I read this today, and it is spot on. While the mother asks for forgiveness of her snarkiness and attitude, I would like each of you to know that I want you to see this for what it is...truth to PWS parents, and something everyone can learn from. I want to raise awareness for this syndrome, and it is, like this mother points out, extremely COMPLEX. Please do not feel like I am singling anyone out. These comments and words are things that are typical to say, but I want you to step back and put yourself in our shoes, the shoes of those parents who have a child with PWS. Words can hurt, and that is why the end is so powerful, crucial, and imperative. We must be kind to one another...everyone is fighting a battle in their own way. http://jessicapatay.com/?p=306
Jessica, thank you for this...
The 10 Things NOT to Say to a Parent of a Child with Prader-Willi syndrome
We (special needs parents) have all been annoyed, hurt, or angered by someone’s comments to us about our child. It’s usually someone well-meaning, and just absolutely unaware of Prader-Willi syndrome, or what it’s like to have a disabled child. We cannot expect others to understand or to know what to say or not to say. We must give them some grace. However, with that being said, I thought I would compile this list. Forgive my snarkiness.
1. Oh, you have such a quiet baby. You are so lucky. How I wished my child would have cried and screamed, but he could not.
2. Your kid is such a good eater! Yes, it’s his hobby. It’s all he thinks and talks about. Every day. All day long.
3. I love how many questions he asks. He must be really smart. Yes and no. His IQ is actually low. And the questions are nonstop because he is a high-need-to-know kid and also is very anxious about life in general. It is cute to you, but its actually exhausting to our family.
And then:
4. Its ok, he can keep asking me questions. No, really we are teaching him NOT to talk to strangers, and not to ask more than two questions.
5. Oh, my kid likes to eat all day long, too. As if it’s the same thing. No, its not life-threatening for YOUR child to eat whatever and whenever. You don’t skip parties, restaurants and social gatherings because your kid is a snacker. However, our life is completely altered.
6. You must be a special family if _____ was entrusted to you. At the same time that this seems like a compliment, it is not comforting. At all. I am definitely growing in my compassion and patience and parenting skills. I don’t feel special though. Even when I recognize how my heart and life have expanded as a result of having a disabled child.
7. I don’t know HOW you do it. Because I have to. I don’t have a choice. I will not crawl into a hole. I will be a Mama Bear Advocate for my child and you would too, if you HAD to.
8. Maybe he will grow out of it. No, but that is a nice sentiment. He will not grow a chromosome 15 someday.
9. I hope he/she will be ok. Well, he DOES have a life-long disability. So probably not. Its better to say, “Are you ok? Do you need a break? How can I be helpful to you?”
10. Oh, really? But he looks and seems so normal. Because he should have a 3rd eye or something? Yes, he is very beautiful and sweet. But trust me. It’s very complex, and NOT a normal genetic disorder at all. Our family life is not normal as I had hoped and dreamed.
Again, please friends, forgive my sarcasm and attitude. It does feel cathartic to vent it all out.
But–I don’t do this for the sake of vomiting my pain and ache onto you. Truly, I hope that you will be more aware of the power of your words. That they carry heavy weight. May you and I together have more sensitivity when it comes to talking with mothers and families with very unique, non-typical circumstances.
Everyone is fighting a battle of some sort in their life. Everyone. So lets be kind. Very, very kind.
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