Looking different
This afternoon I took the kids to the waterpark. It was a triple digit day, and we have been trying to slowly get the kids back to a respectable bedtime...which means three key words: WEAR THEM OUT.
The kids enjoyed the lillypads (Hunter can now go all the way across- and it takes upper body strength to pull yourself up on the pads if you slip in the water), Paige has perfected her dive off the board, and even Peyton used his "big arms" to swim across the pool many times. I feel more at ease this year, since both Paige and Hunter are great swimmers, but I still need to be vigilant at all times to make sure Hunter is in my eye sight.
Twice a day, for ten minutes, the pool is set for "adult swim." The kids are forced to sit out and rest, but today my kids went to the indoor play pool. All three of them were running around, chasing each other. The even got down on their hands and knees and pretended they were a train, paddling along yelling, "Choo choo!" Hunter was right in the middle of it all. At one point, I smiled to myself and looked at the other moms on the side- I bet none of them had a clue that he had Autism.
When the whistle blew to return to the big outdoor pools, Paige and Hunter headed for the lillypads one last time. There was a group of boys standing in line, and one of them accidentally pushed Hunter. "OW!!!!!!!!! He pushed me!" Wish Hunter could learn to not be as sensitive to touch. I told him it was an accident, and the boy looked back at Hunter, and pointed to his cheek. "What happened to your face?"
My heart sunk.
Stupid Vitiligo.
It was the first time a peer had questioned his skin discoloration. I think I have gotten used to the way his skin looks now, but with his unavoidable tan (we SPF like crazy), it is a prominent variance in skin color.
You can really see the "mask" around his eyes in this picture. My superhero.
Hunter didn't seem to hear the boy, or pay attention to what he said; however, there are times when I think he isn't listening and he responds or asks a question (for example, he asked me the other day what time his "therapist was coming"- I've never said that word to him before).
So he may have, in fact, heard this boy and silently wondered, Is there something wrong with my face?
As hard as we work to mask the underlying Autism diagnosis and characteristics through endless therapy, I can't hide the white mask that has formed around his eyes, the circle that is around his left nostril, the large oval under his chin, and the two inch patch on his hips that started it all. Wish I could rewind the past and take him in to the dermatologist with that initial patch at 18 months and had it diagnosed early. Don't know if I could or would have done anything different, but it would have clued me in on the underlying Autoimmune Disorder that was about to encompass our lives.
I have come to terms with the fact that the Vitiligo cannot be reversed- his look is here to stay. IVIG could potentially stop the progression.
I love him no matter how his face looks-
I just pray that his peers will, too.
The kids enjoyed the lillypads (Hunter can now go all the way across- and it takes upper body strength to pull yourself up on the pads if you slip in the water), Paige has perfected her dive off the board, and even Peyton used his "big arms" to swim across the pool many times. I feel more at ease this year, since both Paige and Hunter are great swimmers, but I still need to be vigilant at all times to make sure Hunter is in my eye sight.
Twice a day, for ten minutes, the pool is set for "adult swim." The kids are forced to sit out and rest, but today my kids went to the indoor play pool. All three of them were running around, chasing each other. The even got down on their hands and knees and pretended they were a train, paddling along yelling, "Choo choo!" Hunter was right in the middle of it all. At one point, I smiled to myself and looked at the other moms on the side- I bet none of them had a clue that he had Autism.
When the whistle blew to return to the big outdoor pools, Paige and Hunter headed for the lillypads one last time. There was a group of boys standing in line, and one of them accidentally pushed Hunter. "OW!!!!!!!!! He pushed me!" Wish Hunter could learn to not be as sensitive to touch. I told him it was an accident, and the boy looked back at Hunter, and pointed to his cheek. "What happened to your face?"
My heart sunk.
Stupid Vitiligo.
It was the first time a peer had questioned his skin discoloration. I think I have gotten used to the way his skin looks now, but with his unavoidable tan (we SPF like crazy), it is a prominent variance in skin color.
Hunter didn't seem to hear the boy, or pay attention to what he said; however, there are times when I think he isn't listening and he responds or asks a question (for example, he asked me the other day what time his "therapist was coming"- I've never said that word to him before).
So he may have, in fact, heard this boy and silently wondered, Is there something wrong with my face?
As hard as we work to mask the underlying Autism diagnosis and characteristics through endless therapy, I can't hide the white mask that has formed around his eyes, the circle that is around his left nostril, the large oval under his chin, and the two inch patch on his hips that started it all. Wish I could rewind the past and take him in to the dermatologist with that initial patch at 18 months and had it diagnosed early. Don't know if I could or would have done anything different, but it would have clued me in on the underlying Autoimmune Disorder that was about to encompass our lives.
I have come to terms with the fact that the Vitiligo cannot be reversed- his look is here to stay. IVIG could potentially stop the progression.
I love him no matter how his face looks-
I just pray that his peers will, too.
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