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Hi, I'm new to the group and have two wonderful disabled kids. My daughter is 23 and my son is 19. They both have seizures, autism, mental retardation and general developmental delay. They live at home with my husband and me. Just wanted to meet other families with like situations. Thanks! ↓
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| Name: lindalu | Date: Aug 29th, 2006 9:22 AM |
| I commend you!! on your dedication, and love you show for your children! A lot of familys can't handle caring for a MR child nevermind two. I too have a child with a disability, she is almost 21 and lives at home as well. My daughter dos'nt have any neurolagical conditions , she is just physicaly impaired. I can't begin to amagin how hard it must be on you having two children with the same condition. Have you thought about a group home? where they can learn how to live on their own one day. I know people who work in such homes, I also know families like your self who have placed their young adults in such homes. They all tell me it is grat for their child and they are so glad they did. ↑ |
| Name: foreveryoung | Date: Sep 6th, 2006 8:50 PM |
Hello-
We have a 22 year old son with developmental disabilities. He has been a pleasure! Of course, we're not like other families; but I wouldn't change it for the world. My son goes to a respite lodge locally owned and run by Heritage Christian Services; thoroughly enjoys it! He mentions it several times a day. He's been on a wait list for a group home for 7 years. It doesn't look like he'll be placed this year or next. He goes to a Day Hab during the day on a farm during the day. I work part time in the corporate world and have a part time internet business. Would you like to share more about your kids; what they do during the day? ↑ |
| Name: lindalu | Date: Sep 7th, 2006 12:17 AM |
| Sure, My daughter is attending her third year of collage, Her majore is Graphic Art & Desighn. She is also taking an acting class and a language class, she keeps herself buisy on week ends doing computer maintanance via remote. When I am not transporting her to and from school I try to keep buisy by attending the gym, and doing the basic house hold chorse. I also enjoy browsing ebay for items that I can buy and resell, of corse I will check up on what my girls are doing each day in the forum. ↑ |
| Name: foreveryoung | Date: Sep 7th, 2006 5:55 PM |
Lindalu-Are you also considering a group home for gals like your daughter with special physical needs? How do you go about reselling your ebay treasures? Garage sales?
dsjones57-What do your kids do during the day and for recreation?
I think us moms are a "breed all our own". It's difficult for other people to understand what our daily lives are really like. We can describe it; but it's sure not like "being there". Most of my friends say "I don't know how you do it!". I tell them I can't really imagine my life without this special situation! It sure is fullfilling and satisfying; tiring--yes, but satisfying too! ↑ |
| Name: lindalu | Date: Sep 7th, 2006 10:30 PM |
| Yes, foreveryoung you are so wright! you never do know what us moms go through from day to day. It is much more complicated than if you have a so called normal child. I am trully fortunate however that my daughter only has a physical disability, she will be able to live independantly one day. Of course she will need assistance from others, just as she is recieving assistance now. My daughter will soon be starting driving lessons so that she will be able to operate her own vehicle, the vehicle will be adapted with the proper driving devices for her. I am blessed to have had her but after almost 21 years of physicaly handeling her, I am tired! It wasnt untill just reciently that I hired some assistance for her. Now she has a pca that comes twice a day. I have been relieved of almost all her daily needs. Yes, I still take care of her laundry,dishes and house hold cleaning, but that is nothing compared to what I had before. She is a verry bright girl, she will do a lot in her life! Ok! enouph about me and my daughter. Tell me more about your son, what else does he enjoy? Is he in a work program? Do you ever feel like you are burning out emotionaly? I do at times. ↑ |
| Name: foreveryoung | Date: Sep 8th, 2006 3:02 PM |
Lindalu/dsjones57-
Our son is the sweetest and it seems wherever we go, someone knows him (former PT, OT, Aides, etc.). He adores people and attention, of course. He attends a Day Hab program through Heritage Christian Services (local agency) Mon-Fri from 9-3:00. They transport and he just loves being with the other "consumers". He's made lots of friends. The staff is wonderful and super-accommodating. They feed the farm animals, take care of the grounds (planting, gardening, raking, etc.) and they have a greenhouse where they grow plants and make dish gardens for the community. It's truly wonderful and stimulating for him. He'd much rather go there than hang out with me. He does go to respite 3 or 4 days a month. Again, the "Respite Lodge" is owned and staffed by Heritage Christian Services. The agency transports him to his Day Hab program on "work" days. The staff have activities planned everyday. It's up to the "residents" to decide whether or not to participate. Last month, he went to a baseball game, out for milkshakes, etc. He talks about going to the Lodge all the time. One activity that he truly enjoys is racing and Nascar. My husband and he go to a local raceway every Friday night from May-September. It gives me a break since I'm the primary caregiver, social director, events coordinator, etc. Gosh, that sounds impressive; if only I got paid for it, huh??
Oh yeah! I sure do feel burned out at times. I work 3 days a week at Eastman Kodak; as much as I hate to admit it, I think it helps me keep my sanity! I work Monday, Tues & Weds. By the time Weds is over, I've "had it" with the corporate "stuff" and I'm ready to be home; but by Sunday, I'm ready to go back. So I guess I have the best of both worlds. I KNOW I'M VERY LUCKY!
Our son has been on a waiting list for a group home for 7 years. I've been told it will probably be another 18-24 months before I should expect him to be placed. As you can well imagine, I don't know what I'll do with myself then!! Earlier this year an opportunity came up to start an internet business, so, although I'd never done anything like that before, I decided to give it a try. My main reason was to begin to redirect my focus in preparation for his "departure". I think he'll do fabulous; IT'S ME!! I'm sure you can totally understand how I feel!!
p.s. this might be more than you ever wanted to read about someone you don't even know!! :) ↑ |
| Name: lindalu | Date: Sep 8th, 2006 5:53 PM |
| Foreveryoung you didnt say to much, I enjoed every part of what you said! I hope he can be placed as soon as they said, after all you did wait 7 years! I guess another year or so wont be to bad. He is doing something constructive and also enjoyable with his spare time, thats great! He sounds like a wonderfull young man. You said you are trying to prepare for the time you will have when he moves, your not sure what to do with your self. I think all parents, wheather their child are disabled or not dread that day! and go through the same feeling of emptyness when they are gone. I do also think we parents who have disabled children tend to worry difrently, we have the same general worries, plus more! I have wondered what it will be like when my daughter decides to move on her own,how will I feel? will it be as I imagend? or will I be misrible! I guess I wont know untill the time comes. ↑ |
| Name: babyhuie61 | Date: Oct 20th, 2006 11:15 PM |
Hi there. my name is cindy. I have a 15yr old daughter who is globally delayed. Her syndrome is 22q13, has autism, retardation, acquired brain injury which is new from an accident at school, ect. her name is sarah. Send me a message when you can.
cindy ↑ |
| Name: chaos | Date: Oct 25th, 2006 4:05 PM |
| Hi, My name is Deb and I'm the mom to a 19 yo with Down Syndrome. I also have 4 other kids 12, 16, 18, and 22. I commend all of you out there with kids much more physically involved than I've had to deal with. That's not to say we haven't had some challenges as have you all. I have found as my son has aged the "oh how cute" factor wears off and the inappropriate behaviors seem more trying. I will say, my other kids are IMO much more empathetic and more complete people than other teens their ages.....I'd love hearing from anyone who wants to share the positives as well as the trials. ↑ |
| Name: Wonp | Date: Jun 16th, 2007 7:35 PM |
Hi, I have just joined this club, too. I have one stepdaughter, she lives one week with my husband and I, one week with her mother, stepfather and sibling.
My husband is old and tired of taking care of her. She is 23 years old but she does nothing at home. My husband has spoiled her a lot even her mother does the same.
He is worried about her future life. He wants her to live in a group home so she will be able to learn how to be independent.
My husband's family members said that she needed to go to group home, she needs to be away with her parents. My husband said that her name will be on the waiting list when her youngest parent reaches 55 years old.
By the time, she goes to group home, he may be old or died. I don't hate her and I feel sorry for her and for my husband, too.
How will my husband be able to find a group home for her soon??? He knew that she needs a group home to be grown up, to be independent.
Please, don't think I hate her. I am worried for her, too. Nobody can live forever, how can she live by herself if she doesn't want to grow up???
Please, give me some advice about it. I do appreciate it.
Thanks a lot, ↑ |
| Name: cathi smith | Date: Jun 17th, 2007 7:15 PM |
Hi, this is my 1st time here, just found this site by accident (what a blessing). dsjones57 your situation/life sounds so much like mine, my daughter is almost 20, and my son is almost 18, they also live at home with hubby, myself and out other son who will be 22 soon. Would love to share more but i dont want to over due my first time here...lol... Thanks, and
"Happy Fathers Day" to all you daddys out there........
Bye
Cathi ↑ |
| Name: jade | Date: Jun 18th, 2007 3:38 PM |
| r the any disabled kids that want to chat about being disabled? ↑ |
| Name: jade | Date: Jun 18th, 2007 3:41 PM |
| r there any websites that anyone no's to chat 2 disabled people? ↑ |
| Name: lifelongmom | Date: Jun 21st, 2007 8:19 AM |
| Hello dsjones57, I have two dissabled young adults also. mine are 24 and 27. We also have a grandson almost 2 thats from our youngest daughter that is dissabled. we have four kids all together. our oldest just found out she is pregnant. But we dont have to worry. she had a cromizome test done like our other 3 and she is the only one that doesnt have the bad cromizome. so we are thankful. I love my kids and grandbaby dearly, but we were hoping there wouldnt be anymore born to our family with dissabilities. Our daughter has autism severly, shes mentally as a 3-5month old, cant speak and still wears diapers. my son is develpmentally delayed, mentally 7-8 years. they go to a special school and day care all in one building, which is nice. and are doing great! my email is karensklickers@sbcglobal.net, please email me. talk to you soon. ↑ |
| Name: Liza | Date: Jun 26th, 2007 6:24 PM |
| I know the magical doctor who can cure 95% of all these horrible things, that nobody else can!!!!And Im treating my son there!!! We show amazing results, its like a miracle....write to me on lizaiv04@yahoo.com ↑ |
| Name: Angel | Date: Jul 1st, 2007 5:21 PM |
I am a mother of a special needs little girl that is 15 yrs old now.
If you would like to chat I am on yahoo instant messanger under the name loveofdolphins68
Angel ↑ |
| Name: Pink Pamther | Date: Aug 22nd, 2007 1:28 PM |
| Hi everyone I am in search of some kind of support emotionally that I can actually afford. I am the sister of a person with a disability with both of our parents dead now I am his sole family member. Mark is his name and he lives with me. He contracted rebulla from his baby shots when he was six months old leaving him with serve brain damage and a seizure disorder. Mark is the baby of the family and our middle brother died in 2005. Mother died in 2003 and dad in 2006. Leaving just he and I,. It just gets hard sometimes.... ↑ |
| Name: Pink Pamther | Date: Aug 22nd, 2007 1:59 PM |
| I guess we all have stories don't we... caring for and making decisions for another human life is the hardest thing I have ever taken on to do. Also, it is the most rewarding and Marks love is not conditional and when he smiles I know it is sincere. I am also on yahoo at pinkpamther59 ↑ |
| Name: pinkpamther59 | Date: Aug 22nd, 2007 3:27 PM |
| Name: marialeo | Date: Sep 3rd, 2007 11:42 PM |
| hi how wonderful to find this site, I am mum to David who is 17 years old he has Autisim a severe speech impairment , OCD,and a huge range of food intolrances.My son and I live at home ourselves.I also have Euan my boyfreinds son who is 15yrs old and has ADHD and developmental delay. My boyfriend and I cant live toegther or get married its just so difficult. I also have a daughter of 27yrs old who lives in her own flat and I help her out when I can.My boyfriend owns a marine shop were he sells fish and reptiles ,college has not started for David so we have been going down to the shop every day,David loves the beared dragons and feeds them he gets such joy being around the animals.I am exhausted trying to balance eveything my boyfreind gets very frustrated because he wants to marry me but I cant ever see David living in a family situation. Sorry did not mean to go on it would be nice to talk to people about how I really feel and what life is really like. ↑ |
| Name: TIA | Date: Sep 6th, 2007 8:54 PM |
| Name: Ashley | Date: Oct 10th, 2007 8:02 PM |
| Hello I have developmental delay and name is Ashley and i]am 20 years old.sometimes i become fusterated ↑ |
| Name: Debbie Doo | Date: Oct 27th, 2007 10:02 PM |
HI ,
I'm new to this site; My son Jason is 33 yrs. old and is profoundly retarded with multi-handicap. He just got a new air mattress. I'm looking for someone who would like an overlay lowair loss mattress it has both the turning system and the alternating system it is a Volkner Mark 1 it needs to be repaired which will cost 4 to 5 hundred dollars. If someone can afford to repair it and pay for shipping I would love to send it to them. A new Mark 1 is around $8,000. I just can't make myself throw it out. ↑ |
| Name: Debbie doo | Date: Oct 27th, 2007 10:06 PM |
| I forgot to put my e-mail address: capellr@peoplepc.com ↑ |
| Name: ellen | Date: Nov 27th, 2007 7:30 AM |
| my daughter is 32 years old and is still in dipers she is in a weelchar and need her dipers chang by a care giver ↑ |
| Name: Sandy | Date: Dec 3rd, 2007 7:25 PM |
| dsjones57, Sandy here. I have a step-daughter 22. CP, non-verbal. Added on to our home for independent living with staff. We are looking for a possible "get away" for an evening possibly overnight. She tires easily and doesn't care for crowds. Looking for a location??? Waterparks would be nice but not handicapped accessible. Any suggestions? Thanks ↑ |
| Name: taylord | Date: Dec 5th, 2007 1:19 AM |
| Hi, My kids are 14 and 3 both have fragile x syndrome ,one is also autistic,the 14 year old. He also had seizures but had surgery in July and has been seizure free since. Here's hoping it lasts! I would love to talk to other families as well. ↑ |
| Name: TLC | Date: Dec 8th, 2007 7:43 AM |
| Hi, You are very special and patient. Taking care of two kid with disabilities is very difficult. I have one daughter who is 35 with developmental disabilities and behavour problems. Over the years it has been very very difficult for the whole family and I coulden't do it without help. Sometime I think we will never make it! But the love we have for our children with special needs is so strong, we get lost in the our own world. That is not always a good thing! ↑ |
| Name: Lil big sis | Date: Dec 10th, 2007 12:55 AM |
| Yes im trying to seach for a chat room for my sister who is 25 living at home and is mentally disabled... she really wants a guy friend like her....some one please contact me at sarrah23.davis@hotmail.com ↑ |
| Name: Carmen | Date: Jan 9th, 2008 1:51 AM |
| Hey, new to the site here. I thought I would become a member as I am raising 4 children on my own and my oldest is drug affected. He has severe disabilities and struggles on a daily basis with depression, encopresis, enuresis, express receptive disorder, speech impediment and over all the teen age world as he is 16. Being 16 is hard enough, and to top it all off emotionally he is at about 7 years of age. I should say that I have adopted my son as well as his brother and sister. I have had them for the last 7 years. They were removed form the home by the Department of Human Services. My other children range from 11-14 so I do have my hands full as it is. I am looking for other parents and families who have walked this path and my have some resources I have not discovered. Thank you in advance, and I look forward to your responses. Be well, Carmen ↑ |
| Name: moonlightpassenger | Date: Jan 23rd, 2008 4:35 AM |
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