Hello all hope everyone is doing good…im in need of sum advice an i know sum can help my daughter has chiari 1 an was diagnosed with it about 3 months ago. In that time period she has been thru a lot an i got her on this site (which is an awesome place to be). Anyways my/her problem is she is feeling so alone. She knows she has everyone on her but in person its like she has NO friends. She is a wonderful young lady but non of her friends really want to hang out with her or anything anymore. I know a mom can only do so much. I really wish people would understand what she is going thru. She would make plans but then the day would come an its a bad day an she would have to cancel. Now no one calls or texts her to do anything. Its sad to watch her just sit in the house doing nothing an going deeper an deeper into a depression. I cant make anyone talk to her. Can anyone give me sum advice on what i can do for her??? Please she is going thru enough an now no friends to b around. Any advice??? Thank u all hugz
Hi Kim,
As parents we hurt when our children hurt.
I asked your question to my 20 year old daughter. She has been on my Chiari ride since 2001. She thinks your daughters friends just don't understand.
It's hard for my adult friends to understand. I have lost touch with several over the years and had my heart broken many times because of it. It's not fair and I am so sorry your daughter is going through this.
We do have a lot of teenage Members that may be able to offer advice better than I can.
Have you thought about having a "Chiari Party ?"
Invite your daughter's friends over and explain to them what CM is and how her symptoms affect her daily life?
My daughter grew up with a friend who has Cystic Fibrosis and she was very open about her illness as is her parents. There were times she would miss months of school and it caused issues with her friends.
Counseling is also an option. This is very traumatizing and it couldn't hurt. I also tend to isolate myself when I am not feeling well. It's not positive and I don't want that for your daughter.
We have a Member that missed her whole Jr. year of high school. Then after treatment she feels like she got her life back. Her name is Sydney and I am sure she would talk to your daughter about her experience.
I don't know if you are affiliated with a church or even want to be but often they have youth ministers that can be very helpful in situations like this. I am not pushing religion on you in any way , just trying to help with options.
I am going to send your Discussion out to the Forum Members for additional advice. Just know I understand and you & your daughter are not alone. This is a great group of people.
Hopefully we can help you help your daughter.
Tracy Z.
Are you able to talk to the girlfriends parents? Maybe explaining the situation to the parents who can then help their daughters understand the struggle of your daughter, they will have a better understanding of what life is like for your daughter. Share Chiari info with the parents so they, too, get a feel for what life is like. How old is your daughter?
It might also be a good idea to see if there is a support group or other kids in your area she can get with who have Chiari or other physical challenges. This situation is not unique to Chiariand and she may find support from a people with other diseAses that disrupt daily life.
Kim's daughter is 15 years old.
Jo said:
Are you able to talk to the girlfriends parents? Maybe explaining the situation to the parents who can then help their daughters understand the struggle of your daughter, they will have a better understanding of what life is like for your daughter. Share Chiari info with the parents so they, too, get a feel for what life is like. How old is your daughter?
I went through something very similar as a teen. I got so sick of saying I was sick ;)actually, not sick but had a headache that I started telling my friends I was “busy” it was just as bad with the same results. They eventually stopped calling. Depression from that was difficult. I threw myself into ballet, modeling and other activities that eventually broke me out of the depression cycle as I truly became “busy” and ended up making many more friends. I started being honest with them from the get go-and I still am today with any new friend I meet. I simply tell them that I have a condition that keeps my life surprising and often painful so not to be alarmed or put off if I don’t immediately respond or have to cancel. It’s not me blowing them off, it’s my brain being a pain in the neck, literally. It’s hard enough being a teenager without a debilitating condition. I think I know what she’s going through. I would encourage her to actively try to arrange Social events with her friends and to tell her friends that due to her big brain she has to live a more spontaneous life. She will undoubtably have to become more proactive in her friendships. I know that’s hard… I wish you both the best of Luck and that her friends come around soon. It’s hard to be without peers. Hugs.
I'm a younger Chiarian, and I can agree with some of the ideas on here.
I think the Chiari party is a good idea, however I would make sure it strikes the right chords with the teens. If it's over informative, it might be too much. However, things like a jello brain mold, playing operation and fun brain themed games might work. I found some here: Games about brains.
Maybe she could make it like a zombie party if she thinks that it would be lame to have a Chiari party? I know I felt like a zombie most days so it kind of fits. :) Before they start watching a zombie movie or whatever, she can talk about how she feels, and how she's glad they can come over because of what she's dealing with. Every teen is different and at 15 many are trying to define themselves, so I'm trying to think of different ways to make it exciting for her.
I think a support group for kids coping with diseases would be a great idea. I would ask her high school guidance counselor or call and ask her PSP or the local hospital if there's any groups around that exist like that. If not, one on one counseling is always a good idea and can help her refocus her energy.
I know it was hard for me most days to do anything, but I found solace in reading and art, mainly digital art and photography. I could also read laying down, so that helped. I didn't have much feeling in my fingers, so some stuff is just not possible. Maybe you could encourage her to make new friends based on her interests instead of social cliques at school? Perhaps there's some kind of a summer camp around you at a local college (ie: cheap) that she could attend to learn more? They're usually only a couple of days long, so if she has a bad day it wouldn't wreck her summer like a full camp would.
I also felt the way! My husband and I had a dinner party so that I could explain what was wrong and what my treatment was. I helped some I have lost a few friends along the way but figured it was because they were afraid of the unknown and they weren’t really my friends to begin with. Good luck I know how she feels.
How old is she? My daughter is 13 with CM1 diagnosis this year (me as well last year). There is an organization through ASAP just for kids, you can check it out online. My best advice… let her do what she wants to as far as activities go. She will learn her limitations. She’s only a child once and we as parents shouldn’t put boundaries on them to prevent Chiari symptoms. There are support chat sites designed for kids as well. You can private message me if you’d like for her to contact my daughter. It really helps when they see they are not alone in their symptoms and diagnosis. I hope this helps and stay optimistic for her when she can’t. She will behave the way she sees others expect her to (if you let her see you worry, she will worry too…) There is a Chiari support thing on Facebook for people diagnosed in 2013. Pintrest also has some people with info & humor if you search “chiari” including my Chiari board.
Thank u so much everyone who applied an it was very helpful information. My daughter is 16 for those who didnt know. This support from all of u is amazing an come monday im gonna look into to c if there r any support groups around. Again thank u so much lots of luv an god bless u all
Abbey was in counseling before we found out about the Chiari. Once we found out about that we added a cognitive therapist who ONLY treats children who have a chronic medical illness/disorder/disease.
These type of psychologist teach the kids coping skills for everything they are going through among other things. Check your local Children's Hospital and see if they have one. That is where Abbey goes. Another great resource is social workers at the Children's Hospitals as well.
If there is a Chiari walk in your area that could be a good opportunity for your daughter to meet other teens with the same issues...or at least other teens who are familiar with her condition. I like the party idea too. Or even just have her reach out and tell her old friends that sadly she doesn't feel up to going out with them but she'd love to have them over for pizza or to watch a movie?
All teenage children can be unkind. They are afraid that they won't fit in---tow the mark of current style. Possibly not to be caused by illness but by hormones. Does your daughter have a dog? Have her train and show dog. Confidence grows, a skill is learned, and the possibility of making new friends with similar interests. There is a Junior kennel club. When she does show her dog--invite two girls from her class to observe your daughter showing "her stuff." No different than soccer, etc.
You guys are all wonderful, thank you Tracy for passing this discussion on, and for your eloquent response. And Beeba...you're so funny and so on point. I agree with charitable things...it's good to give back even for fifteen minutes (though for our son the fifteen minute car ride there is a deal breaker sometimes) --the kids are not as mean as other 15 year olds. Activities are good too because the kids see each other. Our son loved soccer but sadly an't play, he's self limiting but he does go to tennis, believe it or not, whenever we can. We pay for a town thing, an 8 pack, and he may make half of them. It stinks but when he goes, he is so happy it's worht it for that smile! Our daughters are 12 and 14 (don't have chiari) and sometimes just get left out, having nothing to do with their brother. Our girls are not on facebook but I definitey agree, social networkign helps as the kids can't seem to engage with each other without it. Our little guy (he is 8) and missed 7 months of first grade. He doesn't want to go to the beach because he gets too dizzy and believe it or not, the wind in his bare feet toes hurts sometimes. We live near the beach so our 12 and 14 year old can't go many places if he can't too. We've had to reach out and try to explain and in doing so, you're real friends, and theres shine through and endure. We will pray for her and you and all of you. XO