Lifestyle

A Cerebral Palsy Caregiving Guide

Written by Smith · 3 min read >
Cerebral Palsy Caregiving

Cerebral palsy (CP) refers to motor disorders caused by damage to a child’s brain before, during, or after birth. It is characterized by a crouched gait, awkward posture, shaky or clumsy movements, eye muscle imbalance, and general difficulty with fine motor skills. While the symptoms of CP vary from person to person, it is typically diagnosed during infancy or preschool.

Although the condition is non-progressive, CP can affect an individual’s physical and cognitive health. People with mild CP might not require any assistance to function. But those with moderate to severe CP are prone to developing behavioral problems, intellectual disabilities, seizures, speech, hearing, and vision problems, and urinary incontinence. In extreme circumstances, CP patients require constant medical attention for the rest of their lives.

In this article, we’ve provided tips and strategies for you to help your loved ones with CP lead a more fulfilling, independent life.

1. Do Speech Therapy At Home

According to a 2020 Developmental Medicine & Child Neurology study, about 80% of children with cerebral palsy suffer from delayed or disordered speech production. This is because they struggle to control their facial muscles responsible for phonation and articulation. As a result, they speak too fast or too slow, stutter, mispronounce words, or need help putting words together to form phrases and sentences.

Expressing themselves is crucial for children’s emotional, interpersonal, and intellectual growth. If they don’t receive speech assistance as soon as they are diagnosed with cerebral palsy, your child can develop lifelong communication and language problems.

As a caregiver of a child with cerebral palsy, you can play a pivotal role in helping them develop proper speech and language habits early on so that they can enjoy a better quality of life when they become older. If your child shows signs of speech delay, your first action should be to find out what kind of speech disorder your child has. Then, consult a speech-language pathologist (SPL) and have your child attend speech therapy sessions customized to their needs. Thanks to early speech therapy intervention, most children with CP can overcome speech delays and communication problems at a very young age.

Next, ask your SPL what speech therapy activities you can do and start practicing at home. Generally, speak in complete, grammatically correct sentences instead of two-or-three-word telegraphic speech. If they cannot enunciate a sound, be gentle in your reply and pronounce it correctly. For instance, if your child says “tar” for star, don’t reprimand them. Instead, say, “Yes, that’s a star.”

When conversing with your child, use visual and tactile cues—concrete objects, pictures, toys, hand-drawn images, or fingermaps—to help them remember the sound and shape of a letter. For instance, while telling them a story about a snake, you can show them a picture of a snake drawn as an “S.” That way, they’ll know that the letter “s” looks like a snake, and the initial sound of “snake” is also the sound of “s.”

Lastly, always go easy on your child if they fumble with pronunciation, even after several attempts. Instead, praise their effort wholeheartedly. You may also want to set up a reward system for positive reinforcement. This does not always mean you buy them something whenever they use a new word correctly or when they overcome a challenging pronunciation. Sometimes, merely saying, “Well done, Alice,” or “That was a tricky one, but you nailed it!” does wonders for your child’s self-esteem and confidence.

2. Encourage Active Participation In Everyday Activities

Helping a loved one perform mundane everyday tasks is often the most challenging part of your job as a caregiver. These daily living tasks, also known as Activities of Daily Living (ADL), are divided into five broad categories:

  • Bathing, grooming, and oral hygiene
  • Dressing and choosing clothes
  • Eating and drinking
  • Continence or bathroom use
  • Simple movements like getting up from bed or sitting on a chair

The severity of a person’s CP will determine their capacity to do any of these five activities without external help. But it is still the responsibility of caregivers to encourage as much autonomy as possible to improve muscle function and boost the patient’s sense of well-being.

When raising a child with cerebral palsy, you must think of inventive ways to include instruction in regular activities. For instance, use mealtimes to help them learn how to feed themselves. You can do this by briefing them in advance on the dining room’s decor, the types of cutlery they’ll be using, and the menu. Then, while eating, go through the names of the food, how to properly chew it, how to maintain good posture, and anything else that you believe should be covered.

With time, a person can also begin to develop specialized life skills that will help them in more than just basic self-care. These skills could include housekeeping, cooking, grocery shopping, playing an instrument, or pursuing an online degree.

3. Take Regular Breaks

As a hardworking and dedicated caregiver, you owe it to yourself and your loved one to reach out for help when needed. The support might come from a babysitter who comes once a week while you go to the movies. Or, it could be a physiotherapist who works with you to improve the physiological and functional outcomes of your loved one.

No matter how old your patient is, you will undoubtedly feel nervous about entrusting them to the care of a stranger. It’s natural to feel a little uneasy at first. However, while you adjust to your new social situation, you’ll realize that spending time with someone other than yourself brings joy and fresh perspective to your loved one’s wellness. Being with a new person, hearing new ideas, and trying out new activities can mentally stimulate both of you.

Secondly, you are helping your loved one by taking good care of yourself. Caregivers who don’t let themselves get burned out are better able to care for their families. Taking some time off from your caregiving duties allows you to reconnect with your family and focus on the relationships you value most.

Final Thoughts

Each individual with cerebral palsy (CP) is affected uniquely. If you take care of a child or an adult with cerebral palsy, you probably want to do everything you can to enhance their health and quality of life. And there are many things you can do to help your loved one reach their full potential, regardless of how severe their CP may be.

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