The experience of being a parent of a child with a hidden disability

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!