Blog To those who don't have a child with disabilities

[kewpie]

I thought this woman made some interesting points and I certainly could relate to some of it.

www.nopointsforstyle.com/2013/08/dear-people-who-do-not-have-a-child-with-disabilities.html?goback=%2Egde_4835690_member_265628613#%21t]

[healthy11]

While I understand the points she's trying to make, I know I've even made some of the same comments that she finds hurtful. When people find out that I also have a child with special needs, I hope the remarks aren't viewed as being insensitive. Truthfully, even a well-intentioned, sensitively worded comment, made on a different day, when a parent is feeling more stressed, can be interpreted differently.

It's definitely not easy being a parent, and infinitely harder when the child has special needs. In that respect, I agree that it really helps to have a friend "Just show up and listen. There’s nothing any person in pain needs more."

[empeg1]

Oh I related to the blog completely. I could have written the same blog and meant every word. To this day, people say things that I feel hurt me. Friends come up with advice, which they feel will help me to extricate myself from the ongoing problems with the daughter. "You must let her hit bottom. She has to learn from consequences and you have to let her. Why won't you try another approach? What you are doing is not working. She has to learn how to live in the world"....... All said with the best of intent and a total absence of understanding, both of my daughter and the disability of FASD and of me, as a parent, who loves her daughter and who has a child with significant brain damage. The latter does not go away. What I need instead is a compassionate heart and a listening ear.

[jisp]

I think many of us who have challenging kids have heard statements like these. Did I find them hurtful? Not really. I knew that unless somebody had walked in my shoes they probably did not understand the intensity of the challenge or the job I was doing.

I had plenty of times when friends and family said or did things that hurt me. I know some moms that come up with witty sarcastic replies. I often chose to just not engage. In most cases I was able to move on and in the best scenario educate them about the challenge we were facing. I like to think that I helped some friends and family become more sensitive and more understanding so that when they encounter somebody like my son they are better equipped to deal with it.

But what really amazed me is that even to this day when I open up to others about our struggles I hear stories that I might never have heard if I had presented our life as being idyllic. The point is that most people have some sort of crap in their lives.

[healthy11]

"But what really amazed me is that even to this day when I open up to others about our struggles I hear stories that I might never have heard if I had presented our life as being idyllic. The point is that most people have some sort of crap in their lives."

Jisp, I agree 100%. I recall a few years ago, when one friend mentioned that she "missed the computerized holiday letter" I previously had enclosed with my Christmas cards. She said that while she disliked getting the "here's all the neat stuff our family did this past year" notes that most people sent, she looked forward to mine, because it was more realistic. I mentioned both "highlights and challenges" that we encountered, and it made her feel like she wasn't the only one whose life wasn't perfect. Everyone else's totally cheerful holiday letters made her feel like she got the "short end of the stick."

[kewpie]

>You must let her hit bottom. She has to learn from consequences and you have to let her. Why won't you try another approach? What you are doing is not working. She has to learn how to live in the world"<

How about they have to learn to sink or swim? Another thing people "don't get" is: if they get into a big mess, who gets to pick up the pieces? Me, thats who. Its easier to keep them whole than to let them fall apart and put them back together IF it would even be possible.

[michellea]

I don't know - rarely have I encountered these kinds of comments from strangers or mere acquaintances, and if I do I just chalk it up to they don't know what they don't know, they are nosey or they have poor people skills. I'll put up my armour and let it roll off. For those I know I better, sometimes I ignore for the same reasons or I'll offer another point of view if I think it might help.

Basically, I try to be as comfortable in my own skin as possible and ignore others if I don't like what they say. This goes for just about any offer of unsolicited advice - from my kids to anything else. It takes up too much energy to pay them any mind.

[empeg1]

Oh, comments from strangers do not bother me either. The statements I listed above were said to me came from friends and family. This is when the hurt starts.

I am a human being. Sometimes I need support or a someone to listen, for I face a very difficult task in being the parent of my oldest daughter. Who do you turn to when you are in need? To loved ones and best friends. What happens when it is those very people making such comments. Friends and family have told me, "Well she just has to learn to live in the world". The above operates as a conversation stopper! This is what the author of the blog was referring to, not the off the wall comments of strangers.

The worst one so far, "She is just a bad seed", said by my brother", who has also added comments like, "she just has to get over it (the brain damage) and live in the world". "she is always choosing to do the wrong thing" and "she is just manipulating you". When such zingers come to me by a best friend or a loved one, I find myself taking a deep breathe and simply ending the conversation. My best friend, in fact, walked away from her relationship with me because I would not take her advice and I as such an "enabler". Oye. My brother, btw, is a pediatrician.

[healthy11]

"My brother, btw, is a pediatrician."

THAT is discouraging. With his attitude, I can only wonder how many of his patients parents' concerns he's "dismissed" due to a feeling that they were making "mountains out of molehills?" It's hard to believe he is so insensitive...

[jisp]

Empeg,
I agree the thing that hurt the most was when family and close friends refused to see the real issue and insisted that either 1: DH and I were to blame - lax parenting, lack of structure, poor discipline etc etc...or 2: It is just the way your kids are. Those comments stung. I remember when my mother would sometimes be talking about the 6 grandchildren. My brother's kids were all being very conventional and on track and my mother would say when I called her crying about my kids, "Well your kids are......" That used to leave me feeling so bad I wanted to crawl under a rock. Instead of saying, "Your kids have challenges" or "your kids have an illness that is making things harder for them then their cousins" or "your kids are working so hard to overcome so much" my mom chalked up all the disparity between the kids to their personality and that stung.

I still have bad feelings about some family members due to our kid's struggles and how they reacted. I have to work really hard to overcome my anger and bitter feelings toward my brother for some of the insensitive things he did during the worst years. It isn't easy. I am lucky to be on the other side of those struggles now with kids who are doing well. If I was not I am not sure I could let go of my anger.

[michellea]

I agree that comments and advice from family and close friends can be hurtful and harder to ignore. When you are looking for love and support and you get judgement instead, it is like rubbing salt into the wounds.

[kewpie]

Empeg,

I am sorry about your best friend walking away. I rarely see my long time friends, instead I have a newer, larger network of parent friends who have offspring with disabilities, most of whom I met thru the local PTI, my kids special ed schools or Community Advisory Commitees. Its like a secret club, as I am open about my kids challenges, it is easy to find who gets it and who doesn't. Even coworkers who may not share publicly , come to me and share their experiences. It is sort of like a secret club. Visiting my local PTI is like being Norm at Cheers. Everybody knows my name. I give free workshops and sit on panels for them. I have met so many caring people who don't judge. I love this on-line community too as it can be a sanity saver. However, its good to have flesh and blood people to have a cup of coffee with.
Family wise, one sister has four perfect high-acheiving kids, my other sister has 2 with challenges and one "perfect" kid. I got three with challenges. My brother has dyslexia and my Mom went thru tremendous struggles with him and schools. She gets it. I am fortunate to have some family members who get it.

[healthy11]

I wasn't sure where to post this, but it really points out how people who don't have a child with special needs can be callous and mean: ca.news.yahoo.com/blogs/dailybrew/ontario-police-aware-hateful-letter-telling-family-euthanize-171036930.html

[empeg1]

Kewpie:

One thing that happens with parents who have a child with a FASD is that other parents who also have a child with special needs do not get FASD. So, even within a group where one might find support, one is the odd man out. At times, I have felt that way even on this list serve. But, I am heavily involved with advocacy for FASD in California. One outcome? I have organized not only an affiliate of NOFAS for Northern California, but a parent support group will start next month.

[michellea]

empeg - So glad to hear details of your advocacy and support efforts. Parent support groups can be so important for sharing information, perspective and helping parents to feel less isolated. And yes, I can imagine that even parents of kids with LD do not understand FASD. I see this across the board with mental illness, degrees of LD, and various disabilities. Even parents of children with the same disabilities often make assumptions about other children and their parents based on their own experiences. And sometimes their own experiences do not match up - even if they share a common diagnosis. I hope that your work with NOFAS will help to educate others so that families touched by FASD get the treatment and support they need.

[healthy11]

ditto!

[kewpie]

>One thing that happens with parents who have a child with a FASD is that other parents who also have a child with special needs do not get FASD.<

Yes. Very true. I see that happening all this time with parents of children with reading disabilities.

While FASD is a very special diagnosis, it does have a devastaing effect on the executive function piece which traverses many disabilities. Unfortunately many people don't "get" EF and mis-characterize it as laziness, stupidity etc...
When a DOR councelor once told me approximately half of all their clients "miss" scheduled appointments, that tells me there is a LOT of EF issues out there.

[healthy11]

I think it's important for us all to realize that not everyone, even parents of special needs children, view things the same way. The original poster said she didn't appreciate it when people said, "You must be a very special parent for God to give you such a special child," yet here's a story where the parent of a special needs child got a paid dinner receipt with a note, "God only gives special children to special people," and it made her day! news.yahoo.com/stranger-diner-note-family-epilepsy-131659087.html

[kewpie]

>I think it's important for us all to realize that not everyone, even parents of special needs children, view things the same way.<

I am guessing it depends on the context.
The first blogger may have recieved those words in a patronizing way or a way for the person to exlude himself from helping out.

The second story, shows true support and sympathy. The 2nd person was a truly kind stranger who offered support just by picking up the check.