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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They look alike, she should have known her genetic material just by looking into a mirror.
Pumpi, PWS is caused by a deletion on the 15th chromosome contributed by the FATHER. Her resemblance to her son has NOTHING to do with it. Your comment is ignorant and insulting. What are you insinuating?
P.S. The deletion is also random and unpredictable. It could happen to anyone, and neither parent is a carrier of a PWS gene. It’s not an inherited gene, it’s a random deletion, and there is no way to predict it or prevent it.
You should also add “I hope the mother got over her drug addiction.” We had my son in T Ball a few years ago and someone said that to my mother about my son.
I love this article, it’s hard to find others that go through the same issues with PWS and other people. I love having them be curious about my son’s condition[he’s five with pws] but I get angry when some people don’t understand when I tell them they shouldn’t encourage his no fear of strangers.
Sorry I put that in the wrong field for some reason.
My son is turning 12, with PWS, and the youngest of 4. I have three regular kids, and now Hayden. I subscribe to the philosophy of making sure people know that it’s ok to talk about his syndrome. I think people struggle more if I’m not comfortable talking about him. He is a person, and a very good one. Is he easy…..no. Do I adore his splendid way of sharing his love, his complete innocence, humor, and determination to making people notice him and smile? Absolutely! Is he difficult? Yes! Is my life richer because of him? Yes! Do I wish this upon anyone, or any parent? No! What choice do I have? None! I just do my best on a daily basis, with some foresight toward his future and what is best for him. Please don’t treat him like an alien, he might not get it, but that would kill me. Actually, most people are pretty nice, but if they aren’t they are just ignorant, and it’s our job to share his greatness with them. He has already climbed mountains most people will never have to climb in there life. I am so proud of his accomplishments. Is it difficult? Yes Nothing worthwhile is easy. Is he worthwhile? YES!
Wow! I couldn’t have said it better! We need to educate people – not get mad because they don’t understand. We wouldn’t either if we didn’t live it. I sure got a kick out of the article, though. Exactly what I’ve been hearing for years. I try to appreciate that they care and not let it get under my skin.
Hi I’m Ashley and I was diagnosed with PWS when I was 8! And I am doing good with my PWS
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#11. If you had a stronger faith your daughter wouldn’t be like that. If you would just go to Fatima or Medjugorie she would be fine.
actually stated to me by a relative
My mother in law had us always rubbing her medal. Ugh. 🙁
While I very much appreciate your honesty, you almost make me scared to approach anyone with a special needs child for fear of saying the wrong thing. I love children and I love interacting with special needs kids – I guess I should just stick with the kids because they probably don’t care if I say the ‘wrong’ thing? 🙁
Abby, no need to be scared, just think about not saying whats trite and what makes YOU feel better. Please note the italics were what I think and NOT what I would actually say. I actually have thick skin and do not get offended easily at this point in my journey. But I still think it was necessary to put this out there. If it helps one person be more sensitive to special needs families, then my job is done.
Well said that’s exactly how this article made me feel. People who dont understand a condition shouldn’t be shunned because they dont know about it and people cant be expected to know everything about every thing condition! Welcome any well ment comments no matter how you wish to take them. If someone means well dont bite their head off for saying “the wrong thing”
But in reality, most people DON’T mean well. They say irritating, trite comments to satisfy their personal curiosity or to reinforce their own worldview. If you truly cared, a simple, friendly “I care about you, but I’m not sure how to express it” would suffice. That would be a nice segue into a heartfelt dialogue while showing vulnerability.
The burden we parents face is immeasurable, so when people are offended at our “offence,” what are we supposed to do? Suck it up and let the agony build up, until we explode, or try to do something constructive like post a blog? Then you still get offended. We can’t win with these sentiments.
Really funny and insightful, Jess!
Thanks Jessica for being so honest with this post. It was a good reminder for me in my interactions with parents of special needs kids!
My daughter does not have p/w syndrome, until someone I used to teach had a daughter with had it, I had never heard of it. I thank Facebook and people like yourself that through sharing information in this way maybe we can all understand a little better, and so be a little kinder, more thoughtful, more understanding. I am sure that I may have fallen into those… Well intentioned but rather inane Type comments. My best regards to your family and to all living with this condition… As parent, sibling, friend or syndrome holder… C x
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My PWS son is 37 and I can relate to this 100%
Thankfully for parents of these special children, awareness has improved and there is more help and guidance nowadays. I struggled to the point do absolute desperation as there didn’t seem to be anyone I could approach for guidance when my son was born.
Caring for a person with PWS is so very hard and each time I hear of another baby born with this, My heart goes out to the parents for what lies ahead.
After 24 years with my son, I made a heart-breaking decision that I couldn’t save him from the world of food that was the other side of our door. He would go to any lengths to eat and his weight ballooned to over 23 stones. I tried everything but eventually I realised I was fighting a losing battle. My son was blessed to get a place at one of the specialist homes run by New Directions and he has now been there for nine years. His weight is 10stones and his life and health are wonderful.
Whilst I have often felt that I failed him, I stood in his home one day amongst the other residents and realised that my son was, at last, living in a world that was normal for him. A round peg in a round hole….. and I could never have given him that life at home because his compulsion to eat would override anything and everything and life for the rest of my family was never normal. PWS people have no capability of reasoning or logic, so however hard you try, the end result is always the same, they will find a food source.
I am very proud of my sons achievements and eternally grateful for the trained people who have helped and encouraged him to be the young man he is today. I now accept that I didn’t fail him, in fact I gave him the chance for a longer and healthier life in a place where his special needs are understood.
While I can understand the frustration, my son is borderline Asperger’s , he has quirky issues. Classmates don’t understand why he gets special attention, extra time , modifications…is that their fault? No, I think we have created a society where people are afraid to make eye contact or say good morning to someone else for fear of offending!! Someone making an innocent comment about how quiet your baby is, how lucky you are, may have a child with a challenge in expressing themselves and scream all the time. I met some great friends 14 years ago because I chose to speak to and make a comment to a dad in the grocery store about his son, his wife started a play group that was a blessing to my family!! So, maybe instead of looking for the negative in someone’s innocent comment, maybe chose to just say yes, he is!! Or perhaps use the comment to help educate!! People fear what they don’t understand.
Well said, I couldn’t have said it better myself. My exact thought through out the article. Best wishes to all struggling mothers but get a grip on reality the word does not revolve around you, it revolves around your child. Like the reader said all mothers struggle and try to lend a supporting comment, don’t read between the lines, take it for face value they are trying to be kind, take it as an opportunity to educate, empower, and make the best of what you created, a life. Some woman never get such.
I understand it is hard when people that do not know or understand your child’s difficulties. I have a grandchild with PW, a brother that is dyslexic and a nephew who has cerebral palsy.
Most people comment because they do care, are interested and are curious. To take offense does not help the situation. You will turn people away by being that way. I have listened to people like your suggestions of what not to say to someone with special needs and I have to disagree. If it needs to be explained hundreds of times to help people understand and stay connected with special needs people. Rudeness and sarcasm is not the answer.
I hear you. My sister inlaw has two special needs children. One has spine bifida (and so much goes a long with that. The fact that he will always be in diapers and unable to use the restroom himself, cannot run or play with other kids etc.) And he is also mute (has never spoken a word, he’s 7) and has the mentality of a 2 year old and is completely obsessed with food.
Her other son who is 10 is highly autisic. He has sensory issues which include loving pain. He also was born with a heart defect and will be going to get his cath surgery soon.
These disabilities are a result of taking a prescription for epilepsy while pregnant.
Long story short, your blog post on people’s questions and comments to you made me sad. How are people to know what it’s like in your shoes and what you expect them to say if they have never lived your life? I think we all need to be a little more forgiving and compassionate.
I myself have a very serious blood disorder and even while hospitalized, people’s comments seemed so… so.. I don’teven know words to describe how they made me feel but after thinking on it i know their intentions were good . They didn’t mean to hurt my feelings or make me feel any way other than better. Maybe you can look at it that way too? We’re all at different points of life, some more stressed, financially better or worse, medically better or worse, some of us have had it too easy and some too hard but I think with most comments people are just not educated of our own personal life and that’s okay! Take it all with a grain of salt because if you dont, it will spoil your spirit.
My prayer is for your endurance through this journey with love, peace and joy. My 2 children are not disabled so I can not relate, but as a mother and a woman I extend support for you. I can feel from your words how overwhelming it is to care for your child’s needs and the rest of your family. May God lift you up and hold your heart
I sure hope i,m not one of those people,But as a Mother of 4 beautiful children
The 4 have addadhd each one different,2 have asthma tg its in remission for now but always a worry ,one has early scoliosis one wears glasses and has to be checked has stigmatisim that did,nt show up early,My Mothers instinct is incredible,i,ve corrected doc,s teachers and have to be on constant vigil,their father does,nt believe in addadhd,so refuses to understand when 2 of them developed tic disorder on top of everything else
Anyway not related to your story but like you said and Robin roberts the news anchor s new book” everybody,s got something” its def true,we women get so good at pretending when inside your heart is breaking best of luck
Oh how true those 10 point are my son Oisin has PWS and while i know so many people mean well, some of those statements or questions send me into Orbit!!
Felt good reading those actually made me smile
Thanks
Ann
Having grown up with a mentally handicapped brother, I think I have dealt with the pain and irritation that one experiences when having a handicapped child. In your last written words you said, “lets be kind, very very kind.” I actually thought every response you listed were words of kindness from someone who doesn’t understand your sons disease. I think I may have said one of these sentences to you myself. I don’t think I said “you” must be special but I think I said your “son is special” because, after my brother passed away, I realized how loved and special my brother was to many people who met him. I know how hard it was to deal with people who were ignorant of the issues I experienced with my brother. I also know I could tell when someone was speaking ignorantly and lovingly about my brother and when they were truly being unkind. I hope I did not offend you…. My apologies if I did. xoxo Lynn
SO true! I totally get it.
Me pasa igual con casi o mejor dicho con todo el mundo. No es lo que hubiesemos querido es con l9 que tenemos que convivir…duro fuerte pero muy felices llenos de mucho amor
Love this! You are so right.
I have a son 5 with PWS. Absolutely LOVE this!!!! I believe I may have heard all of them!!!!
I know exactly how this feels. My son has angelman syndrome which is the opposite of this. His maternal copy of chromosome 15 is deleted
Great list! And very familiar – my son is nearly 4 and has PWS and my list would be almost identical.
Thanks for writing about it – it’s always nice to hear that someone is having the same thoughts. And I agree – if the last nearly four years have taught me anything it’s that everyone has some sort of issue, battle, worry. Your solution – to be kind – is something to live by.
Sophie
thnx i dont think it is snarkiness at all as my parents tell me the truth is always welcome and it hurts sometimes i mslef am a adult with Prader willi syndrome an have watched my mother just let alot slide i am so thankful for parents like yall who will do anything for their child
I understand your need to say these things but.. I still dont know how to say the right things to you.
When I was widowed [40 years ago!] I couldnt accept [with grace] the things people said to me but even now I dont know what to say to a bereaved person.
However, I think it is important to say something. The easiest thing is to say nothing but I vow that I will never say nothing.
“I feel your pain, I care, I want to help but I don’t the right words to say. How are you feeling right now?”
No need to think too hard. Sometimes just speak from the heart and keep it simple.
Wow. Not snarky, just straight from your heart. And straight to mine. Love you. XO
I am always amazed at your strength, your wisdom, your compassion and your love
Wow, Jess. I know I’ve said #6 and #7 to you. How annoying. And coming from a person who considers her self sensitive. I’m sorry! I guess we can all write our own lists… My list would be “10 things not to say to a pastor’s wife”… that would also be cathartic!!