When your child experiences a traumatic brain injury, it is devastating and completely overwhelming. Life is suddenly divided into “before” and “after.” In the early days and weeks, all of your energy is focused on survival and emerging from the coma. You feel joy, relief, and a lot of uncertainty. Then begins the long path of recovery. It’s a gradual and challenging process with no clear endpoint. At some point, you settle into your “new normal.”

As a parent, you manage all of these stages from the perspective of caregiver and advocate. But your child goes through a range of emotions, too. Their frustration at being unable to do some of the things they could in past, inability to see how they are different, and difficulty communicating can be emotionally wrenching for both of you.

Helping your child deal with the developmental setbacks and challenges of a traumatic brain injury will be one of the more difficult – yet rewarding – experiences of your life. The child who experienced the brain trauma is not the only one going through a major change. This type of injury also affects parents, siblings, extended family members, friends, teachers, and co-workers in a variety of different ways. Here are some things that might help, if you’re on this journey.

Find Your New Normal

It may take a while, but one of the most important things you can do is discover what your “new normal” looks like. Before a traumatic brain injury (TBI), your day may have started off at a reasonable hour, with structured progressions throughout the day. After your child experiences a TBI, things could look wildly different. An infant or toddler who was sleeping through the night may suddenly need additional care at inconvenient times. Kids who would have quietly enjoyed a bowl of cereal in the morning for breakfast may be unable to hold a spoon, much less feed themselves properly. Each step of your day may find you dealing with surprises — and not always pleasant ones.

You can help your family find your new normal by tracking times that things tend to happen. For instance, you may find that your child suddenly becomes fussy or hyperactive at 2 pm every day. Turns out, if you’re able to put them down for a nap slightly before that time the crisis will be averted. Proactively tracking these times, even if you’re just jotting notes into your phone or on a notepad, can provide you with a way to track new patterns as they begin to emerge.

Expect the Unexpected

Children who have experienced a TBI may find themselves questioning everything in sight, disliking their former favorites and with personality differences that can be frightening. Generally, your child will not remember the event that led to their brain damage, leaving them confused and uncertain — and perhaps even frightened and overcautious that something else could happen to cause another setback for them. Recovery is a long road that can take months or even years and a great deal of hard work to regain full use of your child’s faculties. Older children feel significant frustration at finding that beloved activities are suddenly beyond their reach due to lack of coordination or slowed reaction times. You can help your child by focusing on finding new activities and interests, and lessen the importance of what used to be.

Focus on Small Wins

Small wins and daily successes should be celebrated whenever possible, but be careful about setting goals that are unrealistic or unattainable. The best option is to be optimistic, but realistic – if your child was an aspiring gymnast and is now unable to walk, there is a very long road ahead before they are able to tumble or run as they previously did. You may find that your child is facing depression at changes to their appearance due to the TBI or difficulties handling everyday tasks such as self-care or communication. In serious cases, your child might suffer lasting disabilities that require using a wheelchair, being visually or hearing impaired, and having cognitive deficits.

While it is challenging to watch your child struggle through daily chores, celebrating each milestone allows your child to gain confidence in small measures which can add up to much larger wins as time goes on. Help them see that recovery is a marathon and not a sprint. It’s unrealistic to expect that life will be as it was. Try to let go of the past. They survived something huge. Whatever comes next is a blessing because your child is alive. Every hurdle you overcome together is a cause for celebration, so do something special to mark those moments.

 

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