IAM Part 2

Being a mother/parent of a child with special needs can be a lonely place. Regardless of the level of care, you can easily find yourself thinking “No one understands how I feel.” That was me, until I found the F.I.R.S.T Foundation, which has a support group on Facebook for parents. I also was introduced to a family, through a mutual friend, whose daughter has the same type of Ichthyosis as my son. The neat thing, this family lives minutes from where we live! What are the odds! I believe this was a God ordained plan. We have been able to share frustrations and stories about the comments people say regarding our children. It amazes me how many experts there are on something so rare. Not to mention how many grown adults have forgotten the old wise teaching “If you haven’t got anything nice to say, don’t say anything at all”. I would love to shelter my son from the foolish remarks of others. I wish I could intercept every look or stare when his skin is flared up. But I can’t. What can I do?

 I can help educate others about Ichthyosis and bring awareness to this skin condition. I can continue to teach my children that we show the love of Jesus Christ, regardless how a person may be different. I can model the behavior I want shown to my own children.

I told my friend about my blog and asked if I could send her princess some questions to answer. She was more than happy to participate.  This amazing 7 year old is a rare gem! She lights up a room with her smile and her spunky personality brings some much joy to those around her.  

 If you could tell someone who knows nothing about Ichthyosis, what would you tell them?

"I have ichthyosis, it's a type of skin condition I was born with. God handpicked my skin for me! It causes me to be a little pink, that's my mom's favorite color, and I have to go to the nurse 2 times per day because my skin is dry and I need lotion."

 When you meet an adult and they are curious about your special skin, how would you like them to ask about it?

"Nicely! Not like, why do you have that skin? Please be respectful, not mean. It hurts my feelings when people think something is wrong with me."

 What would you like to see happen in your community to help educate people about Ichthyosis?

"I would just want them to know that being different is ok, and I'm just a normal kid! I don't want to be asked questions every time I go somewhere."

 How do you get exercise since you can get to hot so quickly?

"Swim team! It's fun! I'm like a mermaid, but maybe, mostly a dolphin! I love how fast I can go! "

I also asked the FIRST Ichthyosis Parents the question “What is something you would like the public to be educated on in regards to Ichthyosis?” These are their responses

  • Just say hello. Don’t stare or look away shamefully because you looked at my daughter who has a visual difference.
  • It is not contagious.
  • It’s okay to shake or hold our hands.
  • It’s rude to stare
  • Kindly ask questions.
  • Ask where you can find more information so you can learn about Ichthyosis. Then share the information with others. If we don’t teach what we know, how will others learn?
  • Parents don’t hush your children from asking questions. It’s okay to what to know what something is or the why behind it. Teach your children the proper way to ask delicate questions.
  • If you see or hear of someone being treated differently because of a condition they cannot control, stand up for them. Be an advocate.
  • Believe us when we say “I have or my child has a skin disorder” We are not neglecting our self or our child. Why should we have to provide a doctor’s note to make you feel more comfortable?

The last statement was in regards to the mother and child who was kicked off a well-known airline due to visual difference of her skin. Another passenger asked her about her “rash” and she shared with him that what she and her child have is not a rash but a genetic skin disorder called Ichthyosis. She even pulled up the information online to share with him. The flight attendant even made the remark “Well she doesn’t have a doctor’s note.”  She and her child were escorted off the plane.  This happened on Rare Disease Day of all days.

 

Next week I will share the last blog for IAM. I will talk about the struggles of Summer time and caring for Ian’s special skin.