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Pride in being able to care for others and cope with all of the stresses of life is like a badge of honor. What no one tells parents, however, is that doing so will often push them to exhaustion.
It’s true that part of being an effective parent is the ability to keep many balls in the air at once. Another part of effective parenting that’s equally important to understand is when to seek assistance. It can be a hard step to take, but it’s one that’s necessary for families whose resources are not entirely meeting their needs. Whether its help with everyday activities or financial assistance from the government, there are sources that can help lighten the load.
A resourceful give and take
Parents of children with Cerebral Palsy become experts at managing just about everything. Parents know how to coordinate their child’s home care, medical appointments, school schedules, and therapy demands. They cook, clean, care, and comfort. They work, budget, balance, and record. They modify their homes, their vehicles, and their lifestyles. And just to make life busier, all of these tasks are organized alongside the demands of other children, a marriage, and friendships.
What might add to the dilemma is that a parent is often without a spouse or partner to help meet the demands of the family. For many reasons, they struggle to find balance that works.
Some parents are aware they require assistance, but feel they are without options to know where to turn. Others may proudly feel that managing their child’s needs is something that they must handle alone because it’s their responsibility. He or she may be fearful that other people won’t be competent enough to ensure the quality of care their child deserves. Perhaps a parent is too overwhelmed by the day-to-day responsibilities that it is too difficult to locate assistance that is not readily found.
In professional and educational settings, a parent may feel like they can ask for assistance only within the narrow scope of that person’s expertise, and may have qualms about asking for advice or help. For example, special education teachers are primarily responsible for helping a child to learn, but may know that proper nutrition is paramount to a person’s ability to learn.
They also know that their child may require assistive technology and therapy to learn on a level playing field with their peers. A parent might not know that the special education teacher may have access to resources on nutrition programs, adaptive equipment procured through the school system, and therapy services available through special education.
Likewise, in reverse, there are situations where the parent knows these should be available through the school system, yet the school is not progressive enough to know how to tap into these resources.
Requesting assistance is often a matter of pride for parents, who typically have not had to ask for help beyond the occasional babysitting stint prior to their child’s diagnosis of Cerebral Palsy. There is something that all parents of children with a disability consider: The people in their life are their first line of assistance, but not their only line of assistance.
The friends and relatives of families that include a child with Cerebral Palsy can be an amazing source of encouragement and strength. They bring a fresh perspective to the child’s situation. They have skill sets that can fill in the gaps left by busy parents. Additionally, they have a vested interest in the child’s health and happiness.
For parents, asking for help is not just a way to cover all of the bases. It’s a way to move forward for a family, and the child.
When a child’s disabilities affect a family’s standard of living, the notion of accepting help can be a tough step for anyone to take. There are worries about how others will perceive such a request. If a bill can’t be paid because a child’s prescription drugs are wiping out too much of a parent’s income, it’s something most people will understand. If a parent resigns his or her job to care for a child, finances could be pushed to the limit. In both situations, friends and family members may understand.
There’s also the issue of time. Children with special needs require a lot of additional attention. The majority of parents are no less than fully committed to making sure the personal care they provide is comprehensive. When they’re providing that care by themselves, however, it can be exhausting. It’s too much for any parent to conquer without reinforcement.
When a child’s needs are all-consuming, it can be difficult to see that family members, friends, medical and education professionals want to help. It can be a challenge for parents to understand how another person can fulfill, however temporarily, their role.
Individuals are often willing to help with even small tasks – let’s say, a computer-savvy friend who locates community support online. Or, a handy brother-in-law who constructs a ramp. Maybe, a sister watches the children while the parent rests. Occasionally, a neighbor offers fruits and vegetables from their garden or a casserole freshly baked. What may not be apparent is how reluctant or apprehensive they become if their initial offer is declined. They may not feel comfortable offering assistance a second time.
If provided the opportunity when circumstances and timing are conducive, the help others provide brings welcome relief.
What may not be readily apparent, is that often family and friends want to assist, but they don’t know how. They attempt, but sometimes get shy to offer a second time, after being turned down the first.
The biggest obstacle to accepting help is in having a place to turn. Parents with children with Cerebral Palsy often encounter denied benefits, limited insurance coverage, and a shortage of services available to inquire, much less receive assistance. On the flip side, there are many organizations with dedicated staffs – some volunteer based – that were developed to meet the needs, but lack the community awareness of their services.
Seeking help under extraordinary circumstances is a vital part of ensuring that a child lives a full life because he or she will know, if they see others helping mom and dad, that there are other people who can be counted on in time of need. It’s one step of several in obtaining a supportive network of family members, friends, and community resources that care deeply for a child.
Ways to help
When a child receives a diagnosis of Cerebral Palsy, the people who surround them typically know that they want to help, but they may not know how to assist. “How can I help?” and “What can I do?” are two of questions answered by the MyChild™ Call Center. Not surprisingly, the answer is dependent on a child’s condition and needs, as well as a helper’s abilities and resources.
The first and most important step for the potential helper is to learn about the child’s form of Cerebral Palsy, what associative conditions the child may have, and what needs the child may have. Spend time with the family. The more the person knows about the child’s condition and the family dynamics, the better they will be able to see how their own unique skill set can benefit the child.
Today, there is a plethora of information about Cerebral Palsy and its associative conditions online, and forums such as the MyChild™ Facebook page that can help a person tap into information and MyChild™ Call Center to connect with available resources.
Family members and friends often provide emotional support to the family, or perform some grand gesture, like a fundraiser. But there are simple acts provided consistently that, together, add to big relief.
A helper can ask a parent if they would like assistance applying for government benefits. These applications often take hours to complete – frustrating, at times. Assisting a parent complete documents can lead to valuable funding and support.
Unique skill sets can lend support to a family. A carpenter may provide labor for ramp construction, where a super organized family member may provide a refreshing home makeover. A musically inclined friend may provide entertainment. An accountant can offer assistance on tax credits and waiver programs while a financial planner may answer questions about special needs trusts.
Or, depending on a helper’s capabilities, he or she can take a more traditional route. If a helper has learned enough about Cerebral Palsy to learn how to take care of a child with special needs, why not let them take the child to the park, or the local shopping center, so the primary caregiver can rest? If a family is short on time, why not stop by once a week to cook a meal or help tidy up the house.
Potential helpers and parents face a whirlwind of emotions and significant doubts. There is a learning curve in terms of finding what works for each family. Be present in their lives, offer assistance, ask how to be of assistance, and support the choices the parents make. If the parent should decline an offer of assistance once, it doesn’t necessarily mean that help is not welcome.
Every small task or thoughtful gesture is a drop in a pool of similar endeavors. They add up to a pool – and a tidal wave of love.
A message can be verbal, or something that’s felt in the heart. What all messages have in common is that they can influence our perspectives for better or worse. Luckily, by gathering positive messages, the bad ones can be cast away.
- Accept Help
- Celebrate Your Child
- Dare to Dream
- Experience Magic
- Find and Foster Creativity
- Gain Perspective
- Get Your Mojo Back
- Keep the Family Together
- Let Go
- Love without Barriers
- Pat Yourself on the Back
- Plan Ahead
- Pursue Happiness
- Reinvent Normal
- Share Some Love
- Take a Break
- Welcome to Holland