Troy3357 said:
One of the biggest barriers to going out is the nasty comments. You have to bear with me as I was around with Billy most of his life, but up until the last 3 years I had not been out with him. My mom took him everywhere he needed to go. I am not ashamed of him, I would just tell folks where to go (and not very nicely)...
but when folks get nasty because they think a 30 something year old has no business with a bottle or pacifier no matter what their disability, it scares him and makes him upset. If I get angry then he gets even more upset.
Troy
Hi
I found this thread yesterday and was completely touched by everything and everyone on this thread. I have not been able to stop thinking about all that I have read here since yesterday.
Troy--you are an INCREDIBLE brother. You are a true testament and honor to your beloved mother.
I am the half-sister to a mentally challenged adult "boy". While he doesn't have nearly the problems that you and many others here have to experience, he is totally dependant on my parents for his care, and one day that responsibility will pass to me. While I worry about that day, mostly for his sake, it is a responsibility that I have been prepared for since I was a child, and I take it on quite willingly.
I am also a former teacher, special ed aide, and the mother to 2 wonderful homeschooled girls. As a homeschooling parent I am also often on the receiving end of much unsolicited "advice" about how I am chosing to raise my children. I am in NO WAY trying to compare the seriousness of what I experience to what you have to put up with, but I want to share some specific stratagies that I hope can help you.
I spent a lot of my childhood defending my brother to others. I was asked the rude questions, saw the funny looks, and defended him against teasing. I know how frustrating it is and how angry it can make you. BUT, you know that your temperment affects your brother, and he is your number 1 priority. For his sake you need to find some less confrontational ways to difuse the situations.
You have ABSOLUTELY not need to discuss, defend or justify your brother's upbringing, personal habits, or situation to ANYONE--and certainly not a totaly stranger!
The first thing you need to do is take a deep breath. Then you need to find your biggest, most cheerful smile.
(in Disney that isn't hard!) If someone speaks to you directly in a negative way, you need a response that clearly sets a boundary and lets them know you will not be discussing this. I suggest something like:
"I appreciate (understand) your concern, but I prefer not to discuss my personal family business with strangers."
"I understand your concern, but Billy has excellent medical care and I only discuss him with his doctors."
"I appreciate your concern, but I have made my choice on how to raise Billy based on his unique needs and there is no need for debate."
You HAVE to say this with a huge, caring smile and light tone. That way Billy won't get agitated. You also let the other person know you are not going to be rude and sucked into a debate or defense of him.
After you say this you have 3 choices.
1. physically remove yourself from the situation by walking away.
2. Make it obvious you will ignore them by turning your back and talking to Billy or the aide (but not about the comments just made!), or someone else around.
3. If you are "stuck" with this person in line or at a parade and think you need to continue a conversation IMMEDIATELY change the subject after making the comment above.
" I would love to hear about your day here. What rides have you been on so far?"
or, since they obviously LOVE to share their opinions:
" I would like to know where you recommend you we might go for lunch?"
(remember to keep that big smile and cheerful tone at all times!)
Often that will change the conversation (people love to talk about themselves and now you are asking for their opinion!).
If they continue to make comments (but not directly to you) after you have turned away then you will just have to ignore it. From how you have described your Brother he probably won't notice/understand them, and he will take your cue from your behavior. And if you keep him distracted he will hopefully be fine.
IF they continue to be rude TO YOU and offer advice/comments then you may need to go another level--but you need to continue to have that big smile!
"WOW! I didn't realize that you have raised a child with (insert some big words to describe Billy's condition) also!"
Most likely you will get "Well, no but. ." at which point you cut them off (still cheerful and smiling) with
"Oh, then you have no experience with the joys and hardships of raising a severely handicapped child and really are not in a position to offer advice. Again, I understand your concerns, but do not discuss personal issues with strangers."
IF they try to answer "yes" (and no parent who has EVER been in that postion ever would, because they know better than to offer advice like that!) it will probably be something like "well, my sister's child has XXX condition" or "my child was ADD and I never. . ." at which point you go right back to the above. OR you can get really excited and begin to engage them in a long in depth, technical discussion (since they just told you have been in the EXACT same situation) of some of the issues (but not the pacifier and bottle).
I suggest you start with medical tests or diapers!
"What brand did you use? We prefer XX because of less leakage etc..." Basically, the "gross out" factor! You have still changed the subject from what they wanted to lecture you about, and I guarantee they will lose interest and move on pretty quick!
I really can't stress enough that you have to remain upbeat and cheerful. Billy will take his cue from you. Also, that signals to the "offender" that you are not going to be sucked into a debate.
As for those that stare. I have to admit to sometimes being one that stares, especially at Disneyworld. Why? Because I love to see the joy on people's faces. From how you have described Billy I am guessing that I would probably really enjoy seeing the joy and awe on his face. Please don't assume that all those who stare are doing it to be rude, or are thinking terrible things. Unfortunatly, as a parent or sibling of a special person, you have to develop thick skin along with all the other adaptations you must make in your life.
You CAN NOT change others, you don't have the time, energy or need to educate every single person about your situation. I must respectfully disagree with the idea that the answer is to stare or make a rude comment back. As advocates for our special loved ones I think we "kill more flies with honey than vinegar". I think being rude back just "confirms" to those offenders that special children are weird and different and their families are nasty and bitter and therefore are in need of their advice and opinions.
I will be praying for you and Billy. I hope you have an incredible time! I would LOVE to see photos when you get back. Especially when he meets Pooh Bear in person for the first time! Please keep us updated.
aw: Best of luck for Billy's continued recovery and your trip.
I love that you are doing this for Billy, Disney has been pure magic for my little girl and family.
. That was not it at all. My concern was that you may hear an ignorant person being just that...ignorant. I would enjoy at least getting together to meet and if Billy is cooperative then spending some time together.
