According to the Mayo Clinic, Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops, causing a progressive inability to use muscles for eye and body movements and speech. It occurs almost exclusively in girls. Only in rare cases are males affected.
Symptoms of Rett Syndrome closely mimic the characteristics of Autism. Now, however, individuals can still be diagnosed with Rett Syndrome medically, and may also have a diagnosis of Autism Spectrum Disorder if they meet that criteria. Rett syndrome signs and symptoms include:
Slowed Growth – Brain growth slows after birth. Smaller than normal head size (microcephaly) is usually the first sign that a child has Rett syndrome.
Loss of Normal Movement and Coordination – The first signs often include reduced hand control and a decreasing ability to crawl or walk normally.
Loss of Communication Abilities – Children with Rett syndrome typically begin to lose the ability to speak, to make eye contact and to communicate in other ways. this is also a common attribute of autism so you can see the close similarities.
Abnormal Hand Movements- Children with Rett syndrome typically develop repetitive, purposeless hand movements that may differ for each person. Many children with autism have self stimulating behaviors that are similar to this behavior.
Unusual Eye Movements – Children with Rett syndrome tend to have unusual eye movements, such as intense staring, blinking, crossed eyes or closing one eye at a time.
- Mood Disorders – Children suffering from this medical condition tend to become irritated and agitated easily.
- Physical Issues – Rett syndrome can be accompanied by breathing issues, abnormal curvature of the spine, an irregular heartbeat, and/or seizures.
Rett syndrome progresses through stages and gets worse as it moves through each. the Mayo Clinic and other clinics around the United States have recently been studying this disorder. Follow the links to find out more information about Rett syndrome.
Mayo Clinic Rett Syndrome
The National Organization for Rare Diseases – Rett Syndrome
It is not uncommon to feel sad, less energetic, or even irritated when the days get shorter and the winter months close in on all of us. The winter blues impact about 4 to 6 percent of Americans. Another 10 to 20 percent may have mild SAD or Seasonal Affective Disorder. SAD is four times more common in women than in men. Although some children and teenagers get SAD, it usually doesn’t start in people younger than age 20. Given the prevalence of these feelings here are five steps you can take to combat these seasonal blues . . .
- Stay Active – While it may be difficult to get outside and be active on the coldest days, it is important to keep moving and stay active. Exercise has been proven to reduce symptoms of depression and make you feel better. Walk the mall, do some yoga at home or just follow along to an exercise video. Your mood may lighten and make you feel less trapped.
- Turn Up the Light – Our bodies react to the lack of sunlight during the winter months. Dark gloomy mornings can make our days start off with that same mood, as well. Therefore, turn on lights, or invest in a light box or special lamps that mimic natural outdoor light.
- Eat Smarter – The old adage “you are what you eat” is very true especially when you are feeling down. Certain foods, like chocolate, can help to enhance your mood and relieve anxiety. Other foods, like candy and carbohydrates provide temporary feelings of euphoria, but could ultimately increase feelings of anxiety and depression.
If you are feeling more than just the winter blues, talk to a teacher, counselor or friend about seeking help to get through the winter months. Children with autism and those on the spectrum, struggle with depression commonly so keep an eye on the winter blues so that they don’t continue for months on end.
In our last few blogs we have been discussing transitioning from the tween and teen years into adulthood. Whether a child (or soon-to-be-adult) has the skills to enter college, live independently, maintain a job or do typical self care routines is really dependent on the life skills they have practiced and learned over the years, whether in school, at home or through therapies. Most schools and therapists believe in using the skills in every area and having parents reinforce these skills in the same manner at home. Here is a quick check list of transitioning life skills to practice with your teen who is transitioning.
Life skills are not just checked off on a master list but rather repeated over and over again until it becomes an integral part of the child’s life. Some of the most important life skill include: self care, safety, self-esteem, self-advocacy, self regulation and independent living skills. Each task should be broken down into smaller tasks and repeated, repeated and repeated.
Here, at Advancing Milestones, we have our own series of checklists for transitioning teens. Find ours on our website, here. Our life skills are broken down into the following categories:
- Executive Functioning
- Technology and Consumerism
- Home, Food, Hygiene Related, Transportation and Leisure
- Self-Advocacy, Disability Related
- Medical Health, Mental Health and Sexuality
- Jobs and College
In addition to our lists, here are a few other resources that may be helpful.
Here is a detailed list from the Children’s Administration Division of Children and Family Services – Life Skills Inventory and Independent Living Skills Assessment Tool.
Here is an article with information on College programs and skills needed for Autistic children from the Interactive Autism Network.
The Autism Helper uses visual clues and step-by-step guides to help children learn skills. Read more.
Coming of age can be a bittersweet and anxiety-ridden time for both parents and children. Graduating from high school, finding a job, going to college, paying bills, and living independently are just a few of the major milestones. The list could go on and on. The road to adulthood is probably something parents of children on the spectrum have fretted over since the toddler years, and something children have anticipated for years. Careful planning for this transition should be an important part of the high school years. Let’s take a closer look at transition planning and some resources that will help you.
According the Interactive Autism Network, an unprecedented number of students with autism spectrum disorder (ASD) will leave high school and flood the U.S. adult disability system in the next couple of years. An estimated 50,000 Americans with ASD will turn 18 each year, as a part of “a surge of children” diagnosed in the 1990s. Planning ahead can mean the difference between gaining the right assistance for your adult-child and having to fight to gain access being offered to a growing number of people. Need help with transition planning? There are many resources and toolkits to help you navigate the legal and, sometimes, bureaucratic transition years.
- Talk to your child’s team. Include behaviorists, occupational and physical therapists as well as classroom teachers. This group can help you and your child begin the transitioning process very early in the high school years regardless of whether your child is at a specialty school like Milestones or at a public school.
- Plan for the years after your child turns 21. Students with a disability of any kind are protected by the disabilities act until they turn 21. From there, things get a bit tricky. While your adult-child may be eligible for adult services such as housing assistance, day programs, and career counseling and training, gaining access may be dependent upon funding both locally and nationally. Research what the guidelines are for your area.
- Research Transitioning Planning toolkits and resources with the help of your child’s team. Autism Speaks has a “Transition Tool Kit” that may help. The Arc- Autism Now also has an excellent list of resources and checklists that can help get you started. The Interactive Autism Network has several toolkits to help plan for job training, college or independent living depending upon your child’s trajectory.
Watching your child grow, mature and change can be bittersweet. Watching this evolution in a child who struggles with ASD or autism, can elicit a whole range of emotions. How will typical teenage rebellion look in someone who struggles with behavioral control? What will middle school and high school be like with a child that not only is dealing with hormonal changes but also the social, emotional and sensory issues common in a child with autism?
Research into autism in the teen years and beyond is still in its infancy: “very little is known about the course of ASD through adolescence and into young adulthood,” according to the Interactive Autism Network. Autism is a broad spectrum, and adolescence will affect each child differently. If recent studies are an indication, parents generally can expect some of the following positive changes along their child’s road to adulthood:
- Behavioral improvements across the spectrum. Adults with autism have less hyperactivity and irritability, and fewer repetitive behaviors (such as lining things up) and maladaptive (dysfunctional) behaviors, than children with autism.
- Improvements in daily living skills – such as getting dressed, keeping track of cash or making a sandwich.
Some negative changes may include:
A risk period for the onset of seizures in autism, although most teens do not develop epilepsy.
Childhood sleep problems may persist into adolescence, when insomnia and daytime sleepiness become the biggest concerns. Sleep changes are very common in typical teens but can be exaggerated in children with autism.
- Anxiety disorders may increase or develop during the teen years. Be aware of anxiety symptoms and work with team members and therapists to reduce anxiety in the classroom and at home.
- The gap between the students with autism and their peers widens in something called “executive functioning” during the teen years. Trouble with flexibility, organization, initiating activities and working memory are commonplace with executive functioning disorders that worsen or develop during the teen years.
Further Resources to help your teen in school.
Autism Speaks: Helping Teens with Autism Succeed in High School and Beyond
Psychology Today –Thirteen Things Parents of Teens with Autism Need to Know
According to the Family Caregiver Alliance and National Center for Caregiving, approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. This may be physical, emotional or mental support for a special needs child, as we see often in our field. Caregivers, however, often forget to care for the person who may need it the most – themselves.
Caring for a loved one, whether it is a close friend or a family member can be exhausting and emotionally and physically draining. The sleep deprivation, worry, stress, and poor eating habits because you are focused on caring for someone you love can cause you to become ill yourself. How ironic, isn’t it?
Here are ten New Year’s Resolutions to try this year if you are a caregiver.
- Accept Help – We know that no one does it quite like you do- but accept help whenever you can and do it without guilt. Be prepared with a list of ways that others can help you, and let the helper choose what he or she would like to do.
- Join a Support Group. There are millions of caregivers all over this country who know what you are going through and the stress that you feel. Talking is excellent therapy and a stress reducer.
- Do What You Can. You can not do everything without sending yourself to the hospital. Dole out jobs that may seem small but anything to take the burden and responsibilities off of you the better.
- Set a Routine. Everyone loves routine. Setting one can help your family member understand what is coming next and aid in transitions.
- Visit the Doctor. You probably have several doctor or therapy sessions for the person you are caring for, but, also, take care of yourself. Don’t skip your own appointments or self diagnose an illness.
- Connect Socially. Getting out as a caregiver might seem like a huge luxury but even connecting on social media may help.
- Recognize your Limitations. Everyone has a breaking point. Yours may be not getting enough sleep or not having enough help. Talk to other family members about your limitations and be honest.
Learn about the Family and Medical Leave Act (FMLA). If employed, take advantage of the Family and Medical Leave Act. This act requires employers with 50 or more employees to provide up to 12 weeks of unpaid, job-protected leave for employees who need time off to care for a seriously ill family member.
Get Outdoors. Even if it’s only a few minutes the fresh air and new perspective can do a world of good. If you have time, take a walk to keep yourself healthy.
- Get Sleep. Strive for a minimum of seven to eight hours of consecutive sleep in a 24-hour period. Nap when your loved one naps.
Attention Deficit Hyperactivity Disorder, also known as ADHD is a brain disorder marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development. Recent surveys published by the Centers for Disease Control show that approximately 11% of children 4-17 years of age (6.4 million) have been diagnosed with ADHD as of 2011. The American Psychiatric Association states in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) that 5% of children have ADHD1. However, studies in the US have estimated higher rates in community samples.
Knowing these statistics, how does a parent, caregiver or teacher identify the signs and symptoms of ADHD? Let’s look at some of the typical symptoms that may raise a red flag and warrant an evaluation by school or doctors.
Trouble Focusing (The attention component of ADHD.) – It is normal for children to have trouble focusing and behaving at one time or another. However, children with ADHD do not just grow out of these behaviors. The symptoms continue and can cause difficulty at school, at home, or with friends. This trouble focusing may take different forms such as:
- Overlooking or missing details on school work on in other areas
- Having problems sustaining attention in tasks or play,
- Not seem to listen when spoken to directly
- Not following through on instructions and fail to finish schoolwork
- Having problems organizing tasks and activities, such as what to do in sequence
- Avoiding or disliking tasks that require sustained mental effort
- Losing things necessary for tasks or activities
- Easily distracted by unrelated thoughts or stimuli
Trouble with Hyperactivity – The Diagnostic and Statistical Manuel IV defines a child as hyperactive if they have six or more symptoms of hyperactivity-impulsivity and are present for at least six months. These include:
- Often fidgeting with or taps hands or feet, or squirms in seat.
- Often leaving seat in situations when remaining seated is expected.
- Often running about or climbing in situations where it is not appropriate (adolescents or adults may be limited to feeling restless).
- Often unable to play or take part in leisure activities quietly.
- Is often “on the go” acting as if “driven by a motor”.
- Often talking excessively.
- Often blurting out an answer before a question has been completed.
- Often has trouble waiting his/her turn.
- Often interrupts or intrudes on others (e.g., butts into conversations or games)
If you suspect that you child has ADHD talk to his/her teachers or pediatrician and arrange for a more formal evaluation.
Let’s face it, we all have bad days every now and then. Usually we deal with the mood and move on. Most of us may even know and understand what caused the mood to begin with and how to avoid it in the future. If you have a child or teen with autism you may have to learn a whole new set of cues to help you understand situations where behavior becomes a problem.
Going out or encountering new stimuli, no matter how much you think you child may enjoy it, can be challenging. Planning in advance can mean the difference between a meltdown or avoiding unwanted behaviors. Here are a few suggestions we found online from parents who have been through this before.
- Be aware. Many parents know what stimuli whether visual, auditory or other trigger unwanted behaviors. Try avoiding situations that may cause anxiety and stress. For example, your child may enjoy keeping you company on outings but gets tired in the early afternoon, then plan your events for mornings or after a nap. Keep in mind this means that you may need to plan your day around stimuli that may cause problems but it may be worth it in the end.
Make Expectations Clear – You’ll get better cooperation if both you and your child are clear on what’s expected. Sit down with him/her and present the information verbally.
Have Options – If your child has meltdowns or is rude to someone in public, you have a few different options. You may need to experiment to determine what works best for your family. Removing the child from the situation may work best but you may also want to consider other options. Some parents have the child calm down and apologize. Even others keep a card in their pocket that explains that their child has autism. Still others only visit outing locations where they know people who are understanding and sympathetic.
- Talk to the Team – If your child has already been diagnosed, you may want to decide with his/her team of specialists including PT, OT and Behavioral Therapists what behavior modification you will use. If you are all on the same “page” it may make heading off unwanted behaviors easier.
- Avoid Transitioning without Warning – Transitions can be hard for kids, especially in the middle of something they are enjoying. Having transitional warnings gives children the chance to find a good stopping place for an activity and makes the transition less fraught. Tipping your child off that a transition is coming can ward off meltdown behaviors.
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.
The holidays are supposed to be fun and exciting as we all anticipate the festivities, decorations and visits with friends and family. Add to that the much anticipated presents, overabundance of lights and visual stimuli and major heaps of overstimulation and whoa . . . . things can get overwhelming quick.
Holidays can be fun and joyful but they can also be stressful and overstimulating particularly for children with autism. Here are some helpful strategies to lessen your child’s anxiety and increase your family’s enjoyment of the holiday season:
- Keep Routines – Try to minimize disruptions to routines as much as possible. Try using visual stories and checklists whenever you need to vary from the routine of the day to reinforce positive behaviors and keep all family members on the same page. Experienced parents suggest going through a timeline of events on days when the schedule changes so there are no surprises to set off anxious behavior.
- Decorating – As with all holidays, decorate gradually so that everything is not changed at once. Allow your child to be a part of the decorating and have some input to how things will be decorated. You know your child best, so avoid stimuli that may be too much for him/her such as flashing lights, musical decoration or scented items that may be too overwhelming.
- Parties/Gifts and Special Moments – Again preparation is key to lessening the anxiety about opening presents, going to parties or having relatives around. It can be frustrating and stressful to see gifts that can not be opened yet so decide ahead of time if gifts will wait until later or be allowed under the tree until the last moment.
- Shopping – Honestly, going to stores and malls during the holiday season is stressful for even the hardiest among us. Don’t be surprised if your child can not handle all the stimuli out shopping. If you do need to get out there, try early in the morning or at off peak times.