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February 28, 2007

Comments

Sarah banshee

Sorry I've been out of touch for a bit but just to prove I do still keep an eye on the blog! I'm thrilled to hear your pregnancy is progressing so well and so comfortably, you really deserve it.

On the resources front, although it's UK focused thought you would still be interested in this resource for parents with sight disabilities http://www.rnib.org.uk/xpedio/groups/public/documents/PublicWebsite/public_parents.hcsp

Otavia

Hiya--a cursory google search comes up with several informational sites and networks of parents with disabilities. There is stuff out there, and I'm sure you'll find it.

It never even occurred to me that you might be worried about this, because you and Steve are such smart, resourceful, and caring people that I, at least, have complete confidence that you'll manage and find great solutions to whatever difficulties you might encounter.

Kelly

Hello! I've been visiting your blog casually for some time now, but I've never had anything of any value to say. The issues you bring up here, though, are ones with which I have some familiarity (once upon a time I worked in the field of blindness skills development). I know that you're frightened about all this, and I also know that nothing some random stranger has to say will change that, but for what it's worth I bet you'll do just fine. One resource that I can recommend is http://lookingglass.org/parents/ppn.php, the TLG National Parent-to-Parent Network for Parents with Disabilities. I wish you the best of luck!

Carolyn Elefant

I'm also a casual reader, but excited to hear about this next chapter! I cannot offer any advice on resources for parenting with disabilities, but there are two other suggestions that might help. First, if you live in a neighborhood with other young families, see if you can hook up with another family to share an in home nanny. A DOJ attorney who lived across the street from me did this with her first child, and the little girl always looked like she was having a good time with the other little girl whom the nanny cared for. The shared arrangement gave each child a built in playmate and kept the costs down. Second, for play dates, have them at your place! When my daughters were young, I had my office space right in the center of the family room and of course, it was always a mess. I was always grateful to go to someone else's house. And since the other parents will stay for the play group, you'll have help watching the children and cleaning up and won't have to worry about endangering them. Finally, on the night time feedings, if you will be nursing, after the first couple of months, most moms barely open their eyes up anyway. (now if you have to measure formula into bottles and heat them up, that's another story...)

Tina

Hi, you could email Sense and ask for advice, I'm sure they will be able to give you some ideas, even though they are in the UK. http://www.sense.org.uk/
I'm profoundly deaf and almost went blind 2 years ago, it is scary. But I'm sure you will be fine and work it all out. Good luck.

Shari

Hi, I came across your blog via google search for other Usher Syndrome bloggers.
Congratulations on your pregnancy. I have Usher Syndrome Type 2 and I have two girls, ages 12 and 7. When the girls were toddlers, they caught on that mommy doesn't always see everything. They'll learn to move out of mommy's way.

Just take it one day at a time.

brett

Hi I am a blind person who lives in Denver. I found your blog by accident and thought maybe I could say something useful. First of all there are plenty of parents who are blind and do very well for themselves and there children. I encourage you to talk to as many blind parent organizations no matter what good or bad you have heard about them. The NFB for example has quite a few blind parents that attend meetings in all areas of the US. It might be helpful to join some blind or disabled email lists as well. People are usually open to questions and giving advice.
hope that helps
bb

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