You want the best for your child and it can be heartbreaking to learn that your new little one may have serious health problems. Each case of cerebral palsy is different, but we can help you get a sense of what to expect when your baby is diagnosed with cerebral palsy.
Most cases of cerebral palsy are diagnosed early, within a year or two of birth. Very mild cases may not become apparent until the child is 5 or 6 years old. Every baby is regularly tested to ensure proper growth, nutrition, and development. If your child is not growing appropriately or is lagging behind developmental milestones, your doctor may want to monitor your child more closely and have checkups at more frequent intervals. A number of conditions can affect your child’s growth and development, so your doctor will perform tests and continue monitoring your child’s development to rule out other potential diagnoses.
If your doctor believes that your child may have cerebral palsy, he/she will refer you to a specialist (usually a pediatric neurologist or developmental pediatrician) who can perform more rigorous testing of your child’s development, muscle tone, and other factors to determine if your child has cerebral palsy. There is no specific test that can confirm or rule out cerebral palsy, so your child’s doctors will rely on your medical history, your child’s medical history, and testing of your child’s developmental progress. In some cases, your doctor may perform a CAT scan, an MRI, or a cranial ultrasound to look for lesions (damaged areas) or malformations of the brain.
Because there is no specific test for cerebral palsy, diagnosis can take time. While many children are diagnosed before the age of 2, other diagnoses can take much longer. Doctors don’t want to give you the wrong diagnosis and they don’t want to miss any of the other conditions that can cause symptoms similar to cerebral palsy, so they will take their time and try to be as thorough as possible
The Early Years
Children with cerebral palsy typically have delayed growth and development. Your little one will likely be smaller than her peers and lag behind on developmental milestones like sitting up, walking, and speaking. By the time your child is a toddler, you’ll have a fairly good of idea of what he/she can do. Some children have mild symptoms and are relatively unimpaired. Others have much more severe symptoms and may not ever be able to walk or talk. Pay attention to your child and learn what he/she can do.
It’s not always going to be easy. It’s frustrating when your child is behind other children of the same age. It’s also frustrating when your child has trouble with potty training or with learning to speak. Remember that it’s frustrating for your child, too. The majority of children with cerebral palsy do not have intellectual disabilities. They know what’s going on, they just don’t have perfect control over their own bodies and they often struggle to communicate clearly. The best thing you can do is be loving and patient and work on ways to communicate with each other.
While many children with cerebral palsy won’t have any trouble keeping up with their peers, those with severe symptoms can benefit from modern technology. Programs specifically designed for children with cerebral palsy can allow them to draw, play, practice life skills, and communicate just like other toddlers. These programs can also help children and parents stick to a therapy regimen and practice the exercises and activities prescribed in therapy.
Therapy and Other Treatment
As mentioned above, most children with cerebral palsy will be able to keep up with their peers with little or no trouble. Each child is different and each will have different treatment needs. You’ll work with your child’s doctor to create a treatment plan, which may include surgery, therapy, or medication.
The treatment plan will change with your child as your child develops. You’ll need to stay in touch with your child’s doctors and therapists to make sure the treatment plan is meeting your child’s needs and growing with your child. That may mean considering surgery to loosen muscles or tendons as your child learns to walk. It may mean starting speech therapy or occupational therapy. It may mean adjusting medications as your child grows and develops.
If your child’s symptoms are mild, you won’t have to spend much time on treatment. For those with severe symptoms, it may feel like you’re always in and out of a doctor’s office. If you’re struggling to manage your child’s treatment, there are resources available to help you manage the time and financial costs of treatment.
Most children with cerebral palsy have no intellectual disability and will be able to perform in school. Some children may require special education classes in certain areas. For example, cerebral palsy can cause spatial reasoning glitches that make math more difficult.
Children with cerebral palsy may need special accommodations due to mobility limitations. That may involve special physical education classes that take into account their abilities, for example. You’ll need to work with your child’s teachers to make their needs and abilities clear.
You should always inform your child’s school that your child has cerebral palsy. You’ll need to notify them of any mobility limitations and medical needs. Your child may need to take certain medication multiple times a day and the school nurse’s office will handle that. You should also warn the school if your child suffers from epilepsy or other condition associated with cerebral palsy and create a detailed plan for how the school should handle any medical concerns.
Children with severe cerebral palsy may need more intensive special education care. States are required by law to provide educational services to all students, regardless of disability, and they have resources and staff in place to handle children with intensive needs. Some areas may also have private school options.
It’s not easy for any parent when their child goes out into the world. It can be especially difficult if your child has health problems. As we’ve said before, most children with cerebral palsy will go on to lead independent lives. They’ll finish school, find jobs, settle down, and start families. They will always have cerebral palsy, but it can be managed and it doesn’t have to hold them back.
Unfortunately, some children will have a harder time. Children with very severe cerebral palsy may not be able to lead independent lives. You may need help caring for your child, such as a health aide. You may find that your child is better cared for in a group home or care facility with extensive medical resources. Decisions about your adult child’s care may be difficult, but you’ll have to face them with your child’s best interests at heart.
Take It Slow
It’s not always going to be easy. Raising any child is physically, emotionally, and financially demanding. Raising a child with cerebral palsy can be even more difficult. Remember that you don’t have to go it alone. There are extensive local and online support groups where you can connect with other parents and people with cerebral palsy to learn what works for them, to share resources, to swap stories, or to give or receive emotional support.
It’s not easy to raise a child with cerebral palsy. You may spend a lot of time at the physical therapist’s office, at doctor’s visits, and more. Your child may need a variety of medications and medical devices. All of this takes a lot of time and money and you may feel overwhelmed. The good news is that there are resources to help make your job as a parent easier.
United Cerebral Palsy is an organization dedicated to supporting children with cerebral palsy and their families. Local UCP affiliates can provide help with housing, medical care, therapy, and more. UCP also provides educational materials about cerebral palsy and associated conditions.
Medicare and Medicaid can cover your child’s health care costs, including hospital visits and home care.
State Resources For Assistive Devices
Each state has a program designed to help children with disabilities get access to the assistive devices they need. Click here for a list of the programs in each state.
Variety provides assistance with mobility devices for disabled children. In some areas, it also provides specialized transport to school, medical appointments, and more.
United Healthcare Children’s Foundation (UHCCF) provides financial assistance to cover the costs of children’s healthcare needs beyond what is covered by insurance. Families are eligible to receive up to $5,000 per year in aid.
The Partnership for Prescription Assistance provides access to low-cost medications and medical care for qualifying patients. They offer local clinics for basic health care services.