While most of our parental lives are filled with taking the ‘dis’ out of disability. We struggle hard to help our child overcome and succeed beyond all expectations. Our goal is they have a shot at their dreams!
There are times I have found myself in the unwanted position of having to highlight and verify my child’s illness, and disability. My children have what is mostly an invisible illness. To look at them for the one hour on Sunday morning they are happy, active, and involved. My hubby and I work hard to make that happen.
I have had to defend our right to have a handicap parking tag. I have had to get forceful with ER doctors to make them call my childrens’ specialists. I have had to advocate that they are ill, in order to get them appropriate, prompt care.
What a hard position for us parents to sit in. Did you know that you are not alone! This is Invisible Illness Awareness week. Most illnesses are not apparent when you look at your child. Most children (and adults) that have some form of disability only show their problem outwardly when they are acutely ill or in the position unique to their condition (such as reading or writing).
Sadly this can lead to the “You don’t look ill.” or “Autism is over diagnosed. I’ll bet you kid doesn’t REALLY have it.” and so it goes…
I have found that people in general don’t want to hear about disabilities or chronic illnesses. It strikes to the core of our GO GO GO culture. If you are ill or disabled in some way than you can’t do everything, there are limits. Well people there are limits on you too. The sooner you realize that the sooner to get off the race to a stroke or heart attack.
How can we fight this?
A heaping helping of compassion for those that are ill (whether we see it or not!)
Education! Be clear with those around you what your disease is. White washing it so they don’t feel uncomfortable won’t help if you land in the hospital and need prayer and support.
Protect your child from the delibrately ignorant. I am sorry but there are some that chose not to believe. When I have dealt with this I tried education, one of the dr reports that clearly stated what was wrong, and conversation so they would have time to ask all their questions. Still it was not enough. My hubby and I made the decision to shield our children from that person until things changed.
You may not always have strong outside support for your family. It can be very hard for other to see your problems, especially in the beginning.
Matthew 7:25
The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock.
You can weather this storm and become stronger for it! Your family can grow and thrive, even in tough conditions.
I find this post extremely interesting. Many times I have “wished” my son had a cast or wheelchair or cane to show that there is something going on in his brain.