Have you ever felt so ashamed of a disability that you’ve bottled it up inside, afraid that telling the world would lead to being ostracized? You are not alone! The good news is it doesn’t have to be that way. I am going to share with you ways that you can release that shame and help others in the process.
First, let me explain a small part of my experience with this subject. My children have some of the markers of Asperger’s syndrome, which is a form of autism. Unique as a fingerprint, their symptoms present differently in each child, but they each have similarities. For instance, they both share an autism marker called Sensory Integration Dysfunction or SID, but each child is affected in different ways. Our middle son cannot process information at all unless he is in a quiet room, whereas our youngest son will shut down entirely and fall asleep if he is in a room with a lot of background noise or chaos. How their brain processes this information is very different -- one becoming agitated and over stimulated while the other shuts off his brain like a light switch. While one child has no problem wearing denim clothing, he has a problem wearing socks that are too tight. On the other hand, his brother cannot stand the feeling or texture of denim against his skin but has to have socks that are extremely tight. These are just some of the similarities and differences of the same disorder. The shared result for both of them was if they did not have things “just right,” they would fall completely apart and collapse into a tantrum. Now imagine putting both of them in the same room together, mixed with a brain-injured parent suffering from PTSD, and you can imagine how incompatible and stressful our life could be!
When I first took my concerns and observations to health care professionals, I was not taken very seriously. Well-meaning friends and family would just say that our children “needed more discipline.” School teachers would call each week in absolute frustration to tell me what behaviors they would see in the classroom, even suggesting they should be “properly medicated” for their behavior. My husband and I felt like the world considered us bad parents, even hearing those words first-hand by our own family or friends. The criticism we received was profound, but the problem wasn’t us: it was the world’s perception of the disability itself, or the denial that a disability could even exist. Wanting to find solutions on our own, we started homeschooling the children and did not give up if a doctor just passed their difficulties off as a phase.
Years later, and through a variety of competent health care professionals, we now know that we were right on target with our concerns and that our gut instincts didn’t let us down. The children now have proper IEPs (Individualized Educational Program) through the public school system, and their teachers are well equipped to deal with their special needs in a classroom setting. The children are also highly functional in comparison to what they originally could not handle. I believe that having this perspective and experience certainly helped prepare us for when my husband suddenly suffered a traumatic brain injury in combat and presented with the same issues and symptoms.
The biggest triumph for our family was to finally get acceptance from the very people that thought we were negligent or unresponsive parents in the first place. They now see the depth of dedication we have to our children’s overall well being and admire our ability to cope. This didn’t come easily, but it was well worth the journey of finding the right answers.
In my next article
, I talk about the specific steps we took to ride through the criticism by becoming more open, and how we helped others do the same.
- Torrey Shannon