| Name: ramona | Date: Jul 10th, 2008 10:58 AM |
| I have a 23 year old daughter with special needs. I agree that they/we are often forgotten. Would love to visit more with parents of adult children with special needs. ↑ |
| Name: elizabeth | Date: Jul 10th, 2008 4:04 PM |
| i have 22yr old twins with downs syndrome and a13yr old with downs and mycrocephaly. our boys are our life and fill our lives with fun joy and laughter. they all live at home with my husband and myself and we would not have it any other way.oul love for them knows no bounds, ↑ |
| Name: ramona | Date: Jul 12th, 2008 10:30 AM |
| elizabeth, do you have family to help out with your boys? ↑ |
| Name: Sandra Zayas | Date: Jul 14th, 2008 10:53 PM |
| Hello, my name is sandra and I have a 8 year old that has 2 years developmental delay, has a vocabulary of 10 words,just started walking one year ago and has gone through 4 surgeries in her legs since she was three. Our family has gone through alot this past 5 years. I quit working since she was 1 year old so I can committ myself to her but I also have another daughter that just turned 13 and she has no problems but she really has gone through alot with her sister. We lost our home and everything we had in 2006. A lot of people have told me there is a program that will pay me since I am the one that takes care of my daughter, but I do not know were to look. Can anyone please tell me I would really appreciated. I always say that my daughter is an angel that was send from heaven by god for me to take care of it and you bet I will always do everything for her. I hope to hear from you soon. Thanks ↑ |
| Name: lisasing | Date: Jul 15th, 2008 7:33 AM |
| Being a single parent is not easy. Sometimes we need others understanding and help. But where is the good place for us ? www.singleparentloving.com is the largest community for single parent. There are Blogs, Forums, Live chats, and lots of hot photo galleries ! Free join! ↑ |
| Name: Babaklove | Date: Jul 15th, 2008 11:49 AM |
| Name: ramona | Date: Jul 17th, 2008 9:39 AM |
| Sandra, check with your local Social Security office or Dept. of Human Services. If you are below a certain income level she can qualify for SSI (Social Security Income). She may also qualify for some state assistance depending on what state you live. They will be able to tell you if you qualify for assistance as well. Either office should be able to get you in contact with the right people. Good luck! ↑ |
| Name: kstorm | Date: Jul 17th, 2008 11:32 PM |
| http://www.tard-blog.com/index.phtml .... this is not right! ↑ |
| Name: motherofaprincess | Date: Jul 18th, 2008 5:16 AM |
| hi we have a seriously ill and disabled daughter and need your help we have just set up a web site and forum for her please join www.foreversmiling.org.uk pleasse pass it on . this site may help you ↑ |
| Name: maria | Date: Jul 18th, 2008 5:45 PM |
| Name: Savio | Date: Jul 28th, 2008 6:39 PM |
| Name: lynne70g | Date: Jul 29th, 2008 11:44 PM |
| am looking for friends who r disaled ↑ |
| Name: danielle brint | Date: Aug 6th, 2008 12:05 AM |
| i need help with finding a group home for my son who is handicapped and mentally challenged. i can no longer deal with him!!!!!!!!!! 407-233-4300 ↑ |
| Name: lisasing | Date: Aug 6th, 2008 9:46 PM |
| Looking for a safer and easier way to meet other single parents ? Just join the largest single parent community www.soloparentdate.com for free. ↑ |
| Name: Missty709 | Date: Aug 7th, 2008 6:50 PM |
| Hi mydaughter is 47 and mentally retarded she has been involved in workshop and custodial work. My husband past 15yrs ago and there is just her and I. I find it hard dealing wirth the state for different things it sems as though the battle is always on I have siblings but they are not involved in helping me with her, I love her very much and she is on a waiting list for a placement too, but it is difficult to decide what to do and Iwould be lost without her, I drive but very little and have problems getting out to different places. I too am geting older and hoping for the best for her. I was looking for a friend to chat with and one who has the same thing in common . Its difficult and hard when there is no one to chat with all day, though I work a few hours a week as a HHA but the lonsome blues set in so I searched the web for a chat group and found this though I know not how it works its just nice to talk with other people who go throught the same thing. I am the caretaker 24 7 and sometimes like to learn how others deal with things for being alone most of the time can stress you out. So hello to all and may we all find the answer to our needs. ↑ |
| Name: Oceanlover | Date: Aug 7th, 2008 11:55 PM |
Aloha, wow...
I have an 18 yr old daughter with similar diagnosis as well as minimal use of her legs, who lives at home with me. ↑ |
| Name: ramona | Date: Aug 8th, 2008 2:43 PM |
| Hey Missty709, how many other children do you have and what are their ages? How many hours do you work? Tell us a little more about your situation. ↑ |
| Name: Missty709 | Date: Aug 9th, 2008 8:25 AM |
| I have no other children I work 6 to 12 hrs a week as a home health aid and try to find different things in the community for my daughter. my daughter was classied from birth as severely retarded been tested over the years . there isn't much to tell about myself except I understand what other parents are feeling and the work they have cut out for them as decisions for group homes, how do we prepare for out passing etc. I placed her on a waiting list for a group home but I guess I am not ready for the empty nest syndrome as she is all I have and I have very little family contact. I was young when I had her and it was fun growing with her and doing different things with her. I consider myself lucky as there are other parents with worse off situations and realize cerebal palsey and autism is also difficult. in fact I do not know if I could handle that situation . Being a caretaker and parent 24 7 is very difficult and when your child cannot think or do for themselves it is very sad and worse on the parents as we try our utmost to keep pushing ahead. To even go through all the red tape we must go through is very difficult and when they tell you there is a waiting list for placement etc Your life seems to be an open book they want to know everything and they tell you it is in the interest of the person. It seems they know more about us then we do them. As for me I was a foster parent and had many children here though only a short time I mainly did it for my daughter for friendship with others and companion ship. I also was a nurses aid, and a foster home for the protection agency of the elder. I love music, and various home projects that need to be taken care of and also try to keep busy with other things . Now I am older and am concerned with ny daughter's well being and only hope her life would be easier than mine. Thats about it. Trying to get involved with other parent's and understanding how they get through things , as I feel we can always learn from others and understand the trials and tribulations they face as well as yourself so through othe encoouaragement we can carry on. My wish is the best for all who rise our children and then some ↑ |
| Name: Missty709 | Date: Aug 9th, 2008 8:58 AM |
| Hi I just wanted to say one thing to all the parents that I am thankful to find this room. There is also a short story about a family where I was and aid. Their son had cerebal palsy and the mother told me all they had to go through in caring for their son who is now 70. H had the ability to go on with his life. He worked with the school system from home and I know many people have palsy in different stages. He was fortunate enough to have the use of his hands and got into computers and telephone work but it was difficult for him to put on his shoes and socks but somehow through his loving parents he got through it. His father passed away over twenty years ago and his mother took care of him all this time till 2006 and she passed also she was granted 92 yrs so all I can say is may the other parents be strong and though we get discouraged no one knows what life holds. I myself am discouraged at this time as to my passing and hope to recieve knowledge to know that my daughter will have the support and encouragement to be able to live a decent life to the fullest, and get the guidance she so richly deserves becaus our children are as we say children with special needs. ↑ |
| Name: Missty709 | Date: Aug 9th, 2008 9:25 AM |
| Og I feel as you do and it is just one of the trials of life, I can sense you are very angry and understand that too. There are good agencies out there who are really concerned you just haven't found the right one yet and yes it is true they pay strangers mor than the caretakers and it stinks grant you that . As for God or whatever your belief you should take it to whom ever and ask for guidance. I ask myself the same question there are so many programs for drugs, alcohol, and other addictions but nothing for our children who did not do anything nor did you but you must have faith in something try hard and I know it is hard to get rid of the anger as for many years I have been in couseling and still am, but first you must accept yourself and do not place the blame on any one accept the situation and keep on fighting as the future is not ours no matter what beliefs we have, but we are all here for a purpose and we have to accept the fact we are here and must do the best we can . Everything is in turmoil now but it will pass. I too raised my daughter in hard times and its really been very hard but sometimes we are to hard on ourselves when my husband was here it was hard too as he was ill as well for twenty years. We are all here for a purpose and we must surrender our own feelings to whom you believe in and that will be your first step . accept it was not your fault and being gifted as a good parent is your 's and that is a good place to start. The guilt will not pass but we can strive for freedom from it. I agreee as they pay all these people who know nothing about our situation they can never understand what is in our heart which is another wonderful gift and if we like ouselves we can succed in a better life. I feel your anger as I myself am going through it to even with siblings and people I thought were close to me.I am getting older and tired but pehaps through our children it makes us stronger. I hope they will make changes for our children and hope I can live to see this dream but I have to accept and trust a Higher power than myself. Take care and masy you find peace within your self and continue with the couseling as it is another gift to help you ventilate and over come the anger. Hoping you will find peace soon and live your life to the fullest ↑ |
| Name: jenn | Date: Aug 23rd, 2008 2:09 PM |
| Name: maidfle | Date: Aug 24th, 2008 5:21 PM |
| I think you and your husband are wonderful! My son just turned 18 and it looks like I can bring him home after 8 years! He's been in a wonderful private group home since he turned ten and had such awful outbursts that it put not only myself in danger, but my other 2 children as well. He has autism, mental retardation, CP, CMV as well as many other developmental delays. He's the pride of my life and I'm so proud of him! I know it will be difficult at times to have him home, but we are looking forward to it. I'm looking forward to getting some tips as well as just being able to talk to those that truely understand. ↑ |
| Name: jim | Date: Sep 29th, 2008 10:32 PM |
| pleese i cant heare im deaf@in diapers sincees 7 nooow 40! ↑ |
| Name: EmeraldEyes | Date: Oct 8th, 2008 5:52 PM |
Hello Everyone. Goodness, it took me awhile to read everyone's posts. All were very heartfelt and full of emotions. I however am NOT a mother of a disabled child. In fact, I'm not a mother at all. I work for a company in southern Ohio that caters to MR/DD persons. I have been with this company for over a year and it is the most worth-while job I have ever had. The pay is miniscule, i barely make 12 grand a year, but the relationship I build with my clients are invaluable.
As I've stated, I'm not a mother of a disabled child, so I can only sympathize with your emotions of guilt and frustration. I know that group homes get a lot of bad press, but negative rumors spread much faster than positive ones. In my company, we have 7 group homes with a total of 23 clients ranging from high-functioning individuals to behaviorals to complete dependants, all of whom recieve 24 hour care.
During the weekdays from 9am until 3pm they go to "workshop" where they work "assembly line" style and just do busy work that bigger companies contract our to this workshop. They don't have to meet any quotas or anything like that. They work as fast or as slow as they want and they are paid "by piece." Our clients visit with their friends, and sometimes family (brothers, sisters, etc.), and thouroughly enjoy being around one another. The clients that are too old for work go to a program called "Seniors" where they watch movies and play games for the day. The don't earn any money, so it's almost like a day-care in a way.
When they come home, their home life begins and we, as staff, make their dinners, clean house, conversate and chit chat with them, and basically do daily chores. We have goal sheets that are done twice a day, from serving nutritious meals, to bathing, to one-on-one time, to community outings, to safety drills, just everything they need help with. We make it fun for our clients and play games and talk about life and their struggles being disabled, always focusing on the positives in their lives.
There are so many positive things about group homes that are seriously overlooked. I do believe that just like there are unreliable and shady people in the world, there are group homes with the same characteristics. I suggest to you parents out there thinking about a group home for your child to meet each manager and staff of a home and drop by and see how a home is run. Ask the managers about the other clients living in the home and see how they react to your child. The managers should be extremely helpful and honest because they don't see your child as a great big dollar sign, they are your CHILD and each one deserves special care(at least my managers think that way!).
I hope I have shed some light onto the MR/DD healthcare world a little bit. If anyone has any questions, feel free to e-mailme at EmeraldEyes1478@aol.com
Thanks for lending an ear...erm, eye!! ↑ |
| Name: jsmith387 | Date: Oct 9th, 2008 7:31 AM |
Hi my name is Jana and i am a college student majoring in early childhood. I am currently taking a class called "The Exceptional Child". If you ladies don't mind I wanted to ask a few questions to broaden my knowledge of children and families that deal with special needs on a daily basis. During my research through this class, I was questioning what families go through when their children are in school.
Do you feel that your child/ren's school system supports/ed your child's individual needs? Why or why not? ↑ |
| Name: jsmith387 | Date: Oct 9th, 2008 7:43 AM |
Hi it is Jana again. I am so glad to see that there are chat rooms and/or group discussions to help families cope with the changes in life that must be so difficult for children and parents. I would like to ask more questions in regards to what you as parents go through on a daily basis with a child that is in need of special needs.
What changes have you had to make in your life to except your previous child?
What other discussion groups or support groups do you attend to help cope and understand the differences within children that are disabled.
Are there any daily activities that you do with your children that help you educate yourself on the disability your child has and also to encourage your child to learn and broaden their developmental skills.
For any parents that are willing to help me broaden my eduation, I would greatly appreciate. Thank you for your time. ↑ |
| Name: sj | Date: Oct 12th, 2008 11:38 PM |
an inspiring and true story of a prenatal diagnosis - a never before reported combination of mosaic Down Syndrome and Tetrasomy 8p - the story of Little Joe
http://www.youtube.com/watch?v=zSfeiauegV4 ↑ |
| Name: mommy | Date: Oct 15th, 2008 9:35 AM |
| Name: roland1073 | Date: Nov 8th, 2008 3:45 PM |
| Hi everyone! I am a student teacher and will soon be graduating! I have an assignment to interview a parent with a child with disabilities. The purpose of this assignment is for me as a teacher to learn more about how I can provide for children with diabiliites. Would any of you be willing to participate in this? ↑ |
| Name: LaBarge | Date: Dec 2nd, 2008 6:23 PM |
I have been teaching since 2002. In 2005 I received a Standard K-8 certification, and have been teaching emotionally and behaviorally disabled adolescents since 2006. I am currently taking graduate classes at Centenary College to prepare for certification as a Teacher of Students With Disabilities. One of the class requirements is to interview three parents of individual with special needs. One is to be the parent of an individual between the ages of three and ten; another is to be the parent of an individual between the ages of fifteen and twenty-one; and the third is to be the parent of an individual older than twenty-one. I completely respect any reluctance or misgivings you may have about answering personal questions posed by a stranger. I absolutely guarantee my discretion and your anonymity.
Leo LaBarge leorlabarge@yahoo.com
GED 608 Family, Society, and Children with Special Needs
Prof. S. Koeppen Centenary College Hackettstown, N.J.
I’d like to thank you for considering participating in this interview. I am very sensitive to your concerns and feelings, and I absolutely guarantee my discretion and your anonymity. The questions I’d like to discuss are:
1. Your view of your child’s needs
2. What agency, group, or individual has been the most helpful in meeting your child’s needs?
3. Your view of how your needs are being met.
4. The impact your child with special needs has had on your overall family
5. How has your family had to adapt to having a child with special needs
6. What are your greatest hopes or fears for your child?
7. What is your child’s age?
I understand these are intensely personal questions. I completely respect your feelings
Thank you for your consideration
llabargedrum@yahoo.com ↑ |
| Name: Pamela | Date: Dec 15th, 2008 6:47 AM |
| Hello, I'm a mother of a 6yr old autistic daughter. I've been looking for some support, friendship and just some adult conversation with someone who is going through similar situation. Hope everything works out good for you and your family. ↑ |
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