Parenting a Child with Cerebral Palsy. In Honor of my miracle baby Payden.

Genre: Informative
Purpose: To provide parents who are new to the disorder gain a better grasp on some of the conflicting information.
Audience: Parents and families raising a child or children with Cerebral Palsy.

Parenting a Child with Cerebral Palsy. In honor of my miracle baby Payden <3

Planning to have a baby is a joyous time in life for couples that is filled with adventure, excitement and dreams that of what lies ahead. From the time you learn that you are pregnant the center of your universe seems to shift over to focus on your child-to-be. You dream about what your child will look like, what their personality will be like. You make plans for your baby’s life; both immediate plans like decorating the nursery and distant life plans such as college and marriage. Now imagine having those dreams come crashing down around you after learning that your child will be taking a completely different life path, a life path filled with fear and uncertainty. This unintended path is better known as Cerebral Palsy. There are several ways for a child to develop Cerebral Palsy and while life expectancy and quality of life vary greatly from child to child one thing is for sure; it’s a long scary road.

While there are many things that can cause Cerebral Palsy the simplest explanation is that Cerebral Palsy results from damage to the brain. Most typically Cerebral Palsy appears to develop while the baby is still in the womb; however it can also occur within the first few years of life as a result of a severe infection or brain injury. It can be difficult to pinpoint the exact cause of the brain damage but some of the more common known causes are as follows: improper development of the brain (also known as a congenital abnormality), prolonged high bilirubin (jaundice, yellowing of the skin and eye whites caused by a decrease in function of the liver), oxygen deprivation during the birthing process and strokes (in and out of the womb). The mother can also contract certain infectious diseases during her pregnancy which can be linked to Cerebral Palsy these include: Toxoplasmosis, Syphilis, Chickenpox, Cytomegalovirus and Rubella. Finally there are two illnesses that a child can contract that have been linked to Cerebral Palsy and they are Meningitis and Viral Encephalitis. (“Cerebral Palsy” Mayo) No matter what caused your child’s Cerebral Palsy it is a life changing disability. Once this devastating diagnosis has been made it is of the utmost importance to plan for the appropriate care of your disabled child. A way to better understand this unique disability is to identify what type of Cerebral Palsy your child has.

Cerebral Palsy can be described as an umbrella diagnosis; this means that it is a disorder that refers to a wide variety of developmental disorders involved with the impairment of movement and muscle control and can also cause mental impairment. There are three main types of Cerebral Palsy: Ataxic, Spastic and Athetoid Cerebral Palsy. It is not uncommon for some children with Cerebral Palsy to have a combination of symptoms from one or more of these three common types; when this is true it is known as mixed Cerebral Palsy. It is also possible for your child to fit into the ‘Unknown’ category of Cerebral Palsy; this is when your child suffers from one of the lesser known forms of Cerebral Palsy. While each of these forms of Cerebral Palsy are unique the thing they have in common is that they all effect muscle tone and coordination. (“Cerebral Palsy Types”)

Ataxic Cerebral Palsy presents with hypotonia (low muscle tone) and poor coordination. Children with this type of Cerebral Palsy often times have difficulty with coordinating their muscles for any type of movement from holding their head, rolling over to walking. “Their muscles can be similar to a wet noodle in the way that they are so flexible coupled with a lack of control.” (Farquar). Spastic Cerebral Palsy presents with slow, uncontrollable spastic movements. This can affect the legs, arms, hands, feet and even the face. These movements are unintentional and completely random which can make talking, eating and other simple, everyday tasks difficult for the child to execute. Muscle tone in children with Spastic Cerebral Palsy can vary from hypotonia to hypertonia (an increased tension in the muscles, extreme tightness) and can also change frequently. This specific type of Cerebral Palsy is the most frequently seen form; it occurs either alone or in Mixed Cerebral Palsy in almost eighty percent of cases. Spastic Cerebral Palsy is quite nearly the opposite of Ataxic Cerebral Palsy in the respect that it presents with hypertonia. Children with Spastic Cerebral Palsy often have tight, stiff muscles and are limited in their movements because of their inability to move certain muscle groups. Some children with Spastic Cerebral Palsy also suffer from hemiparetic tremors; this means that at times they experience uncontrollable shaking (tremors) on one side of their body. Children affected with this type of Cerebral Palsy often have trouble shifting positions and using their hands to grasp and hold objects. It can be more outwardly identifiable because children with Spastic Cerebral Palsy often have stiff hand muscles which leaves their hands in a ‘C’ shape almost unceasingly. No matter what type of Cerebral Palsy your child has; be it a single type, a mixed type, or a rare form of Cerebral Palsy it can be a debilitating condition. It is important to seek the appropriate therapies to improve the quality of your child’s life. (“Cerebral Palsy Types”)

There is no one size fits all guide to improving the life of a child with Cerebral Palsy. Every parent finds the unique rhythm of therapies, specialists and early intervention that best benefits their child at any given time. It is important to know that your needs and your child’s needs will change frequently so you should be open to change and flexibility in your therapy routine. Therapies of different types will become part of your routine. Physical therapy combines exercises and work outs tailored to fit your child’s special needs. Physical therapists most often focus on gross motor skills such as sitting, crawling and walking to name a few. Occupational therapists work with devices and tools to help improve your child’s fine motor skills such as holding a pencil, hand- eye coordination and using utensils. Speech therapists help your child with communication. They can work with your child to help them speak more clearly or even teach them sign language or other forms of alternate communication such as communicating with picture boards. If your child also has problems with eating your Occupational therapist or Speech therapist can address those problems; this includes everything from learning to swallow to oral aversions. It depends on where you go to receive your therapy services on which therapist will attend to problems with eating. (“Cerebral Palsy” Mayo) Having a Physical, Medicine and Rehabilitation doctor can also be extremely helpful in coordinating your child’s care and making sure they get the adaptive equipment necessary to make their lives easier. (Thorogood).

Adaptive equipment is equipment that is altered to make it useful for children with special needs in almost the same way that is is useful for other children. Adaptive equipment can help a child feel “normal” and more independent; it can also help you in your everyday life. Equipment that is traditionally used for babies and toddlers may not be sufficient or useful to a child who has Cerebral Palsy. Be it the need to have the muscles positioned in a certain way or because of safety issues your child at one point or another will likely need some sort of adaptive equipment. Fortunately, in recent years there have been many wonderful strides in this area of special needs. You can find adaptive equipment to replace everything from car seats to bath tubs to high chairs to suit your child’s needs. This is where having a Physical, Medicine and Rehabilitation doctor can help make your journey with Cerebral Palsy much more bearable. You should start by going to your Physical, Medicine and Rehabilitation doctor with your concerns and your child’s unique needs and ask them to coordinate with your child’s therapists to select the most effective and efficient adaptive equipment based on need and ability. Other equipment can also help your child stay comfortable and happy as well as help train their muscles such as orthotics (or braces) on your child’s legs. These are designed to help your child achieve a variety of things from aligning their knees, ankle and hips all the way to preventing them from losing the range of motion in their foot that is caused by walking on their tip toes. It is important that you have this talk with your doctor early because this equipment can be costly and it often takes insurance companies several months to approve and pay for special equipment, if they do so at all. This is just another small step in improving your child’s quality of life. (Coping)

As you can see every family and child’s journey with Cerebral Palsy begins and leads to different places. Everyone has a unique journey but as caregivers we have the same ultimate goal: greater quality of life and to receive the best possible care. From the first step of getting the diagnosis to receiving the wide variety of therapies it is important to keep this goal in mind and to support the efforts of the doctors who are fighting to further our knowledge of this disorder. Good luck with your individual journey.