cultural differences, but neurological ones as well. Through DASP, students can find peer mentor training, support from advisors, as well classes and programs to help them better adapt to life in college. Additionally, students can work to become advocates for the condition on campus and eventually pay their help forward by supporting successors.
  • Boston University Supported Education Services: Free to anyone attending BU, this program offers individualized assistance with building academic skills and supporting students with autism disorders during their time in college. It can be a great way for them to get help in adapting to college life and finding the motivation to seek out social interactions. Additionally, BU is a great place to follow the latest research being done on autism today, and students in the life sciences may even be able to take part in making discoveries that could change how the medical field sees the spectrum.
  • University of Connecticut SEAD Program: The goal of this program is to help students and their families make the transition to college a smooth one, assisting the former in learning more about their disability and how to function as an independent adult. It is open to any student accepted to the university with an autism spectrum disorder and is available at varying levels of intensity. Participants receive access to support from staff, weekly meetings and a range of materials that can make the college experience a whole lot less intimidating.

Great Summer Reading for ASD

Summer is one of the only times of year that I seem to get to catch up on all the wonderful books that may help organize my life as a mom of a special needs child.  I usually keep a running list of books that I would love to get to read but never have the time between driving to therapies and keeping my family running on a day-to-day basis. My list usually grows after each annual celebration of Autism Awareness Month every April.  Here are a few books that I have found that come highly recommended from various sources such as: Scholastic, Autism Speaks, and New Horizons Professional ABA Services.

  • Roar the Little Dinosaur Series by Hazel Reeves – This series is meant for children with autism. The author, a mom with a daughter who has autism, wants children to know it’s okay to do things differently.
  • Understanding Samantha: A Sibling’s Perspective of Autism by Dustin Daniel is a great book geared toward siblings especially older children who are trying to deal with and understand their sibling’s sensory issues.
  • Leah’s Voice by Lori DeMoniais another great find for siblings to deal with understanding certain common behaviors of siblings with autism as well as a wonderful resource for teaching siblings and friends about inclusion and acceptance.
  • The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents) by Elizabeth Verdick and Elizabeth Reeve The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents)M.D. is a friendly, thorough handbook for children on the autism spectrum, plus their parents. This book addresses the big questions kids ask and provides strategies for communicating, making friends, and succeeding in school. It includes sections on brain and body basics, symptom management, exercise, diet, hygiene, relaxation, sleep, toileting, and “stims.”
  • Autism Answer Book: More Than 300 of the Top Questions Parents Ask
    by William Stillman is a comprehensive guide to autism and all the questions friends and relatives will have once a diagnosis has been given.
  • Essential First Steps for Parents of Children with Autism: Helping the Littlest Learners
    by Lara Delmolino, Ph.D., BCBA-D and Sandra L. Harris, Ph.D. is a great resources for parents beginning the journey of diagnosis and treatment for their child.
  • 1001 Great Ideas for Teaching & Raising Children with Autism or Asperger’s: Expanded 2nd Edition This book should be required reading for all those who love, work, live, and care for children, especially those with autism spectrum disorders (ASD).
  • The Thinking Person’s Guide to Autism Edited by Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham and Carol Greenburg. Fifty-five essays written by  contributors from the autism community in all walks of life. This collection of stories was written by autism parents  about the ups and downs they experience every day. Some are written by professionals who care for and counsel autistic children and others are by autistics themselves who bared their souls so others will understand.

 

The What and Why of Stimming

Believe it or not, all of us do some form of self stimulation throughout the course of the day whether it is tapping a pencil, chewing on nails, cracking knuckles, twirling hair during a movie or rocking when tired. Self Stimulation, or stimming for short, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders. Parents whose children are on the spectrum are probably well aware of the unique stimming activities of their child.  For those of you who are looking to understand this behavior better here are a few pieces of information to help you gain insight into the “what and why” of self stimulation.

What are common “stimming” behaviors?

Here are some stereotypical stimming behaviors.(Source: North Shore Pediatricians)

  • Visual: Staring at lights or ceiling fans; repetitive blinking; moving fingers in front of the eyes; hand-flapping, gazing at nothing in particular; tracking eyes; peering out of the corners of eyes; lining up objects; turning on and off light switches.
  • Auditory: Vocalizing in the form of humming, grunting, or high-pitched shrieking; tapping ears or objects; covering and uncovering ears; snapping fingers; making vocal sounds; repeating vocal sequences; repeating portions of videos, books or songs at inappropriate times.
  • Tactile: Scratching or rubbing the skin with one’s hands or with another object; opening and closing fists; tapping surfaces with fingers.
  • Vestibular: Rocking front to back; rocking side-to-side; spinning; jumping; pacing.
  • Taste: Placing body parts or objects in one’s mouth; licking objects.
  • Smell: Sniffing or smelling people or objects.

Many parents of special needs children seek to stop the behavior but the real goal should instead be understanding the reasons why this behavior is happening. Instead of stopping the stimming (which could be quickly replaced by another type of stimming) parents and relatives (and teachers) should look at the motivations behind the behavior in order to understand the needs of the child better. For example there are several hypotheses and known causes for stimming:

1. Overstimulation – stimming can help block out excess sensory input. Is there too much sound, lights, people, smells?
2. Understimulation – stimming helps provide extra sensory input when needed. Does the child need to be engaged?
3. Pain reduction- repeated banging of the head or body actually reduces the overall sensation of pain.  One hypothesis is that stimming causes the release of beta-endorphins in the body, which then causes a feeling of anesthesia or pleasure.
4. Management of emotions – both positive and negative emotions may trigger a burst of stimming.  We’ve all seen physical reactions to joy or excitement, such as jumping or hand-flapping.  Frustration or anger may intensify a stim to the point that it becomes destructive.

5. Self-regulation – some stims serve the purpose of soothing or comforting.  Many infants learn to suck their thumbs to relax themselves.

Why Special Needs Parents Need a Break – But Never Take them.

Summer is in full swing and the kids are probably out of school and in camp or daily activities. Wouldn’t now be a great time to take a much needed break? Why is giving yourself a break so hard for many parents?

Parents are responsible for a lot!  There’s scheduling of activities, planning and making of meals, health, exercise, socialization and the list goes on and on. In fact, it seems like the list never ends. Ever. All parents have the responsibility for caring for a little human life.  But parents of children with autism know that caring for a special needs child requires a little extra. Every detail must be accounted for and the planning and readjusting of the schedule seems to be endless.

Remember that self-care is actually just as important as caring for your child. We want to give all of ourselves to our children. We want to be everything and comfort them and meet all of their needs at all times. We can and we do. But all of this can be mentally, physically and emotionally exhausting. For these reasons,  finding a little time for yourself is even more important.

While no one solution will work for every family maybe one of these suggestions will work for yours.

  • Research a play center that has designated times for special needs children who may have sensory, communication or socialization issues.
  • For longer breaks research and use summer camps that are designed for special needs children. Knowing that counselors understand the special needs of your child can make being apart a little easier.
  • Invest support services meant for families like yours. There are support agencies for special needs families all across the world. They give families/caretakers necessary breaks away from life, or they can even help with everyday support, depending on the level of need. The workers are all experienced, professional people who know how to work with your children!
  • Find a babysitter through a service that has specially trained employees that can meet the needs that you have.
  • Ask for help from extended family members.
  • Another option that families enjoy is respite care offered through parent “co-ops.” This is when families of kids with special needs take turns watching each others kids. For example, you can take someone else’s child for one day or evening a month, and that person can do the same for you. Support groups for families with your child’s condition are a good place to meet other families.

Social Thinking with Michelle Garcia Winner

Here at Milestones we work toward building social skills and nurturing the ability to take another person’s perspective and see their point of view. This skill is not an easy one to understand or acquire but, with the help from Michelle Garcia Winner’s Social Thinking, we are making great strides in this area. In case you are looking for a quick overview of her work on Social Thinking, here is a synopsis of her work.

Who is Michelle Garcia Winner?

Michelle Garcia Winner is a Congressional-award winning speech-language pathologist who specializes in treating students who are experiencing social and communication challenges. The Journal of Autism and Developmental Disorders published research supporting her Social Thinking approach for high-functioning autism and Asperser syndrome and her methods have assisted students with other diagnoses, such as ADHD, and those who have no diagnosis.

What is Social Thinking?

Social thinking is something that most of us take for granted. It is generally an intuitive process that allows us to consider the points of view, emotions, and intentions of others. In neurotypical people, social thinking is hard-wired neurologically at birth and learned intuitively from infancy. Children with autism spectrum disorders do not intuitively learn social information the way neurotypical children do. For those with ASD and related social learning challenges who are “higher functioning”, we have to cognitively teach them how to think socially and understand the use of related social skills.

How Does Social Thinking Work?

The Social Thinking treatment approach requires students to learn to recognize when they and others are expected to think socially, and to respond with specific behaviors based on what they know about the people, the situation, and the implied expectations. We use social thinking and related skills not only when we are interacting, but also when sitting quietly in the presence of others, social problem solving, etc. This type of thinking is used in all aspects of life – at play, in the classroom, with social relationships, at work, and in the community.

How Can You Learn More about Social Learning?  There are many resources out there including conferences, books and internet sources.  Michelle Garcia Winner’s site can be a great help in learning more about this methodology.

Safety for Wondering Children

He was there one minute and gone the next. You have looked everywhere and no one has seen your child. What do you do? Where do you start? Have you prepared for this moment?

It is a parent’s worst nightmare – a child that can not be found. For parents who have children that wander, the fear is all consuming. A  2012 study found in the Journal of Pediatrics on the behavior of wandering, warns that parents of autistic children need to be even more aware and prepared for the possibility of this occurrence.  This study confirms what many parents know well: wandering by children with autism is common, dangerous and puts tremendous stress on families. Here are some tips and resources to prevent wandering and that gut-wrenching feeling that your child is gone.

Wandering Stats-

  • Nearly half of children with autism engage in wandering behavior
  • Wandering occurs across all settings, under every type of adult supervision
  • Increased risks are associated with autism severity
  • Half of families report they have never received advice or guidance about wandering from a professional
  • Accidental drowning accounts for approximately 90% of lethal outcomes

 

Prevention Tips –

  • Start at HomeSecure your home as much as possible to prevent a child from leaving your yard and home. Some methods that Autism Speaks recommends includes: installing secure dead bolt locks that require keys on both sides, a home security alarm system, inexpensive battery-operated alarms on doors, placing hooks and eye locks on all doors above your child’s reach, fencing your yard, adhering printable STOP SIGNS to doors, windows and other exits, etc.
  • Consider a GPS Device or ID Bracelet – The technology is out there so we might as well use it to help keep our children safe. Project Lifesaver or LoJak SafetyNet services can provide tracking devices for children who are at high risk for wandering. Talk to your local police department about what might be available in your area. Medical ID bracelets can be a lifesaver as well. It can include your name, telephone number and other important information.
  • Inform Others – Let your neighbors, police, fire and EMT services know about your child. Knowing your neighbors can help reduce the risks associated with wandering. Informational handouts should include all pertinent information and be copied and carried with caregivers at all times.
  • Teach your Child to Swim – With accidental drowning accounting for approximately 90% of lethal outcomes, swimming lessons have become more important than ever for children at high risk for wandering.