| Seedlings Braille Books for Children |
[29 Aug 2007|05:01pm] |
Hello Everyone!
My mom, Debra Bonde, is the founder and director of Seedlings Braille Books for Children and she is currently in the running for an award which would provide Seedlings with $10,000 to continue their mission of providing blind children with affordable books! This year, a "people's choice" award has been added, so that an additional $10,000 will be given to the charity of the finalist who receives the most online votes.
If you could please spare a few seconds and go to http://www.standonabetterworld.com/vote/index.html and vote for Debra Bonde in the "National" category, we would really appreciate it!
For additional information, behind the cut is a statement that Seedlings has sent out about the award
( Read moreCollapse )
Thanks so much! Let me know if you have any further questions or anything :)
-Megan
(x-posted)
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| Toy Recall |
[02 Aug 2007|11:57am] |
Hello Everyone
The following link contains information regarding the recall of several toys that have been found to contain lead levels in the paint used on the toys. Instructions regarding action to take if you own any of these toys can be found on this link.
http://service.mattel.com/us/recall/39054_IVR.asp?prod=
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| tours |
[21 Jul 2007|10:27am] |
Hello Friends,
Yesterday I went with a friend of mine on a city tour of Spokane (um…). My friend is a tour guide and is being trained along with two other people to be professional tour guides for the city. On this particular run-through of the tour, the trainees were supposed to bring two people to act as an audience and I had the privelige of tagging along.
On our way to meet the bus, I asked out of curiosity if, at any time in her training she and her classmates had been given any instruction as to how to facilitate individuals with disabilities on tour. They had not.
As it turns out, the only audience consisted of myself, one other adult and two children. One tour guide took her turn at the microphone for her portion of the tour and, in an attempt to make things interactive for the kids said there’s this tower,” (blab la bla) “Now, I want the first person who sees the tower to put their hand on their head. Well, almost everyone, someone is obviously excluded so we won’t worry about her…” Wow, I’ve lived for 20 years with humanity’s lack of respect for diversity etc. Somehow, though, this bothered me more than I expected.
These are tour guides in training. A tour guide can make or break a vacation experience for an entire family (or more). So, to take a proactive approach, I was wondering if anyone has stories or suggestions about tours and individuals with disabilities. What have your experiences been? What could have made it better? Was it a walking or a bus tour? I would like to combine any information received in to a hand-out for my friend and so that she may distribute the ideas to her colleagues. And, in case you’re looking for a career change, there is obviously a serious need for actual training on facilitating people with disabilities in this field.
Thank you all very much.
-Jess
(Cross-posted everywhere found even slightly relevant)
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| siblings? |
[27 Dec 2006|01:06pm] |
hi there,
i've just set up a community for the siblings of children/adults with a serious illness or disability. please visit  sib_support. thanks !
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| Introduction |
[24 Aug 2006|02:01pm] |
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Hello, I have recently joined this community. I am not a parent, but I am currently in school obtaining degrees in Early Childhood and Special Education. I joined the community so that I may learn: the better I understand the families with whom I am working, the better I may serve them. Also, since I have been totally blind from infancy, perhaps I can be of some help and encouragement to you as parents. Feel free to ask questions.
Also, I have recently created a community for christians who are interested in caring for children with special needs. If you are at all interested, check out:
http://community.livejournal.com/all_families/
I apologize if you have met me several times. This message, or a version of this message, will be posted in many places. Have a great day!
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| New member |
[19 Jul 2006|12:54pm] |
1. Name: Jenissee
2. Location: Milwaukee, WI
3. How many children do you have? 3
4. Tell us about the child/children who brought you here? My 3 month old son, Elias, has just been diagnosed with severe Optic Nerve Hypoplasia with midline defects. He also has nystagmus in both eyes. We believe that he does have slight vision as he occasionally trails and responds to light.
5. Do you have a special website you would like to recommend? blindbabies.org
6. What toy do you find your visually impaired child love the most? anything that makes noise
7. Care to recommend a good book your child loves? none at this time
8. Have any specific questions? I'm just looking for general support and help with "what next?"
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| Please sponsor! |
[13 Jul 2006|04:44pm] |
I know this is aggravating and obtrusive but I am raising money for The Schepens Eye Research Institute via the Blogathon. The Schepens is a research organization devoting time to fight blindness whether it be caused by nerve damage, macular degeneration, retinal detachment/damage, etc. The Blogathon is a twentyfour hour marathon where writers publish posts/blogs every thirty minutes. Their sponsors pay per hour or a lump sum. PLEASE Sponsor me. I have glaucoma and suffer optic nerve damage so I am not totally new to the pain - far from it. Click on the links below to: Sponsor me and visit my website where my Blogathon Posts will be posted.
Sponsor me! [opens in new window]
Precious Sight - My Blogathon blog [opens in new window]
(cross posted like crazy...)
(Mods, if you wish to delete this, you can. I will not be offended nor will I repost this.)
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| Free Braille kit |
[15 Jun 2006|01:19am] |
This great kit includes, a children's book, a braille place mat, braille alphabet magnets, a learn to read braille book, flashcards and all sorts of great stuff. Order one for yourself and learn braille and get a great book for your kid! ITS FREE!!!
http://www.nbp.org/ic/nbp/readbooks/request.html
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| New Messageboard |
[13 Jun 2006|01:41pm] |
Hey guys,
I created a messageboard for parents who have disabled children. Please come by sign up, and post away!
A FAMILY ZONE
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[16 May 2006|09:59pm] |
I made this video of Miriam for my mother in law who kept insisting Miriam was "broken" after she got stung by a brown recluse. I wanted to her to stop telling everyone what I know she was telling them, that Miriam couldn't walk and I wouldn't even do anything. I kept telling her Miriam was fine, that she was going through a stage where she didn't want any help to walk. Now she believes me...lol Anyway, check out the video...only for my livejournal!
Miriam playing with mommy
now I was sick and stuffed up, so forgive me...I sound crazy. And yes I am jumping...lol
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[28 Apr 2006|03:21pm] |
It has been so long since I have updated and Miriam has done so much since. She can now stand up on her own, she can trail things like furniture and her bed, she talks - mama, dada, bubba, no, up, uh uh...etc..., she dances, sings, plays with toys and even picks her nose...lol. Right now we are working on getting her to feed herself with a spoon or fork. She just gets so frustrated when trying. At the moment she sees a vision teacher, speech therapist, occupational therapist, orientation and mobility therapist, and a physical therapist. So this mother has a FULL week and that does not include the things my 4 year old does throughout the week. Anyway, that is where Miriam is besides the fact that she has gotten HUGE!
I hope everyone here is doing well and so are your little ones!
Later!
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| Light house for the blind... |
[13 Nov 2005|03:31am] |
I had to post this great store in here for those of you who haven't seen it yet. There are just so many great things out there that I didn't know about. I posted this elsewhere and I am sure that there are hundreds of places just like it but it just amazed me. So many of the fears I have written about so often were laid to rest by visiting this store.
I know my husband loved the chess set. He got so excited at the idea of Miriam being able to sit down and play chess with daddy and her not have to learn every inch of the board. We were going to buy him a set for Christmas, I think we are holding out for this one!
http://www.datamonitor-datastore.com/catalog/gamesP1.shtml
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| SO cute:...Bah humbug! |
[11 Nov 2005|12:36am] |
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Do you know what I hate the most in the entire world? When people comment how cute and peaceful my daughter is when she is asleep when she is wide awake. I know they are just ignorant to the fact that she is blind but it kills me! Once I had gone into 7-11 and the clerk said "oh I wish I could sleep that peacefully" I didn't really hear what she had said so she repeated herself looking at me like I was crazy which really pissed me off. I looked down at Miriam in her stroller (we had walked there so she could have been asleep) and replied "she isn't asleep" and she got bitchy and responded with "well she isn't now you woke her up". It wasn't even as if I had yelled, I had politely responded. I looked at her all pissed off for getting snooty with me and yelled "she's NOT ASLEEP she’s blind stupid". I felt bad all the way home for yelling at her but it hurts so much when I have to be reminded of it every five minutes. I mean, we except Miriam for everything she is but it hurts to respond because we really don’t know what to say. Do we politely tell them she is blind or do we just walk away feeling like crap? Does anyway else have a problem when people do this or is it just my husband and I?
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| TOYS for the blind |
[09 Nov 2005|02:36am] |
Well Wendy from ECI came today and we spoke about a few places that offer aid for the blind. She also gave me a pamphlet with information but none of the website links work so I guess I am going to have to call the numbers (when do I have time for that?). The pamphlet is a few years old but some of the things looks really cool. They also have a page with links to places with very awesome toys for disabled children, I have included a few of those links.
This place has some very good touch and feel books as well as toys. I think I am going to be getting the classical Casey bunny. You press on different parts and she plays classical music. The stuff is a little bit expensive but it is really neat stuff.
www.discoverytoys.com
Ok this one was so cool because it has for sale one of those killer abacus toys you always see at the DR’s office. It cost mucho dinero but man would I love it..!
www.comeplaytoys.com
And then they gave the link to this page (the main website has some nice info as well) with links to TONS of places.
www.disabilityresources.org/TOYS.html
-Later-
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[22 Oct 2005|01:07am] |
Miriams vision therapists came today from the school and told us what we already knew. They said she was right on track as far as needing physical and mobility therapist. They said everything interfering with her movement now was because of her fear of space due to her being blind. So we will be seeing quite a bit of the vision teachers for the next few years. They were very impressed however to how excited and open she was to new things. Miriam hasn’t much fear, she is just very unmotivated when it comes to moving out of her comfort zone which is completely understandable. I am very excited to have all of this going on, they are coming back on the 28th to get started with the good stuff. They will bringing toys, literature and a bunch of other information and techniques we can use to help her. I am really concerned about her speech but they said that everything we are doing is exactly what they would tell us to do. It really amazes me that our instincts to teach her have always been right on the money because they tell us almost nothing we haven’t been doing since the day we found out she was blind.
Tomorrow we will also be going to look at several houses that we might be buying. They are in or around Azle and Fort Worth so we will have to change ECI again but they said it should be a lot easier since it is in the same county. They also said the ECI program there is excellent and offers just as much as here in the big city and that is great! Apparently most of the workers are people who were transferred from here and they should visit her at least once a week there. I can't wait until we found out about everything.
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[20 Oct 2005|03:46am] |
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mood |
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Miriam sat up today for the first time. Well actually it was the second time but last time she was already a half way up sitting on a pillow so we didn't really count it. But this time she really did it and she was in bed of all places. I am so proud! Miriam has a horrible problem understanding space. It frightens her half to death to do anything other than lay around so this is a huge step forward. I cannot wait until I walk in her room and find her sitting up again!.!.!.!.!
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[14 Oct 2005|07:57pm] |
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Man it is so frustrating trying to get Miriam to handle a spoon and drink from a cup. They want us to get her doing it herself but she throws fits. The damn sippy cup terrifies her and she is more interested in chewing on the spoon than eating with it. I wish I knew better ways to handle this. What do I do to keep her from being so scared of new things? I can’t even get her to sit up on her own. I mean if you put her into sitting she will sit but she cannot do it by herself. I am scared that she will be 3 and still not able to eat on her own, sit up, walk, or talk. She doesn’t even try to talk. I would give anything to hear even a second of baby babbling. Just a little bit of babababababa or mamamamama. It would absolutely be music to my ears!
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| First post! |
[12 Oct 2005|10:58pm] |
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mood |
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cheerful |
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I am the mother of a beautiful baby girl named Miriam. She has Septo Optic Dysplasia and also suffers from pan-hypopituitarism. She is pretty much completely and forever blind unless some miracle comes to us but we have learned to cope with it. I created this community because it is very lonely as a parent of a blind child. We have more questions than jeopardy and nobody who truly understands to answer them, not even our daughters caseworkers. Not to mention we don't have any friends due to the fact that everyone gets uncomfortable when they find out about Miriam's illness.
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