[blindkid] A question

[Rene Harrell]

Hi all---

Richard and Rosina, you both raise good points and questions. I do want to
say that I don't believe this is specifically related to blindness, so much
as it is related to the fact that the medical community in general doesn't
know how to help beyond the medical piece of our children's issues.

For example, in addition to my daughter who is blind (with other
disabilities), I have a three year old daughter who was born multiple
congenital heart defects of moderate-to-complex severity. I also have a son
who is medically fragile with moderate ataxic cerebral palsy, chronic lung
disease and asthma and aspiration issues that require g-tube feedings.

Now--- my daughter with all the heart issues has never gone more than three
months without being in her cardiologist office, in her entire life. She's
now had two open heart surgeries, is on several daily medications, and is
awaiting surgery number three. After her third surgery, we're hoping to
eventually get to the point where she can gradually decrease down to once a
year visits. But she is there so often that everyone from the business
office staff to the echo staff to the receptionist know her very well. If I
don't have all the kids with me,  I get asked about my other children
name....how is Elijah doing? How is Clare? How is homeschooling going?
Everyone well? When I was pregnant with my now eight month old Nathan, the
office even checked in with me after his due date to see if he was born and
how he was doing. It is a small, caring office. Her cardiologist truly cares
about her well-being, and I believe he does a very good job in taking care
of her medical needs.

But, he never once mentioned to me that we had a local "Cardiac Kids"
support group. He never once alerted me to the fact that this group provided
hospital visitation and monthly activities for the children. I found out
about the group incidentally when Nora went in for her first surgery and it
was mentioned in the surgical booklet. He never once mentioned that Nora's
condition would qualify her for Make-A-Wish; I had to find that out from the
support group. When *I* brought it up to him, he said yes and signed the
paperwork. When I mentioned the Cardiac Kids group, he seemed pleased that
we had found a group. But I think of the focus of what he is trying to do
medically creates an easy tunnel for many/most doctors to believe that
someone *else* is taking care of helping parents figure out the rest of it.

So, I have found it relatively easy to get doctors on board with making
information accessible if we step up to the plate and essentially volunteer
to do it. Our state POBC created information packets/resource list that we
give to every single pediatric ophthalmologist office in the state. We
divided up the list and try to visit as many as possible in person. The ones
that are 6+ hours away, we contacted by phone for permission to mail them.
We request that they are left out in the waiting room. Ideally, I'd like to
see us be able to get in contact with the NICUs and NICU social workers as
well, (since that is the place with the highest chance of catching the
parents of those children with ROP), and hospital pediatric social workers
who might deal with children with other eye conditions that are in for
surgery. And I have found the response to be positive. While I try to not
overburden *them* with a ton of information, I try to give a brief synopsis
of what we do so that if it occurs to them during a patient consultation,
they can mention our group and mention we have information in the lobby.
Having the information in the lobby is the key though--- it lets parents see
it for themselves, take what they need and know there is a group of parents
they can contact if they want additional information on what they can do
*outside* the medical realm, without having to rely on the doctors to say
anything specific at all.

My heart support group has does toy and book collections and donates them to
the pediatric cardiology offices with stickers on them saying "Donated by
Cardiac Kids/Mended Little Hearts" and gives the website address, phone
number, and email address. There are far fewer practices in our state, but
our cardiology office happily accepted the toys, as well as the practice at
the Children's hospital up in Denver. And every parent who reads their child
a book or watches them play with a toy is informed about our parent support
group. We also do  the same thing for the toys/books that go  for kids in
the CICU and Cardiac step-down unit, since so many cardiac kids are going to
find themselves in the hospital at some point.

So, I don't believe there is malice behind the lack of information provided.
I think doctors who are busy seeing a gazillion patients and pre-occupied by
the myriad medical issues to be managed simply don't consider it to be
within their purview to worry about the realm of PARENTING those children,
but managing their medical needs.  And I actually think that's
appropriate--- they're not parents of these kids, they're doctors for them.
However, if people with that information are willing and able to step in and
provide it to their offices without adding to their workloads, it is
positively received. In all my work, I have never been told "no" or turned
away.





On Sat, Jul 24, 2010 at 9:36 AM, Richard Holloway <rholloway at gopbc.org>wrote:

> Rosina,
>
> Your post makes me reflect on my daughter's first months and years and our
> discovery of her blindness-- Our daughter was born with one with one eye so
> small it was virtually missing and there were at least some concerns with
> her other eye on the day she was delivered. We were at a large Metro Atlanta
> hospital and then transfered to a large children's hospital here. She had
> numerous operations the first few months of her life by multiple surgeons,
> all renowned to be the best in their fields.
>
> I have always been amazed that with all the contact we had with top
> hospitals, doctors, surgeons and other medical professionals, virtually no
> effort was made to provide us with or direct us toward any parental support
> and only when it was determined (at around four months of age) that she had
> basically no hope of recovering any vision at all were any discussions of
> referrals for alternative techniques for the vision impaired offered, and
> even those were minimal, at best.
>
> If this is how the apparent "best in their fields" in a large US city
> handle assisting parents of blind children, I can't imagine it is much
> better anywhere else. In fact I have never heard anyone tell me how their
> hospital or doctor (etc.) was all about getting them support through the NFB
> or NOPBC or any other organization. The medical focus is on repairing the
> medical conditions and restoring vision. That's a fine thing if there is
> vision to save or restore, but no matter how well that works out, unless
> vision can be restored to typical levels, the patients are going to need
> alternative solutions for their entire life and they and their parents are
> going to do much, MUCH better with support. (I have always wondered if any
> other groups of professionals working with kids who have unique needs
> similar to ours are better at  suggesting parents get help and where to find
> it.)
>
> In our case, even if our daughter had 20-20 vision in her "good eye", she
> was never going to see on one side. I'd think that alone would have doctors
> suggesting where to get some support. But she didn't have good vision in
> either eye-- in fact she had cataracts in the other eye. There was much more
> wrong (with her vision) as we would later learn, but they knew about the
> cataracts on day one-- so I can make no excuses for their lack of support.
> They suggested these were only "peripheral" cataracts and would not impact
> her field of vision. Well, by her two month well visit, she had no
> red-reflex at all. Clearly, she was apparently functionally blind by two
> months of age, if not before.
>
> We were actually lucky in that my wife works for the CDC so she has some
> knowledge of where to go and look for information to start with, and we're
> both fairly handy with computers and able to find things on-line quite well,
> but even at that, we had a struggle finding good information. It is no
> wonder more people are unaware of services which might be available for
> their children before Kindergarten. If nobody gives you the information, you
> do whatever you learn is possible on your own and that's it. I wish we could
> find a away to get the information in more places for parents to find and to
> encourage doctors and other medical professionals to be more willing to
> share information about support and other resources which could help our
> kids.
>
> One other point-- our daughter is totally blind and we (and the
> professionals) knew this by the time she was about four months old (or knew
> at least that any remaining light perception would not last long once her
> retina detached and could not be repaired after several attempts). Surely
> knowing that she had no vision at all, any professional who knew anything
> about support for the blind would have offered it- -after all, there was no
> "low-vision" approach to be argued over in our case. I would suspect kids
> with some residual vision are even less likely to have suggestions for
> support offered by professionals (in cases where the occasional suggestion
> might be made).
>
> Our kids have to work awfully hard to keep up with their sighted peers. The
> last thing they need to do be to be playing "catch-up" for several years
> right at the start of school, but it happens all the time. What a shame--
>
> I think all of this sort of begs the question-- How do we make more parents
> of blind children aware of NOPBC philosophies and resources, and make them
> aware as early as possible?...
>
> Richard
>
>
>
>
> On Jul 24, 2010, at 8:25 AM, Rosina Solano wrote:
>
>
>> Gosh, I just wish I would have known that there were services out there
>> and my child could get them.  My son didn't get any services until
>> Kindergarten because I didn't know that he could be getting them.  If he had
>> started EVERYTHING (braille, cane, etc.) earlier it would not have made him
>> start out behind the other kids.  He is okay now, but it was a struggle at
>> the beginning.
>>
>> Rosina
>>
>>
>>
>>
>>
>>
>>
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