Running Head: HOW WELL DID I HEAR?

How Well Did I Hear? Reflecting on a Family Interview

Katie Hall
UCID: 10139442
Core 471: Children with Special Needs and Their Families
Patti Desjardine
April 12th 2016
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Introduction
Thu Blackwell is a loving wife, and mother to three children. Her two eldest children are both
girls, which she describes as her typical ones. Her youngest is a seven-year-old boy L who was
diagnosed with autism at 22 months. As Thu describes each of her children, it is discernable her love
for them is immeasurable, and there is next to nothing she would not do to provide the best possible life
for them. Thus instinct and expert knowledge on her children is what led to her continuous push to be
heard and acknowledged for her concerns, and opinions about L by doctors and professionals alike.
While the family has made accommodations in light of Ls diagnosis, and throughout the years, their
positive outlook, and ability to handle stresses thrown their way have left them even stronger than
before. In having this experience to listen to Thus story from her perspective, I have formulated a
vision of some best approaches, as well as things to avoid when implementing family centered
practices in my future work. The following reflection is a demonstrative account of what I heard,
highlighting particular pieces that stood out and interested myself in particular. I will conclude by
pulling threads together to discuss my personal thoughts on what issues the family has experienced as
most prevalent, as well as highlight the more affirmative, positive aspects of the familys experience,
and overall trajectory in raising a child with special needs.
The Early Years Assessment and Initial Professional Involvement
The Blackwells initially lived in the United States; however over the years their lives have
changed in countless ways. Their son L was not assessed until he was 22 months old, however Thu
recounts that over a year prior herself and her husband began to take note of milestones like making
eye contact, and sounds that their son had yet to do, which seemed a out of the ordinary. Initially they
thought L was deaf, so they did a home test, by turning a TV show on extremely low volume in their
bedroom, to which L came running from the opposite site of the house, proving their initial assumption
of hearing loss was not the case. Thu still had an inkling sense that something was a bit off,
especially when watching the show Parenthood, where she could liken a lot of Ls mannerisms to a
young boy who had Aspergers. Her words were thats interesting, which I believe shows her
strength of inquisitive tactics, rather than immediately relaying to worry or fear like many parents
might. Thus awareness that something was off perfectly exemplifies the fact discussed in lecture that
since parents spend the most time with their child, and see them under natural, every day
circumstances, they are often the most reliable observers and knowledge pieces available to
professionals (Drever & Oberklaid, 2011). In 2010, the Blackwells went to a school specific to
children with autism, which she made a point to reiterate were hard to come by in the US. The couple
met with a doctor for an hour and a half, answering a plethora of questions. L was then brought into the
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room for not even 15 minutes of observation, when the doctor blatantly handed them a diagnosis of
autism for their son. In hearing the description coupled with Thus facade when speaking, the
assessment process was negative to say the least. While the doctor took time to get information from
the parents perspective, he only met with L for a minuscule amount of time, making a quick diagnosis,
without the use of a multidisciplinary, in depth assessment. It was not the diagnosis that appeared to
leave a bitter taste, but the way the process was handled and having been left with no information or
resources. They were given as much information on autism as could be found in a dictionary definition,
and left with a leave your check at the door, see you later send off.
Thu states she had had this gut instinct all along that her son had autism, and in a sense felt a
sense of guilt that she had not gone with her gut instincts and gotten L into early intervention or
assessed earlier. While this led to a sense of guilt, she also mentions that since her gut told her L had
autism all along, in a way it was easier after the diagnosis for herself than for her husband. Their
perception of the stressor had differing meanings initially, and thus their responses diverged
(Desjardine, 2016). Thu explains for her, while it was shocking, she responded quite calmly, and was
more worried about ensuring they had information, and resources lined up right away. Contrasting with
her husbands initial response, which he voiced as a concern that the majority if not all the plans he had
for his sons future, felt suddenly derailed or no longer possible. His initial reaction mirrors that of
some parents in a paper on transformation, where they felt the need to release old assumptions that no
longer worked, to actively build up new identities and constructs of the situation for themselves and
their children (Scorgi & Sobsey, 2004). For me this truly highlighted the differing ways of adaptation
family members take to, or employ when stressors come into the picture. Thu and her husbands
situational meaning differed here, and followed the typical responses discussed in class how meaning
making is often very different between genders (Desjardine, 2016).
I can confidently say the families quick rebounding response after the diagnosis falls highly on
the positive, bonadaptation side of the adaptation continuum (McCubbin & McCubbin, 1989). The
couple pulled together to obtain as much information as they could about autism, and the supports
available to their family. Where the doctors had failed to provide them with support, the family adapted
and used their personal strengths of resiliency to counteract and better the situation for themselves. In
fact, within the next month the family went further to adapt to the lack of information readily available
in Utah, and flew out to California to attend a conference on autism, where they attained a breadth of
new knowledge on autism. It was clear to Thus family the lack of resources, as well as the fact their
state did not cover therapies or costs that something needed to change. If the help was not going to
come to them, they were going to go to it.
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Another huge source of support and strength for the family was Thus father in law who called
them upon hearing the news and blatantly told them they needed to move to Canada. He had heard of
the amazing supports for autism in particular that Calgary offered, and thus was a huge saving grace
and internal familial support system for providing the family with this piece of knowledge. Hearing
this, they quickly came to a realization that the only option for them was to uproot their entire familys
life, and move to a whole other country, immediately. So they did.
Beginning the Transformation Adjusting, Accommodating & Building on Strengths
The Blackwells packed up a mere two months following Ls diagnosis, and moved to Calgary.
Since their lack of trust in professionals rightly existed, they turned to family and friends to attain the
majority of their advice, and information on what to do next. Thus, it is safe to assume that extra and
intra familial supports were a huge strength for Thu and her family (Desjardine, 2016). Multiple people
told them they needed to enroll L with Renfrew Educational Services. The process was not easy, and
no matter how many times Thu called, her messages were never returned. That was not enough to make
her give up however, and if no one was going to call her back, she was going to go ask in person. Her
persistence paid off as fate had it a waitlist spot opened up that morning. Thu states that she has been
asked countless times how she has gotten so much support and accommodations for L such as an aide
in classes, as well as funding and supports when others had been told it simply was not there. Thu said,
I dont know, I dont know if its luck or if its the way I ask, I dont know. However I wholly
believe her thinking luck had anything to do with it is a complete underestimation of her advocacy
skills and confident, knowledgeable approach. Thus insight into her relations with professionals, and
how to attain the best care for her son is uncanny.
Thus experience at Renfrew was unbelievable, and the majority of her accumulated knowledge
and resources stemmed from working with those professionals. However there have also been
professionals along the way that were too strictly set in their ways, thinking they know best, which she
had negative interactions with. Thu always preps each professional working with her family quite
thoroughly. She relays to them all the information pertinent to working with her son, accompanied by
an extremely thick binder of material. A lot of her positive experience at Renfrew sounds like it
stemmed from how they relied on her information to better do their jobs, and appreciated the breadth of
knowledge Thu had. She told them which teachers he would get along with, and which personalities he
would not, which I see as a huge benefit that any professional should gladly take into account. I took
this opportunity to ask how various professionals responded to her hands on approaches. She stated she
always hopes professionals would trust she knows her child best, and that she is the true expert in
regards to her son. She has learned over the years the perfect balance in working with professionals,
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and has found if you do not micromanage too much, they are much more willing to help. In listening to
her intuitive outlook on professional relationships, it is obvious over the years she has become so
attuned and aware of what works best, and how to get the best for her son. She describes herself as
having a sixth sense, when it comes to reading professionals, and how to best work with each one to
get her son. When asked if there were any negative experiences with professionals she encountered, she
mentioned one where not even two weeks in she had a sense they were there just for the money, and
thus asked her to move along. Thus ability to speak up and voice her thoughts to professionals seems
to have helped their family immensely over the years, and ensured the families voices as a unit is heard.
On the flip side, Thu mentions her extremely thankful attitude to the specialists at Renfrew for
exposing their family to external therapeutic tools such as the picture exchange communication system
(PECS), as well as video and media communications. Initially, when diagnosed L was completely non-
verbal, however, since bringing PECS into everyday routines at home, L has learned language through
echolalia tactics. Various techniques and therapies professionals have exposed them to, the family
adapts to be of use by them personally at home, which I believe is extremely admirable, and shows
their persistence in helping their son in any way they can.
Present Day Attitudes and Outlooks
I gave Thu a chance to brag a bit as I posed it, to talk about the strengths as a family they
bring to the table. She vocalized their immediate family is close knit, but they have grown even closer
together over time. As L grows, their family has learnt how to adjust, and grow with him in unification
as one. There are two things in particular having L has taught her family. The first was to advocate
effectively, and the second, and possibly biggest area of growth, to have patience. Thu pronounces Ls
autism is a blessing in disguise, and how it has taught them so much, most importantly how to look at
people and situations differently. Looking back, Thu states she was not the least bit patient. However,
through the experience of having a child with special needs, she has learnt to be the most patient person
in the world she believes. For her husband, she remembers him before Ls birth as being quite
judgmental, typically judging a person within a hearts beats notice. However, he now takes the time
to step back and remember he does not know what each individual may be going through at a moments
notice, and thus to have a more open perspective to life. When asked about the family dynamic with her
other children she states not much has changed with them at all, as they have been growing and
learning naturally right alongside L. The experience of having L as a sibling has made them more
caring and more aware nevertheless however. Her oldest she describes as the more nurturing of the
two, advocating awareness for autism, going as far to do her grade one science fair project on autism.
Her middle daughter when asked what autism is simply responds his brain just works differently.
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Since from a young age, her children have been exposed to autism, they have learned such an important
fact of life, that difference is not only a fact of life, but also it is everywhere, and people should be
accepted no matter what. I see this to be such an invaluable teaching moment for her children, and
support them to grow into more accepting, compassionate people. Thu voices her family continues to
take the good and the bad in terms of professionals, and challenges, and with each one, have walked
away even stronger.
Conclusion
In closing this reflective piece, I wanted to ensure each of the themes provided as a guiding
piece were addressed more outright and thoroughly. In doing so, hopefully it will shine through what I
personally heard as the imperatively important pieces Thu touched on, and what I will be taking away
from undergoing the family interview process.
How did the experience of having a child with special needs change this family over time?
Thus story was an appreciatively authentic account of how her familys lives have changed
over time since her sons birth. She was open in how their goal was never to reach or maintain
homeostasis, but instead to continuously roll with the life transformation, to take the challenges and
blessings as they came. While Thu spoke to the various difficulties they faced as a family, she placed
such a greater emphasis on the positive life changes that having a child with special needs has brought
them. The changes span much wider than moving geographical locations to get supports, to include
personal positive changes, and perspectival changes (Desjardine, 2016). The biggest thing that stuck
out was the personal positive change of viewpoint, and perspective each of them now holds on the
world, and individuals around them (Scorgi & Sobsey, 2004). Thu highlights the various on-going
stressors their family encounters in having a child with a disability in their life, but nevertheless she
always came back to how it has truly been a transformative process. This really stuck with me how
many families rarely get the chance to share these immensely positive and life changing aspects of
raising a child with special needs. Going forward, I believe the biggest thing I will implement in
working with families is encouraging them to realize, and speak to the positive aspects, as well as
difficult aspects in raising a child, without judgment. I believe this process allows families to realize, as
Thu seemed to, that while their lives may be changed, often it could be for the better, or could have left
them more resilient and stronger than before.
What adjustments did the family make to accommodate for the changing situation?
Thu was open in how her family has had to accommodate lots since L was born, such as when
they uprooted their home and family and moved immediately to Calgary. However, never once did she
speak of the adjustments they made with a negative connotation or tone. In her eyes it truly was an all
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in approach, and no adjustment or accommodation for her son was ever asking too much. In addition,
Thu told us how she made the decision to discontinue working so she would be readily available at any
hour of the day for L, if the school needed her assistance, or for therapies, or appointments. When
asked how she felt about putting her career on the backburner for now she honestly spoke that yes, she
missed that aspect of her life, but no sacrifice was ever too large for her family. Thu and her family
have admirably adjusted and accommodated in a plethora of ways, however, in hearing Thus story, it
seems that they have in fact grown stronger and more capable of adapting through overcoming various
adversities throughout the years.
What roles did professionals play and how did they change over time?
Professionals have had a steady presence in the familys lives since Ls diagnosis but for the
most part they have been self-sufficient in acquiring information and resources themselves, or through
social supports. Besides the initial diagnosis process, the only other major professional involvement
came from the multidisciplinary team at Renfrew. Those professionals played a pretty substantial role,
by offering a plethora of supports in positive, beneficial manners. Thu still speaks of the professionals
at Renfrew in such high regard, showing the role they played was sizeable. What I took away was that
professional involvement has not been a huge factor in their lives, and has lessened over time, as the
family has grown internally to become almost completely self-reliant. Thu, and her husband seem to be
autonomous in attaining the information needed from friends, and other families going through similar
circumstances. They have never been extremely trusting of professionals, however by digging into their
own family strengths, they do not appear to miss the presence of professionals in their lives. This goes
to show that their familys internal coping adjustments supported them more so than any professional
involvement likely could have.
What attitudes towards professional involvement has the family formed from their experiences?
The attitudes Thu expressed regarding professional involvement was one of a fluctuating
nature, depending on the professional, or the site. The initial involvement with professionals for Ls
diagnosis was negative to say the least, and thus Thu carried a weary attitude forward with future
professionals. Thu stated even to this day they try to stay away from doctors when it comes to their son.
However, she gave a glowing review of professionals at Renfrew, which countered her prior negative
experience leaving her a little more open to bringing specialists into their lives. It is safe to say their
initial tumultuous experience with professionals equitably left them with a lasting unenthusiastic
attitude. One thing in particular I noted was how inquisitive, and aware Thu has become over the years
from interacting with professionals, and from seeing the good and the bad. Since the familys attitude
was weariness in the beginning, I think Thu tends to walk into relationships with professionals with a
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hesitancy and distancing attitude, as we discussed in class around the dance of partnership in
collaboration between parents and professionals (Fialka, 2001). This served as a large reminder how
the interactions families have with professionals stick, and that in every relationship I enter, I need to
remain cognizant I am being welcomed into an extremely intimate, important part of a familys life.
Further, that acting with a true family centered, considerate course of action is and always will be best.
What strengths (individually and as a whole) have helped/supported the family?
If I had to pick out one of the themes in particular as a common thread throughout the interview
it would be the strengths that Thus family encompasses to have helped them throughout the years. The
close knit, accepting, and protective nature the family lives by is a huge strength. L is like any other
member of the family to them, and I think their ability to continue living their daily lives the best they
can, despite ever changing circumstances is admirable to say the least. The second strength I saw was
in how strong, well informed, and confident Thu presents herself as not only to us, but also in her
interactions with professionals through her specific lens. Thus pure confidence in the fact that she
knows her child best, coupled with her strong will is what I see as without a doubt the biggest strength
to the family. Her inkling on how to act in any given situation means she is not too pushy, yet never a
pushover, maintaining just the right balance to get the best for her family from professionals.
Conclusion
This interview gave me immeasurable insight into the Blackwells experience in having a
family member with special needs, along with the changes the family has undergone. I can honestly say
while issues such as the assessment process, finding reliable information, and external supports have
been prevalent at one point or another, the familys strengths have allowed them to adapt and push past
the issues and topics families often face that we covered in the course. The biggest thing that resonated
with me was how their familys strengths led to them positively cope and adjust, proving to be far more
beneficial than what any external source could have done for them. It is truly the families heightened
ability to face adversity that created the positive perspectives I heard come through when Thu spoke. I
now truly appreciate the fundamental importance in professionals being informed by a familys voice
and priorities. If professionals acted under the expert knowledge and primacies of each familial unit, it
would leave them far better suited to provide the best care than acting in uninformed, or assumptive
ways. The knowledge and varied outlook I have attained is invaluable and I will carry it forward in all
my future endeavors, but especially in working with children and of course, their families.
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