Family and getting them to understand?

[Guest guest]

Hi Sara,

I think this is most of the battle for us Mito Moms. If I had a dollar for everytime a family member or close friend accused me of hovering or not allowing the kids to have any fun I would be a rich woman. It used to bother me a lot. Now it only bothers me a little. You have to remember, this is your child, and not theirs. You are the one who deals with the doctors and their recommendations not them. I let my family read the letter I asked DR Boles to write for the school explaining why they cannot be pushed in PE or at recess time or on field trips. This seemed to end a lot of the smart comments and questions. I still get a few, but I lovingly say, you know I really appreciate your concern for them because it shows me how much you love them, however please remember I too love them as after all I am their Mom, and I am doing what I know is in their best interest. I am sorry you don't seem to understand, I do have a very informative letter from their doctor if you would like to read it to help you understand why they must go in right now or cant go do something. " That pretty much ends it. Some have asked to see the letter so I get it out of my purse and let them read it. I usually get comments like oh I had no idea. You want to say Duh!!!!!! But I smile and thank them for reading it and thank them for understanding the kids needs. That's all you really can do. Well, you could fight them but that's not very positive or grown up! LOL Anyway hope his helps. Talk to the doctor see if you can get a letter for school purposes or friend/caretaker purposes. It has helped.

HUGS!

O and crew - Kira, , and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique

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[Guest guest]

I know, i can't believe how that guy reacted. I had once, i was in the handicap at mcdonalds just sitting checking fries for 2 seconds and making sure i ahd the order right incase we had to go in, well a person w/ a handicap behind me thought that i wasnt' because i didnt have the flag up which was my mistake usually i do and my husband took it down. I dont not drive w/ it. she yelled at me from inside her window. I have had to get after the parents several times at my daughtesr preschool for taking handicap parking that obviously arent. Because this was at a college and parking was scarce.

It was wierd though today, i told my mom that my sister called and appologized and switched her time to 2, my mom did say she was pmsing but my mom explained to her she'ld understand when she had children, yet it took my mom a while to understand why we had to be home. Hopefully we dont have many crisis's but i am going to do my best to prevent them.!

sarah

Kimberley Kretzmer wrote:

Hi, We too deal with family as well as strangers thatstill do not understand any of our kids illnesses. Asfor getting looks when parking... you are NOT alone!We have a lift van.. no kidding... our son is in awheelchair and trached... and I still get the looks.Our daughter has mito and although she has herwheelchair this year we have only had to have her useit four times. When she does however it is to allowher the energy reserve to be able to get out and playonce we get somewhere. Love the looks at amusementparks when she gets out of her wheelchair and walks tothe ride! That I think it clasic example of how peopledo not understand this illness and most likely neverwill. Our family denies that anything is wrong with ourdaughter.. or me .. or even my mother. She is theworst yet in

denial. I lost my hearing at 18... thendidnt know why.. now that our daughter has hearingloss and multiple other issues and diagnosed as mitothey still will not accept that its linked. Our approach is to have our family involved asmuch as they can without letting our children beharmed in any way by the families denial. We can notallow grandparents to watch them... as they will takethe tube feeding supplies but never actually tubefeed. They will still allow her out in the heat(whichraises her temp over 104 most of the time) without hercool vest on. So we get together as families only anddo not rely on them for support in other ways. Sad to say I have seen this many times withfriends with children with other disabilities as well.As for dealing with strangers... we have no problem instating that it is rude to stare. In pointing out thatthe child in the wheelchair (although it looks

like astroller more than a chair) is handicapped and toplease leave us alone. We actually had one elderly manblock me from passing him while he screamed at me thatthis was for handicapped people only. It was a bitscary in that he refused to back down. I finally tookmy son out of his chair into my arms and pointed outhis trach... lifted his shirt.. showed him his G tubeand asked the man if he would like to continue thisarguement with the police there because my son was awhole lot more handicapped than he was standing therearguing with me. It is sad to say the least but part of our livesand we try to explain to our children thatthey simplydo not understand. Kimberley --- sarah wrote:> I know exactly

what you mean. Zachs proned to> tremors/jerky episodes when tired. I haven't figured> out what they are. I think i have them too. My> husband i find is waking me up quite often asking me> if i'm shaking or the bed and usually its me. > > AS far as family goes it is aggrevating. I think> deep down they want to understand . I do know that I> told my mom that i sent a referal to make a wish> for zach and he is getting a wish and it is being> granted in spring of next year (an adaptive> playground) they dont give out wishes to anyone so> you have to have a proven "life threatening"> /"terminal " illness . My mom goes to me one day , I> dont see zach as having a life threatening illness.> She also says that she doesnt see me as disabled> even though i most likely qualify for the ssd I have> applied for. > It is funny how people view the disabled. You

would> be surprised by the amount of looks i get from> people who see me a person that looks young like i> do sinec i still get carded for lotto tickets, w/ a> handicap tag on the car. They watch you to make sure> ur disabled.> little do they know, they watch me and not my son.> Yet you see peoples faces change when I have to have> him sign because I can't understand him . > > > > A E wrote:> Hi -> > Big hugs go out to you. I know about your problem of> getting family members to understand about zach's> health issues. Been there, done that.> > has asthma and my family thinks its great to> let him outdoors and play for hours on end. Yet when> he starts coughing, the sign that asthma attack is> nearing-I take him by the hand and bring him inside> to cool down.

They spout off, "Gee He can never> have fun... He needs to exercise and run and be a> little boy." > > Thus when he tires and has been super active all> day- he begins his seizures and tremors. This side> they don't see. I have given up trying to explain> why...I simply pick up and do what I must> for the sake of his health and my sanity.> > I don't have any helpful advice to give you, wished> I did.> Hope someone will be able to give you the answer you> need.> > Ann (mito), mom to 3 1/2 yr-asthma,> seizures, tremors, speech delay, reflux, milk> intolerance, suspected mito> > sarah wrote:> > We have a hard time getting , my family in> particular , to understand why we are so> overcautious w/ how late and how much exurtion we> allow zach. > > I

try to keep zach only out for a couple hours if> that if we do anything out and i try to avoid long> drives if possible. Yet my siblings dont understand.> To them he looks fine . Yet we know if he does too> much he "crashes" and is prone to "crisis" and> illness. I know this cause my sister got all mad at> me because she planned a hibatchi dinner for my> brothers birthday down 45 mintues away each way and> the dinner itself is 2 hours so its at 630, i plan> on letting us go but i asked her if she could do> earlier, but it is like i wont be able to make it> then same prob w/ his birthday (zachs) . wonder if> anyone else deals w/ this. > > People not understanding why you can't let your> child exhurt themselves like everyone else> > sarah > > > > ---------------------------------> Do you Yahoo!?> Express yourself with Y!

Messenger! Free. Download> now. > > Please contact mito-owner with any> problems or questions. > > > > > ---------------------------------> Do you Yahoo!?> New and Improved Yahoo! Mail - 100MB free storage! > > Please contact mito-owner with any> problems or questions. > > >

[Guest guest]

If I had a dollar for everytime a family member or close friend accused me of hovering or not allowing the kids to have any fun I would be a rich woman.

This got me thinking, anyone else got turned in to children services? Once we had neighbors who felt the need to call and report us for NEVER letting our child out of the house. the investigator went to the school to talk to DS, and of course the school filled him in, so I got a note on my door saying we talked to your child today at school and they were convinced the child was not in danger. I get the same from DH's family, my family kind of gets it as they have had DS for more than a few hours. It also ticks me off that most doctors have no clue either, at least family and friends don't have medical degrees, but gee when the doctor has no clue.

J, Mom to , 15, mito unknown, and Mirella 8 months