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Family Engagement

Throughout my career as an itinerant special education teacher I have been closely observing and assessing children in their home or school settings. What many people don’t realize is that I have also been closely observing and assessing the involved adults as well as the children! Delivery of a personal and individualized service demands knowing your customers/clients (strange terms to be using as I have never thought of children and their families and professional staff as anything other than who they are). The knowledge base, literacy level, experience, attitudes, expectations, insights, concerns, priorities, and confidence of those adults all need to be gauged so that my input is matched and truly as helpful, meaningful, and appropriate as I can make it. I have very rarely talked much about my observing parents and other family members and professionals as I’m sure that it might inhibit them when they are with me. Although the downside of my unobtrusive way of working is that people frequently don’t realize how hard I am working all the time to observe and assess their child, but the upside is that they rarely realize how hard I am working to observe and assess them too!

I have often talked and written about how inspiring and fascinating I find the children with whom I work, as I follow their progress through life and observe their coping strategies, the ways that they learn and adapt, and their amazing ability to achieve their desired ends even if they appear to have minimal means for doing so. I have rarely talked or written about this aspect of the parents’ progress through life even though I find this aspect of my work just as inspiring as the children’s achievements. In an earlier post on this site I referred to parents going to heroic lengths for their child, and as I expected a number of parents responded and told me that there was nothing at all heroic about what they were doing, it was just what anybody would do for their child. This is not correct of course, and responses to the birth of a child with significant developmental difficulties are extremely varied and personal. But what is obvious to me now is that the experiences of these parents have a deeply transformative impact upon them, and produce growth and change of which the parents themselves are largely unaware until an episode of reflection is visited upon them. One of my professional goals is to facilitate these episodes of reflection for individual parents as a creative aspect of transformation.

A blog post that I read several months ago talked about the two losses that occur with the birth of the child – the loss of the child the parent was expecting, and also the parent’s loss of the opportunity to become the parent they were expecting to be. Without denying these losses, and the right of each parent to have the losses acknowledged and respected, I have always been keen to focus on the real child in front of me rather than the expected one, and on the real parent in front of me rather than the imagined and anticipated one – working as an itinerant teacher of children with deaf-blindness is nothing if not pragmatic and intensely practical. The philosophy of “follow the child” has, in most cases, to be matched by a philosophy of “follow the parent”, and both philosophies are helpful since they emphasize getting to know the child and the parent as an urgent priority. Whenever I have been able to remain in touch with a family over an extended period of time it is just as fascinating to see the changes that occur in the parents as in the child. Without denying the losses, as I write this I am interested specifically in the gains that occur after the birth of the child. Any such gains may be evident only a long time after the child’s birth, but there can be all kinds of gains nevertheless.

Personal growth is very individual and often hard to measure and multi-faceted, and each of us is probably the least likely to really appreciate our own transformations. Jacques Barzun reminded us that “In teaching you cannot see the fruit of a day's work. It is invisible and remains so, maybe for twenty years.” There are sometimes clear external indicators of growth, as when a parent eventually becomes a teacher of the deaf, or a social worker, or joins a committee to advocate for patient rights or welfare benefits. For bureaucrats and politicians these are always relevant and acceptable markers for determining successful intervention and support from agencies such as the ones I have been involved with over the past 40 years. But for me the internal transformations are much more significant and interesting, yet harder to determine unless one really knows the person. It is understandable that parents often talk about these transformations in fairly negative terms – exhaustion, lack of sleep, loss of friends and social life, and so on. On the positive side they often need to be helped to appreciate other aspects of their growth and transformation. Changes in confidence, in knowledge (“are you a nurse?” is a question often asked of parents as their child grows), in assertiveness, in the balance of passivity versus a more proactive approach to life, in compassion, and in overall life values, are extremely common features that can be observed in this process. I especially like it when a parent can relate their progress in humorous terms. An example would be the parent who related this exchange while her child was on one of her many hospital admissions:-

Nurse: Today we have a nursing student on the floor who needs to do a trach change. Do you think it'd be possible for her to change Jane's trach this morning?
Mother: No, she'll just be traumatized.
Nurse: Oh, of course, sorry, we don't want Jane traumatized.
Mother: No, I meant the student would be traumatized.

A tale like this, related in this tone of voice, can demonstrate a long exposure to stress and anxiety and frustration at the same time as it also demonstrates a healthy resilience and an awareness of special personal capabilities. Understandably it is usually very difficult to get parents to devote time to reflecting on the ways they have grown since the birth of their child with deaf-blindness. I am hoping that people reading this post will share their thoughts on their own personal growth, where they have come from, or where they are going or hope to be going. What about you?

David Brown

Posted Aug 22, 2015 by David Brown

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Comments (5)

David - I started grasping for information on deaf-blindness 9 ½ years ago when my daughter was born. New world, with way too much to take in. I was directed to read and learn from many of your articles and publishings. I have 3 kiddos, at the time of my daughter's birth, I had a 3 year old, 1 year old and a newborn with more medical complications than we knew what to do with. She was a great surprise of complications that were never detected before birth. Now we know that she is a genetic masterpiece that is so rare we don't even have a name for her diagnosis, just know the mutated chromosome. To say that we have grown personally is an understatement. I just laughed at your trach dialogue. Been there, done that. Along with having a DB daughter, Ivey, who has bilateral anophthalmia. The stories I can tell about her love of popping our her prothesis and the speechless people left in her wake. We laugh now, but it took much adjustment to learn that there are times you either laugh or cry, and we have tried to choose tears of laughter over tears of sadness.

Gwen Sirmans

Posted Oct 28, 2015 by Gwen Sirmans

Sorry! My opening sentence below should read "As with my previous posts far more people are commenting privately on Facebook than here on the Family Engagement page. Here are two interesting responses:-" Put it down to jet-lag!

David Brown

Posted Sep 3, 2015 by David Brown

As with my previous posts far more people commenting privately on Facebook then here on the Family Engagement page. Here are two offers any interesting responses:-

"You David Brown can anytime try and get my reflections of my parenting, but it would take a long interview and a novel to write! I appreciate your blog."

"This is something I've talked with other parents about pretty frequently. We're all slightly ashamed of the people we were before our special needs kids. We've all learned a lot. I sometimes wish for the life we would have had if Tony had been typical, but then I remember I'd have to live that life with the old me. And a different Tony. And it just doesn't seem that appealing."

David Brown

Posted Sep 3, 2015 by David Brown

I have found the opportunity to know the child and family across the life-span is invaluable. In one of my previous lives, I was in private practice in the Greater New Orleans area. Providing private intervention freed me from the restrictions of system regulations and most reimbursement issues and allowed me to work with children and families from early identification to young adulthood. I, of course, did not provide direct intervention with the child and family continuously, but I found the child or family would consult me during periods of developmental change, new school environments and challenges, and just when the going got tough. I think one of the advantages the child/family found in my services was that I was "historically" connected and was able to increasing take the "long view" when bumps in the road were encountered.

The other concept that comes to mind as I read your blog, is the wisdom a social worker colleague shared with me early on in my career...always direct you intervention with the child to the "family system." Recognizing the miniscule amount of time we as professionals have with the child/family and the unlimited amount of time the family has with family members, it just makes sense to direct services to the family system.

Why do some families seem to make it through the challenges with relative ease while others do not? Why can some families direct their energies toward positive strategies while others chase negative outcomes? How can some families work through grief, anger, and disappointment quickly while others continue to hang on to these emotions for years? Why are some families so obviously healthy, while others are so obviously not? These questions continue to needle me. I wish I had the knowledge and skill to facilitate family growth on my schedule. However, I've come to appreciate that each family is on its own path and the journey is an individual one.

Lots of thoughts for so early in the morning!

Michael Norman

Posted Aug 25, 2015 by Michael Norman

I always say,
"I've grown older and wider."
"My liver has taken a beating."

But seriously, I've changed in every sense of the word. Things that once were important to me, no longer are. Things that might have upset me, no longer have that sort of impact. After all we've been through and what we've endured, I feel lucky to still all be here, together, and find myself humbly grateful!

Anna Miller

Posted Aug 22, 2015 by Anna Miller

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