Archive through September 07, 2002
TV ClubHouse: Archive: Having a special needs child.:
Archive through September 07, 2002
Angelwings | Monday, August 26, 2002 - 04:10 pm     I have a daughter who is mentally retarded. Was just wondering if there was anyone else out there that wanted to share some thoughts. |
Rose_City | Monday, August 26, 2002 - 04:34 pm     Hi Angelwings, Besides having a younger sister (age 42) who is retarded, I also own and run a nonprofit Web site for kids, teens and adults who battle chronic illness and/or physical or mental challenges called Everyday Warriors. http://www.everydaywarriors.com. On the homepage, there's a link to my parents' support network. URL: http://www.everydaywarriors.com/parents_support_index.html On that page you'll find a my links page, which will give you some excellent Web sites to check, like Our_Kids. Here's my URL for that page: http://www.everydaywarriors.com/parents_sick_kids/links_resources.html You should find some good resources here but if not let me know and I'll check around for you. Take care, Jillian (Rose_City on this board) P.S. If you need to reach me directly for help, my addy is webmaster@everydaywarriors.com |
Angelwings | Monday, August 26, 2002 - 06:23 pm     Hello Rose_City, Thank you for your reply. I will check the websites out. My daughter is 27 but mentally between 3 and 5 years old. She does not talk but uses hand signs. Take Care. |
Rose_City | Monday, August 26, 2002 - 06:38 pm     Hi Angelwings, It's all the same Web site (mine). I gave you different pages to check around. Hmmm, most of my resources in this arena are slanted toward kids, not young adults. I can see, because of her low developmental capabilities, why it would be hard for you to make connections to help her. I did a Google search and found this: http://www.thearc.org/faqs/assistqa.html This site talks about assistive technology for people with severe retardation. Definitely worth a look! http://www.cdc.gov/niosh/wdd-back.html. This URL should be an article of interest to you, too. http://www.nichcy.org/pubs/factshe/fs8txt.htm Toward the bottom of this Web page are some excellent URLS that might give you ideas, too. Wish I could be more helpful. Sending warm wishes to you and your daughter. |
Tntitanfan | Monday, August 26, 2002 - 06:49 pm     I am a retired special education teacher with a specialty in MR and behavioral disorders. The support services available to you and your daughter will depend greatly on where you live. In a good-sized city you might want to begin looking for sheltered workshops and/or community social programs so that she can make friends at her own level. In a smaller location, you might have to be the one to get a social program going, perhaps through a local church? A group home would be the ideal setting, but they are oftentimes hard to find, understaffed, and reluctant to take residents functioning at the 3 to 5 year level. Again you may have to be the driving force in getting one started - Please let me hear from you in my folder at the Members Room if I can help you in any way! The fact that I am retired doesn't mean that I am any less interested or any less a teacher!! |
Moondance | Monday, August 26, 2002 - 06:57 pm     Tntitanfan... there's the reason I like you so much! My Mom has the same degree & specialties! Takes a special person with a big heart to do the things you do! |
Babyruth | Monday, August 26, 2002 - 08:38 pm     Angelwings, I have 6 years of specialized experience working as a community RN with developmentally disabled and mentally retarded adults, if you have any questions I can help you with. Also, my partner is a clinical psychologist specializing in services to the developmentally disabled/mentally retarded. I'd be happy to ask her any questions you might have, too. |
Myjohnhenry | Monday, August 26, 2002 - 09:01 pm     Wow! You learn something new every day about the people who hang out here. I am a speech/language therapist....crrently in the public schools but I spent 12 years working for centers for developmentally disabled from birth to death and have been a respite care provider and volunteer off and on for about 15 years. I am also the parent of a child with special needs...not the same as yours, but all parents with children who have special needs face similar issues at various times in their lives. My email box is just a mouse click away. |
Urgrace | Monday, August 26, 2002 - 09:22 pm     Hi Angelwings, My 31 year old son has cerebral palsy. He is severely impaired, meaning he doesn't talk, walk, chew nor is able to function physically, but his mind is sharp as a tack. His God given eyes tell his story and he is a joy. We've had many ups and downs with the educational, medical, political and emotional side of things through the years. We have always had him living with us, and even though there have been numerous programs to place him somewhere else, it has not been something we have opted for. He does attend a MHMR day program simply because he is very social and needs to be around people as much as possible. He graduated from high school with an inpromptu standing ovation from his fellow graduates, and was voted biggest flirt his junior year. How lucky you are that your daughter can communicate with signs! Let me know if you want to talk or vent. I'm here for you. |
Reader234 | Monday, August 26, 2002 - 09:56 pm     coming late, but here I am!! I have a son (17 now) who is Hard of Hearing! I'll never forget that meeting we had when he was 3 years old. Mind you I have a teaching degree, just shy of 1 class in special ed (long story, but basically I got scared! ) I helped start a special needs foundation, working with severe mental,and physical handicaps in the county where I live. I know I am blessed, and Ihope that I help educate the kids where I work!! I always teaach a "lil" sign language where ever I go!! (as a sub, its fun while you are waiting for the "music or other special" teacher, to work on the alphabet, and then throw in other signs (like 'good' bad, etc!) I am so glad to know you!! Keep on posting!! (glad to see a post of yours too mjh!)
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Rose_City | Tuesday, August 27, 2002 - 07:55 am     To Reader 234: What a fabulous and selfless thing to do for your community! Outstanding! If you'd like me to showcase it on my Web site (my site is nonprofit--just a one-woman labor-of-love) I'll be happy to do so. The goal would be to help others around the globe start a similar program. You're very inspiring! ((((Reader 234)))) And to Angelwings: Wow, look at these fabulous folks who are coming through with their posts. They're amazing! (((((angelwings))))) |
Rose_City | Wednesday, August 28, 2002 - 10:23 am     Hi Angelwings, I just wanted to sign on to wish you the best in your journey with your daughter. I've been a longtime lurker, short-time poster at the Clubhouse, and though I'm not a shy person, for some reason I feel like a fish-out-of water, perhaps it's because I started posting so late in the game. Anyway, I think I'd feel more comfortable returning to the land of the lurk. It feels too scary out here! I'm thrilled to see all the responses you received from smart, compassionate people who have many excellent suggestions to offer you. I hope, with all my heart, you find some avenues to take that bring stimulation and enjoyment to your daughter and comfort and peace to you both. Sending blessings and love, Jillian |
Angelwings | Thursday, August 29, 2002 - 02:01 pm     It is really great to read everyone's comments. My husband and I made a very important decision to put our daughter in a Residential Home. We were turned down because of the "Budget." I live in South Carolina. We are orginally from Ohio and their system was a lot different than what it is here. I am fairly new at posting and it is a little hard for me to do it. You can really learn alot from boards like this and I think it is great. |
Tntitanfan | Friday, August 30, 2002 - 05:07 am     Keep working on that residential home placement if that is what you two feel will be best for her! You may have to write letters to politicians, gather community support, etc. to get more money in the "Budget" allocated to such programs. That may not work, but I can assure you doing nothing won't work either! |
Urgrace | Friday, August 30, 2002 - 06:29 pm     Please be sure and screen any and all residential facilities and the person/s who are the caregivers thoroughly. I also had an aunt who sounds similar to your daughter. The family found a wonderful residential home for her at the age of 50 and it was the best thing that ever happened. She blossomed. |
Vol2727 | Saturday, August 31, 2002 - 02:00 pm     What a great place this is turning out to be. I'm deaf and mainly here for the LFP's. I delurked to talk abt sign language a little bit over at the Big Brother Discussion area. I'm a stay home mom married to a hearing man. Our three yr old soon to be four in Sept. is hearing as well. However, she has Triple X. That's when a girl gets the extra X chromosome from the mother. It sometimes can cause speech delay and other problems. My daughter is a yr and half behind in her speech and language skills. She's currently enrolled in a special education class at our county school. Already since she started 2 and half wks ago, she's shown some improvement. It's very encouraging. She also has pulmonary stenosis which is a narrowing of the pulmonary valve. It's in the moderate stages. Her dr says if it's the same in Feb of next yr, he will have to do the balloon cath to widen her valve. Honestly, she shows no symptoms of having heart problems. She has to wear glasses or her eyes will cross. When you take them off, her eyes cross. If they start to cross while she wears her glasses, I'm supposed to take her back. So far so good. It's a challenge being deaf and trying to teach your daughter speech and language skills. The school is helping out a lot. She does know some sign language and is so cute when she signs. It's encouraging to be able to talk abt this here. Thanks for giving me the opportunity. vol |
Nightcrawler | Saturday, August 31, 2002 - 08:00 pm     I have worked at Bethphage Mission for 14 years. It is an organization that provides care for adults with developmental delays. Bethphage takes people with any level of developmental delay as long as they are over 18 years of age, physically. Some homes take minors. I am in Iowa, but there are Bethphages all over the US and Europe. If there is one close to you I would highly recommend it. www.bethphage.org If you would like me to run other organizations by my director, he could tell me if they are someplace he would recommend. My email is rsfeehan@pionet.net. Let me know if I can be of any more assistance. |
Reader234 | Sunday, September 01, 2002 - 01:29 pm     You're right Vol, it is turning out to be a great thread!! Thanks nightcrawler, that also is an encouraging post!! Thank you for your information as well!! |
Pagal | Sunday, September 01, 2002 - 02:08 pm     I have an 18yo nephew who is autistic. He is a great joy in my life. The pleasures he takes in the small things helps me see the world in a whole different light. |
Earthmother | Thursday, September 05, 2002 - 06:53 pm     I've been working in Special Education for 15 years now. I went to school only because my oldest had a learning disability and I wanted to know more about it and Bingo I was hooked. I have a younger son with Auditory Processing Deficency and had to have his ear drum completely re-built 4 years ago. He was born with no tubes in his ears and over the years the surgerys left so much scar tissue and deformity inside the ear he got to the point where he was only hearing 20% in his left ear and 40% in his right. The surgery has kept him from losing any more hearing but will not give him back what has already been lost. Both boys have done well and are successful so keep your heads up...I love working with my students. The pay sucks but what I get from them money can't buy..Love, Franny |
Jkm | Friday, September 06, 2002 - 07:44 am     My nephew is now in 3rd grade (part of the day) and in Special Ed the rest. He is autistic also. My sister has had the hardest times. She did have a support group in her home time, but had to drop it - vehicle problems, marriage problems, etc.... He is very tall for his age -- just in the last year for the most part potty trained. He is a good kid - but sometimes I think my sister feels so trapped - not that she would ever trade anything -- I worry about her. She's willingly given up on so many dreams for herself -- she's a good mom. Don't know what they will do when he gets older.... He's already almost as tall as her and almost as strong. When he has one of his rages -- it's getting more dangerous for her.... sigh.... She does frequent many of the support groups on line and she strongly recommends for people to join them. A couple of years ago they went to an Autism rally in DC -- had a good time. |
Vanillarose | Saturday, September 07, 2002 - 12:03 am     I work with the developmentally delayed as well. (and I find it amazing that so many of us are in the same line of work here on this board!) I see the struggles my fmailies go through on a daily basis, so I know that it isn't easy. One of my biggest frustrations is how I hear from my families how hard they've had to fight to get the educational services they need for their children. IEP's are so often one of the most stressful thing for them. They know that they will have to argue almost every goal. I see that so many of these kids actually have a pretty high functioning potential, which they would reach if they were getting adequate services. It seems to me that a lot of social workers are hired more to guard the funding for programs than to obtain services for families. Ok, enough of my rant, LOL! Like I said, I know how tough it is with these kids, but I also know that there is a positive side. I absolutely adore these kids. Most of them seem to have so much more personality, joy and love than the rest of us will ever know. |
Earthmother | Saturday, September 07, 2002 - 06:18 pm     Vanillarose, I think the number one reason for the difficulty of the IEP process is that most parents are not educated. They need to remember that they are in charge not the school. In this case honey drippin' from your mouth won't help you "the squeeky wheel gets the oil." They need to either find a child advocate or get educated and go in with both barrells loaded..Audio tape meetings and if that doesn't work, threaten to call in the state to test the child..If you stand up and refuse to back down they will take notice of you, if not they will dismiss you and move on. There are many disabilites that do not get covered with some testing. I know for a fact that sometimes tests are given to children knowing they will not qualify for special programming, because they are not using the correct testing material. It doesn't hurt to get a Dr. on your side too..this always helps. My last outburst which finally got notice is when I screamed "my child's rights to an education are being violated and I plan to find out what the state has to say about it"..1 week bingo services.. He was 7 at the time and he is 19 now, in college with an active IEP as I refused to sign off on that paperwork until he finishes school. Once you have an IEP it is up to the parent to decide to exit not the schools. |
Dustybbad | Saturday, September 07, 2002 - 09:08 pm     awesome thread !! This is my first post. We have 2 daughters 7 and 9, who are mr/dd, and autisitc. Is wonderful to see that there are such really informed people on this board!! the iep process is long and winding............I am still trying to learn all I need to know and get mmy precious babies what they need and what we need as a family. any help would be appreciated in this, we live in ne ohio. Its so hard to try to take care of them and us, and then fight to get what they need each step of the way. opps, forgot to say we have adopted these two sister, our babies now 29 and 27 grew up....... not too sure what thats telling you ;-) nice to hear all your thoughts and please feel free to email me. |
Vanillarose | Saturday, September 07, 2002 - 09:17 pm     Dusty, I think, after what I've observed from my families here in California is that the best advice I can give is that when you go into an IEP meeting, just remember that they are your daughters and that you know what their individual needs are more than anyone in that room. Don't let anyone bully you into settling for anything you feel is not in their best interest. Good luck!!! |
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