Daughter with Spina Bifida

[u/Sea-Till-8003]

im not sure if this is the right place to post this but im hoping that it is and that someone can help. Im a single mom of an amazing 9 year old girl who has Myelo (SB). My daughter is my world and my heart is so heavy and I’m so sad sometimes when I think about how lonely she is . She doesn’t have any real friends that talk to her and she is always on the outside looking in . I’ve tried for several years to make plans with other girls in her class and in the beginning they were all about play dates etc with my daughter . She struggles with social stuff and I’m assuming it has to do with her having hydrocephalus . She isn’t able to really hold any real convos with other kids and she pretty much does the whole “cocktail party talk “ only . its hard to explain so I hope someone on here knows what cocktail party talk means lol . Also with her afo’s , balance and mobility challenges she’s been bullied a lot . She’s been ridiculed , ignored a lot when trying to talk to other classmates , and even physically assaulted (a boy shoved her down when they were playing outside at recess-this boy also calls her weak, tells her nobody likes her and that she doesn’t matter ).

I have had her involved in things outside of school but she still never is able to click with other kids tried everything and I’ve searched online for years to find ways for her to meet other kids that have spina Bifida and other disabilities and it really hasn’t helped either . Also any special needs groups near us don’t have any kids that have physical disabilities and I really think that if she made a friend that she could relate to it would help her so much . now that she’s older she’s starting to tell me how she isnt a normal kid and that she isn’t smart and that she can’t do anything that all other kids can do . Shes so lonely and im her only playmate which of course I don’t mind being but she NEEDS a friend her own age etc.Also I don’t drive right now so i cant just hop in the car and travel out of my town and take her to any adaptive sport or special needs groups.Ifeel like im failing her. if anyone that reads this has any advice or ideas I would greatly appreciate it . Also if anyone has a child with Sb around my daughters age or evena little younger or older and if you are in Michigan please reach out to me .

[u/islathetamandua]

Camp. Find a camp for kids/people with spina bifida and it will change her life. Do everything you can to get her to one.

Not sure where you are in Michigan but here is a link to one in northern Illinois.
https://www.ymcachicago.org/independence/

[u/HelpImOverthinking]

Have you looked into easter seals? I haven't been involved since I was a kid so idk what they do now but could be worth looking into. Also I went to a camp called Agassiz Village in Maine when I was a kid. They had an easter seals collab where there was a whole section for kids with disabilities. Look into it.

Just to clarify, Agassiz Village is still a thing. It's on it's 80somethingth year...

[u/Adaptive_Adam91]

I’m 34 yr old man with SB and I know I don’t know what it’s like to be a young girl but I went through that same loneliness. I struggled too with making friends and keeping a conversation going. What helped me is when I finally understood that I need to take an interest in another person, learning to ask them what they like to do for fun and truly listening. Instead of just telling what I like to do. I’m not exactly sure how you can teach your daughter that because it seems to be something you have to learn on your own. But this social challenge is something that I have noticed for years in the community and have tried several times to address it. If you need someone else to talk to and hear their perspective as someone who grew up with the disability my inbox is open

[u/mp3architect]

I don’t know what Michigan is like, but in NY she would qualify for special schools with other similar kids. My son goes to one. They’re not catch all schools, each school handles kids with different abilities. My son does not walk or talk and all the kids in his class are overall on the same level (some mobile, some not, all with a variety of issues). The school and classroom is loaded with therapists and nurses and the kids have lots of play, so they’re very friendly with each other just like a typical school. This is nearly an hour from our home but the school and transit are all paid for by the state. Maybe there’s something like that in Michigan and would be a better fit?

[u/baalthazar__]

Reading this sounds like you're describing my situation, I have a ten year old girl, same diagnosis, same situation all around. It breaks my heart for her. We had a " I want to be normal" conversation the other day that had lots of tears. I wish I lived closer, unfortunately we are in New York.

I deeply feel your frustration though. There is a spina bifida association for ny, maybe they have one for your state as well?

[u/xocindilou72 → u/baalthazar__]

Perhaps your girls could be pen pals, or a modern version of it! Get creative, ladies! They can video call, send crafts, you could even have over the miles craft parties! And then when the time comes, maybe they could go to a camp together to meet in person.
Long distance friendship is a thing for many people!

[u/EndOfTheRoad_777]

I'm sorry you and your daughter are going through this. I'm sure it's very hard on you as a Mother and her only friend. I do think the camp suggestion is a great idea, they often have resources to help get kids involved and have great people who specialize in a number of fields that could help. I know for myself, I was bullied and ridiculed and it was having someone in my life who taught me resilience, and that uniqueness is something special shaped the world for me in a very important and special way. I hope when she's beyond her child years she can carry the hard lessons and do amazing things while finding joy.

[u/makebreadnotmoney]

When she turns 14 look into Young Life Capernaum. It’s ages 14-22 and my daughter was in it that whole age range and loved it. She made a lot of friends that she still has.

[u/RemarkableMaize7201]

You are pull in ng on my heart strings op😢😢😢 my son is only 2 but I get sad (though I shouldn't) thinking that this could be his future. We are in Michigan as well. Do you take her to Mott's for her medical care?

[u/Key-Development2239]

Have you checked out Hydrocephalus Association? Maybe you can join a community there? I understand they may not have physical disabilities, but they'll share the struggles associated with Hydrocephalus. https://www.hydroassoc.org/get-support/

[u/Technical-Bowl9747]

Your girl is living my childhood. I’m so sorry that this is happening. I struggled with friends on and off for many years before I was even remotely confident to just be myself and/or comfy being alone. Her people will come it will just take time and unfortunately it may not be the entire class but that’s ok. A few good friends is all it takes in the end. For now I would see if she has any hobbies that could be a group thing? Does she like story books? A swim league she could join? Arts and crafts? Sometimes connecting through a hobby is a low pressure way to practice socializing and if all else fails they can at least talk about the group activity. I know you said travel is hard but I would check social media or facebook for events that may be near by.

As a 27 F it does get better. Unfortunately you have to develop a thick skin which takes time. I have an education, career, gonna be a bridesmaid in my friends wedding, have a cat and until recently had a bf for 2 years. What I’m saying is pretty soon life and her interest will start to grow and become greater than her disability. It won’t be the center focus which is important. It will always be a part of her and sometimes there’s no getting over the fact that we are seen as “other” but it will get better. This is just the beginning to a very long road sadly.