Tonight's picture was taken on the first day of preschool in 2005. Mattie's teacher, Margaret, took this photo of Mattie and assigned him the MOON as his symbol. All the children were identified by a symbol, and the symbol was selected based upon the first letter of the child's name. This was how the name "Mattie Moon" became part of our lexicon. It was from preschool! It is rather ironic that Mattie would get assigned the moon, especially since we now look up to the moon to try to connect with Mattie.
Quote of the day: Five years ago I would be the first person to admit that I’d do anything to get out of gym class. But now, I would give anything to play volleyball like the other kids and be with my friends. ~ Emma Shellenberger
Recently I have learned about a genetic disease that impacts children and teens. It is called Ehlers-Danlos Syndrome (EDS). I have to admit I had never heard of it before. Yet two friends (who are totally unrelated) talked to me about it looking for guidance on how one manages this from a mental health perspective.
You maybe asking yourself, what is EDS? Well Ehlers-Danlos Syndrome is a group of inherited disorders that affect connective tissues — primarily in skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in the body.
Here are the signs and symptoms of the most common form of Ehlers-Danlos Syndrome include:
- Overly flexible joints. Because the connective tissue that holds joints together is looser, your joints can move far past the normal range of motion. Joint pain and dislocations are common.
- Stretchy skin. Weakened connective tissue allows your skin to stretch much more than usual. You may be able to pull a pinch of skin up away from your flesh, but it will snap right back into place when you let go. Your skin might also feel exceptionally soft and velvety.
- Fragile skin. Damaged skin often doesn't heal well. For example, the stitches used to close a wound often will tear out and leave a gaping scar. These scars may look thin and crinkly.
After reading this description, you may be saying how bad can it be to have lose skin and joints? When you think about the important role that skin serves in our lives (as the defensive barrier to everything in our environment), not to mention joints, you begin to see that this is actually a very debilitating and long-term disease for anyone, much less a child or teen. I included an article below that captures the voice of a high school student who manages life with EDS, but at the same time wishes to educate those around her about the realness of this disease.
Certainly I have limited knowledge on EDS, but I most definitely know what it is like parenting a child with special needs. Even before Mattie was diagnosed with cancer he was unique, given his severe sensory motor issues. As Emma describes EDS as an invisible illness, I absolutely understand. I felt this way dealing with sensory motor issues. Of course I am not comparing Mattie's issue to a genetic disease, I am simply saying that our society doesn't understand things they can't see. Children with invisible illnesses are constantly belittled or ostracized because others think they are making up their symptoms or feelings. After all if you can't see it, it doesn't exist. But unfortunately just like with any illness, there are psychosocial consequences and for invisible illnesses they are tenfold.
I am switching gears to a visible illness.....When Mattie was diagnosed with cancer, I tried to tell his doctors that he had sensory motor issues. But they did not believe me as to them Mattie appeared to be 'fine.' Of course, they quickly learned that confining Mattie to tight scanning machines and holding him down or in certain positions was a big NO NO! Unfortunately by that point the damage was done. Because his doctors did not listen to us, what resulted was the fact that Mattie couldn't endure ANY scanning without sedation. Yet I truly believe if consideration was given for this invisible issue, we could have avoided additional anxiety and exposing Mattie to anesthetics.
I also remember quite vividly how people reacted to seeing Mattie.... bald, with scars on his limbs and in a wheelchair. In fact, some of the looks people would give me out in public were noteworthy! Sometimes it would make me so mad, I would want to give people a talking to. But I never did as I did not want Mattie to get upset or to further absorb the nastiness that sometimes surrounded us. To this day, when I think of Nat's stadium, I think of the horror of bringing Mattie there and the commotion his presence seemed to provide to those at the park.
So what's my point to tonight's blog? It is easy to dismiss an illness (both invisible and visual) as being NOT THAT BAD. In fact, we may want to believe this because it is hard to accept that children and teens live with immense pain and physical/psychological problems. But the point is, educate yourself. Listen to the person describing the symptoms and issues. It is hard enough living with a debilitating disease, but not being understood by a health care provider, teacher, or friend only compounds the situation.
To My Teachers, From Your Student With Ehlers-Danlos Syndrome:
https://themighty.com/2017/04/teacher-letter-ehlers-danlos/?fbclid=IwAR0F_UcuRXiFr-TlERxxnZ2yB5jnkyGsFz-6KD8L-3xZJcUmCDowzKT9A4w
No comments:
Post a Comment