How do you handle outsiders opinions and or delving questions?

[2Cor915]

 Hi,

Over the past few weeks I am having a difficult time feeling like anyone else truly gets it... ya know??  My closest friend the other week said she would never leave the house if she had to deal with all the questions and opinions about my son and on how I should raise my kids that I get wherever we go.  I have three children.  my oldest daughter is three and the twins are now 21 months.  Caleb is one of the tiwns and he has alot of equipment that we need to carry around including an oxygen tank and a pulse ox.  It seems his equipment is an open invitation for people to inquire about him, voice their opinion on whether he deserves the handicap tag and even how I am raising our kids.  I was told just yesterday that my girls we going to grow up to be angry and miserable adults due to the attention Caleb recieves....  I put on a Christian face and try to blow these things off or answer the questions as vaguely as possible, but I am finding myself at my wits end.  How do you handle the prying public??  How does God expect us to reply??  My son is not a spectacle, yet I feel we are often put in that light...  Am i being too senstive??  Thanks for your advice!!  My prayers are with you all!

 

[Evana]

You are not being sensitive! My daughter had oxygen for 3 months as a baby and a sat monitor too and the stares and questions were annoying. I just had to put up with that for a few months though. Jaycee has Down syndrome so she looks different thus drawing attention to herself sometimes. I think most people's questions are out of concern about why/how a child would be so ill. That doesn't mean you necessarily want to talk about it everywhere though.  One particular thing I get with Jaycee now is people asking me if she had a rash or a bad sunburn because her arms and legs always look red because of her pulmonary issues. I'm always like "no-she's has a heart and lung problem' which usually embarrasses the person.

I recently ordered a shirt for Jaycee. The front says- I'm a miracle. The back says- Jesus is the name above every other name: Down syndrome, heart defect, Wolff-Parkinson-White syndrome, apnea, asthma          It gives info is a positive manner and witnesses to people about all she's been through.

It is not true about how your girls will feel. People don't know how your family functions at home and all the things you do for them. People shouldn't comment on personal things like that. I read a book about siblings of special needs kids. It was good but it's loaned out so don't remember the name of it.

[2Cor915]

 Thanks for the pick me up!!  I may utilize your tshirt idea if you don't mind...  I think that is really great.  At one point I was going to make a sign to hang off Caleb's O2 tank that read "This tank is not an invitation for you to ask about my personal medical issues.  Please respect my privacy."  I have not done it because my husband thought it was too harsh :)  Because as you said I think alot of people are well intentioned, but at the same time I am not approaching any one of them and asking "Why do you gave this? or What is wrong with you?"  You know?  I would love to look into the book you mentioned.  Please let me know the name when you can.

Lainie

[Evana]

the book is

Being the Other One: Growing up with a bro or sis with special needs by Kate s.

This book changed some of my daily practices but it lets you know thoughts of a sibling. Some of it really surprised me.

[Pukalani79]

 

Quoting Evana:

I recently ordered a shirt for Jaycee. The front says- I'm a miracle. The back says- Jesus is the name above every other name: Down syndrome, heart defect, Wolff-Parkinson-White syndrome, apnea, asthma         

 What an awesome idea! I love it!

I think most people have not idea what to say, and for some reason still feel compelled to say something, so whatever comes out of their mouth is often very insensitive, although - I try to remind myself - well intentioned.  My children's struggles are not obvious at first glance, or even second. Which brings a whole different set of questions and comments "What do you mean she ran a 5K, is she in pain or isnt she?" Well, yes but the running distracts her; gives her something else to focus on.. anyway...

I don't have any words of wisdom other than to smile and thank people for their comments, regardless. Go home, write it down, crumple it up, burn it and give it to God. He gives us trials - other people's comments - to strengthen us.  Somehow it's a blessing, it's just difficult to see...

 

[mopsmommy5]

On another forum a mom made business cards telling people the info with a website to checkout also if they want further information about it too. I have one child with autism/bipolar (13ds) and the another with traumatic brain disorder (7dd) and I'm planning on getting some soon. My children have unvisible disorders that make it hard for others to comprehend, let alone understand when they have a fit or issue of any kind. Most times I take comments fine, advice is another issue. I usually make a comment when my kids are acting out, like "Special Needs kids are so much fun!" Usually stops people from commenting, asking, or judging anymore. I just wish people wouldn't pry or judge.