WHAT IS CEREBRAL PALSY?
Cerebral Palsy is a group of disorders that impact a person's ability to move. This may include the person's ability to maintain balance or posture, and impacts his or her muscle tone and coordination. There are several different types of cerebral palsy, including:
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Spastic Cerebral Palsy;
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Dyskinetic Cerebral Palsy;
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Ataxic Cerebral Palsy; and
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Mixed Cerebral Palsy.
Each person will experience cerebral palsy differently.
SIGNS OF CEREBRAL PALSY
Many families will notice signs of cerebral palsy in their loved one early in life. Some of the most common signs of cerebral palsy include:
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Feeling "stiff" or "floppy" when being held;
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Loose or no control over his or her head;
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Struggles with crawling and/or rolling over;
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Uses one side of body more often than other;
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Abnormal movements; and
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Poor coordination
SCREENING & DIAGNOSIS
There is no one particular examination that determines if a person has cerebral palsy. Many times, observation of a person, along with developmental screenings are used to make a diagnosis. However, there are times other methods are used to determine underlying issues that can contribute to Cerebral Palsy including:
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Cranial ultrasounds;
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MRI;
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CT Scan;
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Neurological evaluations; and
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Gait evaluations.
AFTER THE DIAGNOSIS
Families may experience a variety of emotions when their loved one is diagnosed with Cerebral Palsy. It is important that families connect with others and take time to process their emotions regarding a new diagnosis.
Finding support
It is crucial that you find support for yourself and your loved ones. Talk to your children, your family, your significant other and your friends about your struggles and times of triumph. Beyond your immediate circle, you can find support through:
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Your faith community
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Counselors
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Other parents
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Online groups and listservs
Ask for help
There are times that may be difficult for your family. Be sure to ask for help, even if it is for something simple such as picking up a prescription. Getting time to recharge is critical for your well-being.
INTERVENTIONS
There are a variety of different interventions that may be used for your loved one with Cerebral Palsy. Interventions may include:
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Occupational Therapy;
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Physical Therapy;
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Therapeutic Horseback Riding;
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Massage Therapy;
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Behavioral Therapy;
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Speech Therapy;
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Chiropractic Care; and
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More
FUTURE PLANNING
It is never too early to start planning for your loved one's future. He or she may require supports in making decisions, such as where to live and manage money. Many families believe that they are entitled to make decisions for their loved one throughout their lives because of his or her disability. THIS IS INCORRECT. Once your loved one reaches the age of eighteen, he or she is able to make his or her own decisions unless guardianship or conservatorship is established.
Guardianship and Conservatorship
Guardianship and conservatorship should be considered ONLY if your loved one will need assistance making day to day decisions. Guardianship takes legal rights from your loved one and can include the removal of the right to vote, enter into contracts, make financial decisions and more. However, you may consider different levels of guardianship, which enables your loved one to maintain certain rights, such as the right to spend his or her money as he or she chooses.
Estate Planning
This is a common concern for many families--"Who will care for my loved one when I am no longer able to care for them?". Many individuals with Cerebral Palsy will require supports throughout their lifetimes which are funded through Medicaid. To be eligible for and to maintain Medicaid, an adult can have no more than $2000 in assets and less than $2,250 in monthly income. Some options to provide for additional financial supports are Special Needs Trusts and ABLE Accounts.