The Challenges and Joys of Raising a Child with Down Syndrome and Cerebral Palsy


Having a child born with disabilities can be very unnerving for parents. There are definite challenges and obstacles to overcome that parents of children without disabilities don’t face, but there are joys too. Every child is special, but those with one or both of two common disabilities—Down Syndrome and Cerebral Palsy—face unique challenges.


What is Cerebral Palsy?


Cerebral palsy is the most common physical disability of childhood and it is caused by brain damage that usually occurs in the womb, during childbirth, within the first 28 days of a child’s life, or within the first year of a child’s life. The brain damage, which may result from number of factors, causes disabilities largely in a child’s muscles and in how he or she moves. It may cause stiff muscles, spastic muscles, increased or decreased muscle tone, and varying degrees of difficulty walking. Cerebral palsy is lifelong, but not progressive. It can be treated but not cured and the amount of disability it causes varies greatly from one child to the next.


Some Challenges of Cerebral Palsy are Similar to Those of Down Syndrome

It is possible that a child will be born with both of these conditions, with the extra chromosome that causes Down Syndrome and with accidental brain damage that causes Cerebral Palsy. For parents this means additional challenges, but many of them are similar so it is not as difficult as it may seem at first.


For instance, both conditions require lifelong treatments, so parents need to be prepared to make a long-term plan for care that is updated year after year. Both conditions also cause some degree of physical disability and delays in development, so learning how to use assistive equipment and going through physical therapy will help with both conditions.


Down syndrome causes intellectual disability, but Cerebral Palsy may cause this as well. A child with Cerebral Palsy may also struggle with learning disabilities or behavioral disorders that make learning more difficult. For both conditions, parents need plan for early educational interventions that will make it easier for their child to learn and be successful in school.


A child with either or both conditions is also likely to face social challenges. It can be difficult to fit in with peers when a child looks and acts differently. Parents can face this challenge head-on by getting their child involved in social activities early, helping them to learn social skills and make friends. Early recreational activities also help with socialization and boost self-confidence.


Each Condition Has Unique Challenges


While there are many similarities and overlapping challenges, a child with one condition or the other will also have unique issues. Down syndrome, for instance, may cause certain health problems, like heart conditions, eye conditions, ear infections, and sleep apnea. A child may have one or more of these conditions.


Cerebral Palsy is particularly challenging in that it can cause a huge range of complications and is less predictable. Possible complications include vision loss, hearing loss, seizures, difficulty swallowing, inability to walk, joint pain, gastrointestinal issues, and much more. A big challenge of Cerebral Palsy is identifying and addressing each complication.


Another unique aspect of Cerebral Palsy is that it may be difficult to determine the exact contributing cause. Most common causes are congenital, meaning it occurs before or during birth. Acquired Cerebral Palsy is less common and may be caused by an infection or brain injury during birth. If this is the case, it usually presents itself within the first 28 days of life. It may be possible that a medical mistake occurred. This medical negligence adds an extra layer of frustration for parents, who then must decide, if applicable, if it is worthwhile to spend time and money in a legal fight or dispute against the responsible medical professional.

Having a child born with one or both of these conditions presents parents with a lot of challenges, but there are also great joys in seeing a child grow and develop to overcome them. To watch a child succeed and live a happy life in spite of disabilities is a great reward.

*Co-written by an anonymous volunteer blogger

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