Friday, January 13, 2012

Flashback Friday: "Why doesn't he have to..."

From my original blog, Small Portion of a Life's Journey, we are flashing back 2 years ago with the following post. While I wrote this so long ago, this topic is still of strong resonance in my life. Juggling normalcy for my family while living quite the opposite of a life hasn't proven easier, but instead we've conformed to a different definition of normalcy.. our own. The following post is extremely long, but also an extremely worthwhile read if you have other children in your household:

Why Doesn't Brayden Have to Do That?
By Ali Harper, Small Portion of a Life's Journey

Hydranencephaly, or any terminal or not-so terminal diagnosis in a family, affects all involved and not only the person (or in my case, child) involved. I know the emotions I feel as a mother to a child with extra special medical needs, and am even coping better with the roller coaster of emotions that guide me through my days. What about the rest of the people in my household, especially my two daughters who sacrifice in many ways, or my husband who spends many hours outside of the home to financially support? I struggle as the mother of two "typically" developing children, and one little one who requires much more time and energy. It is difficult to find the balance in making it work fairly for everyone involved, sometimes it is next to impossible. And although I find solace in the thought that my girls are experiencing struggles that will only strengthen the positive aspects of their individual characters, I worry that they will also feel a sense of resentment towards the circumstances they are growing up in.

Here is a noteworthy paper addressing these issues from a family psychologist's perspective, and an actual study she did on this very topic (can you tell that I am a psychology major?):

Mother, father, siblings and children adapting to disability
Elizabeth J. Bruce. Ph.D. MAPS. MNALAG. 

Daunting is this parenting experience - for while fending for their children's optimum development, many parents themselves are operating in an emotional abyss. What is the reality of the family ? What are the realities of its members? Originally, my doctoral study in the early 90's confirmed the presence of a type of chronic grief which paralleled this parenting experience. But examination of the scores on an instrument commonly used to assess traumatic symptomatology convinced me that it was more complicated than this - some parents, particularly mothers were experiencing traumatic symptoms. Specifically, these mothers were unable to psychologically process this life experience. Fathers were sometimes experiencing the same dilemma but experiencing it differently. With some mothers and fathers at their emotional limits, it was not surprising that a child who was disabled would tell me that he or she could not tell their parents what was happening to them at school because "they [the parents] would get too upset". A similar story emerges for some siblings. Their parents did not know how frightened they were of their sibling who had all these strange behaviors. The title "Elite Parenting" is borne out of the need to recognize the enormous psychological challenge parents have - namely, to recover from their trauma and manage their chronic grief so that they are as able as possible to hone a skill base to parent their children. From this perspective, this lecture examines the realities of mothers, fathers and their children and introduces some possible important directions for early intervention.

Before I started my Ph.D, I spent a long time with a large literature base devoted to stressand parenting a child with disability. Research on levels of stress in caregiving is one of my bugbears. One does not need to be Einstein to surmise the stress involved in parenting a child with disability. Of greater interest to me was a very small literature base to do with parental grief - a few parents, some - come academics wrote about grief "for the idealized normal child". This made sense. One might surmise this also. However the principles of grieving related to bereavement were being virtually translated indiscriminately across to this particular experience of grief. Parents emotions were being "jammed to fit" a stage model of grief which Kubler- Ross (1969) had extrapolated from observations with the terminally ill.

A paucity of academic study around grief as a construct allowed this practice to continue. The upshot was that parents who did not move sequentially through to a stage of "acceptance" were considered to have "unresolved grief" - an almost pathological connotation ! This was despite two important articles introducing the term "chronic sorrow" by Olshansky as far back as the 1960's. Basically, Olshansky argued that parents "should" endure a realistic sorrow - it would be a 'given' psychological undercurrent of parenting a child with disability.

My thesis was spawned from this fledgling field of literature. It emerged from a belief that grieving for parents of children with disability should be considered a 'normal' reaction to a "complicated loss" (Bruce & Schultz, 1992) and that notions of acceptance should be viewed as inappropriate - too tall an order. In fact I have never used the term acceptance with parents since a mother way back became extremely angry when I asked her about acceptance. Amidst her angry tears she asked me; " Why should I accept this ? It is unacceptable that this should happen to my child!" I agree - it almost feels disrespectful to accept such tragedy. And the same might follow for parents of children with disability. My work with parents centers around not having to accept- not having to "get over" their grief- instead we talk about what must be put into place if one is to "adapt" to this life experience. This shift seems important- but its timing is crucial- it must be an early rather than later shift in thinking.

Chronic grief- a normal condition
My PhD study was a monumental task. My husband formulated the study design - I would be out at night for three years interviewing families - I agreed ? What would I need to do to show that grief was a normal psychological condition for parents despite the age of their child. For 3 years I, with the help of a trusty colleague, Harry Zable revisited up to 60 families with varying ages of children (6 cohorts of children aged 3,6,9,12,15,18 - tracked over three years ) and talked to them about their lives - and they generously jammed into their unbelievably busy schedules, the filling out of the same set of measures each year ( Bruce, Schultz, Smyrnios, and Schultz, 1994; Bruce, Schultz, & Smyrnios, 1996) . What came out of this ? Grieving was academically shown to be an ongoing feature of rearing a child with intellectual disability - given the ongoing and dynamic nature of the loss - "entirely normal".

Partnerships at risk
Mothers scored higher than fathers on all measures to do with emotional distress in this study. This was not to say that fathers they did not cognitively take on board what had happened, for on a Wishing scale, there were no differences between mothers and fathers wishing for "what might have been". What seemed to be happening, although one could not clearly decipher whether this was about just about male grieving style, was that mothers were being 'forced 'to face their loss. It was symbolized in every normal child with whom they came in contact. But not so for the fathers. They were at work.

Mothers were being overdosed to their loss, and fathers under-dosed. In fact they were sharing different realities. Dad would come home at the end of the day, and Mum would drop the bombs which had been threatening and hurting her throughout the day. Needless to say, without aligning these parents realities, the Mum, herself, becomes the bomb which sometimes needs to be avoided. And along these lines, I have seen several men who do not want to go home purely because they have been under-dosed on the loss and have not incrementally learnt some psychological coping strategies. Marriages and partnerships at risk!

Trauma and grief
One of the instruments I employed in my study was the Impact of Event Scale (Horowitz, Wilner, & Alverez, 1979). It has been commonly used as an instrument to measure traumatic response, and in the assessment of Posttraumatic Stress Disorder. Essentially it measures intrusions, often re-enactments or images which represent the traumatic event, and avoidance- the need to ward off such images. At the time I had been writing copious Victims of Crime reports - teenagers in Pub brawls, assaults - even black eyes were being considered potential for this relatively new diagnosis of PTSD.

It had been staring me in the face - and it could have been surmised - but it was caught up, hiding behind all this focus on stress. There was trauma here. Putting together some of the parent's responses to diagnosis and their life, the scores on the Impact of Event scale and the criteria in the DSM-IV for the diagnosis of Posttraumatic Stress Disorder.... ["... Traumatic events that are experienced directly include serious injury experienced by a family member - or learning that one's child has a life-threatening disease. The likelihood of developing this disorder may increase as the intensity of and physical proximity to the stressor increase..."(p.424;DSM-IV)] , it became apparent that in some cases, parents had been traumatized by their child's condition.- grieving as a process had not even started.

Attachment at risk
Grieving is a complex psychological process of adjusting to a new version of the world and one's place in that world. It is made more complex if parents must turn full circle to embrace a condition in their child which has been traditionally feared. This process of working through is actually constricted if one is traumatized. Individuals are generally 'lost' in this process. They operate on rote. Routines are a "can-do", but complex, emotionally demanding tasks are a "can't do". So how were these parents going to fare in their parenting. In most cases, parents had not even been debriefed. Mums and Dads returned home from diagnosis in an emotional abyss. How would an "attachment bond" suffer in the aftermath of this trauma.

At around this time, I began talking both individually and in groups with parents of children with disability. Groups of mainly mums and I, talked about grief, trauma and attachment.

For most mothers, their child represented a vague and frightening experience - a challenge like no other they had before. Some mums were suffering from the fear that they could not attach to their child, guilty that they could not "feel" for their child - and then overcompensating to try and hide a "numbness". Not surprisingly, a pall of silence would surround the mum who said that she sometimes wished her child would not make it through the night.

Parenting tasks at risk
Throughout this time I was seeing siblings of children with intellectual disability and autism. I was also seeing children with mild disability who were integrated into mainstream schools. Two things stood out. Both were being traumatized by their experiences and neither were able to debrief with their parents. Parents were emotionally overwhelmed and unable to take any more emotion on board. Not their fault - but lots of things were falling apart. Often I would be reeling off a number of things that could be put into place to a mother who was simply exhausted. Over time, optimism had incrementally seeped out of her. The fact that the sibling of the child with autism was traumatized by their brother was too much, too late.

The skill base of Block and Tackle Groups
Two years ago, I began my group skill- workshops for parents - 'Block and Tackle' groups. The skill base introduced in these groups gathered quite a bit of momentum from some work I did with elite athletes of the Victorian Institute of Sport. These athletes were being given a bucket-full of psychological skills to enable them to mount attacks on negativity, practice perfecting their approach to vaulting, debrief from losses on the running-track and grieve losses of identity should their athletic self have to retire from sport. All of this attention focused on the physical ability of one person.!

This skill-base should be given to parents. A notion of building a concept such as 'Elite Parenting" - actually respecting the extra distance involved for these parents seemed a useful building block.

"Block and Tackle" groups turn attention to legitimating the psychological condition which parents will necessarily experience, and then offering them a bucket-load of education and re-framing skills. Naming the psychological context which surrounds this life experience - calling it what it is - 'It is trauma. There is chronic grief. This is normal" is an integral start.

In fact, it is this very realization which allows parents for the first time to let themselves off the hook of guilt. For when we talk about the serious psychological adaptation which is challenging them, the fact that they "are traumatized- that they should be grieving" - suddenly, this parenting experience can be reinterpreted. Specifically, it is reinterpreted from a personal failure in "embracing" this parenting experience, to a respect for what they have been, and are endeavouring to master.

In respecting the grief and its hold, the skill-base begins. How will they process their emotionally grueling experiences so that they can parent this child and their siblings ? What must they learn to parent this child? How will they get their child to a point where he or she is set up- should anything happen to them? .

Conclusion and some outcomes
Recently in one of my Block and Tackle groups, I had been talking about a 40 plus woman who had come to see me. A relationship with a male-friend had just finished up. Her life at forty-plus seemed to be "running out, tapering off". She was not married, had no children and was in a job she disliked. Like many people these days, she was on anti-depressants. I asked her if it was worth looking for another job ? She replied "What's the point, I'm too old?" I asked her whether she might seek a friendship with a man- whatever ?." She replied. "What's the point, I'm too old. No-one would want someone this old !" I spent a terribly laborious session trying to help her find a road which led into her future. A group of Mums, and one (as always!) Dad in the Block and Tackle group were discussing what this parenting experience had offered them. One of the young mums with two boys with autism had no problems finding a word. The word was "purpose". Block and Tackle groups are about the coaching and harnessing of this purpose.

From all of this, some mandates for early Intervention might be summarized :.

1. Legitimate grief and trauma -
Early Intervention cannot be late with the task of debriefing and legitimating the emotional reaction to this life experience. Parents need to be aware of how grief and trauma subvert emotional feelings of attachment towards the child, love towards the spouse and the like.

2. Psycho-education
Mothers and fathers need to be alerted to the complexity of adaptation. Their learning of their emerging reality- life with a child with disability- must be aligned as closely as possible. From here the partnership has a chance to be strengthened.

3. Skilling
Parents need to be taught skills - about managing the chronicity of the grieving so that they can manage the emotional states of their child with disability and his or her siblings. Parents must be taught to set goals to delineate a life experience which often they feel has no markers.

4. Purpose needs to be harnessed and normalized
Parents need to be helped with a plan which can guide their parenting- Disability or not, any parenting is about developing a child who can survive without us. 

I didn't previously recognize the impact this circumstance would have on my two older children. I have always been completely open and honest with them about the situation from the beginning. When I was pregnant, they knew Brayden wasn't growing properly and may go to heaven before we got to meet him. This was sadly, better understood, at the passing of their own cousin to an unknown cause which led to her still birth *RIP Zoey*. After Brayden was born, they also were prepared for the notion that he may not get to come home with us. It broke my heart that not only I, but my other children, would have to say good-bye to him after meeting him. Now we have overcome the initial prognosis and shock, and come to terms with the idea that every second is a blessing and we don't plan for a set expiration date. My daughters know Brayden's fate, and we pray that God will keep him with us for as long as he is meant to be. They know that he may wake up as an angel one day, and although will be undeniably sad, they are okay with that.

Now that he is getting a bit older, living with hydranencephaly is a bit more noticeable aside from his looks alone. Children are wonderful, they don't notice the stares and glares that I do as a mommy. We have gotten those all along, and we faced confrontations from people living in ignorance head-on in a politely aggressive manner (when I indeed would have found greater peace in punching them out, then kicking them while they were down). But now the questions are beginning to be more difficult to answer. Global delays, more intense therapies, new equipment that looks fun and exciting to unknowing little girls, and more attention to be given to the little boy who is no longer a sleeping baby during long periods of the day. All of these notes make for an immediate focus on greater time management skills, for the purpose of squeezing it all in to a day in an equally effective manner that will benefit all parties involved :)

Here are some guidelines I am attempting to follow to be more successful in adjusting to a difficult family situation:

~Since my children are nearing the ages of 5 and 8, the details can be left out of the precise fate of their brother. There is no sense in getting too technical, so I keep it age appropriate when answering questions as they arise. I, at the same time, try to be proactive in addressing concerns or issues they probably don't understand from their viewpoint. I can't rely on their little minds to understand what is happening, or why, when I don't even have a grasp on that.

~I acknowledge the moments when they feel left out or even jealous. Although I try to include them in activities with Brayden, there will inevitably be those times when extra care is what he needs and they just cannot help with that. There are many things that they can do safely together, and even duties they can be put in charge of to make them feel of value in the situation. It strengthens the bond between them and their brother which isn't being formed through "typical" play, while allowing them to be included in caring for his needs as well.

~Since Brayden's older sisters are both little social butterflies in and out of school, they both have many friends in and out of our house. Kids are always inquisitive about any unknown situation they encounter, and will often ask sensitive questions. I encourage my kids to ask me anything, and am sure to help them develop a strong level of understanding of hydranencephaly and the differences that there are between them and their friends, and the little brother.

~Although I always address any questions, concerns, or emotional meltdowns as soon as I'm able, I also don't wait for them to always come to me about these issues. Once in a while, especially when they are displaying some erratic behaviors or an excess of meltdowns, I will talk to them about how they are feeling and why. Sometimes it concerns their brother and the challenges we are facing as a family, other times it is something as traumatic as so-and-so said they weren't their friend for this hour :) Either way, it is good to have an open line of communication...and I think they know it's perfectly fine to be upset, and to show their emotions. I know that they always feel better after addressing them....

~Although they are both eager to help, I never want them to feel obligated to do so. Caring for Brayden is not a chore to them, if they want to help they can and if they'd rather play with their friends then okay too! I never want them to be burdened by their brother's inabilities to care for himself or do the things the other children are doing.

~Since I know that Brayden requires extra care, and the girls are in school during the day, most of that extra care that can be done while they are away they never even see. More intensive therapies, doctors appointments, baths, stretches, exercises, and etc. are all done before they get home, leaving time for us to all do things together. This is a great opportunity for play therapy, interaction exercises, visual therapies, etc. (the fun stuff).

Brayden may not be able to run and play with his sisters as their friends' little siblings do, but he brings us a different kind of joy that cannot be explained. A greater understanding of differences...for example in this posting (this sounds like my own household, in fact):

by Patty McGill Smith,
Acting Assistant Secretary Office of Special Education and Rehabilitative Services U.S. Department of Education 

I have a daughter named Marianne. She is 14 years old and so pretty. Marianne may giggle constantly, and then sometimes grow very somber. She is a fantastic young lady of whom I am so proud. She plays soccer and basketball; she can cook and clean; and she has sensitivities far beyond her age. Several trophies line the shelf in her room, and she recently won a scholarship for high school.

Yes, Marianne can do all kinds of things, and she is in and out of love every other week. While so much she does is so normal, there are some other things about Marianne and her life that are unusual.

Marianne was three years old when her sister, Jane, was born. The next two years in Marianne's life are a blur in my memory. Yet, I can recall vividly what happened to Jane during that time. You see, Jane was born with a disability. We did not confirm her disability until she was 14 months old. Those first 14 months were filled with apprehension, concern and crying, and the fussing and fretting of a demanding little baby. The next 12 to 14 months, the months after the diagnosis, were filled with more concerns, confusion, distress, dismay, and heartbreak.

I wonder where Marianne was during those two and a half years. What was she thinking during that time and what was happening to her?

If you don't have a child with a disability in your family, you can't imagine the impact this event has upon the entire family. So much of family life -- the emotion, time, and concern -- is focused on the child with the disability. After that, parents are consumed with coping and survival. There is so much to think about: medical treatment, another opinion, insurance, money, weariness, and wondering why it happened to you. There just is never a convenient time to consider the Mariannes of the world.

It was difficult or impossible at the time to see the situations in which the siblings were being slighted. The slights were not intentional and there was no lack of love. When Marianne and her older sister, Patricia, were four and five years old, respectively, I enrolled them in dance class. This was one of the first realizations I had as a parent that they were not getting as much time, energy, and effort as their little sister with a disability. After that, I can recall making a conscious effort to change things. I remember how important it became that their costumes for the dance recitals were all that they should be. I remember sitting the children down and saying, "Jane takes more of Mommy's time and energy. It isn't that I love her more; it is just that she needs more. You see, she needs more car rides for her doctor visits and evaluations, and more time for her programs. So it ends up that she gets more of my time." Do you suppose that Marianne, her sister, and her brothers who were older were able to accept those kinds of ideas? I don't know.

I do know that at some point in those early years things did change. Gradually, all the children became involved in assisting with Jane's programming. It was great fun to see members of the family join in to help. When Jane began to respond to their teachings, the children taught all the harder. I remember when my oldest son, Mark, taught Jane to "give me five." I remember telling teachers that our household had become a household of speech therapists. "Watch my lips" must have been uttered a hundred times a day; everybody was trying to get Jane to continue to develop her speech patterns. All these things were done in a light and joyful way that made them lots of fun. I, however, look back and wonder if it was too much for them? "How was Marianne being affected?"

I think about other things, too. I remain amazed by the enormous difficulty of motivating normal children to do their best when so much time and effort goes into the development of the child with the disability. What a disappointment when the grades of the siblings come home and they are not all A's. You know they could all be A's, and yet, how do you motivate the normal children to work to their full capacity? I didn't know then, and I don't know today. Then there was the overemphasis on the accomplishments of the child with the disability. Were the accomplishments of the normal siblings similarly heralded? I don't think so. Yet, my Marianne and all the rest seemed to be happy children.

What about the resentment when Jane was learning tasks? It never seemed as though she kept up. Jane, as well as the rest of the children, had assigned tasks around the house and yard. Yet, wasn't it easier to get the older kids to do a job than it was to have Jane do it? I think so. What about the time I gave to teaching the older children skills? Was equal time given? I don't think so. I remember the summer we taught Jane to clean her bedroom. It had been Marianne's job to teach Jane the finer points of room cleaning, but Marianne didn't want to do it. Do the normal siblings become resentful? Does this resentment create other troubles? I think so. Will Jane ever catch up and be able to fully meet the family's requirements of its members? I don't think so.

Is having a child with a disability going to adversely affect the development of the children who have no disabilities? Each family needs to consider this possibility and work to avoid inadvertently hurting the ones we love.

Have I personally ever gotten an answer to this question? Indirectly, yes, for despite all the uncertainties, my children have grown and matured into adults of whom I am proud. However, Gene, my oldest son, gave me what was perhaps the most direct answer I am sure I ever got to an unasked question. When he left home for college, he wrote me a letter. In this "lonesome" letter, in which he expressed his longing for family and friends, he spoke of all his brothers and sisters. Of Jane he said, "... and Jane, well Jane is probably the greatest blessing to us in the world."

Did he mean that he was glad that she was born with a disability? Quite the contrary. He was saying that Jane and her needs had brought us together as a family. It was true; Jane had been a focal point around which we all rallied. We worked as individuals and as a family to help her. Jane had become a total family effort.

Over the years, as a family, and as individuals we have had many successes and some setbacks. Yet, we know none of us has to be alone. We know how to pull together as a family, to love, support, and share -- something we learned how to do a long time ago with Jane.

I can only hope that our journey along with Brayden produces the same outcomes as it did for Jane's family. May they have a greater insight on his condition and similar conditions, maturity from successfully coping with their brothers needs and the struggles he faces, pride in the abilities he has while recognition of the small things as well, loyalty toward the people they love, and appreciation for their own good health...may not one thing be taken for granted, health or otherwise.

There are also federal programs being established for the siblings, which was completely unbeknownst to me. Here are some of the opportunities available to siblings:

Like their parents, brothers and sisters appreciate opportunities to meet others who have had similar experiences, discussing their common joys and concerns and learning more about issues and services that affect their families. Understanding this, agencies are more frequently creating programs designed specifically for siblings by providing some of the following opportunities:

To meet other siblings in a relaxed, recreational setting. The chance to meet peers in a casual atmosphere has several benefits. First, it can help reduce a sibling's sense of isolation. Participants quickly learn that there are others who share the special joys and challenges that they experience. Second, the casual atmosphere and recreational activities promote informal sharing and friendships among participants. Third, the recreational setting helps make the experience rewarding to attend. If a brother or sister regards any service aimed at siblings as yet another time demand associated with the child with special needs, he or she may find it hard to be receptive to the information presented. Sibling events should offer activities that are personally satisfying for the participant, so that he or she is likely to attend in the future.

To discuss the joys and concerns common to brothers and sisters of children with special needs.
Siblings need opportunities, such as sibling support groups, to network. Through these discussions, siblings may realize they have many common concerns and experiences. These support systems can help decrease feelings of isolation and provide an opportunity for ongoing support. Serve refreshments and incorportate fun activities along with more serious discussions.

To learn how others handle situations commonly experienced by siblings of children with special needs. Brothers and sisters of children with special health and developmental needs routinely face problems that are not experienced by other children. Defending a brother or sister from name-calling, responding to questions from friends and strangers, and coping with a lack of attention or exceedingly high expectations from parents are only a few of the problems siblings may experience. Special events for siblings can offer a sibling a broad array of solutions from which to choose.

To learn more about the implications of their brothers' and sisters' special needs. Brothers and sisters need information to answer their own questions as well as the questions of friends, classmates and strangers. Siblings want to know how the disability or illness may affect their brother or sister's life, schooling and future.

To give parents and service providers opportunities to learn more about the common concerns of the siblings. Because parents and service providers often are unaware of the range of sibling issues, activities can be conducted to try to help them better understand "life as a sib." For example, a panel of young adult and adult siblings might relate what they appreciated in their parents' treatment of the children in their families and also what they wish their parents had done differently.

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