looking for books to help grandchildren understand

[deborahgordon]

has anyone come across any books on tumors or anything relating to the outcome from the surgery ie..facial paralysis, speech etc.? I see the surgeon on wednesday and my surgery will be within a couple weeks.  we want to be able to help the grandsons adjust to the differences they will be seeing as we are close and  my daughter thought since they use books to help the children understand all kinds of things that maybe there was a book out to help with this.  we have searched and have only found one on dealing with illness not with the physical changes they are going to see.  thank you all suggestions are welcome,  deborah

[Cheryl R]

I would not do anything before your surgery in explaining much to the grandkids until you see what you really are dealing with.    You do not know you what issues you may or may not have until after surgery.    Many only have the hearing loss and balance issues which improve over time.   You can say ahead you have some thing wrong by your ear area that the dr needs to fix.    I have had my oldest granddaughter who is almost 10 around for 2 of my surgeries and she has not been given complete full details but I am starting to say more than I did in the past.       The biggest thing a child will want to know if you are still you and be involved with them.   
                    I wish you well with your outcome.                  Many are on here longer due to issues post op.   Many do well and are gone soon past recovery.                        Cheryl R

[Pam Fraley]

I am not aware of any books but on the advice of a child psychologist, I have not told my children (ages 8 & 10) about my brain tumor.  They know that I am having problems with my ear/hearing and that is all at this point (I am on wait and watch).  The child psychologist said to give as few details at this point because they will just worry and should not be troubled by this. He said that if things change and I choose to have surgery, he will walk me through what exactly I should tell and not tell the kids.  Mostly, they just want to know that you're ok and telling them that you have a tumor just sounds very frightening.  Good luck with your surgery.  Hopefully, you will have a great outcome and all of this will be a mute point.

[arizonajack]

I found a couple of websites that address talking to children about serious medical conditions. The techniques should be easily adaptable to ANs.

http://www.helpstartshere.org/health-wellness/living-with-illness-tip-sheet-talking-with-children-about-a-parents-serious-illness.html

http://www.healthshaker.com/news/medical-comic-books-explain-serious-diseases-to-kids

[deborahgordon]

ty very much.  i know they dont need all the details but facial paralysis and other changes are going to be noticable.  every week they get to take turns using the new duct tape out, dressing up my cane.  its usually a super hero weapon , a sports team they like or just very colorful.  this had make the transition from walking unassisted easier for them.  my daughter has already gotten me many superhero masks i use now when we skype every night,  so after the surgery until the bandages are gone they will not notice and it will be normal for all of us to don our masks.

[Cheryl R]

Would it be possible for you to go to the VA hospital in Iowa City?       I know they do ANs there also usually by Dr Marlin Hansen.    The biggest thing you have to have is that  where ever you go the surgeon needs to do ANs on a regular basis!       
                                     Cheryl R

[deborahgordon]

thank you for your suggestion and actually the surgeon who i meet with tomorrow was there until 2008 when he transfered to u of i and now works with the richard l roudebush vamc in indianapolis.