Topic: special need kids | |
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My son has Autistic Spectrum Disorder, ADD and language delay He is a great kid- makes me laugh everyday and i would not change anything about him. He made me who i am right now I don't have any mention of him in my profile. He is a priviledge they get to know about if they stick around long enough |
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My son is ADHD, chronic depressive, and schizo-effective. He is a wonderful, talented, intellegent young man. It takes work, and some heartache, but it can turn out wonderfully. He's on his own, has a wonderful girlfriend who loves him, and he is thriving. I couldn't ask for more.
My niece has Asperger's Syndrome. We just found this out. |
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Man that's alot to deal with. I understand heartache, but as parents all we can do is hold our heads up for them and be pick me ups when they need it. Tell the parents to never give up and to not let the niece give up either.
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How do you parents do it? My sister just found out she's pregnant and that the baby may have down's syndrome but it's to early to tell. I have to take one day at a time with my healthy 9 yr old. So I can just imagine what it's like to have special needs kids. More Power to you guys. You guys rock
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How do you parents do it? My sister just found out she's pregnant and that the baby may have down's syndrome but it's to early to tell. I have to take one day at a time with my healthy 9 yr old. So I can just imagine what it's like to have special needs kids. More Power to you guys. You guys rock In all honesty, I just did it. Didn't really think about it, would have been too much if I did think. Had to pick and choose my battles with my son, sometimes it wasn't worth the fight. I was lucky, I had my family. |
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My son has Autistic Spectrum Disorder, ADD and language delay He is a great kid- makes me laugh everyday and i would not change anything about him. He made me who i am right now I don't have any mention of him in my profile. He is a priviledge they get to know about if they stick around long enough |
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Those parent's that have Special Needs kids might want to check out what some retailer's and philathropic groups are offering to do during the holiday's. It will have various catchy names but it is usually something like Santa's Supper or Secret Santa's but what it is works out to be special shopping time where your child has a special person to assist them. Usually there is a party and often times deep discounts and store employees sometime actually gift the children. Some even include siblings. Don't wait to find one in your area because they tend to fill up fast and happen early in the season.
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Those parent's that have Special Needs kids might want to check out what some retailer's and philathropic groups are offering to do during the holiday's. It will have various catchy names but it is usually something like Santa's Supper or Secret Santa's but what it is works out to be special shopping time where your child has a special person to assist them. Usually there is a party and often times deep discounts and store employees sometime actually gift the children. Some even include siblings. Don't wait to find one in your area because they tend to fill up fast and happen early in the season. |
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This is a wonderful thread, and it should be kept alive for those who r involved in it.
I do not have children with additional support needs, but my job involves assisting young ppl/adults (16-70) who have ASN's, in their learning. I adore my job, and i am passionate about it. My main group that i work with is Lifeskills, there r 2 lads with autism, 1 with ADHD, 2 with CP and 2 with Down Syndrome. There is 10 students in the class. I spend more time with the group than their lecturers, and its my job to help them find methods in their learning in a variety of subjects. I also work with other groups with various support needs. I can only imagine how difficult it must be to be constantly positive and strong, but i also understand the feeling of just getting on with it, and doing wat u must for the love of ur child. Much respect to the parents who work so hard to make sure their children have a good quality of life and equal opportunities. _ |
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Thanks pink-lady you're probably one of the closest ppl outside of their families. You're right all we as parents can give these kids are the best quality of life and best opps. possible for their needs. Believe it or not you are apart of that because of the interaction you have on a daily basis.
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special needs are a disguise of genius.....
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Edited by
Pink_lady
on
Fri 10/03/08 11:00 AM
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Thanks pink-lady you're probably one of the closest ppl outside of their families. You're right all we as parents can give these kids are the best quality of life and best opps. possible for their needs. Believe it or not you are apart of that because of the interaction you have on a daily basis. Thankyou very much for the kind words, i have always felt it is a real honour and priviledge to be in the position im in. |
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special needs are a disguise of genius..... Thank you, I am sure we all, as parents of the special needs kids know this well. It is so nice to hear it from someone. Thanks. |
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Thanks pink-lady you're probably one of the closest ppl outside of their families. You're right all we as parents can give these kids are the best quality of life and best opps. possible for their needs. Believe it or not you are apart of that because of the interaction you have on a daily basis. Thankyou very much for the kind words, i have always felt it is a real honour and priviledge to be in the position im in. I know that I probably didn't tell them, but thank you. My son wouldn't be where he is without the counselors and teachers he's had. They were all wonderful. THANK YOU!!!! |
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Thanks pink-lady you're probably one of the closest ppl outside of their families. You're right all we as parents can give these kids are the best quality of life and best opps. possible for their needs. Believe it or not you are apart of that because of the interaction you have on a daily basis. I just wanna echo those words..as I have so much respect for those who work in this field. And Lisa, although I knew this was what you do..I don't think I've ever had the chance to tell YOU how I feel. There have been so many times that I've contemplated trying to get involved myself, but to be honest..am unsure I could handle such a challanging work AND home life. I don't keep it a secret, but I'm not really outspoken to often about my son either..at least, not about our difficulties. My son is 12, currently diagnosed with ADHD, ODD, and Rapid Cycling Bipolar Disorder. The BPD is questionable, as he has well defined cycles..but atypical symptoms. He does not now, nor has he ever benefited from the BPD mood stabilizors and no two doctors agree, however the diagnosis remains. My son, at this point cannot be safely cared for in a home environment..at least not by a single mom of two, working full time..as he needs full time monitoring for his own safety and therefore lives in a Residential Treatment center. At this point, it's unknown what will happen in 2 years when he "ages out" of the RTC. The most likely outcome will be a slightly less restrictive group home, but I continue to fight to have him at home as much as possible. After almost 3 years at the RTC, he is now able to spend time alone with me, at home or out in the community..although time is limited as my daughter cannot be present during those visits unless there are two adults present. The most frustrating issue with having a special needs child, is the stereotypes that are placed on them. My son is outgoing, makes friends easily, does very well in school (is not delayed), etc. If you met him on the street and had not read these words, you would have no reason to think that he is anything other than a "normal" 12 year old boy, and everyone that spends time with him, understands why this kid is worth all the extra effort. I've been really lucky to have found some incredible friends (and one amazing guy, who has my heart)who support me, encourage me, and help me get through. |
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If you are looking for special kids resources my best advice is just let your mail box be your friend. When ever you see a blurb in the newspaper, on tv, the puter make a note and follow back to get on mail lists.
I would recommend useing a P.O.Box. Occasionally you will get kookies that will see your name on a list and send you creepy stuff. Throw it out and don't let it get to you. Not posting your home address also keeps your house from getting robbed for medical equipment or drugs. Being on lists will get you solicited for donations but ignore what you won't or can't afford. Be really careful if you see a look alike organization or so called charity. Many are for profit of only the administrators and there are no real services. If they want you to pay a search fee it is probably a rip off. Keep in mind you do NOT have to pay for anything you do not order. A lot of what is sent by shister's you already paid for by your taxes anyway. Tons of information for people with disabilities is printed every year as public information at tax payers expense. Many of these books are available through inter library loans if you get the ISBN numbers or available in medical libraries so you don't have to spend money you don't have to throw around. Many support groups sell the books which is not a bad thing if you frequently need a quick reference but you can usually just borrow one from a long standing member. Look at the catolog form from Pueblo Colo on your tax return. BUT there are may long standing support organizationa that are HUGE HELP. Sometimes they are based on one aspect of your child's conglomeration of symptoms but some are comprehensive. Don't be afraid to cross over to a group that has the population to support activities even if it isn't exactly your child's disability. You can still learn a lot, make peer friends, and often be included. Some of the power houses like Association of Retarded Citizens, National Federation for the Blind, The Multiple Sclerosis Society, Spina Bifida, Easter Seals, National Alliance For the Mentally Ill have been around for generations. Adult's and Children With Learning Disabilities is at least 30 years old. These organizations have seen fads; treatments, and psycho-babble come and go and they can tell you if something is just a pipe dream or has real potential. Often they know about clinical trials and cutting edge treatments. Or free or subsidized programs. They will know the doctors that specialize in your situation. This is especially helpful in getting people to listen to you about your child's needs. They can give you names of people to be on your team when you have to take on school situations or hospitalizations. Join a National organization. For the money, usually just a tiny amount, you will get a monthly magazine or newsletter filled with useful info. Most will send you at least a free sample copy. Often they have great materials to educate you, your friends, their teacher's, grand parents, or neighbors. Many on line sites have directories,addresses, and sometimes annual calendars of activities, and chat rooms for you the siblings, and even the consumer. As any group I would monitor what your kid is being told but often it is friendly, positive support and encouragement to do what doctors and parents recommend. As a parent you can learn from experienced adults who have your child's issues what it is really like for your child. It can often be a real eye opener. Go to a regional conference for Special Needs Parents. Usually the Department of Health and Mental Retardation funds them. Don't get caught up in the name Governments are not making judgements when they are funding they just can't afford a seperate agency for every exceptional child. And they offer scholarships to go. They usually have tons of freebies. You will be blown away by the number of cool people you will meet. Only a select few you can take your child too so you have to plan ahead. Parents sometimes double up and make it a family vacation or at least carpool. I have even seen churches or Salvation Army find volunteers to get you there. Red Cross often helps these programs with staffing or facilities. Look in your phone book in the blue government pages or even the yellow pages. Look for United Way First Call for Help. Make a list of your needs and call them. You will be amazed. It is free. Look for what is called the D D Council or Developemental Disabilities Council of your states Health and Welfare system. They are federally funded and all their stuff is free. They usually know about stuff further in advance so you can plan to attend. They often do write ups so you can actually get to know the programs and people staffing them. Contact your child's school counselor. She usually has a list of special events but you have to give her permission to give out your address. Confidentiality is a major barrier to you getting information. You have to tell/ask people in writing to refer you. Often churches tend to have programs. If you want to stay in your faith base go up to the regional or higher levels to see what you can't find locally. If you are willing to cross faith lines talk to your Ministerial Alliance. It can be very helpful in finding and accessible church in many ways. Sometimes you have to do what I call dropping a bottle in the ocean. Write an upbeat one page letter about your child and their need (s) include a photo and send it to everyone you even remotely know. Often people do not know how to help and simply by telling them there is a specific need the response is overwhelming. Don't waste your time asking for money but be prepared to accept money in a designated managed trust account. They can be very specific and don't have to cost a fortune to set up. Most banking manager's will be glad to research if for you. Handled the right way funds will not screw up entitlements and people who wouldn't cross the street for you will help your kid. It is also a great stress reliever knowing you have something set up for their future. If you are looking for the special retail opportunities look on the store public information bullentin board and talk to the store manager. Call or contact their web sites. |
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If you are looking for special kids resources my best advice is just let your mail box be your friend. When ever you see a blurb in the newspaper, on tv, the puter make a note and follow back to get on mail lists. I would recommend useing a P.O.Box. Occasionally you will get kookies that will see your name on a list and send you creepy stuff. Throw it out and don't let it get to you. Not posting your home address also keeps your house from getting robbed for medical equipment or drugs. Being on lists will get you solicited for donations but ignore what you won't or can't afford. Be really careful if you see a look alike organization or so called charity. Many are for profit of only the administrators and there are no real services. If they want you to pay a search fee it is probably a rip off. Keep in mind you do NOT have to pay for anything you do not order. A lot of what is sent by shister's you already paid for by your taxes anyway. Tons of information for people with disabilities is printed every year as public information at tax payers expense. Many of these books are available through inter library loans if you get the ISBN numbers or available in medical libraries so you don't have to spend money you don't have to throw around. Many support groups sell the books which is not a bad thing if you frequently need a quick reference but you can usually just borrow one from a long standing member. Look at the catolog form from Pueblo Colo on your tax return. BUT there are may long standing support organizationa that are HUGE HELP. Sometimes they are based on one aspect of your child's conglomeration of symptoms but some are comprehensive. Don't be afraid to cross over to a group that has the population to support activities even if it isn't exactly your child's disability. You can still learn a lot, make peer friends, and often be included. Some of the power houses like Association of Retarded Citizens, National Federation for the Blind, The Multiple Sclerosis Society, Spina Bifida, Easter Seals, National Alliance For the Mentally Ill have been around for generations. Adult's and Children With Learning Disabilities is at least 30 years old. These organizations have seen fads; treatments, and psycho-babble come and go and they can tell you if something is just a pipe dream or has real potential. Often they know about clinical trials and cutting edge treatments. Or free or subsidized programs. They will know the doctors that specialize in your situation. This is especially helpful in getting people to listen to you about your child's needs. They can give you names of people to be on your team when you have to take on school situations or hospitalizations. Join a National organization. For the money, usually just a tiny amount, you will get a monthly magazine or newsletter filled with useful info. Most will send you at least a free sample copy. Often they have great materials to educate you, your friends, their teacher's, grand parents, or neighbors. Many on line sites have directories,addresses, and sometimes annual calendars of activities, and chat rooms for you the siblings, and even the consumer. As any group I would monitor what your kid is being told but often it is friendly, positive support and encouragement to do what doctors and parents recommend. As a parent you can learn from experienced adults who have your child's issues what it is really like for your child. It can often be a real eye opener. Go to a regional conference for Special Needs Parents. Usually the Department of Health and Mental Retardation funds them. Don't get caught up in the name Governments are not making judgements when they are funding they just can't afford a seperate agency for every exceptional child. And they offer scholarships to go. They usually have tons of freebies. You will be blown away by the number of cool people you will meet. Only a select few you can take your child too so you have to plan ahead. Parents sometimes double up and make it a family vacation or at least carpool. I have even seen churches or Salvation Army find volunteers to get you there. Red Cross often helps these programs with staffing or facilities. Look in your phone book in the blue government pages or even the yellow pages. Look for United Way First Call for Help. Make a list of your needs and call them. You will be amazed. It is free. Look for what is called the D D Council or Developemental Disabilities Council of your states Health and Welfare system. They are federally funded and all their stuff is free. They usually know about stuff further in advance so you can plan to attend. They often do write ups so you can actually get to know the programs and people staffing them. Contact your child's school counselor. She usually has a list of special events but you have to give her permission to give out your address. Confidentiality is a major barrier to you getting information. You have to tell/ask people in writing to refer you. Often churches tend to have programs. If you want to stay in your faith base go up to the regional or higher levels to see what you can't find locally. If you are willing to cross faith lines talk to your Ministerial Alliance. It can be very helpful in finding and accessible church in many ways. Sometimes you have to do what I call dropping a bottle in the ocean. Write an upbeat one page letter about your child and their need (s) include a photo and send it to everyone you even remotely know. Often people do not know how to help and simply by telling them there is a specific need the response is overwhelming. Don't waste your time asking for money but be prepared to accept money in a designated managed trust account. They can be very specific and don't have to cost a fortune to set up. Most banking manager's will be glad to research if for you. Handled the right way funds will not screw up entitlements and people who wouldn't cross the street for you will help your kid. It is also a great stress reliever knowing you have something set up for their future. If you are looking for the special retail opportunities look on the store public information bullentin board and talk to the store manager. Call or contact their web sites. |
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special needs are a disguise of genius..... Thank you, I am sure we all, as parents of the special needs kids know this well. It is so nice to hear it from someone. Thanks. |
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|
Thanks pink-lady you're probably one of the closest ppl outside of their families. You're right all we as parents can give these kids are the best quality of life and best opps. possible for their needs. Believe it or not you are apart of that because of the interaction you have on a daily basis. I just wanna echo those words..as I have so much respect for those who work in this field. And Lisa, although I knew this was what you do..I don't think I've ever had the chance to tell YOU how I feel. There have been so many times that I've contemplated trying to get involved myself, but to be honest..am unsure I could handle such a challanging work AND home life. I don't keep it a secret, but I'm not really outspoken to often about my son either..at least, not about our difficulties. My son is 12, currently diagnosed with ADHD, ODD, and Rapid Cycling Bipolar Disorder. The BPD is questionable, as he has well defined cycles..but atypical symptoms. He does not now, nor has he ever benefited from the BPD mood stabilizors and no two doctors agree, however the diagnosis remains. My son, at this point cannot be safely cared for in a home environment..at least not by a single mom of two, working full time..as he needs full time monitoring for his own safety and therefore lives in a Residential Treatment center. At this point, it's unknown what will happen in 2 years when he "ages out" of the RTC. The most likely outcome will be a slightly less restrictive group home, but I continue to fight to have him at home as much as possible. After almost 3 years at the RTC, he is now able to spend time alone with me, at home or out in the community..although time is limited as my daughter cannot be present during those visits unless there are two adults present. The most frustrating issue with having a special needs child, is the stereotypes that are placed on them. My son is outgoing, makes friends easily, does very well in school (is not delayed), etc. If you met him on the street and had not read these words, you would have no reason to think that he is anything other than a "normal" 12 year old boy, and everyone that spends time with him, understands why this kid is worth all the extra effort. I've been really lucky to have found some incredible friends (and one amazing guy, who has my heart)who support me, encourage me, and help me get through. |
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Edited by
Pink_lady
on
Sat 10/04/08 10:23 AM
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Thanks pink-lady you're probably one of the closest ppl outside of their families. You're right all we as parents can give these kids are the best quality of life and best opps. possible for their needs. Believe it or not you are apart of that because of the interaction you have on a daily basis. I just wanna echo those words..as I have so much respect for those who work in this field. And Lisa, although I knew this was what you do..I don't think I've ever had the chance to tell YOU how I feel. There have been so many times that I've contemplated trying to get involved myself, but to be honest..am unsure I could handle such a challanging work AND home life. I don't keep it a secret, but I'm not really outspoken to often about my son either..at least, not about our difficulties. My son is 12, currently diagnosed with ADHD, ODD, and Rapid Cycling Bipolar Disorder. The BPD is questionable, as he has well defined cycles..but atypical symptoms. He does not now, nor has he ever benefited from the BPD mood stabilizors and no two doctors agree, however the diagnosis remains. My son, at this point cannot be safely cared for in a home environment..at least not by a single mom of two, working full time..as he needs full time monitoring for his own safety and therefore lives in a Residential Treatment center. At this point, it's unknown what will happen in 2 years when he "ages out" of the RTC. The most likely outcome will be a slightly less restrictive group home, but I continue to fight to have him at home as much as possible. After almost 3 years at the RTC, he is now able to spend time alone with me, at home or out in the community..although time is limited as my daughter cannot be present during those visits unless there are two adults present. The most frustrating issue with having a special needs child, is the stereotypes that are placed on them. My son is outgoing, makes friends easily, does very well in school (is not delayed), etc. If you met him on the street and had not read these words, you would have no reason to think that he is anything other than a "normal" 12 year old boy, and everyone that spends time with him, understands why this kid is worth all the extra effort. I've been really lucky to have found some incredible friends (and one amazing guy, who has my heart)who support me, encourage me, and help me get through. I think its worthwhile remembering that the parents have the hardest job. The mental strength u all have is astonishing, yet u get on with it, and do as best u can. Its easier for me because i work only with these students between the hrs of 9-4.30, after that, i go home and the only problems i have r pubescent teenagers. So ladies, u say u wouldve liked to work in this field...u already r, for urself and ur children, but without the specified hrs, ur job is way harder than mine, and u prob have more patience and strength than u think. Your children will grow and develop and love you so much, its all worthwhile. Thankyou again, for those that have been so kind to make me feel a part of this thread. |
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