Being a parent
isn’t easy. Children do not come with
instruction manuals or diagrams of how their brains are designed. Therefore, much
of what we do as parents is trial and error. When your child has a hidden
disability it is even more challenging.
Our parent instincts tell us that something is wrong, yet these concerns
are often minimized by teachers. This
makes us question our own intuitions since the teachers should know more; it is
their area of expertise, is it not? Eventually,
many parents will seek outside help in trying to figure out what is wrong with
their child. As a parent it may take us years or just months to finally get
some validation that our instincts were correct and our child has a disability
that IS impeding his/her learning. By that
time the child is even further behind but it is such a relief to finally have
an official diagnosis.
Armed with the
diagnosis and a renewed sense that our parenting skills are back on track we go
to the school assuming the staff will embrace this diagnosis as we have. Unfortunately, this may not be the case. The staff at the school is not relieved to
have this official diagnosis because it only validates that they have dropped
the ball, they were wrong, and they have failed to teach this child
appropriately. So parents must
experience another blow to their parenting self-concept, when the school become
resistant or even hostile because parents begin educating themselves and
advocating for their child. Sometimes it seems that the school district has
an unwritten policy to frustrate parents so much that they eventually give up
and go away (many parents actually get physically sick during this process).
To make things
even more challenging for parents, we experience many feelings of guilt. We feel guilty that: we didn’t follow our
guts earlier, we didn’t insist the school do something sooner, we didn’t get
our child privately evaluated as soon as we suspected something was wrong, we believed
the teachers that Response to Intervention must happen before the child is evaluated
at the school, and we believed things would improve over time. All of this guilt can be overwhelming especially
when we continue to watch our children failing to learn and losing their
self-esteem along the way. No parent
wants to watch their child fail and our children fail on a daily basis!
Because the disability
is hidden teachers, coaches, and even peers often mislabel our kids as lazy,
bad, problem child, stupid, retarded, or oppositional. These are not accurate labels and are
crushing to our child’s self-esteem (as well as ours as parents). Our kids are often not the ones picked by
teachers and coaches as “superstars.”
Our kids are the ones working the hardest but gets the least amount of recognition
so it is no wonder that many of them have a negative view of school or just end
up giving up all together. It is not
easy for our children to watch other children learn more easily, achieve
academic success with little effort, and be recognized athletically or socially
as a “great kid/player/student.” Sadly,
we live in a society that values “Superstars.”
Our children actually are “SUPERSTARS” because they work so much harder
than their peers who are getting all the play time, recognition, and
awards. As a parent we can see the
hidden disability and know that our children are better than their non-disabled
peers we just wish the rest of the world could see this greatness!
So based on my
own personal experience of having three children with hidden disabilities here
is my message to other parents and to teachers/coaches:
PARENTS:
It is so easy
to become overwhelmed by the challenges your child experiences and the unrealistic
perception of success that you fail to recognize your own child’s growth and
learning. When children grow and learn
they are making progress. The goal is
not to solve all the problems but to progress toward being a better
person. Progress means to move forward
toward improvement. So, focus on going
in the right direction, raising children that are empathetic caring human
beings. Know that you are doing a good
job getting your child’s needs met because you are advocating for them. You are being their voice when they have
none. Effective parenting requires you focus on any progress they make no
matter how small. Refuse to be
disappointed if your child does not receive the honors and accolades like his/her
peers. Applaud the progress your child
is making so he/she know that you see how much effort is going into the
learning (sports, social, or academic).
TEACHERS/COACHES:
We are very
aware that our child is different so we do not need for you to tell us how our
child does not fit in with his/her peers.
This difference is because of a hidden disability and not because our
child is lazy, stupid, or whatever judgment you are having about our children. Our child wants to be successful and is
trying much more than his/her peers so please respect that and see the progress
that is being made, no matter how small.
Please speak to our children in a positive tone and with words of praise
and encouragement. Our children may not
be able to read social cues well yet they are very aware when they are being
treated poorly. Finally, please print
out the picture quote below and post it where you can see it on a daily
basis!
