I was deeply moved by reading stories posted by moms on the Hemi-Kids support group about their children having social issues at school. Unfortunately, it seems, from hearing stories upon stories of pre-teen/teen hemi-kids, that schools can be difficult to navigate physically, emotionally, and socially for some of these more sensitive kids. Kids with extra challenges can feel overwhelmed, anxious, and embarrassed about their differences. They often have to work harder to achieve similar results, or maybe can’t achieve them at all. Studies have found that hemiplegia is unique in that disability isn’t necessarily obvious, and so peers can actually be much harder on these kids than if challenges were more apparent.
Emotional and Behavioral struggles also are more common in kids with brain injuries (stroke, cerebral palsy, etc) than in the neurotypical population. Whether this is due to the actual area of damage or to altered pathways because of the damage varies for each child. These are the unseen challenges our families face, and can sometimes be more difficult than the visible (physical) hurdles.
E struggles with emotional regulation. She can get upset easily, and stores up emotions until they burst out. She still requires a lot of emotional guidance, which I find much more challenging than the physical assistance now that she is older. However, I have found that the answer lies in patient empathy. This is generally well described in the mindsets of “attachment” or “gentle” parenting. Punishment is not effective, and further isolates E from feelings she cannot control or contain. E frequently feels overwhelmed, insecure, and overstimulated. “Typical” things take more work for her to process, practice, and learn. She is embarrassed by her splints and braces. I believe her tension and feelings just build up without her knowing. I am trying to get better at connecting with her to help her release these pent-up frustrations BEFORE they boil over.
E also used to be very hesitant and “shy”. We encouraged her in confidence, but rarely “pushed” her to separate from us or try things before she was ready. (I did, several times, and always regretted it). As far as this goes, she started making great strides in confidence around the age of 5-6.
There is an increased prevalence of emotional and behavioural difficulties compared with the general population and the determinants of such difficulties are similar. I wondered why are emotional and behavioural difficulties more common in children with CP than in the general population? A common view is that the brain damage may have disrupted pathways or networks which regulate emotions and the learning of behaviour and render the brain less adaptive. The present finding that the difficulties are more common in the children with an IQ of less than 70 would support this. But it would also support the view that there may be unrecognized subtle learning difficulties which render many situations more difficult to cope with, leading to the reactive behaviour problems displayed by most children in such circumstances. Another possible cause is that the child may feel self-conscious and embarrassed in aspiring to be like other children and as a result experience emotional symptoms and feelings of isolation. This might explain why children with hemiplegia are more likely to have emotional and behavioural difficulties than children with more severe motor problems. Because the difference between them and the general population is smaller, their peers, parents and teachers, and they themselves may have unrealistic expectations that ‘normality’ can be achieved; peers in particular may be more likely to tease and discriminate. However the current finding of these difficulties being already present in preschool children argues against such an explanation as self-consciousness and discriminatory attitudes from peers are unlikely to be present so soon.
Parent-child interactional styles may also contribute to the higher prevalence. Parents of children with CP experience more stress than parents of children in the general population; and parental stress is known to be associated with emotional and behavioural difficulties in all children. But maybe even more important is whether parents of a disabled child manage and set boundaries differently for a disabled child. I highly recommend the article by Woolfson which reviews the literature on how societal views and parent preconceptions may mix with feelings of guilt and sadness to alter fundamentally how parents deal with a child with CP. Certainly the finding that emotional and behavioural difficulties are already present in the preschool years when parent-child interactional styles are set is consistent with the hypothesis that a disabled child may be managed differently.
(From: Why are Children with Cerebral Palsy More Likely to Have Emotional and Behavioral Difficulties, by Allan Colver)
Some resources I have found helpful:
- Helping Your Child Manage Her Emotions – Aha! Parenting – I find this a very helpful website for learning how to guide E’s emotional and social development. It doesn’t come naturally to me (I didn’t learn a lot of emotional intelligence as a kid, negative emotions were repressed). I also find her e-newsletter helpful.
- Emotional Intelligence – Helping Your Child’s Emotional Health
- Peaceful Parent, Happy Kids: How to Stop Yelling and Start Connecting – Dr. Laura Markham. If I only had one parenting book, this one would be it. It develops the emotional and social intelligence themes and gives you understanding and strategies to guide your child into learning to appropriately express (instead of repress) her feelings.
- Helping Your Anxious Child – A Step-by-Step Guide for Parents
- Anxious Kids, Anxious Parents
- Playful Parenting
Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would. Yes, there is grief, and anger, and regret, and frustration. But there is also courage, and hope, and compassion, and purpose. If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling. Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story. Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him. If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge. YOU are worth it.
I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad). I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control. You are already a part of this story, whether you know or believe it or not. While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny. Maybe all your life has been leading to this one moment: The Bridge to God.