Children with special medical needs can still live happy and full lives into adulthood, but to get to that point, you as a parent need to invest in both the education and expertise necessary to take care of them during those early years. Here some important things to keep in mind.
For a start, one of the best things you can do as soon as learning your child may have a certain disability or condition is try to educate yourself as much as possible. Let’s use seizures as an example. According to Jeff Sampson, a brain injury attorney, a family member affected by brain seizures may have issues stemming from “the result of a birth defect or a developmental disorder, or caused by head trauma. Since there are a variety of types of seizures and the brain’s disruption of activity can vary, symptoms may change with each seizure and each seizure type. However, there are some common symptoms of seizures that should signal an issue with normal brain function.” He goes on to explain that some of the common symptoms in these cases include:
- Staring spells
- Uncontrollable jerking of the arms and legs
- Loss of consciousness
- Rapid blinking or twitching
- Memory Loss
- Loss of bowel or bladder control
One of the most common conditions that leads to parents having to deal with a child’s seizures on a regular basis is epilepsy. As a general rule, it’s best not to let epilepsy or any other similar condition keep you from enjoying a lot of things that any other family would. Help your child make friends and encourage their different hobbies, activities and interests. In addition, try to avoid making them feel like a burden, even inadvertently. At the same time, you want to create an atmosphere of openness about the condition to help your child empower themselves for later in life. At younger ages, it may be difficult to try and find appropriate childcare, so try and reach out to organizations and non-profits early on that match your child’s needs. They may not be able to help you directly, but can help provide you with resources that can.
Another difficult point that you need to deal with when it comes to taking care of a disabled child or child with special needs is being able to take care of yourself during the process. A lot of the time, well-meaning parents toss themselves into their responsibilities but fail to take care of their own mental health and well-being. This can have a variety of consequences for the household. In fact, this set of issues has come to have a name: Caregiver Stress Syndrome. This covers a variety of different symptoms, including the following:
- Anxiety and depression
- Memory problems
- High blood pressure
- Lowered immune function
Because of the varied symptoms, it can be difficult to pin down Caregiver Stress Syndrome until it becomes too much to handle. This is why you need to start by understanding that despite your child’s needs, you are going to have some of your own, and attending to them doesn’t make you a bad person. Some good ways to start handling this issue is getting in the habit on focusing on the current day rather than the past. In addition, try to find little things you can do for yourself each day. Not all of us have the means to take a vacation when we’re feeling down, but a quick walk in the park is free.
In addition, on top of the medical professionals you bring your children too, consider taking some time to see a therapist, even if you’re not feeling low. The opportunity to speak without fear of judgment helps a lot of people.
Responsibility for taking care of a child’s needs takes many forms. What we’ve been covering is the emotional and daily needs, but there’s also a greater financial need, especially depending on the nature of the condition. In some cases, if your child needs lifetime care, you may end up paying a six- or seven-figure sum over the course of your lifetime. However, there are ways to handle this. One example is a special needs trust. Social security income helps cover some disabilities, but there are exceptions. For example, people with over $2,000 in assets and couples with more than $3,000 won’t qualify for the Supplemental Security Income program. Special needs trusts are a way to navigate this issue.
These are created by family members and funded with assets that don’t belong to the disabled person, like life insurance and property. Overall, this is going to be a part of the family’s greater estate plan, so consult with a lawyer to see if it makes sense.