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Balancing Acts & Great Expectations

Family Engagement

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.


David Brown

Posted May 4, 2015 by David Brown

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Comments (11)

What a great article! Thanks for sharing your expertise. I'm sharing with Louisiana parents via FaceBook!

Regarding "negative early medical prognoses" Stoner et al (2005) discusses how the pattern of behavior and sense of distrust associated with medical professionals that may originate during the diagnostic process continues into the future and influences parent's interactions with educational professionals. Finding that balance between providing objective information while "supporting and encouraging the parents" is essential. Thanks again,
Michael Norman

Michael Norman

Posted Jun 8, 2015 by Michael Norman

As with my first piece on here, most comments have come to me on Face Book! From parent comments it is clear that the 'courageous paradox' has two sides to it. The first is that lifelong internal questioning of oneself about could I have done better, should I have done differently, did I get the priorities wrong, and so on. The side that most parents wrote to me about reflects Tim Hartshorn's original article and shows the very widespread tendency of professionals to misunderstand parents in a very patronizing way. Namely, when a parent says anything positive or upbeat about their child they are perceived as being in denial and avoiding the obvious realities of the child's challenges and current level of development. On the other hand, just to make sure that the parent can't win and won't be truly supported, when they speak of their child's challenges and ask professionals to make allowances for these challenges, and to use care and attention in supporting the child, the professionals perceive them as being over-anxious and over-protective.

David Brown

Posted Jun 6, 2015 by David Brown

David, it is so wonderful read these perceptive insights about both parents and children with deaf-blindness and the challenge of everyone finding the right balance. Once again it is really captures the absolute importance of a strong and resilient family and the need to empower and support families for the good of the child. This is is great information to share with among families and I also agree with Minnie that every teacher and service provider should also read it. After that I think the parents and team members should discuss what they've gained from reading this piece and how they can apply what they've learned from that discussion to planning and providing the right supports, activities, and opportunities for the child. I think this article also gives us lots to think about it terms of understanding challenging behaviors and the role that the environment, expectations of others, and even the sense of one's self plays in promoting or reinforcing those behaviors. So much to think about. Thanks, David!

Julie Maier

Posted May 20, 2015 by Julie Maier

Hi David. With Dylan's home based school program our philosophy centers on following Dylan's lead. Even so, it seems there is not a week goes by that his Intervener and I don't question ourselves on when to encourage more and when to accept his indication he is not up to school today, or he wants to write with just his Intervener, or he needs to take a break or. But each time we question, he again shows us that when he feels up to it - which is influenced by appropriate physical, environmental, sensory, and educational supports - he does it all with such ease and enthusiasm, that we know following Dylan is the only way.

Kimberly Lauger

Posted May 18, 2015 by Kimberly Lauger

Wonderful article again Sir. One that I must print and share with Andrew's teacher. One that reminds us the importance of following his lead and learning the give and take part of respecting each other and especially HIM! Each day can be totally different than the next... Right now we ourselves are dealing with the "clearing of the desks" behaviors.

Minnie Lambert

Posted May 18, 2015 by Minnie Lambert

David, what a wonderful article, and unfortunately what you share is all too true. These children are such determined human beings and it is easy to forget that they are children who can become overwhelmed with their lot....much like their typical peers. I think all parents struggle with finding that balance between great expectations and glad acceptance. Still I think it is true that parents of children with disabilities face a much greater struggle to find this balance. The good news is, these children are courageous enough to keep trying to communicate their needs until they are understood. The other good news is that their parents keep insisting on finding help from people like you who can support their educational team in finding the right tweaks to validate the great expectations and glad acceptance their children deserve.

Kate Hurst

Posted May 13, 2015 by Kate Hurst

Sorry, my math was out just now! What I like is Angela's 3 Cs - "calm, consistent and considerate."

David Brown

Posted May 8, 2015 by David Brown

Interesting comments so far. Angela, I like your statement that "Less is better!" The real art is in knowing when less will be better and when a little extra challenge can be an appropriate teaching point. We all know that the children's sensory needs and challenges are generally grossly misunderstood and so overlooked. I also like your 2 Cs - "calm, consistent and considerate."

Tracy's comment about false hope being harder to live through than excessively negative predictions is important, and I must say new to me. Although I don't believe that any professional is deliberately over negative as a strategy to support and encourage parents, we do know how effectively that can ultimately inspire parents. The over optimistic view is something I have always wrestled with because I take such a positive and individualized view of every child, and I know it is important for me to remember to try to explain clearly what I mean when I say things like "She is pulling to standing in such an organized way", or "I love the way she uses both hands to stabilize herself before using one to grasp the toy, or "It is so smart of him to get horizontal on the floor to look at the book". These kinds of positive statements do need to be set in the context of the child's issues and current level of functioning so that they are not heard as implying that things are okay now. Being just realistic enough but also just positive and optimistic enough is at the heart of that 'courageous paradox'.

David Brown

Posted May 8, 2015 by David Brown

Hi David, thank you for such a wonderful article that really hits home for us. I think that at that moment that the doctors are delivering such devastating, life shattering, life changing, soul crushing news... Your mind as a parent goes from sheer unbelief and terror to just tying to absorb the information... For months it seems like a dream and then you find your sparkle.... Your little sparkle of hope that oozes out of your gutsy and determined child and you just run with it... You would like to run with it whilst holding up your middle finger, but never risk it, just in case you might need that medical professional for some reason in the future, even if it is to just say "I told you so"! I have found that in our struggle to fit into to mainstream school... Less is better! The more relaxed we are at home, the more lenient the school is regarding homework etc, the happier and more settled my daughter is... When the pressure is too much... Doors slam, tears shed, spontaneous awkward and completely not normal hysterical laughter prevails and it is time for a hot bath by candle light, soft (not so soft that we can't hear it around the house) music, and time to reset and start again. Down time is sacred for her and I can't stress enough the importance of calm, consistent and considerate.

Angela Begas

Posted May 5, 2015 by Angela Begas

Another great article, David. We would love to translate it again.
Claudia

Claudia Junghans

Posted May 5, 2015 by Claudia Junghans

Another fantastic piece David! I could write so much in reply but will try not to!

I was interested to read about negative early diagnoses being used to motivate, as even if they weren't being used deliberately in our case I do find a real pleasure in proving people wrong and I love it when my daughter does something she "shouldn't" be able to do. She clearly didn't get that memo.

And conversely of all the things that we went through in the early days the one thing that really got to me was the woman who carried out the newborn hearing screening. When there was no clear result she gave us a raft of reasons why, told us it would be fine - that the testing with audiology would probably be a formality. When we then went into the appointment, with a daughter who at that point only had a heart issue, to get a severe to profoundly deaf diagnosis it was such a shock. Being given false hope lead to far more pain than a temporary worry but slight preparedness.

I am at a stage where I see my 5 yr old flying at school but am very aware of how much effort it takes, and try to impress upon her teachers that we need to keep that in mind.

Tracy Cook

Posted May 4, 2015 by Tracy Cook

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