Today’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the challenges of parenting a child with a brain injury. Read Isabella’s entire story on our website.
Parenting a child with a brain injury is completely different than parenting a child without a brain injury. Isabella is totally different since she suffered an acquired brain injury (ABI). Her brain has changed, so I had to change my parenting as well. Prior to Isabella’s ABI, she was your typical four-and-a-half year old child. I do not remember her ever being angry – she was a very happy child who had an infectious laugh.
Since Isabella’s ABI, I have found that in-home behavioral (ABA – Applied Behavior Analysis) is making an enormous difference in our lives. We have had a behavioral team for over one-and-a-half years. I have been receiving ongoing parent training during that time.
Parent training has included identifying triggers, positive reinforcements, de-escalation strategies, effective instruction delivery, coping strategies, implementing rules and many other behavioral aspects. We have a behaviorist who works with me on training and program development. The behaviorist writes the programs that are taught to Isabella. The behavior monitor works directly with Isabella on the programming. Some of the programs we are working on are coping skills, identifying emotions and how she feels, average daily living skills, social skills and alternatives to destructive behavior. As Isabella masters a skill, another one is added. Progress is slow but it works. It requires consistency, patience, predictability, follow through and commitment. This is our life and I am willing to do whatever is necessary to help my daughter. These are some of the things that I have learned:
- Focus on safety at home. Our home is adapted to meet Isabella’s needs. This means placing any unnecessary items away to make it less stimulating and less overwhelming. Each room is childproof. For us this meant magnetic locks on the cabinets, sharp objects placed up high, glass items removed, outlets covered, additional locks on doors, closets locked, gates up, etc. Isabella’s bedroom is a “safe” room where I can place her for time out. It has a custom half door, furniture bolted to the wall, mattress on the floor and windows covered. When Isabella is raging, this is where she goes so I can safely maintain her.
- Pick and choose your battles. Allow choices whenever possible. Medication, bedtime, therapy and showering are all not negotiable. However, choices for meal and clothing are always presented. Relinquish control where appropriate and it can make a big difference.
- Schedules and routines are so important. This helps with transitions and allows for predictability. Mealtimes, showering, medication and bedtimes are all followed strictly.
- Find a support network. Family and friends are the natural supports. I have found having brain injury survivors, parents of children with brain injuries and parents of those with special needs to be the most accepting and understanding. Those are the people who can most relate to my everyday life.
- There is help out there, but you have to ask for it. I was ashamed, embarrassed, sad, scared and a ton of other emotions with how bad things had gotten. Isabella would rage for hours. For example, she’d throw chairs, bite, kick, hit, spit, go to the bathroom where she shouldn’t, flip furniture, destroy property, etc. Asking for help didn’t make me a bad parent. It made me a better parent and allowed me to give my daughter what she needed to be successful.
Right now, Isabella is going through a very challenging time for various reasons. What helps is having a home that is adapted to meet her needs, behavioral strategies in place, a support network and behavior team that is committed to Isabella. Parenting Isabella produces a lot of emotions for me. There are days where my heart breaks for her. I see her trying so hard to not be impulsive, to use her words, be safe and she just isn’t able to. Seeing her try so hard and not be successful is so sad. There are days where the aggression is nonstop. On those days I remind myself that this isn’t her fault or mine. This is her brain. On those days, I take a minute to just take deep breaths. There are some days when I see Isabella successfully using the skills she has been taught and those are the most rewarding times.
No matter how good or bad the day, when Isabella was in the hospital dying before my eyes, I prayed to God (or whoever was listening) to save my baby at all costs. No matter what the consequences were of that decision. Isabella was saved. I stand by that every moment of every day.
What part of parenting a child with a brain injury is the hardest for you?