[blindkid] Address which addresses the dangers of doing it for them...

[Carrie Gilmer]

I gave this in Virginia in 2005.maybe it will help,

 

 

 

Carrie Gilmer, President

National Organization of Parents of Blind Children

A Division of the National Federation of the Blind

NFB National Center: 410-659-9314

Home Phone: 763-784-8590

carrie.gilmer at gmail.com

www.nfb.org/nopbc

 

The title of my speech today is 'The Role of Parents in the Education of
Blind Children.'  I'll start by stating the obvious-the whole purpose of
parenting is to raise and adult. Even the best schooling can only cover a
part of fully educating a child. Most of what they need to know, live, and
to MAKE USE of the academics they learn, will come from you. Everything we
do as parents needs to be an objective towards the goal-the end result-a
grown-up. By grown-up I mean, generally, someone who according to their
mental ability, cares for themselves in a healthy manner, contributes to the
community around them, works, is in charge of their own body and mobility,
analyzes, thinks and speaks for themselves, makes independent decisions, and
then takes responsibility for those decisions. Do you know any of those?
Sometimes, it seems we have a short supply.

 

It should go without saying-but the problem is many times we parents don't
parent towards the future, we only parent for today. The same problem
happens with teachers-they need to be teaching toward the future but-and
this is especially true if a student is slower than average or has a
disability-they only teach what they have to in order to get by today.

 

My husband is a high school band director. When his seniors graduate, he
says that their parents fully expect that their children can really play
music. Some parents expect this, even when there has been no real effort or
involvement over the years.   My husband's bands are often rated 'Superior'.
There is no way that would happen if he and his colleagues only taught for
today. 

 

Every student that enters the district where my husband teaches comes to
kindergarten with some pre-existing knowledge of music. That helps a lot.
Can you imagine if the kids had no concept of music at all when they came to
school?  In kindergarten, the students begin music instruction to learn the
basic parts of music. They mostly play, sing simple songs, and clap out
rhythms. Maybe they get to hit some sticks together or ring some bells. All
the while the teacher is naming things, and reinforcing-asking and rewarding
what they already know. Then the teacher adds a little something new, the
next level, and they try that out while repeating what they already know,
and so on and so forth.on it goes and builds throughout grade school. 

 

At the end of fifth grade, the students have learned enough to choose how
they will play music, with voice or instrument. They can choose choir, band,
or orchestra. If they choose band or orchestra, they have to make another
choice-which instrument they will play. Then they begin to play music! As an
untrained parent, I thought these things when my kids started band: They
sound horrible! I don't think they have any talent! I asked them to close
the door when they were practicing. Even though you can't imagine they will
ever play real music when they sound so horrible in the beginning, you know
it has absolutely zero chance of happening if they never practice. So, you
make them practice, and hope it gets better.

 

The students who don't practice don't get very far. They get frustrated and
quit. They never learn then to play music. A teacher can teach music and
give support but he can't make the student practice-there has to be support
and commitment from home.  The students who stick it out and progress
through all the levels play evermore complex pieces while mastering through
repetition the rudiments and mechanics. Soon they practice performing, first
in large groups, then small. One day they are ready to try their first solo.
Finally, the teacher instructs them to feel the music-to play with
expression. When this occurs you have reached the ultimate prize-

 

Some one who can not only play music but can make their own.  That is what
we want isn't it? We want our kids to be able to play and make their own
music.  It doesn't happen when either the student or the teacher just gets
by for the day.

 

Many times we get stuck parenting, or teaching, only for today because we
are so, so busy. We just don't have the time. So, we take shortcuts. We do
it for them.  We pass them along in a rush, not allowing the practice or
exploration they need and just look the other way. The terrible result of
this occurring with any frequency is that shortcuts leave children
shortchanged in important building-block skills.  When we do it for them we
cheat them by creating an illusion of competence which is sure to come
crashing down on the day they do need to do it themselves. When they play
that solo-everyone can tell if they have learned it or not. False applause
for a poor performance doesn't mean much.

 

What message do we send when we do it for them or rush them along? You are
not worth it to learn this? "You are slow; you take too long." "You are
incompetent; you can't figure things out." When we do it for them, cover up
their gaps in skills, or rush them past incomplete steps, they don't own
anything real and complete. Whatever the skill is, they don't know the
trials and errors of getting there, so they have no problem solving
experience with it.  What is the motivation to continue if when the going
gets tough, mom, teacher, or dad steps in?  Because they didn't get to
discover it for themselves, or get a chance to apply it, even if they can
mimic whatever the skill is, they have no basis for transferring the skill.
And, they know when we do it for them. They know when we cover-up and say,
"You did it", or "You are as good as anybody else" and they also know the
secret message is that they shouldn't even try to really do it themselves.  

 

Sometimes we parent only for today because it happens that we love our
children so much as children that we don't ever want them to grow up. We
even do all that we can to prevent it. Sometimes it is the child who is
scared and doesn't want to grow-up. They want the parent to do it all for
them; and they do all they can to prevent independence. In that case, what
you can end up with is a 25 year old monster child in the closet that you
can't get rid of.

 

 

 

 

 

 Sometimes it happens that we just love the innocence of our children; we
don't want them going about in the cruel, dangerous world so our solution is
to keep them from it. Sometimes because of the public reaction to our
child's disability we use the same solution; hide them, protect them, keep
them close and only in highly controlled environments. More than once I have
had a parent call me-they were getting old and now needed care for
themselves-the parent was ready to go to a nursing home and they were
calling to ask, "What do I do with my 50 year old child?"  How could I help
such a parent; how could I help such a child? Can you imagine being stuck
playing Mary Had a Little Lamb for 45 years.what could the possible
condition of this 50 year old child be? And to think it was all done with
the deepest of love and sacrifice on the part of the mother, quite possibly
she had done the very best she knew.  Sometimes, because of the disability
and a complete lack of information or support, we can't imagine that they
will ever make it in adulthood, so we don't even try.

 

In my experience, children who are isolated, over-protected, and who have no
practice or experience in doing it themselves and dealing with the
consequences.these are the most crippled children of all. They are not
crippled by a physical or mental disability-they are crippled by
fearfulness, inappropriate dependency, and an absolute lack of
self-knowledge or self-confidence. All of us have some of the "not my
child"-"that bad thing won't happen to my child" syndrome, I am speaking of
beyond reasonable protections for lasting damage. I think to some degree it
is instinctive to parenting. But I'm telling you the truth, some of the best
results for my children-any of them-happened when I fought that instinct
off. We have to let go and let them, because the act of hanging on too tight
and too long can in itself cause permanent damage.   

 

Sometimes the problems we have in coping with the disability are so great
that we either literally or figuratively crawl into bed with the covers over
our head-hoping it will all go away or work it self out. Sometimes we are
overwhelmed with putting out daily fires, the problem of the moment, we get
stuck there-and we can zero in like a torpedo-exhausted, frustrated, scared
to death that this has to be fixed or my child will never make it-the
situation often explodes in our faces and then there we are-back in bed with
the cover over our head again.

 

 

 I think this primarily happens because we don't really understand the
disability or what we can do that will really make a difference. We are
scared, and we love our child.  We are powerless, and we can't envision a
normal future, as much as we would like it.  In the beginning, my husband
and I were advised not to make an issue of blindness, and we were plenty
scared.  Well, the less we dealt with it the bigger issue it became.

 

The things I've been saying so far could apply to any parent.  They happen
with the parenting or teaching of children with no disabilities or of every
kind of disability.  This is because basic human behaviors are the same;
around the world, cross-culturally, and across the lines of different
disabilities.  What I'm saying is that you are normal parents, who have
normal children and so you have normal human tendencies. Many of the
problems you have are really normal problems; which can be solved by normal
solutions.  In other words, in many ways parent your disabled child with the
same common sense parenting that you parent your other children with, if you
have them. Parent them in many ways as if your child did not have a
disability, if you don't.

 

Blind children need love, discipline, and someone to listen to and believe
in them just like any other child. They need to discover and do it
themselves, like any one does. They need to pick up their own toys, take out
the trash, and generally learn responsibility like any child does. They need
to be in charge of their own body and movement like all people do.

 

All children are human beings and as such their basic make-up is the same.
We all have a learning realm, an emotional realm, a spiritual realm, and a
physical realm that is human. We all need to; bang on it, chew on it, have
our curiosity stimulated, be safe in discovering it, manipulate it, try it,
fall down, cry, laugh, scream, yell, pet it, read it, analyze it, imagine
it, think about it, tell someone, decide if it is right or wrong or neutral,
be listened to, own it, love, be loved, get up, and try it again. 

 

 All that disabilities do is present access barriers, or challenges to
access, to what we consider the average and normal ranges of emotion,
learning, and/or physical mobility for people. You have normal children with
an access dilemma.  Our kids want to get in, they need to get in, they
belong getting in, they have a right to get in.they just need an alternate
way than the usual.

 

 What we need to do is to provide alternate access that provides the best
access so that their whole person-meaning emotion, intellect, spirit, and
physical mobility are all independently controlled and utilized are far as
possible.

 

We have about 20 years or so to grow up; it is a long time that goes by very
fast. We take much longer to grow up than any other living thing on the
planet-it because we are, by far, the most complex thing on the planet! We
need those twenty years! In the first five, we basically know everything we
need to know to get along in life. Then we need about fifteen more years for
depth, practice, refinement, and expansion of our basic knowledge. There is
a lot to do, especially if there are access challenges. But make no mistake,
the growing up is inevitable-and the consequences of not preparing for it
are disastrous both for the parents and the child.

 

Some of you may be near the end of the twenty years-and are getting very
anxious. Some of you may be only beginning and have nearly twenty years to
go.  I could easily say; I wish I knew ten years ago what I know today, it
would have saved my self and my family a lot of grief. Where ever you are in
the raising of your child-DO NOT-beat yourself up about yesterday, or waste
time and energy feeling guilty or wishing you knew more sooner.  We all have
done the best with what we knew, that is all anyone can do. Yesterday is
over, but tomorrow is on its way.  You cannot redo yesterday but you always
have a great deal that you can do about tomorrow.

 

One thing that I hope you will begin new today is to have new dreams for
your child.  Parents of children with disabilities sometimes quit dreaming
altogether for their child. In some extreme cases, such as with a known
shortened life-span or very significant developmental delays, part of that
may be real acceptance.  But, if your child is alive today-then get a dream
for today.  If your child will always comprehend on the level of a very
young child, then give him the dreams of a young child. Too often the dreams
are washed away by immobilizing grief and a lack of understanding what the
disability prevents-and what it does not. When we quit dreaming for our
children, we quit preparing them. When we do that, we quit expecting things
from them.  And when we do that, we quit listening to them. When we do that,
their own capacity to dream dies.  That, is a terrible thing.

 

 

I am aware that some of the parents here today have children who are blind,
but who also have at least one other disability. Our primary focus here
today is on blindness, and that is what the remainder of my time will focus
on too.  But I want to say something just to you for a minute. Many times
blindness in combination with other disabilities seems like the least
significant challenge, and they may well be true.  But, because of
misunderstandings about blindness, expectations in general are lowered.
Here there is a real risk that too often things are done for the child that
he/she may learn to do independently with a non-visual technique. But,
nobody thinks of it because they don't realize all the normal things blind
people regularly do.

  

When you have a multi-disabled child you must know each disability
accurately. Go to people who have the same disability or who have raised
people with the same disability. You need to know the alternatives to access
for each disability. We have good resources in the National Organization of
Blind Children and the NFB has blind members who are multi-disabled-some of
them are professional people as well. Get contact info from us before you
leave today. It is easy to get caught up dealing with the disability that
presents the most momentary demanding challenge, or the most socially
inappropriate symptoms or urgent health needs. Sometimes it is right to
focus temporarily on one issue, but remain aware that it should be
temporary. Focusing on one disability to the exclusion of another will cause
a crucial access area to be denied and access problems may also be
misinterpreted. That can compound the challenges with all presenting
disabilities that the child may have.  A blind child who isn't given
non-visual learning opportunities will definitely become bored and we know
how behavior can deteriorate when human beings are bored.  If blindness
isn't understood then the behavior stemming from boredom, due to a lack of
learning opportunities, could be misinterpreted. Then the child isn't
helped.

 

Not only should the parent know each disability, but every classroom teacher
should have a general idea of what each is, and what it isn't. Then there
should be a specialized teacher familiar with each disability to work with
the child.  And everyone should be talking, so one hand knows what the other
is doing.

 

 

 

 

 

 

For those of us who have children in special education.well sometimes it
seems we have to be checking up on follow-through everyday.  Those three
capital letters, IEP, which were supposed to make a wonderful individual
plan for each child to ensure they had complete access to learning towards
their own potentials, has turned into a nightmare for many parents, 

 

 

To be quite honest, I don't really feel like talking about IEP's today
because we have been working on Jordan's most recent one since last
February.  We turned it down as inappropriate three times, and had some
unpleasant letter exchanges over the summer, We went to mediation a month
ago, and have our next scheduled IEP meeting in two weeks, The last IEP that
came in the mail sat on our dining room table a week before I even opened
it. I just couldn't do it. I knew I was going to be sick, and mad, and it
was going to still be wrong, and so I just kept walking around it wishing it
would go away. I am battle fatigued, but we haven't given up I want you to
know that.  I think a hearing is a real last resort, I feel like I would
rather have all my teeth pulled out than go through one.but sometimes it has
to be done. We are lucky in that we live near an NFB adjustment to blindness
training center and I also work there. We have been able to get our son
Jordan the training he needs there.  Otherwise, I'm afraid we would be
talking about a hearing.

 

Part of our job as parents is to speak and sometimes fight for our children
while we teach them to speak and fight for themselves. By fight, I don't
mean swearing and pounding your fist on the table. I mean fight them with
knowledge, with what is right, with reason, and the law. You have to be even
more professional acting than they are; sometimes their behavior is so poor
that isn't hard to do. What I would advise, is that you look for goals that
get you where you really want to go in the future. Don't get stuck in small
steps. That is what the objectives and activities are for.

 

 Dr. Schroeder just advised me on this. If you don't know who he is, I
didn't once either. He is now the President of the NFB of Virginia. He is an
absolute genius when it comes to education..I mean he has a genius
educational mind. And his resume is probably ten or more pages long, I'm
sure.  Have a goal that says Johnny or Sally will achieve and perform in all
academic areas according to their intellectual capabilities.

 

 

 So, if Johnny can intellectually comprehend third grade material then he
should be reading as the other third graders are.  Twenty words a minute
under a CCTV or in large print isn't the same efficiency as other third
graders.they are probably reading 90-100 words per minute.  Johnny should be
reading Braille at that speed too. If he isn't, and it isn't Johnny (because
we have assessed his intellect), and it isn't Braille (because we know there
is no speed problem that is automatic to Braille reading) then the school
better figure out what the problem is and fix it. 

 

 Remember, you want the end result of a grown up, you want them to play
music, they have to give them every step to get there, building, and
building, but always towards actually playing music.  Dr, Schroeder also
told me to do the right thing for Jordan, fight for him first, he only has
one opportunity for an education and we as his parents are his primary
advocates. We are the experts on our son. You are the experts on your child.
One more thing, if it isn't happening at school, and it looks like services
will be delayed; don't wait. You teach your child to read, you work with her
on Braille, math, cane travel,  whatever it is.if you can possibly do
anything about it.don't wait. Your child's unrecoverable opportunities are
too important to wait. Call us. We can help you gain knowledge of workable
non-visual techniques and help you to know how to fill in those visual gaps.

 

(The rest of my time was spent on being an informed consumer of services,
training, and products for the blind as well as filling in the visual gaps.
If you would like the entire address call me and I can send it to you,
otherwise 'part-two' will be in the next issue.)