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Balancing Acts & Great Expectations
The need to prioritize in your life increases greatly when children come along. When you have a child with deaf-blindness the urgency of prioritizing increases enormously, just as your available options, time, and energy seem to decrease enormously too. There are so many different balances that you need to manage, and the constant feature in almost all of these balancing acts is the care for your child with deaf-blindness of course. How do you do your best for that child while also doing well with your other children, with your partner, with extended family, with friends and neighbors, with your job, and with your own needs and interests? And how do you ever really know that you are doing your best, or that you do have your priorities well sorted? When are things ‘good enough’?
One of the most interesting balancing acts for me as a teacher is located entirely within the care and raising of your child with deaf-blindness. Put crudely, how much should you push, encourage, persuade, and teach them, and how much should you just let them be who they are? Tim Hartshorne put this challenge in a much more refined and sensitive way in his article “Mistaking Courage for Denial” (http://www.alfredadler.org/articles):
“The parents of a child with disabilities are confronted with what could be called the ‘courageous paradox’. On the one hand, they need to be realistic about their child and to be able to feel genuinely that if their child never improves, never progresses, never becomes that healthy human being that they want their child to be, that this is okay. This is not resignation: This is real acceptance. Parents of healthy children may believe they do this, but they can have a reasonable expectation that their child will grow up and be a well functioning human being. Parents of a child with disabilities experience much less certainty, and so acceptance can take enormous courage.
On the other hand parents of a child with disabilities should never give up the hope that their child will exceed all expectations, and make tremendous progress. This is not based on fantasy, but on hope. If the parents give up hope their child’s future is much less certain. When parents are able to maintain both of these positions at the same time, they are demonstrating what Adler meant by courage based on both social interest and activity. By accepting their child as worthwhile and able to contribute even with no change they are showing social interest. By never giving up hope for their child’s potential, parents are led to action. Parents with courage will seek out services for their child and push medical and educational institutions to provide what the parents believe their child requires.”
For many parents the ‘courageous paradox’ is influenced significantly by very negative early medical prognoses, which appear, from parent reports, to be as common now as they were 40 years ago. If the initial outcome of these negative predictions is to depress and de-skill parents, later there is often a backlash, so that determination to prove the negative predictions wrong can become a driving force for the parents for many years into the future (for one parent I know this potent backlash effect is still working powerfully and consciously after more than 30 years). When I once complained to a doctor about the prevalence of these early negative prognoses he told me that they were often a strategy that doctors used precisely to energize and positively impact parents! Not only does this seem highly unlikely, but there are clearly many better and more respectful ways to support and encourage parents.
A psychologist once suggested to me that we are at our most dangerous and unrealistic when things are going really well. The parental determination to prove early negative predictions wrong can indeed be at its most troublesome when the child does remarkably well in their development. To get so close to confounding all those early negative predictions can encourage a loss of perspective. Last year I was involved with three families whose children, developing remarkably well and following an academic curriculum in general education settings, all suddenly developed severe behavioral issues. These included pulling out clumps of their own hair, biting and scratching their hands, sweeping everything off tables, over-turning trash bins, hitting other children, refusing all eye contact, and generally refusing to cooperate, often accompanied by lots of manic laughter. From being model students all three children became major challenges to their school staff. I was involved from a distance in all three cases, and from initial discussion it sounded as if there was a common pattern, and might be a common cause centered on expectations that were too high, pacing that was too quick, insufficient adaptations & modifications, and generally too little individualization in the ways the curriculum was being delivered. For the parents these changes in the child had a traumatic impact:
“I feel heartbroken because of how far she's come, as if all this is just eroding away at what we've spent years building, as if it's a crucial turning point and there may be no way back.”
As it became apparent that these were in fact the likely causes of these issues, all three parents were struck with remorse and guilt and blamed themselves for not being more aware and sensitive to their child’s needs. One mom told me that she felt like a caricature stage mother, having pushed her son much too hard and totally lost sight of who he was and what he needed. I didn’t see it like this at all, and argued that in each case the parent had done precisely what they were supposed to, and done it very effectively, their children had benefitted unpredictably well, and now the children were showing that it was time to tweak things and get a better fit with the school day. From our discussions it seemed that each child had become aware of just what a high-wire act they were performing day after day in these school settings – we all thought that the children could cope fine in these classes, but the children no longer believed that they could.
Many ideas were mooted for helpful solutions – things like easing the child’s self-consciousness and anxiety about failure by helping them to verbalize their feelings more often and more openly, creating more clarity about what was coming up, and what was expected of them, maybe creating a buddy scheme so that the child could request/receive support and help on an easy and casual level throughout the day, and introducing a sensory integration kind of approach to help maintain appropriate levels of arousal. In fact, all three children were able to remain in their existing placements with success after discussions and appropriate tweaking.
Of course it would be nice to have strategies to avoid these startling behavioral glitches and get everything perfect all the time, but that is probably never going to happen given the impossibility of really knowing what the children are capable of, and the impossibility of even knowing how they are managing most of what they are already doing. We know that many (most?) children with deaf-blindness fool people with their determination and perseverance and adaptive skills, so they end up sitting unsupported, standing and walking, acquiring and using language, dressing themselves, or doing math and following stories, triumphantly confounding all those early negative prognoses. People are then inclined to think "Good, all that stuff has been mastered now. We can follow the curriculum with some adaptations and modifications, and all will be well". In fact all those great "normal" things the child is doing are demanding much more attention and energy and concentration and time and sheer thinking than they ever are for their regular peers, and when it gets too much the children (because of language limitations, or poor self-regulation, or poor social skills, or executive function problems, plus who knows what else??) don't turn to someone and say "I need a break" or "You know, this is all a bit too much for me" but instead they sweep the desk clear, or overturn their chair, or drop to the floor giggling, or smack the child next to them (or themselves). Because they've been fooling us and making it all look easy and fine, these behaviors look sudden and inexplicable and strangely nonsensical.
For the parents, I think the risk of expecting too much is absolutely the risk worth taking. Parents and other family members are, after all, the central key figures in enabling and facilitating and preparing for each child’s triumphs throughout their school years, so they need to have a strong drive towards and focus upon the next positive steps. When these kinds of behavioral changes crop up I believe they are the price of the child’s success rather than the result of the child or anybody else having done anything wrong. In almost every case I have been amazed at how well & how quickly these crisis episodes can lead to a more balanced and appropriate situation, a better place, a better fit. The children’s resilience, coupled with the right cooperative relationship between parents and professional team, carries them forwards on a zig-zag path towards destinations that really could not have been predicted in early infancy. But there is always a need for periodic reminders that things that now seem easy for the child might not in fact be as easy as they seem.