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.
Occupational therapy, known as OT, is designed to help children and adults acquire (or regain) the skills needed to perform the activities—or “occupations”—of daily life. Everyday life activities could include things such as social interactions and communication with teachers, parents, siblings and friends. These interactions can be complicated when a child or young adult has the neurodevelopmental disorder autism. Occupational Therapists are often part of a team of therapists that include: physical therapists, speech and language therapists and psychologists. As a team, this group can evaluate the needs of a child on the spectrum and where the therapy should focus its intervention plan.
Creating an Intervention Plan
One of the first things an OT will do is create an intervention plan after observing the student and gaining input about the child’s relationships, eating, self-care, and daily living skills from teachers, and parents. Along with the rest of the therapy team, an OT will set goals regarding one or two top priorities that address the most immediate and important issues. Once the goals have been set the OT practitioner may decide on the method to achieve that goal such as modifying the environment or engaging in one-on-one therapy. Each student is unique and thus the plan should also be unique in how to move forward with social interaction, communication and behaviors.
Our students at Milestones have usually been enrolled in previous public or private schools where they have not thrived because the therapy component was not embedded into the classroom and way of life. Milestones uses an eclectic curriculum to help our students master concepts. Some curricula that we use include: the Zones of Regulation, Michelle Garcia-Winner’s “Social Thinking,” and extensive Emotional Regulation.
In addition to using the curriculum to foster social and emotional skills, Occupational Therapists may need to foster better skills with gross or fine motor control to be successful at everyday activities and life skills. OT practitioners also help with sensory integration. Overall an OT function is to identify, develop, or adapt work and other daily activities that are meaningful to enhance the individual’s quality of life.
The lights are too bright.
Clothes are too itchy.
People make too much noise.
Everything smells funny.
Food with weird textures and flavors are off the menu.
Do these statements sound familiar? If you have a child with sensory sensitivities then you know that environmental stimuli, such as noise, light, clothing, textures or temperature can make life uncomfortable difficult to deal with – to say the least. Children and adults with a Sensory Processing Disorder (also called Sensory Integration Dysfunction) can be so severely affected by their sensory preferences that it interferes with their normal, everyday functioning. Sensory issues are usually defined as either hypersensitivity or hyposensitivity to sensory stimuli. This means that a child may over respond to a stimuli or under respond to a stimuli.
Many children and young adults who are on the Autism Spectrum have trouble integrating sensory input. Their senses – sight, hearing, touch, smell and taste – take in either too much or too little information from the environment around them. Types of sensitivities depend on how your child reacts to the environment. The following are included in the sensitivities experienced by people on the spectrum.
- Taste – People who have taste sensitivities experience food in a different way. He/she may only like certain colors, textures, or temperatures of food.
- Sight – Vision sensitivities may include an inability to process bright lights, certain colors or patterns and too much visual stimuli going on around them.
- Touch – This sensitivity revolves around the feel of objects: either wanting to touch something or being bothered by how an object feels such as a tag in an article of clothing.
- Sound – A sensitivity to sound may include an aversion to loud noises or certain types of sounds.
- Smell – A child with this sensitivity may smell everything or complain about certain smells.
- Sense of Position – People with this sensitivity may seem to throw themselves across someone or step on a person’s toes or stand too close to another person.
- Pain – A person with this sensitivity may ignore injuries or have a delayed response to injury, or he/she might overreact to little hurts.
These are just the more common sensitivities that ASD people deal with on a daily basis. Helping a child or adult with these sensory difficulties will really depend upon what the sensitivity is. For example, a person with sound sensitivity may find comfort in wearing headphones or finding a quiet space to do work. Occupational therapists are trained to help children deal with their environment, including coping with sensory sensitivities, staying on task and developing motor coordination and balance.
As many as 1.5 million Americans today may be affected with autism. The three core difficulties that face this group include issues surrounding: social interaction, communication, and repetitive behaviors. In addition to these difficulties are problems with motor skills including posture, coordination and motor planning. According to Skills for Action, recent studies show that movement difficulties are very common in children on the autistic spectrum, and, importantly, poor motor skills are associated with greater difficulties with social communication.
Throughout each day many of us take for granted the motor skills we use constantly. For example, while writing this blog I am typing, sitting straight in my chair and holding my head correctly to see the screen and keyboard. Someone with ASD and motor skills difficulties may not be able to do this without years of practice and continued therapy. Simple movements of everyday life can take time and practice to control.
Dyspraxia is a general term used to cover a range of difficulties affecting the initiation, organization and performance of movements. It appears to involve problems with the brain’s ability to process information, which results in messages not being fully transmitted to the body. According to Growing Minds Autism Programs, many children with autism spectrum disorders show well-developed motor coordination and dexterity. However, there are numerous others with significant difficulties in movement and motor planning. Among this group, there are differences in the form that dyspraxia takes. The various forms of dyspraxia can exist together or separately.
Helping your child overcome motor difficulties may include therapeutic activities specifically designed to improve motor functions. In some cases, the child may excel in gross motor with significant impairments in fine motor, or vice versa. Some may have impairments in both areas. Each treatment plan needs to address the specific needs of each child. Usually, the therapeutic approach breaks down each motor skill into small steps that are mastered slowly. Once each is mastered, then the student moves on to the next goal. Repetition and home support becomes part of the process for goals to be achieved. Talk to your child’s physical and occupational therapist about what their motor skills goals are so you can help encourage and reinforce at home.
Teachers, classmates, administrators, and parents can quickly identify the restless students in the class. They shake their leg, tap pencils, wiggle around and can be a general disruption to the learning in the classroom. The student who is fidgeting is also hindering his/her own learning due to a lack of concentration and short attention span. Fidgets can be great self regulation toys that can help with focus, attention, calming, and active listening.
According to Special Needs Resource online, research on fidgets shows that if movement can be directed, it can enhance learning. Furthermore, movement is essential for learning because the learner is required to use both the left and right hemispheres of the brain. Fidgets and sensory balls for calming and alerting can also promote focusing and concentration, decrease stress, increase tactile awareness of fingers/hands (through proprioceptive input), and keep fidgeting fingers busy! The Therapy Shoppe for Occupational and Physical therapists also states that fidget toys can also provide a fun way to strengthen hands and “warm-up” fingers before handwriting activities and fine motor skill tasks.
There are a variety of fidget toys depending upon the needs of the student and/or teacher. For example, there are calming toys, silents fidgets so as not to distract classmates, chewing fidgets for the orally focused students, alerting fidgets that help with self regulation, and tactile fidgets that can help with students who need to keep their anxious hands busy.
Fidgets are extremely easy to find online and are affordable, especially since many people lose fidgets or need several in different locations around the house or at school. In addition to research confirming the importance of movement and sensory input while learning, learning is enhanced when fidgets are introduced. For example, one case study that was conducted in a sixth grade classroom in Georgia showed growth in scholastic achievement when the stress balls were implemented. The average writing score of the class increased from 73% without stress balls to 83% with the use of stress balls. In addition, the student with a medical diagnosis of ADHD showed the most progress with an increase of 27% on a writing sample (Stalvey & Brasell, 2006).
Resources for Fidgets
- Therapy Shoppe (#1)
- Therapy Shoppe (#2)
- Trainers Warehouse
- e-Special Needs
- Tangle Creations
- National Autism Resources
Anxiety is fairly common and a normal response to real or perceived threats. Feelings of worry and tension, along with physical symptoms such as a racing heart, sweating or trembling are common characteristics of anxiety. For children and young adults on the spectrum this is a real and serious problem. Disabling anxiety can take the form of one or more disorders, including panic disorder and phobias.
According to Indiana University at Bloomington, many children with autism spectrum disorders (ASD) will receive another diagnosis at some point in their development. In a 2008 study, seventy percent of a sample of children with ASD ages 10 to 14, had also been diagnosed with another disorder. Forty-one percent had been diagnosed with two or more additional disorders (Simonoff, et al). These additional disorders, or comorbid diagnoses, can, at times, be extremely debilitating for individuals with autism spectrum disorders. The most common types of diagnoses are those related to anxiety. Researchers concluded that about 40% of children with ASD had at least one comorbid diagnosed anxiety disorder (van Steensel et al., 2011).
Have you notices these physical symptoms in your child?
- excessive thirst
- stomach upsets
- loose bowel movements
- frequent urinating
- periods of intensely pounding heart
- periods of having gas
- muscle aches
- pins and needles
Or have you noticed these emotional or psychological symptoms?
- easily losing patience
- difficulty concentrating
- thinking constantly about the worst outcome
- difficulty sleeping
- becoming preoccupied with or obsessive about one subject.
If you do notice any of these symptoms, it is important to also get medical advice to rule out other medical conditions.
Parents can play a critical role in the treatment of anxiety in their child with ASD.
1) Encourage your child for his or her effort and engagement in brave behaviors – especially when it is something they doubted they could do
2) Ignore excessive displays of anxiety
3) Distinguish between realistic and unrealistic fears so that an appropriate treatment direction can be established
4) Convey confidence in the child’s ability to handle his or her worry and anxiety
5) Model courageous behaviors
6) Work together to develop a plan for facing fears
7) Discuss how to share coping skills and the creation of exposure hierarchies with other professionals so that gains in one setting can be generalized to other settings