Category: Parents of Disabled

When babies are born with special needs, their parents are understandably frightened and overwhelmed. Though well-meaning, friends and family may be at a loss as to how to react to a newborn’s diagnosis. Instead of congratulations, parents of babies with disabilities or serious medical conditions are often greeted with expressions of sorrow and pity.

Baby photographer Angela Forker of New Haven, Indiana, understands that regardless of the pain and fear that new parents may experience when their babies are born with serious health challenges, there is also joy and pride.

Forker saw this first hand, when a couple in her church received a frightening diagnosis during the woman’s pregnancy. The baby was diagnosed with a severe form of holoprosencephaly and was not expected to survive the pregnancy. Miraculously, baby Madalyn was born alive and lived for 15 days. As Forker writes on her website, “While she may have looked different than other people’s babies, it didn’t even phase her parents. All they saw was Madalyn’s unique, captivating beauty. They adored their baby girl! When she was born, they wrote on their Facebook page, ‘She is perfect!’ They cherished every moment they had with her.”

The experience of Madalyn’s birth and her parent’s response to their critically ill baby inspired Forker to start the Precious Baby Project. The project comprises what Forker calls ‘Baby ImaginArt scenes.’ “These scenes feature babies as beautiful works of art, or as doing impossible things,” she writes. “My motto for my Baby ImaginArt scenes is ‘ANYthing is possible!’”

Forker says she began the project “to spread hope and raise awareness for babies with special needs as I take stunning and/or fun photos of babies with various medical needs. I want to show the world that every baby is precious!”

Instead of trying to hide babies’ disabilities or any necessary medical equipment such as tubes or wires, Forker incorporates them into her photographic scenes. Before each photo shoot, she consults with the parents, to learn about their baby’s medical needs and to choose a theme for the ImaginArt scene. For example, a baby girl named Ellis Rose, was photographed surrounded by roses, while a baby boy named Elijah who has Crouzon syndrome, a craniofacial disorder that necessitates the use of a trach tube and helmet, was photographed as an astronaut in space.

To participate in the Precious Baby Project, parents must be local to the New Haven, Indiana area or willing to travel to Forker’s home studio there. They must meet certain guidelines which can be viewed on her website. If chosen, families will receive two free digital images of their babies including one photo of their baby’s ImaginArt scene. For more information about Forker and to see photos of the Precious Baby Project, visit preciousbabyphotography.com/precious-baby-project.

 

After months of preparation, weeks of packing, and multiple conversations with the camp director, doctor and nurse, you’ve finally reached your child’s first day of sleepaway camp. Maybe you’ve dropped him off there, or maybe you’re one of a throng of parents waving to their children through the window as the camp bus rolls away.

In either scenario, you’re bound to be experiencing a mix of emotions — excitement about the prospect of much-needed time to yourself; guilt about the sense of relief you may feel; and significant anxiety about how your child will fare at camp.

If your child has disabilities, these emotions may be heightened. Here are some steps you can take to make the most of this brief time away from your child.

Remind yourself of the benefits of camp for your child
Most likely you spent hours researching the camp you selected for your child. You probably got references, interviewed the staff and maybe even visited the camp grounds. You made sure to choose a camp that seemed prepared to deal with whatever challenges — medical or behavioral — that your child presents. With these pieces in place, your child is set up to reap the many benefits that summer camp provides: the opportunity to make new friends, gain independence and self-confidence, and develop new skills.

 Give yourself a break
You deserve to have some time to focus on yourself, your significant other and even your other children. There is no cause to feel guilty about sending your child to camp or for feeling happy while he is there. Remember, this break will provide you with a chance to re-energize, so you’ll be able to be a better parent to him when he returns.

Spend time doing things you enjoy
Take advantage of the extra time that having a child at sleepaway camp offers. Plan a weekend away with your significant other, have lunch or drinks with friends; sign up for a class; begin an exercise regimen; read a book; or simply catch up on your sleep.

No news is good news
In an era of 24/7 access, it’s hard to adjust to camp communication guidelines. Most camps don’t allow campers to bring cell phones, and discourage phone calls between campers and parents in general. Camps have their reasons for rules such as these. Phone contact often worsens or even creates feelings of homesickness in campers. It may also cause unnecessary concerns for parents who may not realize their child’s homesickness is likely to dissipate soon after it arises.

That’s not to say that you shouldn’t receive frequent reports from your child’s counselors and camp administrators. They should communicate regularly and should always be available for phone inquiries and emails.

 Rediscover the lost art of letter-writing
Though phone calls, text messages and emailing are out of the question, you can write plenty of letters. The more the better! When determining what to write to your camper, focus on positive news from home. But not too positive! You don’t want your child feeling like he’s missing all the fun. Ask questions about camp, and let your child know you are proud of her for trying so many new activities and experiences.

Enjoy seeing your child’s photos online    
Nowadays many camps take hundreds of photos every day. The photos are posted on the camp website (mostly)for the benefit of worried parents. There’s nothing like seeing your child in a photo surrounded by new friends, and grinning from ear-to-ear!

 

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.

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.”

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.”

 

 

 

 

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.