Published On: Fri, Nov 27th, 2020

Hidden Costs of Parenting a Child with a Severe Disability

When people think about the costs of parenting a child with a severe disability, they probably generally think about medical bills and equipment, like wheelchairs or braces. They may also think of the costs of hiring a professional caregiver, at least for a few hours a week, if one can afford to do that. However, there are many other costs (like gas) that people probably don’t consider.

Home Remodel

When you have a child who requires a wheelchair or has other movement difficulties, you may find that the home that you always considered perfect actually has several problems. 

No bedrooms on the ground floor? That’s going to be a problem. Those two steps up to your door? They may be manageable for a while, but a ramp would really help. That narrow turn around the hallway? Turns out the wheelchair can’t really turn there. That small half bathroom? Wheelchair can’t get inside and close the door behind.

Your house may require an extensive remodel in order to work for your child, or, in extreme cases, you may find that you have to sell your home and move.

The same problem may be posed by your car when you have to trade that four-door sedan in for a minivan.

Always On the Road

Parents of disabled children often spend a lot of time in the car, and the cost of gas adds up. Your child most likely has a lot of places they need to go to get the care they need. Hospitals, therapy centers, special schools, etc. Many of these places are not going to be near where you live. 

There may only be one school within an hour’s drive of your home that has a program that is suitable for your child. Getting to the special therapists that they need to see – often multiple specialists for a range of issues – can take hours of driving time each week. The distances you have to travel are typically amplified greatly the more rural the area in which you live.

All of this adds up to a lot of trips to the pump and a lot of money going into your gas tank.

The Amount of Time Spent

In addition to the financial expense of driving around everywhere, there is a huge cost of time as well. People with a lot of time often undervalue it. Time is one of the most precious things that people have. While on the plus side, you get to be with your child a lot of the time when taking them all over, most of it is quantity time rather than quality time. 

Spending 30 minutes with your child playing a game or doing another activity is far more valuable than two hours spent in the car, driving them around. There are a lot of other time costs as well, like time spent on the telephone. You will likely be spending a lot of time on hold with insurance, as well as speaking with your child’s assorted specialists.

Personal time pretty much ceases to exist when you have a child with a severe disability, especially if you have other children as well.

Inability to Work

With so much time spent on your child, it can be difficult to find time for work, and many jobs are not especially understanding of your situation. Many parents of disabled children are either unemployed or underemployed. Finances can be extremely difficult to manage in this situation, while possibly having a lower income and the added financial costs already mentioned combined with expenses such as:

  • Special food
  • Special clothing
  • Diapers for life
  • Specialty childcare

Families affected by cerebral palsy should contact a trusted birth injury lawyer who can help file a claim. This may be the only way to pay the bills.

Emotional Distress

Having a child with a severe disability can have high emotional costs in several different ways. First, you have the difficulty of seeing your child unable to participate in activities or relate to other kids. Watching your child struggling can be extremely difficult, especially when you are unable to do anything to help.

It can also be extremely draining to feel like you aren’t able to give enough attention to your other children because the care of your disabled child takes up so much of your time. A small child is unlikely to understand that you are trying to make as much time for them as you can. 

Even those who do understand what you are going through, still have to struggle with the fact that you can’t make it to their dance recital or baseball game, because you are busy taking their sibling to one of their therapy sessions. Understanding doesn’t necessarily make things any easier.

The situation can also be challenging for a relationship. When you don’t get a night out with your spouse unless you are at the hospital together, it can be quite trying. Parents need some time to themselves occasionally. They love their kids, but for their emotional health, they need a break from time to time.

Social Consequences

For single parents of children with severe disabilities, it can seem nearly impossible to try to date. Most parents don’t even have time to spend with their friends. Many friendships end in these situations. Not because of any ill will between the friends, but simply because as they never get to see each other anymore, they drift further and further apart.

Aside from often not being able to make enough time for others, there is almost never an opportunity to make some much needed time for yourself. The understanding of others for what you and your child are dealing with is vital. Having a loved one who is willing to learn how to care for your child for an hour every once in a while so that you can focus on yourself can make a world of difference.

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