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 am70sguy
Joined: 6/11/2005
Msg: 2
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Any single parents of disabled children??Page 1 of 8    (1, 2, 3, 4, 5, 6, 7, 8)
Yep, got two, know a few parents with children with Angleman. I'll try and send you contact information and can hook you up with some resources.
 SunnyMommy
Joined: 10/29/2004
Msg: 3
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Any single parents of disabled children??
Posted: 8/11/2005 4:36:02 PM
Yeah, I am a single mom of a seven year-old boy with autism. His father rarely visits with him and has a very hard time dealing with the disability and the special needs.
 MsAngelLuva
Joined: 5/21/2005
Msg: 4
Any single parents of disabled children??
Posted: 8/11/2005 6:22:00 PM
Hi,
My daughter is 17 and Autistic. You find out who your friends really are really quick, and dating is also very interesting. Most men run for the hills when I talk about my daughter. But hey that is life in the big city and she will always come first. You sound like a great guy.. just keep giving your daughter love. Kids grow on love, hugs and kisses.
 hotblonde_mama
Joined: 8/5/2005
Msg: 5
Any single parents of disabled children??
Posted: 8/12/2005 8:44:48 PM
I have a 7 month old baby with down syndrome and CHF. He is the reason I get up in the morning and go to sleep smiling. I love him to death, his disability doesn't bother me at all, I wouldn't trade him for the world. Most of the time I forget he even has it, when I look at him all I see is my son. If other people have some problems with it, I feel like they are idiots and they can kiss my ass. I almost got fired from my job for punching a guy in the face because he was running his mouth off about "retards", it jsut really pisses me off, if you met my son you couldn't help but fall in love with him, he's just that great
 cherryofvegas
Joined: 3/24/2005
Msg: 7
Any single parents of disabled children??
Posted: 8/13/2005 3:53:35 PM
My sister has a child with downs. Her name is Shay, she is so pretty. I spend alot of time with her so when I meet a guy and show them her photo If they look twice I don' t continue to speak with them. I have three wonderful girls of my own. That's hard alone, but for someone to disrespect a child is sick. Keep up the good job all. One thing we all have in commen is we are great people. The rest of the world just sucks
 am70sguy
Joined: 6/11/2005
Msg: 10
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Any single parents of disabled children??
Posted: 8/15/2005 12:38:24 AM
I'm a big believer in internet support groups, cause it is tough being a parent of a child with disabilities. Yahoo has a lot of groups.

hotblonde, www.nas.com/downsyn/ is one of the oldest of the groups and has a great email list if you are interested. I couldn't email the info due to restrictions.

The Family Villiage is a really great one just for learning about dxs and resources too, www.familyvillage.wisc.edu

Hopefully the mods will be tolerant of the links as these sites are for informational and beneficial.

Anybody that is looking for more specific resources, just email me. I usually know where they are or somebody that does.
 blondksbaby
Joined: 4/18/2005
Msg: 15
Any single parents of disabled children??
Posted: 8/15/2005 10:26:04 PM
I have 2 children, and my youngest has Spina Bifida. She has been in the hospital just as much as she has been out...She's 3 years old. She is begining to learn to walk with a walker and hopefully will be able to move to forearm crutches.

My exhusband hasn't seen the kids in almost a year, and rarely calls to even check on them. He's only been there for one of Emilee's surgeries. (She's had a total of 14).

It's been more difficult having my son Christian, he's 4 years old, try to understand that I'm not at home with him because I don't like him, but because I have to be with Emilee in the hospital.

Thank god for the wonderful support of my family that helps take care of him while I'm gone with Emilee.

We've had to learn to adapt alot of Emilee's medical needs to accomodate to Christian as well so he can feel as involved as he possibly can.

I'm wondering if anyone else might be in the same situation I'm in has had problems with the child that isn't disabled, acting out with aggression toward either the other sibling or toward the parent, cause I seem to have alot of problems with my son doing that, with his anger more toward me, but he tells his grandparents that mommy isn't here cause she doesn't love me or like me; and what you have done to help the child understand and make them feel like they are still loved and wanted.

I'd appriciate any advise that anyone has to give, cause I'm not sure what to try to help him.

Thanks all!
Jennifer from Kansas
 am70sguy
Joined: 6/11/2005
Msg: 16
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Any single parents of disabled children??
Posted: 8/15/2005 11:34:53 PM
I know that can be a common problem with siblings. I haven't had to deal with it so don't have any personal advise, you can check out the sibling support network for ideas, www.thearc.org/siblingsupport/

The spina bifida list is pretty self supporting now and there would be other parents that have dealt with those issues too, http://www.familyvillage.wisc.edu/lib_spin.htm#Mail for a list of resources.
 dontfencemein
Joined: 10/12/2005
Msg: 18
Any single parents of disabled children??
Posted: 11/23/2005 10:02:34 AM
I'm almost a parent. In my line of work I have people with developmental and intellectual disabilities in my direct care and I would like to politely tell you: "DON'T GET MAD WHEN PEOPLE ASK!!!" Use it as an opportunity to shed light on the subject to someone obvioulsy not only ignorant to the situation, but INTERESTED. If someone asks "what's wrong with that person?"just reply. "Nothing at all. ___(Name)____ is using this __(wheelchair, kidcart, ect)___ because _(name)____ has ____(condition)____." I like to say the person's name when I am talking to people because it makes whomever we are talking to see the PERSON first and the DISABILITY second. By the way, parents, check out these great sites. www.peoplefirst.org if that one isn't valid try www.missouripeoplefirst.org and www.partnersinpolicymaking.com those sites are great. I volunteer with People First and an taking the Partners In Time course through PIP.

Without understanding, we cannot expect people who aren't used to being around people with limited abilities to accept what they do not know. It is human reaction to fear what is unknown. It is up to us to TEACH the ignorant and IGNORE the stupid!

Try to answer questions objectively and when faced with someone who wants to gawk or argue....agree to disagree!

**Funny story- My boss (66 w/ CP) and I were in the store and this creepy guy says to me "Why don't you drop the gimp and leave with me??" I politely smiled, hugged my boss real tight and said "You aren't half the man my husband is!!"" Shut him promptly up!**
 dontfencemein
Joined: 10/12/2005
Msg: 19
Any single parents of disabled children??
Posted: 11/23/2005 10:03:25 AM
If you need any info, email me. I can contact someone who can get you all of the info you need!! finallyfree21405@yahoo.com ~Amy
 jen76
Joined: 3/27/2006
Msg: 23
Any single parents of disabled children??
Posted: 3/27/2006 12:58:30 PM
hi i have 2 boys one is 6 with high functioning autism and another 3 with adhd and speech delays i love both of them its hard at times but i can't imagine my life with out them
 blssdpoet
Joined: 7/27/2005
Msg: 30
Any single parents of disabled children??
Posted: 3/28/2006 11:04:00 PM
Hi. I have 3 beautiful children, but my middle child is Bipolar. It really is horrible that people do not see this as such a disability. It is just as much as autism is. I have had people just look at me like I caused my son to be this way, that I do not "disicipline" him hard enough. His father cannot accept it, tho it is clear that he is better behaved while taking certain medications. But after a while those stop working and we have to find a new something to help him all over again. He has such a huge heart, but he cannot control the chemical imbalances in his head. I wish more people would take the time to understand this illness.
He and my youngest are both partially deaf as well...a genetic trait passed down from thier daddy. My 4 year old is quite loud no matter where we are or what we are doing. And again, because he does not "appear" to have anything wrong, it is my fault that is loud talk annoys them.
My children's disabilities may not be so serious to some people, but for me, I see the struggle everyday that they go thru.

BTW, sad to hear about the baby's mother.I hope she regains her senses.
Be Well Everyone
Anna

 missmom781
Joined: 5/21/2006
Msg: 35
Any single parents of disabled children??
Posted: 5/30/2006 4:43:00 AM
all 4 with speech delays, my oldest has adhd and my baby is deaf. however i refuse to let them be called disabled. the speech delays will work out, well except with the baby, and although deaf my baby will grow up and function normally, and the adhd has treatment.
 Wandering Spirit
Joined: 5/25/2006
Msg: 36
Any single parents of disabled children?? PDD/NOS
Posted: 5/30/2006 7:24:41 AM
I have a son with autism (PDD/NOS – non verbal). He is bright, engaging and a great communicator. He reads people very well and plays them like a pro.

Last fall I observed him go into school with a teacher holding his waist as he side stepped up the stairs. Seeing this same strangeness, I spoke to the teacher a week later. She explained that she read his file and it said he needed assistance going up and down stairs. I smiled and told her that over the weekend we went hiking and he glissaded (slid down a slippery rock field) with considerable expertise. She was surprised. He gave me a dirty look and run up the stairs and into the school.

From what I have seen, these kids are bright and capable (as much as anyone in their family). They have lots of time on their hands, so can develop some advanced skills (for better or worse). It seems that their chief impediment is language; NOT HEARING! Yet they communicate extremely well.

I have an extended rant on this topic, which might best be held for another time.

I would suggest that you toss out the “Common knowledge” and really look at and listen to your child. Sit with them and do what they do. Give then the authority to do what they want (for a while). Take them places and see what they like and don’t like. Most of all, don’t be bossy or to them vulgar. Try to communicate with a gesture, call with a whisper, guide with a feather light touch.

Then, get out the mirror. I mean no disrespect, but the greatest problem with these kids is the parents; perhaps well meaning, but often confused and misguided. Ask yourself what am I doing to really bug this kid? What could I do to address his real needs (not my notion of what a normal child is). He/she wants to feel empowered, loved and to have fun; just like any other kid.

A SPED liaison for the school (job to deny services) offered me a wonderful question. Is what you see typical for a child of that age or an artifact of Autism? Well, most of the time it is typical behavior, colored by the language deficit.

An autistic woman, pressed into public speaking when Temple Grandin could not make it to a meeting, was asked to fill in. She had no speaking skills and was very shy. I asked her if she could send a message back in time to her parents and teachers, what would it be? She did not understand the abstract nature of the question, so they moved on. Later that day she ran to the podium, turned on the sound system and announced very proudly, “WE KNOW MORE THAN YOU THINK WE KNOW”! Half the audience was confused the other half cried. These precious people are just like everyone else, but trapped in a world that does not make sense.

To a parent that asked me how I manages me son so well (he was always great, even in very stressful situation). The fellow presented as a tradesman and looked a bit desperate. I suggested that he imagine that he were in a foreign country and did not speak the language, that everyone was very bossy and constantly complained because he did not know what to do. He seemed shell shocked. A while later he came back and said, OK I get it, but now what. I suggested that he learn to talk to his son without words, but with patience and love. This seemed equally confusing to him.

When I first saw that man, he was leading his son around by the wrist and the child has a vacant look. As we left I saw him offer two fingers to the boy. He took them, smiled and they walked along together.

I was inspired to write a book with my daughter (she is already published) offering an alternative perspective on Autism and the whole industry or education and “therapy”. That may yet come to pass.


These kids are bright, intelligent and capable people. We as a society need to understand that and adjust our own prejudice and confusion to adapt to them. Interestingly, they will meet us more than half way.

Cheers,

- Rick ;^)
 Mr_Fix_It
Joined: 5/17/2006
Msg: 38
Any single parents of disabled children??
Posted: 6/1/2006 9:50:26 PM
Hello John. My name is Paul and I could not believe my eyes when I read your thread. My son is John Paul and he too has been diagnosed with Angelman's Syndrome del +. He lives with me full time and sees his mom once a week. He is an absolute joy as you well know these children usually are. I am going to the AS conference in London in July and wonder if you are going as well. Being a single father is hard enough but having special needs children makes it harder since there is no instruction manual that comes with it. My hat is off to you for looking after your daughter.
 dutchwoman
Joined: 1/31/2006
Msg: 39
Any single parents of disabled children??
Posted: 6/22/2006 5:08:56 PM
I have two boys who both have a disability. My oldest 11 has Aspergers (plus other issues) and my youngest who is 7 has severe speech delay. I totally belief just be ther for them and give them all your support. My kids surprise me everyday. My son joined the special olympics and that just did wonders for him.
My challenge has been with dating of when to introduce my kids and how.
 Laura54S
Joined: 6/11/2006
Msg: 40
Any single parents of disabled children??
Posted: 6/22/2006 9:52:42 PM
I have two children (teenagers now) and one of them has high functioning autism and ODD. He did not get a diagnosis until he was 12. It was wonderful to finally have an understanding of why he acts the way he does. His language is good his social skills suck When he was younger I was told I was a bad parent that did not discipline him enough etc. I have found that just accepting him for him is the best way. He has skills and talents that I will never have so maybe I am the disabled one here. At times it is frusterating with other people because they just do not grasp why he is the way he is and want to "change" him to be a normal child. He has stated he is happy with who he is and does not want to change.
 campgurl
Joined: 5/23/2006
Msg: 41
Any single parents of disabled children??
Posted: 6/28/2006 10:20:27 PM
I was looking at the Canadian Federal Budget for 2006 and just wanted to let you parents know what changes are heading your way with regards to Child Disability Benefit.....

Persons With Disabilities
Budget 2006 proposes to:

Increase the maximum annual Child Disability Benefit to $2,300 from $2,044, effective July 1, 2006.
Extend eligibility for the Child Disability Benefit to middle- and higher-income families caring for a disability tax credit–eligible child, including virtually all families that are currently eligible for the CCTB base benefit, effective July 1, 2006.
Increase the maximum amount of the refundable medical expense supplement (RMES) to $1,000 from $767 for the 2006 taxation year.
Over the next two years, Child Disability Benefit enhancements will provide $80 million in tax relief, and increasing the RMES will provide $25 million.

Examples—Child Disability Benefit
Megan earns $30,000 and has a child with a disability. Currently, she qualifies for the maximum Child Disability Benefit of $2,044 per year. As of July 1, 2006, Megan will receive $2,300 per year as a result of Budget 2006—a $256 increase.

Fred and Gillian also have a child with a disability. Their income of $80,000 currently disqualifies them from receiving the Child Disability Benefit. As a result of Budget 2006, they will become eligible for the benefit starting July 1, 2006. Their annual benefit will be $1,428.

Paul and Louise’s income is $100,000 and, as a result, are also ineligible for the Child Disability Benefit for their child. Like Fred and Gillian, they will become eligible for the benefit. The amount they would receive in this case is $1,028.
 iambillster
Joined: 6/29/2006
Msg: 43
Any single parents of disabled children??
Posted: 6/29/2006 2:34:00 PM
Hi,
Single dad of a 14 year old girl with Bi-Polar Disorder (used to be called Manic Depression).
I am not a bad looking guy, decent personality, decent job, etc...

I have been hard pressed to find anyone to date, I try to make my life situation clear upfront since really bad things can happen from time to time.
I am scared of integrating anyone into the family becuase my 2nd marriage ended about
3 1/2 years ago with me moving out because the daughter and the wife were on the verge of physical violence.

It is not an ex issue, her mother lives 2 states away and calls her every once in a long while.

I just don't know what to do, I have all the support, information, & I take good care of my daughter, she goes to special school for ED kids with problems like hers, but I find it difficult to just ask women out without having some idea of my situation becuase I don't want to lead
anyone on.

I get frustrated & yet the sun still comes up over the horizon every morning. So it goes.
 sweetlizzy
Joined: 6/29/2006
Msg: 44
Any single parents of disabled children??
Posted: 6/29/2006 3:05:46 PM
yes there are but it is hard for others to accept, I live in Vista California and my son has Complex Tourettes Syndrome, mood disorder nos, and ADHD he lives in a level 14 in Anaheim Hills at a theraputic horseback riding program. It is hard parental rights taken away from his father after he was born I knew my son was genetically pre dis-positioned and it would hit some day I just did not expect at age 2, he is my angle and love of my life he is almost 10 now and has been in a live in treatment for over 3 years he is my everything people just do not understand about tourettes syndrome I have heard of Angelman Syndrome I am finishing my psych degree. e me
 moosegeek
Joined: 6/29/2006
Msg: 45
Any single parents of disabled children??
Posted: 7/1/2006 3:28:50 PM
This is a great thread! I have two boys, one is 7 and autistic, one is 8 and PDD-NOS. Which is (heavy sigh - dontcha love the explanation part? could say it in my sleep) Pervasive Devlopmental Disorder - Not Otherwise Specified. Basically, has enough autistic qualities to affect his development, but not enough to get the full medical dx of ASD.

Anyone who really knows a child with any kind of a (for lack of a better word) disability has an instant bond with others in similar situations. Primary caregivers, especially. Too many instances to go into here, but it's not an easy road to walk down. Only we who walk it truly know. So my heart goes out to you all, sisters and brothers!

I do have a question, though. Has anyone has any success dating? Sometimes I don't know why I bother even thinking it could be a possibility. I like to joke that I couldn't get a man with a tazer and a net! LOL Seriously...should I just give up on the idea of eventually finding a life companion altogether and go out and get about 12 cats and get it over with, or is there hope? So much of my life is spent being Mom, I would like to be more in touch with ME!
 Wild Artist
Joined: 5/10/2005
Msg: 46
Any single parents of disabled children??
Posted: 7/1/2006 6:26:21 PM
My son is almost 15 and very independant, but it hasn't always been this easy.

He was born unable to lift his own arms and even suck a bottle. My daughter was 3 1/2 when he was born and just diagnosed with asthma. My son had doctors appointments every day and I was a single mom because my ex was abusive and I didn't stick around long enough to let him get worse. When my son was born I had to feed him and hour every other hour around the clock. I let my daughter "hold" him and help care for him. When he went in the hospital I spent the first night with him the second night at home with her and alternated so my daughter didn't feel neglected.

When my daughters asthma put her in the hospital I did the same with her, she decided he wasn't the lucky one being in the hospital all the time. I got my son to the level that he would blend in with the average child even though he had mild CP, wore hearing aids and had a speech impediment. But when he was 11 and my daughter was 15 my son had a stroke, it was harder on my daughter getting thru that year than anything she dealt with when she was younger. But once again my son can fit in. He is small for his age so being behind in school doesn't make him stand out. He needs extra help with reading, writing, and math, but his IQ is average.

My daughter started college after her Jr. year in HS, and my son has plans for college also. I was married 9 of the years I had children, but my son's stroke was right after the end of my marriage and I married when he was 3 years old and starting to "fit" in as they say.

Life can be hard enough as a single parent, throw in a special needs child and it's pretty near impossible. I have had men stop talking to me without finding out just what my son's special needs are.

This is for all you rocking parents out there:
 sweetgirlnessa
Joined: 7/12/2006
Msg: 47
Any single parents of disabled children??
Posted: 7/12/2006 9:22:30 PM
i need help. my daughter was violently shaken by her baby nurse and has severe brain damage as a result. i am lost and along and trying to survive without crying my life away. please contact me with any help you may have. i think talking to other parents who have children with disabilities might be helpful. thank you so much, Vanessa.
 sweetgirlnessa
Joined: 7/12/2006
Msg: 48
Any single parents of disabled children??
Posted: 7/12/2006 9:25:18 PM
i'm so sorry for all the stupid insensitive people who have reacted to your child. truly sorry. i actually have to turn my head down anytime is see a baby in a carriage with her mommy because it is so painful for me. my daughter was violently shaken by her baby nurse and as a result has severe brain damage. she is my only baby and my miracle and i am completely thoroughly devastated. life will never be the same again. please contact me. thank you.
 sweetgirlnessa
Joined: 7/12/2006
Msg: 49
Any single parents of disabled children??
Posted: 7/12/2006 9:27:32 PM
please contact me. my daughter has severe brain damage as a result of being violently shaken by her caretaker. she was only 5 days old. i am beyond devastated and trying to navigate my way out of this nightmare. but there is no way out. my daughter is permanently injured and my life is a flood of tears. anyone with anything kind to say or help, please respond. thanks.
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