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.