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I'm gonna just jump in. :)

post #1 of 5
Thread Starter 

This is my first post on this site, so hi, all! I believe I know some people here, although I am not sure of screen names.


I have a baby girl with special needs. She turned two in October. We're don't have a diagnosis, although we have been testing nonstop for over a year now.

Right now, at 2 years 2 months, she just started walking, has a vocabulary of about 20 words which she uses inconsistently, and is in general functioning on the level of a one year old. We've come a long way to get to this point! Thanks to extensive therapy (4 special ed, 3 speech, 2 physical and 1 occupational therapy sessions a week) she is doing as well as she can right now. Everything she is able to do had to be taught and taught and repeated until it stuck. When she was one, she wasn't crawling, rolling over, transitioning in and out of sitting... she didn't care about toys. She couldn't eat solids. She learned to crawl at 15 1/2 months, learned to chew at 2 years old.

But emotionally, she is way ahead of her development! Whenever one of her brothers is crying, she comes over and gives a hug. When she is eating a snack and a someone sticks their hand out, she knows to give them some without being taught to do so. She is very attuned to people's feelings, and she loves to snuggle!


I always thought that I'd have a special needs child someday. I just assumed that since I have always enjoyed working with SN kids and adults (volunteered all through high school) that I would be blessed with one. But it's way different than I ever expected. I didn't realize all the dimensions there can be. The loneliness of not having anyone to connect with because of no diagnosis. I never thought I could be jealous of a family with Down Syndrome kids because they have a huge support system. So I decided to search around for other families of undiagnosed kids. That sounds like a group I can find a place in. :) I have a local support group, but the families there have older kids. They have been together for years and years and I am new. I don't understand the terms they use and all that. It's just hard to fit in.

So I hope I can find other mamas of undiagnosed kiddies that I can connect with. :D

post #2 of 5

welcome!  Wow it sounds like your daughter has come a long way in the last year!

post #3 of 5

Welcome! I have a 17 month old, although she is diagnosed. I do understand feeling envious of the Down syndrome families. My DD has a chromosome difference that is pretty rare, so we have a group, but it is small and spread out through the world. I think you will find a lot of support here. 

post #4 of 5

Your little one sounds a lot like our son!  He just started toddling at 24 months, and now, at 28 months can go pretty far, maybe 100' or so on foot.  He has a walker and orthotics for support.  But like you mentioned, the level of empathy expressed is just off the charts :)  We have a dx, but it's not comprehensive...so I guess he's not "fully" diagnosed.  


I just wanted to let you know that your post really hit home for me, on a lot of levels.  Feel free to send me a PM if you want to chat :)

post #5 of 5
Thread Starter 

Thanks for the welcome, everyone! Can't wait to get to know you all better. :)

lilmissimpatient, I'm going to PM you (tonight when everyone's asleep and I can think straight)!

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