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

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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

Disclaimer: All the information found on this website is just that, for informational purposes only.  Nothing on this site is meant to replace the services or advice from any regulated health care body or provider in your province/state/Country. You should not rely on this website as replacement for health services or care. You should instead contact your nearest and available licensed physician or health care provider for all matters pertaining to your health and well-being. This website is not intended to create a nurse-patient relationship and any questions or concerns should be addressed by your licensed physician or health care provider. You agree that you shall not make any health or medical related decisions based in whole or in part of anything contained on this website. 

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Clinical Manifestations of Down Syndrome Series: Introduction

Citation of picture in a textbook showing text "Down Syndrome".
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If one was to conduct an internet search to find out what are the clinical manifestations of Down Syndrome, it would turn up many sites describing the physical features of Down Syndrome. Typically, you would see the features that are characteristic of a diagnosis of Down Syndrome.

People assume that just because a person is physically different than the typical or normal person, that the difference seen, is abnormal in nature. Further, that this abnormal feature in nature must be incompatible with life or cause difficulty in life. So much so, that when individuals hear that their child has a diagnosis of Down Syndrome, little thought is given to what does that difference actually mean because people are still grasping with the diagnosis itself.

Continue reading “Clinical Manifestations of Down Syndrome Series: Introduction”

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Patient-Centered Care Part 2 of 2: Being Your Own Health Care Manager

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Patient-Centered Care Part 2 of 2: Being Your Own Health Care Manager

“How can I be the best Health Care Manager for myself?”

The online world of the internet presents many opportunities to engage with information in such a way that has never been done before. Anyone with internet access can research information, find solutions to problems, assess various situations from the experience of other users, seek out persons whose interests align with theirs, etcetera. The internet is such a vast place of information, that if you are not an expert on a particular subject, the information available can be overwhelming. More so, it can be difficult at times to tease what information is relevant, valuable, trustworthy, replicable, realistic, valid, unbiased, reputable, and evidence-based. Continue reading “Patient-Centered Care Part 2 of 2: Being Your Own Health Care Manager”

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