Vent: Feeling lonely
amajane
member
I'm feeling stuck. I can't figure out where I belong.
Going to my mom's group or participating in activities with average babies is making me feel really awkward and out of place. These moms just can't relate to what I'm going through. I feel like Marley and I stick out like a sore thumb when all the other babies are crawling all over each other and Marley is just sitting contently in my lap, oblivious to the chaos around her. I try not to over analyze the situation but I feel a certain amount of pity from these other moms and it's driving me crazy. They don't talk to me but to say "isn't she darling! What a tiny baby!"
I desperately want to meet other moms of SNC but I just can't seem to find the right resources. I've called organizations that are resources to parents of SNC, and they don't call me back. Most serve parents and children that are school age- not babies. My local EI doesn't offer classes until babies are at least a year old.
I imagine there are other women like me in my area that are dealing with a new and?devastating?diagnosis. I know I can't be the only one who feels isolated and lonely. I tried to start a SNC group among my larger mom's group that has over 800 members and only one person responded.
Where is everyone? Have you been able to meet and connect with other moms of SNC in your community? What am I doing wrong? I love being able to talk with other moms on message boards but IRL, I'm tired of being the mom that doesn't belong.
Re: Vent: Feeling lonely
Have you tried contacting local PT's and OT's? They may be able to hook you up with other families of SNC or at least push you in the right direction.
Most of the families of SNC that I work with that are friends of other families with SNC met through charity walks, randomly in public or though their therapists. Good luck, I'm sure it is frustrating.
I know you mentioned your EI doesn't have classes until the children are one, but maybe the person that comes to your house can help connect you with other families. I know every program is different, but I have always felt that the people that work with my son are interested in helping me as well. They've made suggestions on things to do when I've talked about just needing to get out of the house. When we first started working with EI, one of the therapists mentioned someone else that she worked with that lived the next street over. We ended up connecting via email. I'm sure there are confidentiality issues, but we both expressed interested in meeting other parents in the program.
I know how you feel and what you are describing is exactly why I never did and continue not to go to 'regular' mom's groups. Good luck and I hope you feel better soon.
I would just ask any and all therapists, service cordinators, anyone you come in contact with if they know of any groups or parents that you could talk/meet with. That's what I did.
I just wanted to say that I don't know what you're going through but yet at the same time I do. It's tough to see "typical" kids doing what they should be doing at the appropriate ages and your kid is struggling so much. I feel this way every time I hear a child talking and answering questions... It breaks my heart that my child is struggling and trying so hard to do "normal" things.. ((Hugs)) I still get tears in my eyes when I think about it
It's kind of funny that you brought this up today. When Drake was getting close to discharge from the NICU one of the nurses got us in touch with another family in our small town that has a child with a trach. That mom just left me a message today about getting a support group together! You're definitely not alone!
Have you tried the closest NICU or children's hospital? They won't be able to give you names but they can give your name to other families.
I hope you can get something started!
I am sorry hear you are feeling this way. When Gregory was in speech, he was with a group of kids that had the same speech "problem" as him. It felt good to know there were other kids with the same speech "problem" has him. And it was nice to talk to a few moms about it too.
I am really good friends with a few SN mothers. I worked with them over the years and just stayed friends with them. While each of out child has a different SN, it is so nice to get together with them and talk to them about it.
You know you can always talk to any of us on this board when you need to