Strategies and Products for Caregiving When a Loved One Has Cerebral Palsy

Although it often gets lumped in with chronic “diseases,” cerebral palsy is not a disease. It is a condition that results from damage to areas of the brain responsible for movement a child experiences while they are in the womb or, in some cases, immediately after birth. Doctors can usually diagnose cerebral palsy, or CP, early on — during or not long after infancy.

Because cerebral palsy treatment and severity can look different for each person, developing a plan for how to care for your loved one with this condition or how to help someone with CP is a critical part of helping them manage it throughout childhood and adulthood. No matter how much you love someone, caring for a child or adult with cerebral palsy is stressful. It puts a lot of pressure on you every day. And, if you aren’t careful, the ins and outs of figuring out how to manage your loved one’s symptoms can quickly become overwhelming.

While we can’t cure cerebral palsy or suddenly make all your stressors disappear, specific strategies and products can help make your job as a caregiver just a little bit easier.

What Is Cerebral Palsy?

Cerebral palsy is a condition that results when a child experiences brain damage in the womb or immediately after birth. Marked by problems related to movement, muscle tone and posture, its effects are permanent.

What-is-cerebral-palsy

The severity of cerebral palsy can vary, providing challenges that are unique for every caregiver. Some people with cerebral palsy can walk on their own, while others must rely on a wheelchair. Some can communicate their needs, and others are non-verbal. While cerebral palsy itself is a neurological condition, it can lead to a variety of other problems for individuals. While each person is different, in general, someone with cerebral palsy is also more likely to struggle with:

  • Abnormal perceptions of touch or pain
  • Seizures
  • Cognitive issues
  • Hearing and vision problems
  • Incontinence
  • Intellectual disabilities, including ADD and ADHD
  • Oral diseases
  • Mental health conditions

An individual with CP does face a unique set of challenges, but in today’s world, there many tools and strategies available to help them progress and live happy, productive lives. In many cases, they can make significant strides toward independence, which also relieves some of the pressure on their caregivers.

As a caregiver for someone with cerebral palsy — whether child or adult — you are always looking for ways to help your loved one improve their overall health and well-being. At Enabling Devices, we understand care for cerebral palsy in the home is an ongoing process of education and discovery. You never stop growing and learning, because you are determined to do the best you can as you care for your loved one.

Making Daily Life Easier

When it comes to at-home care for cerebral palsy, there are a lot of products and strategies available to help make life easier. Knowing what’s out there and how it can help you is essential to provide care for someone you love successfully.

living with cerebral palsy routines and care plans

Remember, establishing routines and an effective care plan may take time. After all, figuring out what works best doesn’t usually happen overnight. There will be times of trial and error before you finally settle on what works. You may spend months trying a new product or strategy, only to discover a better option down the road.

CP is a lifelong condition, so taking time to try different strategies and developing a plan that works for your loved one’s unique challenges is the best way to make sure everyone is comfortable and thriving where they are.

As you strive toward this, it’s essential to take time for self-care. Find ways to relieve stress, ask for help — more about that later — and remember to rest. One of the best cerebral palsy caregiving tips is to make sure you are helping yourself, too.

Communication and Language Development

One unique challenge that accompanies caring for someone with cerebral palsy is encouraging communication and language development. While cerebral palsy itself is typically a condition that affects movement, it can have profound cognitive impacts as well. Because of the limitations on their muscle development and function, individuals with cerebral palsy may struggle with facial expressions, gestures, speech, voice production and language — that is, being able to communicate and express their needs in a clear, concise way.

When it comes to how to raise a child with cerebral palsy, one vital job of caregivers is to address these issues when children are young, so as they grow, they learn to communicate and function in the world around them.

communication and language development for cerebral palsy

Some ways parents of children with cerebral palsy can encourage this behavior include:

1. Parallel Talk

This strategy is simple. As your child performs an activity — for example, playing with wooden blocks — you, the parent, talk about what’s happening while they do it. As they play, you might say, “Oh, look, you’re building with blocks. You put the red on top of the blue. Oh no, they fell over!” Think of it as narrating your child’s activities.

2. Self-Talk

This method is similar to parallel talk, only you are narrating what you as the parent are doing, rather than observing your child. As you play with your child, talk about what you are doing. For example, as you play with blocks, you might say, “Here is a yellow block. I think I will put it on top of the red block. Look at that! The red block is shaped like a square.”

3. Expansions and Extensions

In this case, you as the caregiver can add on to your child’s vocabulary to help them expand it. For example, if your child says “Dog,” you can expand it by saying “Fluffy dog.” Or, you can extend it to say, “The man is walking the dog.”

4. Non-Verbal Communication

Non-verbal communication falls into two categories — assisted and unassisted. Assisted includes technologies designed to help non-verbal individuals express themselves, such as computers, speech synthesis machines, or Augmentative & Alternative Communicators (AAC). Enabling Devices has dozens of AAC devices. These devices can be as simple as a one-message communicatormultiple message communicators, or progressive communicators that grow with your child. Unassisted includes communication methods such as sign language. If your child is non-verbal, trying out some of these options can ease frustrations and provide a means for communication.

5. Create Opportunities

Sometimes, the best way to encourage a child’s communication is to give them opportunities to practice. Place a favorite toy just out of their reach, so they will have to ask for it. Or, encourage them to socialize with other people. The more opportunities they have to practice communication, the better they will become at expressing their thoughts, feelings and opinions.

Developing Hand/Eye Coordination and Fine Motor Skills

Hand/eye coordination is an essential function for someone with cerebral palsy. As the use of visual cues to direct and engage the hands in action, hand/eye coordination can be challenging for someone with cerebral palsy because it requires the simultaneous use of the vision system as well as the hands and muscles.

Often mentioned in tandem with fine motor skills, which require tiny muscle movements, hand/eye coordination is the development of the skill of using the vision system and hand muscles simultaneously.

developing hand eye coordination for people with cerebral palsy

One of the best ways to help your loved one develop in one or both of these areas is with one of Enabling Devices’ assistive technologies. These devices provide fun and, often, guided interaction between the individual and their caregiver to help people with cerebral palsy in their development. The goal of these devices is to improve hand/eye coordination, as well as assist individuals with cerebral palsy as they develop and improve their fine motor skills.

1. Shape Sorting

Reminiscent of a popular child’s toy, this low-profile shape sorter — fondly called Drop-in-a-Bucket — is designed for players who have a more limited reach. The bucket has lights on it to attract the user’s attention, as well as music that plays when the user drops the shape into the correct hole. One great thing about this is that it teaches object placement and hand/eye coordination, as well as shape recognition. That combines two crucial functions into one item!

2. Pull and Play Switch

The Pull and Play Switch encourages the practice of three important motions — swiping, grasping and reaching. It can attach to a tabletop, wheelchair or bed rail, and comes with two different sized pulls. The object of the game is to encourage the player to reach for the ball suspended from the frame and then grab on to it with a finger or hand.

3. Stacking Blocks

These Stacking Blocks are designed to develop several skills vital to an individual with cerebral palsy. The object is to hone fine motor skills by placing one block at a time on the stack until it’s complete. As the individual places blocks onto the stack, they can also work on addition and subtraction and hand/eye coordination as they work to use their hands to guide the blocks to the right place.

4. Fine Motor Kit

Two Fine Motor Kits include different items that are designed to help children and teenagers strengthen their fingers and hands, develop grasping skills and hone their fine motor skills. It contains two pairs of easy-grip scissors, several games and the teen kit even has a Glow-in-the-Dark Dreamcatcher.

Daily Living Tasks

Another challenge caregivers often face is enabling your loved one with cerebral palsy to complete daily tasks. Generally speaking, four main tasks comprise the category of daily living — personal hygiene, eating/drinking, dressing and using the bathroom.

daily living tasks for those with cerebral palsy

While the extent of a person’s CP will indeed dictate their ability to perform any of these four activities, it should be the goal of any caregiver to promote as much independence as possible to build and maintain muscle function, as well as for peace of mind. Caregivers cannot be present every second of every day, and teaching an individual with cerebral palsy to perform specific tasks on their own can give them a sense of independence, as well as provide a much-needed respite for you.

Your medical team can provide guidance on how to go about teaching and developing certain skills within an individual with cerebral palsy, but it is critical to find ways to incorporate instruction into daily activities when raising a child with cerebral palsy. For example, use mealtime as a time to gradually teach your loved one to feed themselves. To do this, you can prepare them ahead of time for the table setup, what utensils they will use and what they will be eating. Then, during the meal, work with them on correct posture and the mechanics of chewing, if necessary, as well as identifying unfamiliar foods and the proper way to eat.

There are also a variety of useful products on the market that focus on how to help someone with cerebral palsy as they develop muscle control and the ability to perform daily living tasks. For example, tools like Enabling Devices’ ADL Boards help individuals with cerebral palsy develop the skills they need to dress. Each of the four boards helps with mastery of manipulative skills, including buttons, snaps, laces and zippers.

Over time, if a person’s abilities allow, they can also begin to practice and master specific life skills — that is, skills that help them care for themselves on more than a basic level. These skills might include housework, meal preparation, communication, managing finances and shopping. They can also include pursuing hobbies and activities that are of interest to the individual.

Depending on their abilities, products such as Enabling Devices’ battery-powered scissors provide electronic cutting, promoting independence and allowing someone with limited mobility to cut paper, fabric and other items on their own. While a pair of scissors might seem like no big deal, to a person with physical limitations, the ability to use an everyday object like a pair of scissors can provide a much-needed boost in their self-esteem and joy.

Products for Sensory Needs

Along with the physical challenges that come with cerebral palsy, individuals with this condition can also struggle with sensory processing disorder. While a sensory processing disorder can manifest itself in many different ways, it means they have a heightened sensitivity to things in their environment. These could include fear of loud noises, sensitivity to scratchy fabrics or even failure to respond when they encounter extreme temperatures. Yes, everyone hates startling sounds or the tastes of certain foods, but, for an individual with a sensory processing disorder, these aversions can take on an exaggerated effect to the point where they have a negative physical response to a trigger, such as vomiting when a loud noise happens.

 

products for sensory needs for those with cerebral palsy

Enabling Devices offers a variety of products designed to help individuals with sensory processing disorder, including toys, lights and chairs. We also provide sensory room design services to connect families with special needs to trained professionals who can recommend designs and products tailored to their individual needs.

Essential Products and Adapted Devices

One especially significant tool for individuals with cerebral palsy is the adaptive switch, a button used to activate adapted devices. The size and technology behind switches vary, so there is something out there for individuals of all levels of disability. These switches can make it possible for individuals with cerebral palsy to access a variety of devices including communicators, adapted toys, adapted electronics and even iPads. Enabling Devices has dozens of switches that address a wide range of needs — head switcheshand switchessip & puff switches, mounted switches, and even an eye blink switch.

essential products and adapted devices for people with cerebral palsy

Caregivers can attach switches to mounts, which come in a variety of sizes and designs. The job of a mount is to position a switch in a way that makes it most accessible for a particular individual based upon their physical needs. These can make a huge difference for an individual with limited physical abilities.

What good would switches and mounts be without adapted devices that attach to them? Enabling Devices offers hundreds of adapted devices that work with our switches. These include:

 

Finding Help

Being the parent of a child or adult with cerebral palsy can be both physically and mentally demanding. Just as you are intentional about taking good care of your loved one, you should also be intentional about taking care of yourself. Caregiver burnout can result in depression, anxiety and a variety of mental and physical health issues.

Unfortunately, all the devices and assistive technology in the world cannot prevent a caregiver from overdoing it. As a caregiver, you have a responsibility to yourself, as well as your loved one, to ask for help. This assistance could be in the form of a babysitter who comes once a week while you go to a movie, or it could be a trained professional who takes a more frequent and active role in the day-to-day care of your loved one.

Whatever route you decide to take, you will likely feel some apprehension about allowing someone else to spend time with your child without you present — no matter how old your child is. Some anxiety is normal, especially in the beginning. But, as you adapt to the presence of another person, it’s important to remember:

1. Change Is Good

Your child can find happiness and a fresh perspective when they spend a few hours with someone else. Interacting with a new person, encountering different ideas and playing various games can be stimulating for them, as well as you.

2. Taking Care of Yourself Helps Your Family

By avoiding caregiver burnout, you keep yourself mentally sharp and ready to care for your family, which is particularly vital if you have others in your home who do not have cerebral palsy. When you a break from your responsibilities as a caregiver, you can pay better attention to your other family members and nurture relationships that might otherwise fall by the wayside.

finding caregiving help for those with cerebral palsy

Just because it’s important to get help doesn’t mean you’ll leave your loved one with the first person you find. Take time to find someone you trust, and make sure they understand how to babysit a child with cerebral palsy. Then, once you’ve hired someone, spend time with them outlining expectations and routines. Be clear about what you expect, and make sure you know what their expectations are too.

About Enabling Devices

Since our founding in 1978, Enabling Devices has been dedicated to providing high-quality, individualized service to our clients and their families. Our goal goes beyond providing products to perform a task or assist with a daily function. Our mission is to create products that allow our clients to unlock their full potential and experience joy and independence they didn’t think was possible.

shop products for cerebral palsy enabling devices

Enabling Devices is proud to serve clients with a variety of needs, including clients with cerebral palsy. We offer a wide range of products to provide accessibility and to address muscle development, sensory issues, fine motor skills, teach cause and effect, and much more.

For questions about our products or to place an order, contact us today at 800-832-8697.

10 Ways to Choose the Right School for Your Child

The Word School with a Magnifying Glass

Chances are, your child spends much of his or her day in a setting outside your home. Whether it be a public school, private school, daycare or therapeutic or vocational training program, knowing your child is being well-educated and well-cared for is critically important. But finding the right setting for your child with special needs can be challenging. Here are some steps you can take to ensure that your son or daughter is receiving the top-notch care and educational services he or she deserves.

1. Know your child’s rights
According to Disability World “Federal law mandates that each and every child is to receive an education that is both free and appropriate in an environment that is the least restrictive possible. … There are three federal laws that apply specifically to students with disabilities: The Americans with Disabilities Act (ADA); Section 504 of the Rehabilitation Act of 1973; and The Individuals with Disabilities Education Act (IDEA).”

Complicating matters, each state interprets federal law differently. Make sure you familiarize yourself with the laws in your home state.

 2. Have your child evaluated
Not sure what setting is appropriate for your child? You are entitled to a free evaluation by your home school’s study team. Typically, such evaluations include psychological, speech, physical, educational and occupational therapy assessments. Depending on the results of the evaluation, children remaining in the public school system may be given an IEP that will approve your child for whatever services are deemed necessary. This may also determine whether your child qualifies for a school especially for students with special needs.

 3. Visit multiple schools
If possible, visit more than one school or setting to determine what would be the best fit for your child. Significant variabilities exist between schools in terms of their campuses, accommodations, staffing, curricula and inclusion policies.

4. Meet individually with administrators
Though school tours are helpful, when your child has special needs, it’s essential to explore whether the school can accommodate them. Make sure to be candid about your child’s needs even if this may result in him being denied admission. It’s preferable to know that a school is not appropriate before you enroll your child. Once your child begins attending school, administrators and teachers should be readily available to provide progress reports and address concerns.

5. Get references
Don’t take the school’s word for it, ask for references from other parents who have children enrolled there. They are more likely to be forthcoming about the strengths and weaknesses of the school.

6. Be aware of the school’s staffing
Ask about class size and student: teacher ratios as well as whether the school has onsite clinical staff. Find out how many minutes per week of therapy your child will receive. In private school settings, is therapy part of the tuition or is it extra? Is 1:1 therapy provided or will your child receive therapy in a group?

7. How are behavioral issues handled?
You will want to know this whether your child has behavioral issues or not. If he does have behavioral issues, you’ll want to make sure the school manages them in a way that’s in keeping with your belief system. If your child doesn’t have behavioral issues, make sure that being around other students who are frequently disruptive won’t interfere with her learning, emotional or physical well-being.

8. What is the school’s policy on bullying?
Be sure you’re knowledgeable about the school’s bullying policy. As children with disabilities are more likely to experience bullying, you’ll want to know that school administrators and teachers take it seriously and will intervene immediately.

9. Does the school offer courses or activities that your child can access?
Confirm that the school is fully accessible for students with physical and learning differences. Ideally, your child should be able to participate in all learning and recreational opportunities provided at her school.

10. Take children’s feedback seriously
Most kids complain about school on occasion. But if your child seems frightened, regularly complains about feeling sick or is habitually resistant to attending school, pay attention. Particularly with non-verbal children, it can be tough to get to the bottom of what’s going on at school. Make sure to check in with teachers and administrators to determine what may be fueling your child’s reluctance. Ideally, sit in on classes, or visit at recess or lunchtime, to make sure your child is safe, comfortable and happy.

Tips for Grandparenting a Child with Special Needs

Grandfather blowing bubbles with grandson in a park

Whether a child is born with a disability or becomes disabled later in life, his special needs are likely to affect the whole family. Grandparents are no exception. In fact, they can play a vital role in providing support for their adult children and care for their grandchild. But navigating this sensitive terrain can be challenging. Here are some tips to make grandparenting a child with a disability as rewarding as possible.

Recognize the need to grieve
Typically, parents and family members aren’t prepared for the birth of a child with a disability. Likewise, an accident or the diagnosis of a developmental disability may come as a shock. Though grandparents may be called on to provide various kinds of support right away, acknowledging feelings of disappointment, fear and anger is critical before they can move forward and attend to the many tasks at hand. Naturally, adult children who are the parents of a child with a disability, also need time to grieve. Though grandparents may wish to take away an adult child’s pain, in this case, that’s not possible, says grandparents.com. “You can’t change what has happened to your grandchild. But you can offer your support to the child and to the rest of the family.”

Do some research
Once you know about a grandchild’s diagnosis, do some homework to learn as much as possible about her special needs. This will help you to understand how you can be most helpful. When doing research however, avoid internet sites and other unreliable sources. Instead consult with your grandchild’s parents and health care providers for resources that will provide accurate and current information and advice.

Respect parents’ wishes
Grandparents don’t always agree with the way their adult children are raising their grandchildren. Though you may be tempted to speak up when you feel that your children are doing things wrong, it’s important to respect parents’ wishes. Says AARP: “Don’t tell your kids how to raise their children. Avoid judging their parenting style and bite your tongue unless they ask for your advice. If you disagree with their decisions — and you will, sooner or later — keep quiet. Your job is to be the grandparent, not the parent. Instead, respect their parenting efforts and look for reasons to compliment them.”

Join a support group
Being with other grandparents who are dealing with the stressors associated with having a grandchild with disabilities can be helpful, especially if you provide a good deal of your grandchild’s care. “You will feel better when you can share your feelings with people who know what you’re going through,” says Grandparents.com. “You can learn more about the disability. And you may pick up some tips on how to support your family.”

Love your grandchild
Regardless of the severity of his disability, your grandchild has many gifts, and he will undoubtedly enrich your life. The poem “Welcome to Holland” by Emily Perl Kingsley, beautifully sums up the experience of being the parent or grandparent of a child with a disability.

Five Ways to Find Reliable Childcare

Babysitter with Special Needs Child

Finding a dependable, trustworthy and compassionate sitter is challenging enough for the parents of typically developing children. But for parents of children with medical, psychological, behavioral or intellectual disabilities, it can feel like a monumental task. But don’t give up! It’s vitally important that parents — especially parents caring for children with special needs—have time to refuel. Here are some tips for finding a capable caregiver:

Lean on loved ones
When trustworthy friends and family members who know, and love, your child offer to chip in, assume that their offers are genuine and accept the help. Prior to leaving them in charge, make sure they receive any training and resources they may need to ensure that the experience goes smoothly.

Try local grad school students
Students getting graduate degrees in special education, occupational therapy, physical therapy and nursing, may all be interested in gaining hands-on experience. Not only are these candidates likely to have knowledge and expertise, they may also be up on the latest therapies and behavioral techniques. Contact local colleges and universities to see if they can connect you to available students.

Summer camps
Summer camps for children with disabilities are pretty much guaranteed to have staffs trained in handling children with special needs. You can rest assured that your child is getting great care while having fun, making friends and learning new skills. It’s a win-win! For a guide to camps for children with special needs, visit very special camps.com.

Respite care services
Respite care entails entrusting your child to a qualified caregiver on a regular or emergency basis so that you can meet other responsibilities, or just take a much-needed break. According to Care.com, respite care can mean “overnight care, day programs, summer camps, ‘respitality’ (weekends away for caregiving parents) and personal care assistance.” You can find respite resources through organizations such as Care.com, ARCH National Respite Network, and local branches of ARC, Easter Seals, United Cerebral Palsy as well as hospitals and government agencies. Though respite care can be expensive, it is possible to obtain financial assistance. Find out if your state has a program that offers financial aid. Says Kids Health Nemours: “Most children with special needs qualify for home and community-based Medicaid waivers that can cover the cost of respite care.” Be aware that many of these programs have extensive waiting lists, so apply as early as possible.

Start a Parent Co-op
Parents of children with special needs can create a system where they take turns caring for one and other’s children. For example, says Kids Health from Nemours, “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.”

Happy Father’s Day!

Fathers’ contributions are invaluable
Despite significant increases in the numbers of stay-at-home fathers and dads who take active roles in the care of their children, many parenting magazines, books and blogs are geared almost exclusively toward mothers. Likewise, fathers are often overlooked at their children’s schools, by pediatricians and other clinicians. That’s unfortunate since research shows that paternal involvement is extremely important to children’s development in a myriad of ways. With Father’s Day just around the corner, this week’s blog addresses dads’ invaluable contributions to their children’s lives.

Involved fathers have smarter children
Studies have shown that engaged fathers are more likely to have children that have higher IQs and do better in school. For example, a recent study published in the Infant Mental Health Journal found that “the association between paternal interactions and cognitive outcome is evident at a very early age.”  More specifically, the study reported that babies who actively engage with their fathers, perform better on cognitive tests.

Dads’ communication styles help children with language development
While moms tend to communicate with their young children in high-pitched, sing-song tones using words they are likely to recognize, dads are more likely to talk to their children as they might talk to other adults, using vocabulary words that may be unfamiliar, and discussing topics that pertain to happenings in the outside world. According to University of Washington researcher Mark VanDam, fathers’ verbal interactions “might act as a link to the outside world,” helping to prepare them for life outside the home and family.

Additionally, researchers Lynne Vernon-Feagans of the University of North Carolina and Nadya Pancsofar at the College of New Jersey told Today.com they were surprised to discover that “not only are fathers important for children’s language development, but that fathers matter more than mothers.” Their studies found that “when fathers used more words with their children during play, children had more advanced language skills a year later.”

Dads encourage [healthy] risk-taking
Dads tend to be more relaxed [than mothers] when it comes to their parenting styles, says Larry Cohen, a psychologist in Boston and author of “Playful Parenting.” Whereas mothers may discourage children from engaging in potentially dangerous sports or taking on challenges they feel may be beyond their child’s abilities, fathers are likely to encourage them. While this may be a risky proposition, especially for children with disabilities, it may also push them past their comfort zones, building their confidence and skills.

Dads make great playmates
While moms are known for their empathy, nurturing and caregiving, children often turn to their dads when it’s time to play. As we well know, play is one of the most important activities of childhood. “Play—especially active physical play, like roughhousing—makes kids smart, emotionally intelligent, lovable and likable, ethical, physically fit, and joyful,” write authors Anthony T. DeBenedet, MD and Lawrence J. Cohen, in their book, “The Art of Roughhousing.”

While children with physical disabilities may not be able to roughhouse, they can still benefit from their fathers’ propensities for silliness. According to the New Zealand Herald, “Researchers from Sheffield University discovered the importance of both “silly play” and imaginative play during tests on children aged 16 to 24 months. Jokes included an adult putting a toy chicken on their head, while fantasy games involved activities like pretending to wash hands without soap or water.” Such play, said the researchers, improved children’s social skills and increased creativity.

And clinicians at the Hanen Centre, an organization dedicated to building children’s language and literacy skills maintain that fathers’ playstyles are “uniquely suited to support the play development of their children with ASD [autism spectrum disorders]. Fathers have special ways of playing with their children, such as physical and rough-and-tumble play. This type of play can be very helpful and motivating for children with autism.”

Dads’ love corresponds to better outcomes for kids
Though no one can deny the importance of being raised by a loving mother, “knowing that kids feel loved by their father is a better predictor of young adults’ sense of well-being, of happiness, of life satisfaction …,” says director of the Center for the Study of Interpersonal Acceptance and Rejection at the University of Connecticut Ronald Rohner.  In a 2012 interview with Live Science, Rohner said he wasn’t sure why fathers’ love had a greater impact on adult children than mothers’ love, but he hypothesized that in families where dads have more “influence and prestige” than mothers, “his actions might make the greatest impression on the children.”

 

 

 

 

5 Ways to Prepare for Your Special Needs Child’s Future

Man in Wheelchair on a Winding Road

June: It’s the time of year for caps and gowns, diplomas, summer internships and job hunting. Graduation season can be bittersweet, signifying the transition from childhood to adulthood; Parents may feel that their children’s futures are full of promise.  But for students with disabilities and their parents, graduation may inspire more fear and uncertainty than hope and excitement. Disabilities experts say that the best way to minimize those emotions is by planning for your child’s future. As you establish a plan, here are some points to keep in mind.

 Start early
According to All About Developmental Disabilities.com, a nonprofit serving individuals with intellectual/developmental disabilities, “It is never too early to start planning for the future. From the beginning of your child’s life, try to keep a vision in front of you of their life at age 25.  This vision may change over time, but you should have one.”

Be open-minded
If you’re like most parents, you didn’t anticipate having a child with disabilities. You may have held fantasies about your child’s future — the sports they would play, where they would go to college, what sort of career they would pursue, etc. Once your child’s disabilities came to light, you probably experienced a period of mourning.  Eventually, you came to accept your new reality and to appreciate your child’s unique gifts. Focus on learning as much as you can about the options that will best meet your child’s needs and desires.

Create a financial plan
Special Needs Financial Planning.com recommends parents take the following steps as soon as their child is born. These include:
– Identifying and prioritizing goals
– Making a list of assets vs. expenses
– Calculating the sum of personal and government resources to determine whether the combination will be enough to meet financial goals. If not, create a plan to increase your resources.
– Reviewing and monitoring your financial plan regularly

Explore educational/vocational training opportunities for adults with special needs
If your child is a teenager who attends high school, start by talking with the school guidance counselor. If your child attends a special education school, the counselor is probably well-versed on academic and vocational programs in your area. You can also check out local chapters of such organizations as United Cerebral Palsy, Easter Seals and The Arc. Many of these organizations have vocational programs for young adults. If not, they may be able to direct you to other resources. Local community colleges can be another great resource. Most have classes geared toward students with special needs or at least offer services to help those students to succeed.

Create a job for your young adult
Though it isn’t an option for everyone, parents with means have been known to start their own businesses to ensure that their young adult with special needs will have a good job when he or she reaches adulthood. Some of these businesses make it a point to hire other young adults with special needs. Here are just a few of these innovative establishments: Sam’s Canterbury Café in Baltimore, Sweet Heat Jam Co. in Katy, Texas and Bitty & Beau’s Coffee in Wilmington, North Carolina.

 

 

Bedtime Strategies for Your Child with Special Needs

Bedtime. It can be difficult in the best of circumstances, but for parents of children with sensory issues, autism or ADHD, it can feel like a losing battle. But don’t give up! There are steps you can take to have a better time at bedtime.

Set the stage for sleep
Make your child’s bedroom into a relaxing sanctuary. Turn off all electronics including TVs, smartphones, iPads and computers, keep lighting dim and use black-out shades. If your child insists on having light in her room, guide her to a nightlight. “Although it may be tempting to allow them the extra light to allay their concerns and fears of the dark, too much light is counterproductive to natural body rhythms that trigger sleep,” according to the folks at the Sleep Matters Club. “As darkness descends, the pineal gland in our brain releases the hormone melatonin, which regulates sleepiness. This function is an important reason why children should not be exposed to electronic devices or televisions in the hour before bed. Not only is the content stimulating, but the light from the screen, blue light, is especially disruptive to this process, inhibiting the release of melatonin.”

Be sure the room’s temperature is comfortable for your child. The Sleep Matters Club people say the optimal temperature for sleep is a cool 65 degrees.

Use soft, not scratchy, linens and put toys away to decrease distracting and overstimulating clutter. Clutter “triggers more excitatory sensory input, slowing the body’s transition to relaxation and sleep,” says the Sleep Matters Club. “A clean space has a decidedly calming effect, helping your child ease into sleepiness.”

Choose a reasonable bedtime
Taking into consideration your child’s age, internal clock, your family’s schedule and his school’s start time, decide what time you want your child to be in bed and ready for sleep. Not sure how much sleep your child needs?  Consult with this chart from the Harvard Medical School HEALTHbeat newsletter. Based on the bedtime you choose, determine when to start your bedtime routine. For example, if you want your child to be ready for sleep at 8p.m. – you may need to begin turning off electronics, running a bath, putting on PJs, brushing teeth and reading a story by 6:30 or 7.

Routine rules!
Getting your child used to a consistent routine goes a long way toward decreasing the stress around bedtime. Though routines aren’t created overnight, they’re worth building. Marci Wheeler of the Autism Support Network stresses the importance of a bedtime routine for children with autism. “A bedtime routine should be the same every day and should include activities that are pleasant and relaxing as well as special and individualized to fit your child’s needs and interests,” says Wheeler. Some activities that may work well “include looking at the same book or story each night, saying good night to favorite objects, toileting, bathing, getting pajamas on, brushing teeth, having a glass of water, singing a favorite song or prayer, listening to calming music that the child enjoys, hugging and kissing family members and/or engaging in a calming sensory integration activity,” says Wheeler.

 Lights Out
When the bedtime routine is complete, it’s time to turn lights out and tuck your child into bed. A weighted blanket, a night light with soft sounds, and a favorite plush toy can facilitate sleep. Enabling Devices has created a simple Bedtime Bundle that includes a light projector with soft sounds, a weighted blanket, and a soft vibrating animal friend. Learn more at enablingdevices.com.